Wow! What a whirlwind!
Christmas has flown by and New Year's is just a couple days
away! The girls of course asked Santa for EVERYTHING and thanks to more then a couple of angels (the ALS type included) they got that and then some.
Christmas Eve we were shocked when Santa showed up with about 30 people delivering everything from bikes and toys to food and toilet paper. The Brunswick Eagles - a group mom has been involved with up until last Christmas apparently visited us on a suggestion of a fellow PTA mom. Our house is so full of boxes from them you would swear we're moving.
It had also been nice since Jeannie and family are in town. All the girls got together last week to make Christmas cookies. Seeing as how are for bakers were 6, 3, 3 and 1 it actually went quite well. We had dozens of cookies for Santa.
New Year's Eve we will be hosting a sleep over with Kaylee and Gavin. I am actually kinda excited.
Lastly, as I am updating this we are sitting in ER waiting for Jim to be seen. He has been very light headed lately. For awhile we thought one of his meds was causing his blood pressure to drop. We have cut that medication down to the minimum. Anyhow, today Jim nearly passed out while getting his teeth cleaned. After calls to a couple of his doctors here we sit.
Whether this is related or not - Jim also had a fall last night. Nothing serious but shocking. He said he tripped over the dog but they were by me and not near him. I only kinda saw what happened but it looked almost like he tried to sit on, an imaginary chair and just fell back. Is this his first ALS related fall? I guess only time will tell.
Wednesday, December 29, 2010
Sunday, November 14, 2010
What's going on....
Well, Jim has actually been feeling pretty good. He got a TENS unit to help with the pain in his side - trick it getting him to use it. He says the pain hasn't been as bad - but I am not sure if that is 100% truthful. The last time he used the unit the patches bothered him so he may not be using it because of that. We'll see.
I have had a couple of interesting "observances" with the kids. Ruthie was with a friend of mine when she told her "Daddy's muscles hurt him so he don't walk good." So yes, she does notice. On the flip side Mikayla resently told my mom that "daddy's medicine must be working because he's remembering more." Not sure how true that is. I'm not seeing it - but at least the incidences of him throwing out important papers and homework seems to be on the decline.
We return to see the FTD neurologist on November 23. I am eager to hear what he has to say. We also have a follow-up with pain management coming up but I am not expecting much news from that.
As for me apparently my body has decided that we don't see the doctor enough. SO after about 2 years of increasing symptoms I was diagnosed with fibromyalgia last week - 2 days before my birthday. I have been trying to pass all the symptoms onto first working so much then all this with Jim. But really things are calmer when it comes to him. I am experiencing extreme insomnia and other sleep issues, headaches and body aches. I feel like I have the flu but never get the other symptoms. The doctor wants me to return to the sleep center for follow-up to see if we can work on the sleep issues first. He would also like me to follow-up with a counselor or psychologist. Personally, I tried that and quit after feeling like all I was doing is explaining ALS and FTD to her. My FTD group is great therapy. I will stay with that for now. I will also be following up with a few more doctors. Nothing scheduled yet - but working on it.
Other then that things are as normal as they get in our house. I am now volunteering 2 days a week at Mikayla's school. I help with their accelerated reading program and am proud to report that Mikayla is leading the class in the program. She is not a strong reader but she loves to read and be read to. She has completed the most books in the class. She reads to daddy a couple times a week. She retains everything - sometimes better then I do! She is also being tested for ADD. I am not sure if she has it yet or not. That appointment is also coming up. Sometimes I am convinced she does other times I am sure she doesn't. Either way I think that it is good to get it addressed early before it becomes a real problem.
I also have decided to volunteer one day at Ruthie's school. (Mikayla's is just a couple hours/week. So Wednesdays I leave her school and go to Ruthie's.) Ruthie is having some anxiety issues at school (that's my kid alright!) She has much improved since the beginning of the year but I hope this will get her there the rest of the way. I have made many little friends in her class and it is pretty fun. I get to eat lunch with them and everything. The teachers are rotating which of my new friends get to sit at our table since they fight over it. Ruthie is getting a kick out of me being there so I enjoy doing it.
Well that is all for now. In case I don't check back in before - Happy Turkey Day!! Remember, be thankful for every day and what you have not what you want.
I have had a couple of interesting "observances" with the kids. Ruthie was with a friend of mine when she told her "Daddy's muscles hurt him so he don't walk good." So yes, she does notice. On the flip side Mikayla resently told my mom that "daddy's medicine must be working because he's remembering more." Not sure how true that is. I'm not seeing it - but at least the incidences of him throwing out important papers and homework seems to be on the decline.
We return to see the FTD neurologist on November 23. I am eager to hear what he has to say. We also have a follow-up with pain management coming up but I am not expecting much news from that.
As for me apparently my body has decided that we don't see the doctor enough. SO after about 2 years of increasing symptoms I was diagnosed with fibromyalgia last week - 2 days before my birthday. I have been trying to pass all the symptoms onto first working so much then all this with Jim. But really things are calmer when it comes to him. I am experiencing extreme insomnia and other sleep issues, headaches and body aches. I feel like I have the flu but never get the other symptoms. The doctor wants me to return to the sleep center for follow-up to see if we can work on the sleep issues first. He would also like me to follow-up with a counselor or psychologist. Personally, I tried that and quit after feeling like all I was doing is explaining ALS and FTD to her. My FTD group is great therapy. I will stay with that for now. I will also be following up with a few more doctors. Nothing scheduled yet - but working on it.
Other then that things are as normal as they get in our house. I am now volunteering 2 days a week at Mikayla's school. I help with their accelerated reading program and am proud to report that Mikayla is leading the class in the program. She is not a strong reader but she loves to read and be read to. She has completed the most books in the class. She reads to daddy a couple times a week. She retains everything - sometimes better then I do! She is also being tested for ADD. I am not sure if she has it yet or not. That appointment is also coming up. Sometimes I am convinced she does other times I am sure she doesn't. Either way I think that it is good to get it addressed early before it becomes a real problem.
I also have decided to volunteer one day at Ruthie's school. (Mikayla's is just a couple hours/week. So Wednesdays I leave her school and go to Ruthie's.) Ruthie is having some anxiety issues at school (that's my kid alright!) She has much improved since the beginning of the year but I hope this will get her there the rest of the way. I have made many little friends in her class and it is pretty fun. I get to eat lunch with them and everything. The teachers are rotating which of my new friends get to sit at our table since they fight over it. Ruthie is getting a kick out of me being there so I enjoy doing it.
Well that is all for now. In case I don't check back in before - Happy Turkey Day!! Remember, be thankful for every day and what you have not what you want.
Wednesday, November 3, 2010
FTD vs Alzheimer's Disease
Clinical Features of Fronto Temporal Dementia (FTD) and
Alzheimer's Disease (AD)
(information according to the Alzheimer's Association)
AGE OF ONSET:
FTD: 50-60's, rare after 75. Younger than AD. (Jim was in his early 30's)
AD: 70's and up. Increases markedly with age.
EARLY BEHAVIORAL PROBLEMS:
FTD: Common. Often mistaken for a psychiatric disorder.
AD: Unusual, other than irritability, usually unchanged.
SOCIALLY INAPPROPRIATE BEHAVIORS:
FTD: Common early in course. Often mistaken for a psychiatric disorder.
AD: Not common early in course. Usually seen later in disease.
MEMORY IMPAIRMENT:
FTD: Less prominent in early course.
(Jim's short-term memory was less than 50% 1 yr ago. His long term memory is good.)
AD: Early and profound impairment.
LANGUAGE PROBLEMS:
FTD: May have early speech impairment (progressive nonfluent aphasia type) becoming mute.
(Jim has some impairment in voice projection and "slurring.")
AD: Usually associated with memory impairment (recall of names, words.) Speech affected later
in course.
VISUOSPATIAL DEFECT:
FTD: Rare in mild to moderately impaired person. (Jim can get us out of downtown better than GPS!)
AD: Common. Gets lost in familiar territory.
MOTOR SKILLS:
FTD: More common in FTD with motor neuron disease (ALS). (no explanation needed I think)
AD: Less common until late in course.
MOOD:
FTD: Marked irritability (Jim -check), loss of pleasure, difficulty understanding or describing emotions (check), euphoria, lack of guilt (check), apathetic (check), lack of empathy (check)
AD: Sadness, tears, loss of pleasure, apathy, guilt
PSYCHOTIC FEATURES:
FTD: Usually jealous, may have bizarre behaviors, obsessive/compulsive behaviors, rare persecutory delusions. (Jim has mild OCD tendencies)
AD: Usually have delusions of misidentification (not recognizing family) or persecutory. Usually occurring in middle or late stages.
Also, check out the FTD documentary "Planning for Hope."
http://www.planningforhope.com/ password: ftd2010
Alzheimer's Disease (AD)
(information according to the Alzheimer's Association)
AGE OF ONSET:
FTD: 50-60's, rare after 75. Younger than AD. (Jim was in his early 30's)
AD: 70's and up. Increases markedly with age.
EARLY BEHAVIORAL PROBLEMS:
FTD: Common. Often mistaken for a psychiatric disorder.
AD: Unusual, other than irritability, usually unchanged.
SOCIALLY INAPPROPRIATE BEHAVIORS:
FTD: Common early in course. Often mistaken for a psychiatric disorder.
AD: Not common early in course. Usually seen later in disease.
MEMORY IMPAIRMENT:
FTD: Less prominent in early course.
(Jim's short-term memory was less than 50% 1 yr ago. His long term memory is good.)
AD: Early and profound impairment.
LANGUAGE PROBLEMS:
FTD: May have early speech impairment (progressive nonfluent aphasia type) becoming mute.
(Jim has some impairment in voice projection and "slurring.")
AD: Usually associated with memory impairment (recall of names, words.) Speech affected later
in course.
VISUOSPATIAL DEFECT:
FTD: Rare in mild to moderately impaired person. (Jim can get us out of downtown better than GPS!)
AD: Common. Gets lost in familiar territory.
MOTOR SKILLS:
FTD: More common in FTD with motor neuron disease (ALS). (no explanation needed I think)
AD: Less common until late in course.
MOOD:
FTD: Marked irritability (Jim -check), loss of pleasure, difficulty understanding or describing emotions (check), euphoria, lack of guilt (check), apathetic (check), lack of empathy (check)
AD: Sadness, tears, loss of pleasure, apathy, guilt
PSYCHOTIC FEATURES:
FTD: Usually jealous, may have bizarre behaviors, obsessive/compulsive behaviors, rare persecutory delusions. (Jim has mild OCD tendencies)
AD: Usually have delusions of misidentification (not recognizing family) or persecutory. Usually occurring in middle or late stages.
Also, check out the FTD documentary "Planning for Hope."
http://www.planningforhope.com/ password: ftd2010
Monday, October 25, 2010
New Neurologist Visit
Well our biggest "news" from the last post is that Jim finally had his appointment with the new neurologist. Dr. Lerner is from University Hospitals and he "gets" FTD - I am so excited. While at the FTD conference someone asked me why we needed 2 neurologists and I didn't have a good answer - I just said "I feel like we need one for each condition." Now, after this visit I don't know if my answer can be worded any better but I know I was right.
I feel that we have one of the best (if not THE best ALS specialist) in Dr. Pioro at Cleveland Clinic. Now I feel the same about Dr. Lerner and FTD. Again, he gets it. Anyone who has dealt with an FTD patient understands that statement, those were my exact words after my first FTD support group too. I think in order to fully understand FTD you have to "just get it" and not ask why or want answers you may never find.
Anyhow, back to Dr. Lerner. He is super nice. He actually spoke to Jim and not "around" him. He answered all our questions and actually explained Jim's disease to him. (Not sure how much he got - but it still was great.) At one point he told Jim not to think of him as the doctor but to think of him as part of the team. Dr. Lerner has agreed to order a PET scan for Jim and is working on getting insurance approval for it. After discussing it with me and Aunt Mary (who also came to the appointment) we agreed we wanted the test. During the conference there was a lot of talk about PET findings in FTD patients. Dr. Lerner explained to us the results will most likely not change any course of action. However, seeing as how all of his previous imaging studies were negative I think we would like to pursue this exam. If for nothing else just piece of mind. Don't get me wrong - not that I want to find anything and there is little doubt in my mind that this is what is wrong with Jim since he fits the profile to a "T" - but there is always that question in the back of my mind. AND I would like to see if there is a change from the imaging results last year. I will keep everyone posted. We follow up with Dr. Lerner at the end of November.
One positive thing that came from the visit is that Jim is now on a medication for the FTD. It is actually an alzheimer's medication that is being tested on FTD patients. There is real proof it will do anything but our hope is it will slow the dementia process. Dr. Lerner said there is another medication that will be released for FTD trial in the spring. The medication may not make a difference - but it is something we are trying.
Jim also had some more testing during the visit. He has been through all of it before. A good deal of it he had just taken at the last ALS visit. Probably the most curious result was when the had Jim count back from 100 by 7s. Last month his first and only answer was 97. This time around his answer was "67, 57, 47, 37, 27" - not really sure what it means if anything. I guess we will find out at the follow-up visit.
Another piece of good news - Jim received a TENs unit for pain management. We are trying it to help to relieve the side pain he is having. This is his biggest complaint of all of this. Who knows - maybe it will actually help kill some of the pain and cut back on the medication.
Also new this last week - Jim has told me that he is no longer able to swallow his large "horse pill." Yes it has me worried - but he does not seem to have any other swallowing issues at this time. So for now I am just cutting that pill in 2. I recounted his pills this week - with some changes in meds he is up (or down) to 21 pills a day (counting the horse pill as one) plus one supplement powder and any pain meds he takes each day (which can be up to 8 pills but usually doesn't go over 4.)
OK - Enough of the medical talk. ----
Last weekend Jim and Mikayla took an over night trip to Buffalo and slept on a real battleship. It was some great daddy daughter time. They actually slept in the ship's bunks and got to explore the ship and a submarine. While on the trip they also stopped off at Niagara Falls and rode the Maid of the Mist and visited an Aquarium. They had a great time. I am very thankful to the other Medina Guides and Princess fathers for making this trip possible for them. These men pick Jim and Mikayla up, drive them and bring them home. Plus they help Jim out with everything and help keep an eye on him and Mikayla. This is the same group they went camping with this summer.
I also want to thank my friend Lani for helping to watch Mikayla on her crazy schedule so that we can balance child care and doctor's visits. Some of my new friends are so great!! Not sure what I would do without them!
Well.... until next time..... Take Care!!
I feel that we have one of the best (if not THE best ALS specialist) in Dr. Pioro at Cleveland Clinic. Now I feel the same about Dr. Lerner and FTD. Again, he gets it. Anyone who has dealt with an FTD patient understands that statement, those were my exact words after my first FTD support group too. I think in order to fully understand FTD you have to "just get it" and not ask why or want answers you may never find.
Anyhow, back to Dr. Lerner. He is super nice. He actually spoke to Jim and not "around" him. He answered all our questions and actually explained Jim's disease to him. (Not sure how much he got - but it still was great.) At one point he told Jim not to think of him as the doctor but to think of him as part of the team. Dr. Lerner has agreed to order a PET scan for Jim and is working on getting insurance approval for it. After discussing it with me and Aunt Mary (who also came to the appointment) we agreed we wanted the test. During the conference there was a lot of talk about PET findings in FTD patients. Dr. Lerner explained to us the results will most likely not change any course of action. However, seeing as how all of his previous imaging studies were negative I think we would like to pursue this exam. If for nothing else just piece of mind. Don't get me wrong - not that I want to find anything and there is little doubt in my mind that this is what is wrong with Jim since he fits the profile to a "T" - but there is always that question in the back of my mind. AND I would like to see if there is a change from the imaging results last year. I will keep everyone posted. We follow up with Dr. Lerner at the end of November.
One positive thing that came from the visit is that Jim is now on a medication for the FTD. It is actually an alzheimer's medication that is being tested on FTD patients. There is real proof it will do anything but our hope is it will slow the dementia process. Dr. Lerner said there is another medication that will be released for FTD trial in the spring. The medication may not make a difference - but it is something we are trying.
Jim also had some more testing during the visit. He has been through all of it before. A good deal of it he had just taken at the last ALS visit. Probably the most curious result was when the had Jim count back from 100 by 7s. Last month his first and only answer was 97. This time around his answer was "67, 57, 47, 37, 27" - not really sure what it means if anything. I guess we will find out at the follow-up visit.
Another piece of good news - Jim received a TENs unit for pain management. We are trying it to help to relieve the side pain he is having. This is his biggest complaint of all of this. Who knows - maybe it will actually help kill some of the pain and cut back on the medication.
Also new this last week - Jim has told me that he is no longer able to swallow his large "horse pill." Yes it has me worried - but he does not seem to have any other swallowing issues at this time. So for now I am just cutting that pill in 2. I recounted his pills this week - with some changes in meds he is up (or down) to 21 pills a day (counting the horse pill as one) plus one supplement powder and any pain meds he takes each day (which can be up to 8 pills but usually doesn't go over 4.)
OK - Enough of the medical talk. ----
Last weekend Jim and Mikayla took an over night trip to Buffalo and slept on a real battleship. It was some great daddy daughter time. They actually slept in the ship's bunks and got to explore the ship and a submarine. While on the trip they also stopped off at Niagara Falls and rode the Maid of the Mist and visited an Aquarium. They had a great time. I am very thankful to the other Medina Guides and Princess fathers for making this trip possible for them. These men pick Jim and Mikayla up, drive them and bring them home. Plus they help Jim out with everything and help keep an eye on him and Mikayla. This is the same group they went camping with this summer.
I also want to thank my friend Lani for helping to watch Mikayla on her crazy schedule so that we can balance child care and doctor's visits. Some of my new friends are so great!! Not sure what I would do without them!
Well.... until next time..... Take Care!!
Friday, October 8, 2010
FTD Conference
This past week Jim's Aunt Mary and I attended the 7th International Conference on FTD in Indianapolis, IN. Though the actual caregiver portion of the conference was only one day - it kept my whole week full!
To start at square one: Monday was probably the worst day Jim had yet. He was just very "out of it," disconnected and distant. He had problems getting the girls up - he just didn't have the ability to do it. After getting the girls off I went to bed. Apparently, Jim fell asleep and Aunt Mary had to wake him for a chiropractic appointment. After the appointment he fell back to sleep and missed getting Ruthie off the bus. Everything worked out fine. Also, despite being out of it - he still had his humor. When Aunt Mary told him she had to drop him(off) and run his response was "just don't drop me to hard." Monday's ordeal ended with a scheduling error which postponed our meeting Jim's new FTD neurologist until October 19.
My wonderful sister Jeannie drove in from Virgina (over a 6 hour trip when not bringing your 2 kids)to care for my family. Though she will probably scold me for thanking her again - without her going to the conference would not have been possible. She had a six year old, two three-year-olds, a one year old, Jim and two crazy dogs. Apparently, she survived!
We arrived at the conference Tuesday and attended the "reception" where we met several of my online support group. Putting faces to the names I have known for over a year was wonderful. Included in the group were the parents of a women who was diagnosed at age 29 and passed away last October at age 31. Another family were caring for their 29 year old son/brother who was diagnosed 4 years ago. One theme was clear - all these people were diagnosed at to young an age.
Probably one of the most memorable was Sue. She and her partner have created a documentary about FTD. Here is her website: ftdtheotherdementia.com. I will post the link to the documentary when I get it. Sue was a brillent mind who was diagnosed at the age of 53. Though she has lost half of her IQ she is still brillant and it was great to hear about FTD first hand.
Wednesday was packed with the conference from 7:45 until 5:30. Though it will take me awhile to sift through my notes - I know I learned a lot. There were MANY referrances to FTD and ALS. Also FTD in relation to motor neuron disease and PSP (Progressive Supranuclear Palsy - the disease Jim's Grandma Livingston had.) I found these diseases involve some of the same protein build-ups in the brain. Researchers have been able to also link some DNA markers is this disease. Though this is great news medically - it scares the hell of me when it comes to my children.
While at the conference I met Dr. Lerner - Jim's new FTD neurologist. I was very encouraged to find out from other sources he was well aware of the mishap on Monday and upset over it. Dr. Lerner seems very nice - he even gave me his cellphone number! I look forward to the upcoming appointment.
Wednesday's conference ended with an elaborate dinner - complete with Chef Ramsey-style dinner. We had dinner with more on-line support group members on world renowned neurologist Dr. Kertesz from Canada. There was no hiding his compassion as he listened to each of our stories. He talked of changing the term frontal temporal dementia to disease due to the stigma that surronds the word dementia. Dr. Kertesz has written a book named "The Banana Lady" in which he documents stories of some of his patients and explains some of the curiosities surronding this disease. He has also written textbooks related to FTD.
All in all - I am so happy I was able to attend this conference, it is an experience I will not soon forget. I am even more thankful I was able to share the experience with Aunt Mary.
One last thing - there is a new FTD book out and it is FREE - yes FREE. I have ordered several copies if anyone is interested. It will help all of you to understand this disease and Jim better. You can also read it online at: http://www.nia.nih.gov/Alzheimers/Publications/FTLD/ or ordered for FREE at: http://www.niapublications.org/adear...r.asp?id=AD029.
Sorry for the book-long post!!
To start at square one: Monday was probably the worst day Jim had yet. He was just very "out of it," disconnected and distant. He had problems getting the girls up - he just didn't have the ability to do it. After getting the girls off I went to bed. Apparently, Jim fell asleep and Aunt Mary had to wake him for a chiropractic appointment. After the appointment he fell back to sleep and missed getting Ruthie off the bus. Everything worked out fine. Also, despite being out of it - he still had his humor. When Aunt Mary told him she had to drop him(off) and run his response was "just don't drop me to hard." Monday's ordeal ended with a scheduling error which postponed our meeting Jim's new FTD neurologist until October 19.
My wonderful sister Jeannie drove in from Virgina (over a 6 hour trip when not bringing your 2 kids)to care for my family. Though she will probably scold me for thanking her again - without her going to the conference would not have been possible. She had a six year old, two three-year-olds, a one year old, Jim and two crazy dogs. Apparently, she survived!
We arrived at the conference Tuesday and attended the "reception" where we met several of my online support group. Putting faces to the names I have known for over a year was wonderful. Included in the group were the parents of a women who was diagnosed at age 29 and passed away last October at age 31. Another family were caring for their 29 year old son/brother who was diagnosed 4 years ago. One theme was clear - all these people were diagnosed at to young an age.
Probably one of the most memorable was Sue. She and her partner have created a documentary about FTD. Here is her website: ftdtheotherdementia.com. I will post the link to the documentary when I get it. Sue was a brillent mind who was diagnosed at the age of 53. Though she has lost half of her IQ she is still brillant and it was great to hear about FTD first hand.
Wednesday was packed with the conference from 7:45 until 5:30. Though it will take me awhile to sift through my notes - I know I learned a lot. There were MANY referrances to FTD and ALS. Also FTD in relation to motor neuron disease and PSP (Progressive Supranuclear Palsy - the disease Jim's Grandma Livingston had.) I found these diseases involve some of the same protein build-ups in the brain. Researchers have been able to also link some DNA markers is this disease. Though this is great news medically - it scares the hell of me when it comes to my children.
While at the conference I met Dr. Lerner - Jim's new FTD neurologist. I was very encouraged to find out from other sources he was well aware of the mishap on Monday and upset over it. Dr. Lerner seems very nice - he even gave me his cellphone number! I look forward to the upcoming appointment.
Wednesday's conference ended with an elaborate dinner - complete with Chef Ramsey-style dinner. We had dinner with more on-line support group members on world renowned neurologist Dr. Kertesz from Canada. There was no hiding his compassion as he listened to each of our stories. He talked of changing the term frontal temporal dementia to disease due to the stigma that surronds the word dementia. Dr. Kertesz has written a book named "The Banana Lady" in which he documents stories of some of his patients and explains some of the curiosities surronding this disease. He has also written textbooks related to FTD.
All in all - I am so happy I was able to attend this conference, it is an experience I will not soon forget. I am even more thankful I was able to share the experience with Aunt Mary.
One last thing - there is a new FTD book out and it is FREE - yes FREE. I have ordered several copies if anyone is interested. It will help all of you to understand this disease and Jim better. You can also read it online at: http://www.nia.nih.gov/Alzheimers/Publications/FTLD/ or ordered for FREE at: http://www.niapublications.org/adear...r.asp?id=AD029.
Sorry for the book-long post!!
Monday, October 4, 2010
Busy... Busy ... Busy
Hello everyone! Geez - by looking at the time between posts you would think nothing was going on but it is quite the opposite!!
We had a great summer and are adjusting to fall. Mikayla started first grade this year and has a WONDERFUL teacher. She loves reading but her favorite things are lunch and recess.
Ruthie started preschool. She takes a bus and everything. Poor thing gets on the bus at 7:15. She seems to handle it ok. I think mommy and daddy are having the trouble adjusting.
Jim is still really good at getting the girls off the to the bus. However, he seems to do better with Mikayla so I have been taking care of Ruthie while he gets Mikayla going. He has been walking Mikayla to the bus most mornings and waits for her in the driveway in the afternoon. (The school district REFUSES to change her bus stop to the house.) I plan to revisit that issue later.
Jim had another visit with his ALS neurologist. He is having a lot of pain. Mostly in his sides. The doctor says he thinks it is because Jim is just always so stiff. Even watching tv his arms are tight to his sides. He does not swing his arms at all when he walks so the constant tension is causing pain. He has upped his medication and added another to try to relieve the muscle spasms. I am not sure it has helped very much. Jim refuses to take his pain medication because it usually doesn't even touch the pain. He starts seeing pain management later this month.
Tomorrow (well later today) he has his first appointment with the new FTD specialist. I have heard nothing but good things about this new neurologist and am looking forward to hearing his input.
Although Jim is still doing better mentally I am sad to say we have been noticing some slippage here and there. There are days it seems he remembers nothing. Or he will grasp onto one idea or thought and obsess over it. DO NOT tell him you are thinking of doing something or going somewhere unless you mean it!! There have been some odd moments (like crossing the street in front of Ruthie's bus and throwing out Mikayla's homework) but overall I think the good moments are still out weighing the bad.
This next week Jim's Aunt Mary and I are going to Indianapolis for the International FTD conference. I am really kind of excited. I look forward to meeting a lot of my online support group. I am forever grateful to my sister Jeannie for hauling her two kids all the way from Virgina to "keep Jim company" and to his cousin Amanda for coming to watch grandma and grandpa so Aunt Mary can come. WOO HOO - big trip out - just us girls. We leave Tuesday - and knowing us our "night out" will probably consist of pillows blankies and some zzzz's!!
We had a great summer and are adjusting to fall. Mikayla started first grade this year and has a WONDERFUL teacher. She loves reading but her favorite things are lunch and recess.
Ruthie started preschool. She takes a bus and everything. Poor thing gets on the bus at 7:15. She seems to handle it ok. I think mommy and daddy are having the trouble adjusting.
Jim is still really good at getting the girls off the to the bus. However, he seems to do better with Mikayla so I have been taking care of Ruthie while he gets Mikayla going. He has been walking Mikayla to the bus most mornings and waits for her in the driveway in the afternoon. (The school district REFUSES to change her bus stop to the house.) I plan to revisit that issue later.
Jim had another visit with his ALS neurologist. He is having a lot of pain. Mostly in his sides. The doctor says he thinks it is because Jim is just always so stiff. Even watching tv his arms are tight to his sides. He does not swing his arms at all when he walks so the constant tension is causing pain. He has upped his medication and added another to try to relieve the muscle spasms. I am not sure it has helped very much. Jim refuses to take his pain medication because it usually doesn't even touch the pain. He starts seeing pain management later this month.
Tomorrow (well later today) he has his first appointment with the new FTD specialist. I have heard nothing but good things about this new neurologist and am looking forward to hearing his input.
Although Jim is still doing better mentally I am sad to say we have been noticing some slippage here and there. There are days it seems he remembers nothing. Or he will grasp onto one idea or thought and obsess over it. DO NOT tell him you are thinking of doing something or going somewhere unless you mean it!! There have been some odd moments (like crossing the street in front of Ruthie's bus and throwing out Mikayla's homework) but overall I think the good moments are still out weighing the bad.
This next week Jim's Aunt Mary and I are going to Indianapolis for the International FTD conference. I am really kind of excited. I look forward to meeting a lot of my online support group. I am forever grateful to my sister Jeannie for hauling her two kids all the way from Virgina to "keep Jim company" and to his cousin Amanda for coming to watch grandma and grandpa so Aunt Mary can come. WOO HOO - big trip out - just us girls. We leave Tuesday - and knowing us our "night out" will probably consist of pillows blankies and some zzzz's!!
Friday, August 20, 2010
End of Summer Campout
After much discussion with the other dads in the group I packed Jim and Mikayla up for a weekend daddy/daughter camping trip. One of the other fathers came and picked them up and agreed to drop them back off. They helped Jim set up his tent and kept an eye on both him and Mikayla.
The biggest "problem" - Mikayla swam out further then Jim could in the lake (with a life vest) - so another dad stepped in so Jim didn't have to try to go that far. They ended up home a day early due to rain.
All in all - everything must have gone very well - the other fathers invited Jim and Mikayla on the next sleepover - on a battleship!! (In Novemeber.)
Ruthie and I had a Mommy-N-Me day that Saturday. I took her to the Kiddie Park. It took her quite awhile to understand that it was a day all about her. She kept asking for Mikayla - then it sunk in! She loved being the center of attention!
Jim is still doing pretty well. Though I do see some "slippage" from time to time. Mom had to remind me today that "Shell... he can't help it" when I was complaining about something he had misplaced. I know that - but have been getting to comfortable with the "Old Jim" being back!
His pain seems to be more controlled on the new pain meds - however it still has its moments too. We have an appointment in a few weeks at the ALS neuro. I also ced his right hand seem more contracted even when at rest.
All in all - things are still pretty good. Now busy getting Mikayla ready for 1st grade and Ruthie is starting preschool in a couple weeks.
TIME FLIES!!
The biggest "problem" - Mikayla swam out further then Jim could in the lake (with a life vest) - so another dad stepped in so Jim didn't have to try to go that far. They ended up home a day early due to rain.
All in all - everything must have gone very well - the other fathers invited Jim and Mikayla on the next sleepover - on a battleship!! (In Novemeber.)
Ruthie and I had a Mommy-N-Me day that Saturday. I took her to the Kiddie Park. It took her quite awhile to understand that it was a day all about her. She kept asking for Mikayla - then it sunk in! She loved being the center of attention!
Jim is still doing pretty well. Though I do see some "slippage" from time to time. Mom had to remind me today that "Shell... he can't help it" when I was complaining about something he had misplaced. I know that - but have been getting to comfortable with the "Old Jim" being back!
His pain seems to be more controlled on the new pain meds - however it still has its moments too. We have an appointment in a few weeks at the ALS neuro. I also ced his right hand seem more contracted even when at rest.
All in all - things are still pretty good. Now busy getting Mikayla ready for 1st grade and Ruthie is starting preschool in a couple weeks.
TIME FLIES!!
Sunday, August 8, 2010
Wow ... A Month has Flown By!
Things have been really busy....
Jim celebrated his 37th Birthday on July 23. Jim offically gave up his drivers license on his birthday and received a state id. It was kinda sad. There I was with him - tempted to have him keep it but knowing there is NO WAY he could drive. Just seems so wrong.
We went to Cedar Point as a late birthday gift. Honestly, I was anxious as hell to take Jim and the kids alone. However, things went REALLY well. Thank goodness we had a wheelchair with us (thanks to ALSA). The walking would have been way to much for him. It wasn't long though before I was pushing Jim and the kids around in the chair.
Jim is still doing really well mentally. I would say he is doing better then he was last fall. Though he is not 100% - I see the "old Jim" quite often. Several times this month he has given me that goofy "hewwo" he used to always say to people. The first time I heard him say it I nearly fell over - probably has been more then a year since the last time!
Not really sure what the mental rebound is a result of. There was only 1 low dose medication added for this - shouldn't make this big of a difference. As for me - I credit prayer!
However, as the cycle seems to go - mental symptoms are down and ALS symptoms are up. Though the changes don't seem to be as sudden or drastic they are still there. Jim has been complaining of a lot of pain especially around his ribs. It has been limiting his activity some what. He has also been having major tremors at night. These have been keeping him awake. The doctor just prescribed a higher dose pain medication 2 days ago but it seems to be helping. We follow up with the ALS neuro September 8. We still also have an appointment with the new FTD neuro October 8. Seems so far away --- but I know it will be here before long!
We have really enjoyed our pool this summer. The water and weather has been warm enough Jim has even gone in a few times! He seems very oversensitive to the water temperature. This is most likely due to the changes in his nerves. We have also noticed this sensitivity in his face as things like shaving become more difficult.
Jim has finally (realized? owned up? admitted?) not sure the word to use - that there is something wrong. However, his explanation is something is wrong with his muscles. This is a good thing - it helps me to convince him to not over due it all the time.
One last thing that happened this month - My good friend Katie lost her husband Glen to these horrible diseases. Katie and I met shortly after our husbands were diagnosed. In Septemeber Glen biked in an ALS fundraiser. Not even a year later he is gone. He took a sudden downturn and passed away June 30. He was 57. Though I never actually met Glen or Katie - his death has really hit me. I consider Katie one of my greatest friends on confidants. Please keep them in your prayers.
TEAM SHAGGY kicks ALS - please support Team Shaggy in the walk to defeat ALS. http://web.alsa.org/goto/shaggy
Jim celebrated his 37th Birthday on July 23. Jim offically gave up his drivers license on his birthday and received a state id. It was kinda sad. There I was with him - tempted to have him keep it but knowing there is NO WAY he could drive. Just seems so wrong.
We went to Cedar Point as a late birthday gift. Honestly, I was anxious as hell to take Jim and the kids alone. However, things went REALLY well. Thank goodness we had a wheelchair with us (thanks to ALSA). The walking would have been way to much for him. It wasn't long though before I was pushing Jim and the kids around in the chair.
Jim is still doing really well mentally. I would say he is doing better then he was last fall. Though he is not 100% - I see the "old Jim" quite often. Several times this month he has given me that goofy "hewwo" he used to always say to people. The first time I heard him say it I nearly fell over - probably has been more then a year since the last time!
Not really sure what the mental rebound is a result of. There was only 1 low dose medication added for this - shouldn't make this big of a difference. As for me - I credit prayer!
However, as the cycle seems to go - mental symptoms are down and ALS symptoms are up. Though the changes don't seem to be as sudden or drastic they are still there. Jim has been complaining of a lot of pain especially around his ribs. It has been limiting his activity some what. He has also been having major tremors at night. These have been keeping him awake. The doctor just prescribed a higher dose pain medication 2 days ago but it seems to be helping. We follow up with the ALS neuro September 8. We still also have an appointment with the new FTD neuro October 8. Seems so far away --- but I know it will be here before long!
We have really enjoyed our pool this summer. The water and weather has been warm enough Jim has even gone in a few times! He seems very oversensitive to the water temperature. This is most likely due to the changes in his nerves. We have also noticed this sensitivity in his face as things like shaving become more difficult.
Jim has finally (realized? owned up? admitted?) not sure the word to use - that there is something wrong. However, his explanation is something is wrong with his muscles. This is a good thing - it helps me to convince him to not over due it all the time.
One last thing that happened this month - My good friend Katie lost her husband Glen to these horrible diseases. Katie and I met shortly after our husbands were diagnosed. In Septemeber Glen biked in an ALS fundraiser. Not even a year later he is gone. He took a sudden downturn and passed away June 30. He was 57. Though I never actually met Glen or Katie - his death has really hit me. I consider Katie one of my greatest friends on confidants. Please keep them in your prayers.
TEAM SHAGGY kicks ALS - please support Team Shaggy in the walk to defeat ALS. http://web.alsa.org/goto/shaggy
Friday, July 2, 2010
??? HAPPY ??? ANNIVERSARY ???
July 2, 2009 - the day we were "only" going for a neurology consult. We left that room with a diagnosis of dementia and motor neuron disease.
WOW - seems like a decade ago! However, despite the obvious I think life is better. God has given us a few gifts -
1)Strength: I am stronger then I was a year ago. Our family is stronger.
2)Love: I know I am in love with the man I married.
3)Optimism: For a person who has always had a half empty glass.
4)Compassion: For those I know and don't know.
5)Understanding: I now know why Jim does what he does - life makes sense in a way.
6)Appreciation: To have what time we have together.
One year ago something else could have happened - maybe some freak accident killing the person I loved - he could have been gone in a second with no warning, no fight and none of the "fun" that goes with these diseases. I could have lost the man I love without getting to say "good-bye" or "I love you."
Even though Jim has changed I am grateful to have him here.
WOW - seems like a decade ago! However, despite the obvious I think life is better. God has given us a few gifts -
1)Strength: I am stronger then I was a year ago. Our family is stronger.
2)Love: I know I am in love with the man I married.
3)Optimism: For a person who has always had a half empty glass.
4)Compassion: For those I know and don't know.
5)Understanding: I now know why Jim does what he does - life makes sense in a way.
6)Appreciation: To have what time we have together.
One year ago something else could have happened - maybe some freak accident killing the person I loved - he could have been gone in a second with no warning, no fight and none of the "fun" that goes with these diseases. I could have lost the man I love without getting to say "good-bye" or "I love you."
Even though Jim has changed I am grateful to have him here.
Thursday, July 1, 2010
Day Care Visit
Well, we visited our first daycare center today. Beautiful place, really friendly. One downside - private pay only - so no insurance or medicare coverage. However, definately considering it for the occasional work day. Good things: it includes all meals and snacks and activities AND it is 24-7 and allows drop-in time service and last minute cancellations without fees!! Jim is going to "volunteer" there and help with the other residents. Kinda excited!
What put the spark under my butt?? I may actually have a few extra days I can pick up in August! We didn't have the kids with us (thanks to Gretchen & her family) so what a better day to start looking.
After getting home tonight realized my tire is going flat on the van and the air condtioning is leaking again (Yes I just got it fixed Wednesday!) Uggghhhh..... never ends - my back up car also has a flat tire and no brakes so back to the shop we go.
If anyone knows of any local adult daycares or home health services that take medicare I am open for suggestions!!!
What put the spark under my butt?? I may actually have a few extra days I can pick up in August! We didn't have the kids with us (thanks to Gretchen & her family) so what a better day to start looking.
After getting home tonight realized my tire is going flat on the van and the air condtioning is leaking again (Yes I just got it fixed Wednesday!) Uggghhhh..... never ends - my back up car also has a flat tire and no brakes so back to the shop we go.
If anyone knows of any local adult daycares or home health services that take medicare I am open for suggestions!!!
Wednesday, June 30, 2010
ALS Clinic
Well, today was Jim's 2nd ALS Clinic appointment. For those not familiar - it is a "round robin" visit where patients rotate through PT, OT, Speech Therapist, Nutritionist, social worker and neurologist.
All in all it was a very good day. Jim was having a good day both physically and mentally. He has some increased stiffness (which is obvious) which is from the muscles shortening. He has been shown more stretches to do - trick is to get him to do them!! He was also given some stretching exercises for his wrists. His grip was actually a lot stronger then it was in January (probably due to good day & meds helping the muscle spasms.)
His breathing is still good and weight is stable - the "thinness" we are seeing in his legs, chest and legs is most likely muscle atrophy. (Again something we pretty much guessed.)
I wasn't overly impressed with the neurologist - don't get me wrong he was nice and all - but like the other 2 better. He does think we should pursue the consult with the FTD specialist (scheduled for August.)
After getting out of the appointments early I asked Jim what he would like to do - he wanted to see Eclipse. So yes I have seen it 2x on opening day!! (nerd) Jim also applied for his golden buckeye card (lol).
I offically feel old 4+ hours in the clinic, lunch with our 2 for 1 coupon, matinee movie and a buckeye card. Now we just need to be in bed before dark.
**** I REALLY have to thank my cousin Gretchen for watching our girls!!! It was so nice to not have to worry about them and know they're having lots of fun!!!*****
All in all it was a very good day. Jim was having a good day both physically and mentally. He has some increased stiffness (which is obvious) which is from the muscles shortening. He has been shown more stretches to do - trick is to get him to do them!! He was also given some stretching exercises for his wrists. His grip was actually a lot stronger then it was in January (probably due to good day & meds helping the muscle spasms.)
His breathing is still good and weight is stable - the "thinness" we are seeing in his legs, chest and legs is most likely muscle atrophy. (Again something we pretty much guessed.)
I wasn't overly impressed with the neurologist - don't get me wrong he was nice and all - but like the other 2 better. He does think we should pursue the consult with the FTD specialist (scheduled for August.)
After getting out of the appointments early I asked Jim what he would like to do - he wanted to see Eclipse. So yes I have seen it 2x on opening day!! (nerd) Jim also applied for his golden buckeye card (lol).
I offically feel old 4+ hours in the clinic, lunch with our 2 for 1 coupon, matinee movie and a buckeye card. Now we just need to be in bed before dark.
**** I REALLY have to thank my cousin Gretchen for watching our girls!!! It was so nice to not have to worry about them and know they're having lots of fun!!!*****
Sunday, June 20, 2010
A whole lotta nothing...
I can't believe more then a month has gone by - so much has gone on. Mikayla graduated kindergarten and had her dance recital. I have opened the pool (successfully I may add.) Besides that - a whole lot of nothing new.
Jim had almost 2 very good weeks we it almost felt like the "old Jim" was back. He was right on with his humor and very helpful around the house and with the kids. Was a lot of fun. Well this weekend the aggitation seems to be really coming back as well as the (what I call ADD) behaviours. He's been really distracted and kinda distant yet real focused on what is important to him (like trips for icecream and miscellaneous household things.) Some days he is pushing himself to get the most irrelevant tasks done.
Though his FTD symptoms seem to have let up these couple weeks the ALS has seemed to "flare up." He has almost no upper body strength. We are finding he can't turn a screw driver and really isn't lifting things like he used to. He can no longer carry Ruthie to bed (Mikayla was out awhile ago.) He is having more noticable fasiculations (spasms) in his arms. They are not painful - but he says he can really feel them and you can see the muscles moving.
Also increased are his "night tremors." The doctors recentally increased his medication for these from 40 to 60mg - but they are breaking through again. They seem to bother me more then him so we are waiting to bring it up again at the ALS clinic on 6/30.
We recieved "offical" word that his FTD neurologist has retired so we were referred to another Clinic neurologist. I am waiting to get the ALS doctor's opinion on the new doctor. Our old neurologist thinks that the ALS doctor should be able to handle most of the FTD symptoms also.
Not that I lack faith in the new guy - I have scheduled an appointment with a University Hospital neurologist who specializes in FTD. Just want to see what he has to say. I have heard nothing but positive things about this doctor and he is supposed to really understand FTD. Of course the first opening for this doctor isn't until mid-August.
Well, I think that about covers it - not very exciting - just a lot of busy work!
Jim had almost 2 very good weeks we it almost felt like the "old Jim" was back. He was right on with his humor and very helpful around the house and with the kids. Was a lot of fun. Well this weekend the aggitation seems to be really coming back as well as the (what I call ADD) behaviours. He's been really distracted and kinda distant yet real focused on what is important to him (like trips for icecream and miscellaneous household things.) Some days he is pushing himself to get the most irrelevant tasks done.
Though his FTD symptoms seem to have let up these couple weeks the ALS has seemed to "flare up." He has almost no upper body strength. We are finding he can't turn a screw driver and really isn't lifting things like he used to. He can no longer carry Ruthie to bed (Mikayla was out awhile ago.) He is having more noticable fasiculations (spasms) in his arms. They are not painful - but he says he can really feel them and you can see the muscles moving.
Also increased are his "night tremors." The doctors recentally increased his medication for these from 40 to 60mg - but they are breaking through again. They seem to bother me more then him so we are waiting to bring it up again at the ALS clinic on 6/30.
We recieved "offical" word that his FTD neurologist has retired so we were referred to another Clinic neurologist. I am waiting to get the ALS doctor's opinion on the new doctor. Our old neurologist thinks that the ALS doctor should be able to handle most of the FTD symptoms also.
Not that I lack faith in the new guy - I have scheduled an appointment with a University Hospital neurologist who specializes in FTD. Just want to see what he has to say. I have heard nothing but positive things about this doctor and he is supposed to really understand FTD. Of course the first opening for this doctor isn't until mid-August.
Well, I think that about covers it - not very exciting - just a lot of busy work!
Sunday, May 16, 2010
Elvis??? Really???
Well, Wednesday Jim's lip start doing its best Elvis impersonation. The muscle on right side of his mouth (above the corner of his lip)started "fasiculating" or spasming. This really scared him - plus he was dizzy. So off to the doctor we went. Of course our regular doctor and our "backup" doctor were already booked - so we got to meet ANOTHER new doc. This one was actually very nice and took time to really read Jim's records before doing anything (novel - huh?)
He came in and introduced himself - asked Jim what was going on - and Jim of course looks to me to answer. I look at the doctor and explained the new symptoms. The doctor literally just stared at me - then apologized "I'm sorry I am just trying to absorb this. It is a very unusual diagnosis" At least he was honest!! In addition to the face spasms his night "tremors" have started to break through his medication again. (FYI - Difference between spasm and tremor - got me. Neither of these are the "right" term - just what I named them as they showed up in the beginning. The correct term is fasiculation.)
Anyhow, this doctor increased the medication to controll the spasms from 40mg to 50 and okayed him to take another 10mg if needed. He has taken 60 everyday since. If he doesn't take the extra before bed he gets up to take on in the middle of the night. He is noticing the muscle movements now - something he never used to. Part of the reason I think is because he can't help but feel and see them in his arms and face.
I called the ALS neuro's office assitant on Wednesday and left a message. Friday I called again and got no response - turns out the physician assistant is not there anymore. Thank goodness for the FTD Physician assitant for solving that puzzle. But now I wasted Wed-Fri waiting for a call that never came. So Monday I will start at square one with the ALS neuro's office. I hate wasting time!! Will keep you posted!!
Also, on Wednesday Jim's Grandpa was admitted to ICU with a blood sugar level over 1,000. Luckily he seems to be doing better, he is out of ICU but still in the hospital as of this post. An extra prayer is appreciated.....THANKS
He came in and introduced himself - asked Jim what was going on - and Jim of course looks to me to answer. I look at the doctor and explained the new symptoms. The doctor literally just stared at me - then apologized "I'm sorry I am just trying to absorb this. It is a very unusual diagnosis" At least he was honest!! In addition to the face spasms his night "tremors" have started to break through his medication again. (FYI - Difference between spasm and tremor - got me. Neither of these are the "right" term - just what I named them as they showed up in the beginning. The correct term is fasiculation.)
Anyhow, this doctor increased the medication to controll the spasms from 40mg to 50 and okayed him to take another 10mg if needed. He has taken 60 everyday since. If he doesn't take the extra before bed he gets up to take on in the middle of the night. He is noticing the muscle movements now - something he never used to. Part of the reason I think is because he can't help but feel and see them in his arms and face.
I called the ALS neuro's office assitant on Wednesday and left a message. Friday I called again and got no response - turns out the physician assistant is not there anymore. Thank goodness for the FTD Physician assitant for solving that puzzle. But now I wasted Wed-Fri waiting for a call that never came. So Monday I will start at square one with the ALS neuro's office. I hate wasting time!! Will keep you posted!!
Also, on Wednesday Jim's Grandpa was admitted to ICU with a blood sugar level over 1,000. Luckily he seems to be doing better, he is out of ICU but still in the hospital as of this post. An extra prayer is appreciated.....THANKS
Thursday, May 6, 2010
Another Update
This is an extension of my last post. A few people had questions and I realized I ha a lot in there that people didn't quite understand. Seeing how it came up a few times here is a further explanation:
In short, Jim has 2 neurologists. The current head of the Cleveland Clinic Neuro Dept is managing the FTD (dementia) - that was who his appointment was with. This Dr. is currently opening the Cleveland Clinic's Alzheimer's Clinic in Las Vegas - so he only sees his "hard cases" when he returns to Cleveland every few months. Well he is retiring - so we will get the new head of neurology to replace this doctor.
Jim looks a lot thinner then he did in December - his collar bones kinda stick out and his legs look a lot thinner. A year ago Jim wore a 34" waist, by Christmas he was in a 32" and now those look saggy too. However he remains a constant 165 pounds - no weight loss.
His bicep muscles spasm (or tremble) under the skin. This was not there in December. His calves have done this since at least July. He has night tremors (twitching) at night that he manages to sleep through - (I do not). In December they increased his anti-spasm meds which has controlled it until this last week. Right now the break-through tremors are mild so they will reevalute them in June and possibly raise the dosage again.
He is having left side pain (just under the ribs) that he rates 11 on a scale of 1-10. When it really flares up his pain meds don't touch it. This is new since last week. His 1st symptom (now almost 2 yrs ago) was the same pain on the right. Dr is not sure what this is - may be muscle degeneration from the ALS. But ALS doesn't typically effect these muscles.
A major symptom of this type of dementia is changes in behavior, empathy and decision making skills. Before his diagnosis I did not understand his thinking/actions and it would drive me crazy. Now I understand when I ask him a question (for instance) and he answers something strange - it is not him - it IS the disease. (An example I use is: Jim what color is the sky? He answers - not purple. In the FTD mind the answer is right. Instead I now ask "is the sky red or blue?" - then I get the right answer. This is a simplified explanation obviously.)
The dementia is causing increased aggitation in his behavior - so they subscribed a "calming" medication for this.
As for the ALS (Lou Gerhig's) - he has an ALS Clinic day every 6 months. It is a full day where you rotate through appointments with the neurologist, nutritionist, social worker and physical, occupational and speech therapy. It is a 6 hour day. They track his progression, meds, etc. This is run by a 2nd neurologist - he actually wrote the Doctor's textbook on ALS (literally).
Jim also has an in-home physical therapy (lower body) and occupational therapist (upper body) who come to work on stretching his muscles and work on reducing his overall stiffness.
A lot of Jim's ALS symptoms mimic Parkinson's disease (like the way he walks) which is also atypical. His ALS progression has been rapid - but could be much much worse. We thought he was loosing strength in his upper body - but he really is not. He has trouble lifting things, cannot pick up the kids and has trouble with fine motor skills. It is not his strength declining but something with his muscles. (A technical term I don't remember. )
In short (I know - too late) most patients with this combination of these diseases survive 18 - 36 mos. Given Jim's "abnormal" ALS symptoms his progression seems slower - hopefully giving him 3- 7years. Most patients in his case should be falling or wheelchair bound by now. His breathing is good - many are on a ventilator. God willing it will be a long time until we face that.
I have a blog for Jim: shaggymetz.blogspot.com I keep this updated with information. There is more info on both diseases including a FTD piece Channel 3 did "starring" a friend from my support group. Feel free to ask me anything. My role in this is to raise awareness and support.
In short, Jim has 2 neurologists. The current head of the Cleveland Clinic Neuro Dept is managing the FTD (dementia) - that was who his appointment was with. This Dr. is currently opening the Cleveland Clinic's Alzheimer's Clinic in Las Vegas - so he only sees his "hard cases" when he returns to Cleveland every few months. Well he is retiring - so we will get the new head of neurology to replace this doctor.
Jim looks a lot thinner then he did in December - his collar bones kinda stick out and his legs look a lot thinner. A year ago Jim wore a 34" waist, by Christmas he was in a 32" and now those look saggy too. However he remains a constant 165 pounds - no weight loss.
His bicep muscles spasm (or tremble) under the skin. This was not there in December. His calves have done this since at least July. He has night tremors (twitching) at night that he manages to sleep through - (I do not). In December they increased his anti-spasm meds which has controlled it until this last week. Right now the break-through tremors are mild so they will reevalute them in June and possibly raise the dosage again.
He is having left side pain (just under the ribs) that he rates 11 on a scale of 1-10. When it really flares up his pain meds don't touch it. This is new since last week. His 1st symptom (now almost 2 yrs ago) was the same pain on the right. Dr is not sure what this is - may be muscle degeneration from the ALS. But ALS doesn't typically effect these muscles.
A major symptom of this type of dementia is changes in behavior, empathy and decision making skills. Before his diagnosis I did not understand his thinking/actions and it would drive me crazy. Now I understand when I ask him a question (for instance) and he answers something strange - it is not him - it IS the disease. (An example I use is: Jim what color is the sky? He answers - not purple. In the FTD mind the answer is right. Instead I now ask "is the sky red or blue?" - then I get the right answer. This is a simplified explanation obviously.)
The dementia is causing increased aggitation in his behavior - so they subscribed a "calming" medication for this.
As for the ALS (Lou Gerhig's) - he has an ALS Clinic day every 6 months. It is a full day where you rotate through appointments with the neurologist, nutritionist, social worker and physical, occupational and speech therapy. It is a 6 hour day. They track his progression, meds, etc. This is run by a 2nd neurologist - he actually wrote the Doctor's textbook on ALS (literally).
Jim also has an in-home physical therapy (lower body) and occupational therapist (upper body) who come to work on stretching his muscles and work on reducing his overall stiffness.
A lot of Jim's ALS symptoms mimic Parkinson's disease (like the way he walks) which is also atypical. His ALS progression has been rapid - but could be much much worse. We thought he was loosing strength in his upper body - but he really is not. He has trouble lifting things, cannot pick up the kids and has trouble with fine motor skills. It is not his strength declining but something with his muscles. (A technical term I don't remember. )
In short (I know - too late) most patients with this combination of these diseases survive 18 - 36 mos. Given Jim's "abnormal" ALS symptoms his progression seems slower - hopefully giving him 3- 7years. Most patients in his case should be falling or wheelchair bound by now. His breathing is good - many are on a ventilator. God willing it will be a long time until we face that.
I have a blog for Jim: shaggymetz.blogspot.com I keep this updated with information. There is more info on both diseases including a FTD piece Channel 3 did "starring" a friend from my support group. Feel free to ask me anything. My role in this is to raise awareness and support.
Wednesday, May 5, 2010
Jim Update
Well, we had his appt yesterday. The FTD neuro is retiring and will refer us over to the new head of the department. However, he thinks much could be handled by the ALS neuro. His physcian's assitant promises us we will not fall through the cracks.
His next ALS clinic is scheduled for June 30.
The neuro says he thinks we are handling this well because I am accepting that Jim is the way he is mentally because of the disease and not because he is trying to be a jack a$$. Says that is a big hurdle for families to get over.
He says he can't believe that Jim hasn't lost weight - he to notices changes in his legs and shoulders. I told him that I bought him pants that were 2" smaller at Christmas and they already look big - he agreed. But his weight is stable - actually a little higher then a year ago. Again something else that doesn't make sense.
He is having intense pain on his left side (kinda like what he used to have on his right.) Jim says it's an 11 on a scale of 1 - 10. Neuro says this stumps him. ALS shouldn't affect those muscles - but then again Jim's ALS isn't typical.
Right now he is just continuing to treat this with pain medication. We also have in home physical and occupational therapy coming in a few times a week.
The doctor also noticed fasiculations (muscle spasms) in his biceps - this is new but I had a problem seeing them. He said it is not loss of strength in his upper body - but something else (can't remember the term he used.) Some kind of Parkinsons-like symptom.
Good news(???!!!) is that since Jim is not typical in his ALS progression so his prognosis is a little better. "Standard" ALS/FTD is 18mos - 3yrs.
Jim's prognosis is 3-7 years.
Hate to put all this info in an email/post - but don't think I can handle repeating it in detail over and over in phone calls. Any other questions please ask.
Prayers are always accepted! In the meantime enjoy life!!
His next ALS clinic is scheduled for June 30.
The neuro says he thinks we are handling this well because I am accepting that Jim is the way he is mentally because of the disease and not because he is trying to be a jack a$$. Says that is a big hurdle for families to get over.
He says he can't believe that Jim hasn't lost weight - he to notices changes in his legs and shoulders. I told him that I bought him pants that were 2" smaller at Christmas and they already look big - he agreed. But his weight is stable - actually a little higher then a year ago. Again something else that doesn't make sense.
He is having intense pain on his left side (kinda like what he used to have on his right.) Jim says it's an 11 on a scale of 1 - 10. Neuro says this stumps him. ALS shouldn't affect those muscles - but then again Jim's ALS isn't typical.
Right now he is just continuing to treat this with pain medication. We also have in home physical and occupational therapy coming in a few times a week.
The doctor also noticed fasiculations (muscle spasms) in his biceps - this is new but I had a problem seeing them. He said it is not loss of strength in his upper body - but something else (can't remember the term he used.) Some kind of Parkinsons-like symptom.
Good news(???!!!) is that since Jim is not typical in his ALS progression so his prognosis is a little better. "Standard" ALS/FTD is 18mos - 3yrs.
Jim's prognosis is 3-7 years.
Hate to put all this info in an email/post - but don't think I can handle repeating it in detail over and over in phone calls. Any other questions please ask.
Prayers are always accepted! In the meantime enjoy life!!
Friday, April 23, 2010
Avoiding the cracks...
Despite what is sometimes my best effort Jim nearly fell through "the cracks" in the medical system.
With the evidence of progression I contacted the physican assistant (PA) for the FTD neurologist. Though I don't think it is urgent to get him in we had no follow-up setup. Thank goodness I called - the neuro is currently working in Las Vegas opening the Cleveland Clinic's Alzheimer's Clinic. He will be in town the first week of May for 1 day of patient appointments and 1 day of meetings. Though his schedule is full they squeezed us in since Jim is a "special" case. The neuro only sees his "difficult" cases while here (his words - not mine.)
During the conversation with the PA she asked when the ALS follow-up was. Well... that wasn't scheduled yet. Apparently we should have already been scheduled for July. However, the ALS clinic neuro we saw in January will be on maternity leave. Therefore, there are no ALS clinics in July. Good news is we got an appointment with the "main" ALS neuro.
In a discussion with the ALSA support group I decided to try to get a referral for in home physical therapy. Jim is really stiffening up - especially his upper body. So we saw our family doctor for that and pain management.
This was an enlightening appointment. The last time he saw this doc was in April 2009 when he was given the referral to the neurologist. That was the start of this journey. Anyhow, the doc comes in and asks what's new. I start to answer - the doc stops me wanting Jim to answer. (He is also my doc so he knows the whole story.)
Jim answers - "well I've seen lots of doctors"
Dr - "and..." Jim: "I became the human pin cushion" Dr: "and what have they told you you have?" Jim sat there for a minute then "they keep telling me but I keep forgetting." Broke my heart.
Well... the first PT appointment went well. They called to schedule the 2nd and Jim told them no... we wouldn't be home. OK - called the office back and reminded them NOT to try to schedule with the dementia patient!! Sad thing is I didn't learn this until much later!! Oh well, live and learn.
With the evidence of progression I contacted the physican assistant (PA) for the FTD neurologist. Though I don't think it is urgent to get him in we had no follow-up setup. Thank goodness I called - the neuro is currently working in Las Vegas opening the Cleveland Clinic's Alzheimer's Clinic. He will be in town the first week of May for 1 day of patient appointments and 1 day of meetings. Though his schedule is full they squeezed us in since Jim is a "special" case. The neuro only sees his "difficult" cases while here (his words - not mine.)
During the conversation with the PA she asked when the ALS follow-up was. Well... that wasn't scheduled yet. Apparently we should have already been scheduled for July. However, the ALS clinic neuro we saw in January will be on maternity leave. Therefore, there are no ALS clinics in July. Good news is we got an appointment with the "main" ALS neuro.
In a discussion with the ALSA support group I decided to try to get a referral for in home physical therapy. Jim is really stiffening up - especially his upper body. So we saw our family doctor for that and pain management.
This was an enlightening appointment. The last time he saw this doc was in April 2009 when he was given the referral to the neurologist. That was the start of this journey. Anyhow, the doc comes in and asks what's new. I start to answer - the doc stops me wanting Jim to answer. (He is also my doc so he knows the whole story.)
Jim answers - "well I've seen lots of doctors"
Dr - "and..." Jim: "I became the human pin cushion" Dr: "and what have they told you you have?" Jim sat there for a minute then "they keep telling me but I keep forgetting." Broke my heart.
Well... the first PT appointment went well. They called to schedule the 2nd and Jim told them no... we wouldn't be home. OK - called the office back and reminded them NOT to try to schedule with the dementia patient!! Sad thing is I didn't learn this until much later!! Oh well, live and learn.
Monday, April 12, 2010
Running a little behind....
Not sure if I have just been that busy or plain out putting off this update.
This has been a busy few weeks. Of course Easter and Ruthie turned 3 on Friday. She is very excited over her Zhu Zhu pets, new wardrobe and the bike Grandma and Grandpa got her. Mikayla returns to school today - though she INSISTS she's not going. Ruthie told Grandma that Daddy was being mean making 'Kayla go to school.
Ok - now Jim.
Symptoms have certainly been showing up this month. He is showing a lot of increased aggitation this last month. Some of this has caused irrational responses or behaviors. I have found that it is best to redirect his attention when this happens if at all possible. (this is an FTD symptom)
Another reminder of the FTD is his continued lack of self awareness. We find him "wandering" across the street and parking lots with out looking. Even Mikayla has warned him on this one.
I have taken greater control over his medications, especially the ones on an "as needed" basis. He has difficulty figuring out how much he can take and how often.
He continues to show increased stiffness or rigidness especially in his upper body. We have an appointment on Wednesday to get a referral for physical therapy to come to our house. He was given stretching exercises to follow at the ALS clinic in January but hasn't managed to do so. After some discussion we think that having someone showing him these in house may help.
He has had an increase in his drop foot (or feet in this case?) This causes almost a constant shuffle in his walk. His hands are more unsteady and he is experiencing an increase in pain especially when active. This will also be addressed at Wednesday's appointment. I am trying to convince him not to over exert himself but sitting around drives him crazy.
He is on the waiting list for a loaner wheelchair. Though he does not "need" it now I am trying to convince him to use one so he does not fatigue himself while walking at places like the mall. I am trying to get ahead of the game on this one.
Perhaps his biggest change - and the most significant - is Jim is no longer staying home alone or with the kids. This has been a big adjustment for us all. Trying to get someone to watch your kids and husband has been a little difficult. Mom has been a tremendous help in this area. She has been playing chauffer while I am at work and hosting sleepovers for Jim, the kids and the dogs. She is also spending a few nights at our house to help out. Jim IS aware of this change, even joking about having a babysitter. I have explained the safety aspect to him and he seems to accept it.
Now we are just praying for another plateau in the progression. We have had enough changes for now - time to adjust again.
PLEASE PRAY - IT IS THE BIGGEST THING YOU CAN DO FOR HIM.
This has been a busy few weeks. Of course Easter and Ruthie turned 3 on Friday. She is very excited over her Zhu Zhu pets, new wardrobe and the bike Grandma and Grandpa got her. Mikayla returns to school today - though she INSISTS she's not going. Ruthie told Grandma that Daddy was being mean making 'Kayla go to school.
Ok - now Jim.
Symptoms have certainly been showing up this month. He is showing a lot of increased aggitation this last month. Some of this has caused irrational responses or behaviors. I have found that it is best to redirect his attention when this happens if at all possible. (this is an FTD symptom)
Another reminder of the FTD is his continued lack of self awareness. We find him "wandering" across the street and parking lots with out looking. Even Mikayla has warned him on this one.
I have taken greater control over his medications, especially the ones on an "as needed" basis. He has difficulty figuring out how much he can take and how often.
He continues to show increased stiffness or rigidness especially in his upper body. We have an appointment on Wednesday to get a referral for physical therapy to come to our house. He was given stretching exercises to follow at the ALS clinic in January but hasn't managed to do so. After some discussion we think that having someone showing him these in house may help.
He has had an increase in his drop foot (or feet in this case?) This causes almost a constant shuffle in his walk. His hands are more unsteady and he is experiencing an increase in pain especially when active. This will also be addressed at Wednesday's appointment. I am trying to convince him not to over exert himself but sitting around drives him crazy.
He is on the waiting list for a loaner wheelchair. Though he does not "need" it now I am trying to convince him to use one so he does not fatigue himself while walking at places like the mall. I am trying to get ahead of the game on this one.
Perhaps his biggest change - and the most significant - is Jim is no longer staying home alone or with the kids. This has been a big adjustment for us all. Trying to get someone to watch your kids and husband has been a little difficult. Mom has been a tremendous help in this area. She has been playing chauffer while I am at work and hosting sleepovers for Jim, the kids and the dogs. She is also spending a few nights at our house to help out. Jim IS aware of this change, even joking about having a babysitter. I have explained the safety aspect to him and he seems to accept it.
Now we are just praying for another plateau in the progression. We have had enough changes for now - time to adjust again.
PLEASE PRAY - IT IS THE BIGGEST THING YOU CAN DO FOR HIM.
Sunday, March 14, 2010
ALS Fundraiser / The Big Red Wagon & Misc Update
I am in the process of getting the flyers out for this weekends sale - it has snuck up on me as everything seems to now a days! The Big Red Wagon kid's resale will donate 10% of all purchases to ALSA when the flyer is presented. Can't make it Friday the 19th to Medina?? Don't worry there is one coming up in May at Cuyahoga Fair Grounds. For those of you who have not been to a Red Wagon sale - come see what your missing!! Sellers tag their own stuff and drop it off - it is then organized by gender and size (clothes) and catergory (some clothes - like swimwear and toys, books, etc.) It is like a department store!
I realized I haven't posted in awhile. In a word - BUSY. We are learning to control Jim's pain levels proactively. If we know he is going to be busy he premedicates with pain meds (especially physical activity or lots of walking.) He went to the auto show with Chad and Charlie last week and did fine - even thought to bring an extra pain pill just in case.
We went snowtubing last week also. He made it about 2 1/2 hours before calling it quits - then he and Ruthie hung out by the bonfire (Ruthie was dancing the night away to the DJ - too funny. Mikayla was little Miss Daredevil going down the chutes.
We have gotten his night tremors pretty much under control. However, if he misses his night time dose I notice. I on the other hand still am unable to sleep - and if I do not well. My doctor is scheduling a sleep study to see if it is me. We know Jim has sleeping issues - but he sleeps through them. I often wonder if he is keeping me from sleeping. Not sure, hope the test will shed some light.
As most of you know, Dad had his hip replacement 2/17 - he is doing great! He is close to being discharged by PT because he is doing SO WELL. I have to admit - I expected the worse!
We are still adjusting to Jim not driving. The little things are what drive us crazy. His biggest complaint - no more McDonald's trips on Mondays (he takes the kids so I can sleep after working the night shift.) Thankfully, Aunt Mary has offered to take them on Mondays. He is happy, the kids get out and I get to sleep - it is a win, win, win situation.
There are little things here and there that have changed. Again he has good days and he has bad days. (It seems like one day dementia symptoms are worse and the next ALS symptoms.) There are still some days I can live in denial and believe this is all a mistake - then I look back. Yes, day to day things haven't changed but what big changes from 6 months ago!
Hope all is well - thanks for thinking of us.
I realized I haven't posted in awhile. In a word - BUSY. We are learning to control Jim's pain levels proactively. If we know he is going to be busy he premedicates with pain meds (especially physical activity or lots of walking.) He went to the auto show with Chad and Charlie last week and did fine - even thought to bring an extra pain pill just in case.
We went snowtubing last week also. He made it about 2 1/2 hours before calling it quits - then he and Ruthie hung out by the bonfire (Ruthie was dancing the night away to the DJ - too funny. Mikayla was little Miss Daredevil going down the chutes.
We have gotten his night tremors pretty much under control. However, if he misses his night time dose I notice. I on the other hand still am unable to sleep - and if I do not well. My doctor is scheduling a sleep study to see if it is me. We know Jim has sleeping issues - but he sleeps through them. I often wonder if he is keeping me from sleeping. Not sure, hope the test will shed some light.
As most of you know, Dad had his hip replacement 2/17 - he is doing great! He is close to being discharged by PT because he is doing SO WELL. I have to admit - I expected the worse!
We are still adjusting to Jim not driving. The little things are what drive us crazy. His biggest complaint - no more McDonald's trips on Mondays (he takes the kids so I can sleep after working the night shift.) Thankfully, Aunt Mary has offered to take them on Mondays. He is happy, the kids get out and I get to sleep - it is a win, win, win situation.
There are little things here and there that have changed. Again he has good days and he has bad days. (It seems like one day dementia symptoms are worse and the next ALS symptoms.) There are still some days I can live in denial and believe this is all a mistake - then I look back. Yes, day to day things haven't changed but what big changes from 6 months ago!
Hope all is well - thanks for thinking of us.
Friday, February 19, 2010
Thursday, February 11, 2010
WDW - back to the real world!
Well - we are back to the mounds of snow and cold - not that Florida was all that warm - but at least we could leave with out scarves, mittens, hats, boots, etc, etc, etc....
Overall our trip went real well... I made it a whole week without 1 Xanax (though there were a couple of times I should have gave in!)
What did I learn the most? -- how much I have changed in the last year!!
Things that would have sent me into a rage a year ago just were mildly - moderately annoying. For every bad thing something good happened. At one point security refused to let our stroller/wagon into the park (apparently you can't have a "cart" you pull) - Insted of losing it I insisted that the give me a stroller (mind you this was day 3, thus park 3 with no previous problems.) They gave me a voucher good for the week - the park stroller was easier to manuever - so worked well.
The scooter was a life saver - could have never made it without it. We packed the thing to the brim (including small cooler, umbrellas, clothes, etc...etc...etc.) Though Jim wouldn't use the disability pass to "cut" in line our waits were usually under 10 minutes (longest was 25.) The day before our trip he saw our family doctor to get pain meds (his pains are getting really bad - especially with activity.) The guy who wouldn't take Tylenol a year ago went through nearly 30 Vicodin in a week - but thank God we had them. - Made the pain managable. He found sometimes he had to walk - was getting to stiff from sitting in the scooter to long.
I began to realize how bad his memory and movements are getting (yes again)... amazing how it suddenly changes like that - everytime I think he is "evening out" I notice something new.
I lost my "purse/bag" at the park - left it on the bathroom door while changing Ruthie - someone returned it - my video camera and all!!
Friday Ruthie came down with a 101.5 fever - but there were tornado warnings at the park so we spent the day at the hotel anyhow. Thank God for Tylenol. Saturday she seemed fine - until she fell asleep during the parade - noticed a slight fever again. Took her "home" and put her to bed. About 1130 she woke up screaming and burning up - soaked in sweat...long story short Ruthie and I got to experience another 1st - our 1st ambulance ride - we were in ER until after 5am Sunday for an upper respiratory & ear infection. Also got 1st taxi ride back to hotel. Got to bed about 530 and up at 7.
On the connecting flight home I realized we forgot a carry-on on the previous flight. (Some how with a sick girl, a tired girl, a husband with dementia - I lost track of it.) So our bag was on its way to Phoenix, AZ - apparently it wasn't ready for the cold weather. In it were some of our meds, my wedding ring, our camera, the kids "lovies" (favorite bedtime animals) and souveniers. I didn't even realize what all was missing besides the animals and camera - I was sick.
Tuesday at 1130pm - there was a knock on my front door - my bag found its way home all by itself!! - I was SO excited. Working on getting the pictures uploaded.
Wednesday was Mikayla's 6th Birthday and tomorrow is her Birthday party. Today was follow-up for Ruthie - she is still sick - but it is a virus so we have to wait it out.
All in all it was a very memoriable trip and week.
Also while we were gone - we came home to find our driveway cleared by neighbors. So lucky to live in such a friendly community. Again tonight a neighbor came to lend a hand - Jim can no longer lift the shovel - he can only push it and this snow weighs a ton! I am working on plan B since our snowblower is of course on the blink!!
Hope everyone is doing well - glad to be back!
Overall our trip went real well... I made it a whole week without 1 Xanax (though there were a couple of times I should have gave in!)
What did I learn the most? -- how much I have changed in the last year!!
Things that would have sent me into a rage a year ago just were mildly - moderately annoying. For every bad thing something good happened. At one point security refused to let our stroller/wagon into the park (apparently you can't have a "cart" you pull) - Insted of losing it I insisted that the give me a stroller (mind you this was day 3, thus park 3 with no previous problems.) They gave me a voucher good for the week - the park stroller was easier to manuever - so worked well.
The scooter was a life saver - could have never made it without it. We packed the thing to the brim (including small cooler, umbrellas, clothes, etc...etc...etc.) Though Jim wouldn't use the disability pass to "cut" in line our waits were usually under 10 minutes (longest was 25.) The day before our trip he saw our family doctor to get pain meds (his pains are getting really bad - especially with activity.) The guy who wouldn't take Tylenol a year ago went through nearly 30 Vicodin in a week - but thank God we had them. - Made the pain managable. He found sometimes he had to walk - was getting to stiff from sitting in the scooter to long.
I began to realize how bad his memory and movements are getting (yes again)... amazing how it suddenly changes like that - everytime I think he is "evening out" I notice something new.
I lost my "purse/bag" at the park - left it on the bathroom door while changing Ruthie - someone returned it - my video camera and all!!
Friday Ruthie came down with a 101.5 fever - but there were tornado warnings at the park so we spent the day at the hotel anyhow. Thank God for Tylenol. Saturday she seemed fine - until she fell asleep during the parade - noticed a slight fever again. Took her "home" and put her to bed. About 1130 she woke up screaming and burning up - soaked in sweat...long story short Ruthie and I got to experience another 1st - our 1st ambulance ride - we were in ER until after 5am Sunday for an upper respiratory & ear infection. Also got 1st taxi ride back to hotel. Got to bed about 530 and up at 7.
On the connecting flight home I realized we forgot a carry-on on the previous flight. (Some how with a sick girl, a tired girl, a husband with dementia - I lost track of it.) So our bag was on its way to Phoenix, AZ - apparently it wasn't ready for the cold weather. In it were some of our meds, my wedding ring, our camera, the kids "lovies" (favorite bedtime animals) and souveniers. I didn't even realize what all was missing besides the animals and camera - I was sick.
Tuesday at 1130pm - there was a knock on my front door - my bag found its way home all by itself!! - I was SO excited. Working on getting the pictures uploaded.
Wednesday was Mikayla's 6th Birthday and tomorrow is her Birthday party. Today was follow-up for Ruthie - she is still sick - but it is a virus so we have to wait it out.
All in all it was a very memoriable trip and week.
Also while we were gone - we came home to find our driveway cleared by neighbors. So lucky to live in such a friendly community. Again tonight a neighbor came to lend a hand - Jim can no longer lift the shovel - he can only push it and this snow weighs a ton! I am working on plan B since our snowblower is of course on the blink!!
Hope everyone is doing well - glad to be back!
Wednesday, January 13, 2010
What a Day.... What a change...
First ALS Clinic appointment today...
1st met with the neurologist. No big change there - she wrote an order to get a handicapped sticker - so our parking spots got better
Jim' lung function is good and he hasn't lost any weight (actually up from this time last year) - yet he lost 2" in his waist - had to buy him new jeans for Christmas.
His right side is weaker then left but overall strength is good.
2nd - met with social worker - nothing exciting there
3rd - speech pathologist & nutritionist - alls good there. Swallowing function good.
4th - Occupational therapist - spasicity has increased in legs so they increased meds for that (maybe now he will stop kicing me in his sleep) He has a mild "drop foot" bilaterally. Definate gait issues (which we new) - "assigned" stretching exercises to help keep flexibility (especially in legs.) Limited range of motion - especially in feet & legs. should be able to flex foot 20 degrees - only gets 10 on left and 5-6 on right.
5th (and final) - occupational therapist - same, right side worse then left. Delayed reaction/processing time (you can almost see him "think" abou things).
Big decision here - NO MORE DRIVING! Wasn't prepared for that one. Both mom & I thought he was doing so well the last couple weeks - built up a little denial - torn bac down.
Next ALS Clinic is in 6 months.
1st met with the neurologist. No big change there - she wrote an order to get a handicapped sticker - so our parking spots got better
Jim' lung function is good and he hasn't lost any weight (actually up from this time last year) - yet he lost 2" in his waist - had to buy him new jeans for Christmas.
His right side is weaker then left but overall strength is good.
2nd - met with social worker - nothing exciting there
3rd - speech pathologist & nutritionist - alls good there. Swallowing function good.
4th - Occupational therapist - spasicity has increased in legs so they increased meds for that (maybe now he will stop kicing me in his sleep) He has a mild "drop foot" bilaterally. Definate gait issues (which we new) - "assigned" stretching exercises to help keep flexibility (especially in legs.) Limited range of motion - especially in feet & legs. should be able to flex foot 20 degrees - only gets 10 on left and 5-6 on right.
5th (and final) - occupational therapist - same, right side worse then left. Delayed reaction/processing time (you can almost see him "think" abou things).
Big decision here - NO MORE DRIVING! Wasn't prepared for that one. Both mom & I thought he was doing so well the last couple weeks - built up a little denial - torn bac down.
Next ALS Clinic is in 6 months.
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