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!!
Monday, October 25, 2010
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!!
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