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.
Friday, April 23, 2010
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.
Saturday, December 26, 2009
We had an AMAZING Christmas!!
Hard to believe 24 hours ago I was so down - crying, wondering what next Christmas will bring , thinking how much things have changed, tearing up with mom as I told her about Jim's new symptoms (mostly calf cramps)
Then - Christmas morning - the kids has their Christmas list filled by ALSGA. Jim enjoyed his gifts and even remembered I wanted a waffle iron. We had many cards & packages - some from my sister's mother's group. They got our story from a gripe my sister posted and took off.
We got to see Jim's Grandparents then went to my parents for our annual Christmas brunch. My whole family was there - parents, sisters, BILs and 5 kids. Suddenly the doorbell rings - we go looking expecting to see Mikayla's friend from down the street, instead we find Santa & Mrs. Claus!! The hand a gift for our family and a bag of Chocolates. I open the card - we got a trip to Disney World!!! After some probing - my sister had written a letter to DW - pasting in some sections of a letter I had written. She said she got a call asking some questions but that was it. She knew nothing about it. We leave Feb. 1 -- I think I am more excited then the kids!!! Jim was kidding that I may pack tonight!! I am so glad I only have 1 month to wait - the anticipation my kill me! Guess when we pack up the Christmas stuff we'll have to get the summer clothes back out!
Then - Christmas morning - the kids has their Christmas list filled by ALSGA. Jim enjoyed his gifts and even remembered I wanted a waffle iron. We had many cards & packages - some from my sister's mother's group. They got our story from a gripe my sister posted and took off.
We got to see Jim's Grandparents then went to my parents for our annual Christmas brunch. My whole family was there - parents, sisters, BILs and 5 kids. Suddenly the doorbell rings - we go looking expecting to see Mikayla's friend from down the street, instead we find Santa & Mrs. Claus!! The hand a gift for our family and a bag of Chocolates. I open the card - we got a trip to Disney World!!! After some probing - my sister had written a letter to DW - pasting in some sections of a letter I had written. She said she got a call asking some questions but that was it. She knew nothing about it. We leave Feb. 1 -- I think I am more excited then the kids!!! Jim was kidding that I may pack tonight!! I am so glad I only have 1 month to wait - the anticipation my kill me! Guess when we pack up the Christmas stuff we'll have to get the summer clothes back out!
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