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.
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