Yesterday was Charlie's second visit with Dr. Slevin, his Neurologist/Parkinson's doctor at Lexington Clinic. Dr. Slevin is a guru in Parkinson's research at the University of Kentucky. We heard him speak several years ago and were very impressed with his knowledge of the disease and medications. He has a good "bed-side manner".
I was really dreading this appointment because I have witnessed very subtle, but very real instances that Parkinson's has taken a greater hold on Charles. I am so glad I went with him because the two doctors that we talked to alleviated a lot of my fears. One fear is that Parkinson's could be the cause of his knee issues. Not so! There is no pain related to Parkinson's. Stiffness related to Parkinson's can be offset with exercise. (I knew that!) So, he has an appointment with Dr. Chatta this month and I am going with him to see what our options are. If he suggests knee replacement, I think Charles should do it. We shall see. But at the very least, I am going to encourage him to go to the gym daily. Why not, since Silver Sneakers covers the cost? I know daily visits to the gym made me feel better. (He just left for the gym. Yes, I need to go with him, but not this time!)
Another fear is the instances of confusion I have witnessed with being slow of thought, time, money, etc. Turns out this is a side effect of the medication he is taking for tremors (shaking). He has had a lot of problems with this medication too with dry mouth. But, it is a "super-drug" for tremors. Dr. Slevin told him to self-adjust the medicine to get to a balance he can tolerate with tremors/side effects. So, I am hopeful that he can cut this medicine in half. I need to remember Matthew 6:25 and let God take care of tomorrow and not worry about dementia. I could easily get dementia before he does.
Charles has been doing so much better recently with getting involved with conversations of others, laughing more and being involved with life. I know that winter is worse for him and fear that this will be a bad winter. He can't get out into the sunshine much because the cold weather causes his hand to hurt. We talked to a beautiful lady that works with Dr. Slevin who was diagnosed with Parkinson's about the same time Charles was (I kid you not -- she was wearing at least 4'" heels). She said the best advice that she can give is "Live life and stay active!" So, I realize I have to work harder to keep him busy (if we can fit it into our already busy life). And, I have to work harder at keeping a positive outlook so that he will.
They are still encouraging us to start a support group in Mt. Sterling. I really don't want to because I think it would be hard for me to come up with "meeting material" since I don't have Parkinson's. And I know this would totally fall on me. It would be a worthy thing to do and I know Charles would benefit -- I just don't think I am ready -- maybe someday when I retire. Onward, upward!
Saturday, September 13, 2014
Friday, March 7, 2014
New doctor! New hope!
New doctor! New hope! The neurologist in Georgetown that Charles was going to has moved to Prestonsburg so we were forced to get a new doctor. Even though we never had problems, I always had concerns because he was "green" -- fresh out of school. I was never confident that Charlie was on the right medications/dosages.
We were very fortunate that Dr. Owens set Charlie up with an appointment with Dr. Slevin today. Dr. Slevin has been a leader in Parkinson's research at UK for many years. He is a guru in his knowledge of Parkinson medications. And the good news is that Dr. Slevin did not change anything; no medication adjustment is needed. He did tell us that he thinks Charlie is four years into the disease, not two. And I agree.
Several months back based on the success that a childhood friend had with Brain Stimulation surgery, Charlie set up an appointment with Dr. Van Horn for testing. But, he has since cancelled his appointment and decided not to proceed with testing. After researching side effects, he decided to instead focus on treatment for his knee. Both Doctor Owens and Dr. Slevin think that was the right decision.
With all that being said -- from where I sit, I feel that Parkinson's took a little bit bigger hold on Charlie in 2013. It seems to me that his muscles have gotten weaker - that his grip is lighter. It is hard to attribute a symptom to Parkinson's fully because he has other health issues, with one usable hand and an arthritic knee. But, I have watched him get slower this year. The fork goes slower from the plate to the mouth. He fumbles with things like keys -- it just takes longer to do things. He fumbles with his phone, rarely getting it before the caller has hung up. He has a hard time putting his jacket on. He stays in bed much longer in the mornings. Many days, he isn't out of bed when I leave for work. He is walking on a cane most of the time, which is arthritis. But, it is hard not to wonder how much of the knee problem is arthritis and how much is Parkinson's. Another thing that changed in 2013 was his driving skills. I began noticing that we were taking very wide left turns. He admitted to me that driving is no longer automatic for him. He has to make a conscious effort to drive -- he has to mentally tell his hand what to do. But, he is still driving.
Mentally, he seems to be doing much better. He is talking and laughing much more. He seemed very upbeat after his appointment today. Hopefully, warm weather will come soon and he can get out and get some sunshine.
For me personally, I am not handling the Parkinson's as well as I thought I would. The patience that I had with my children doesn't come as easy as it used to. It is hard to separate the habits that "always" annoyed me from the habits that he now has no control over. An example is, when he is looking for something in a drawer or cabinet -- he won't look past what he first sees. He comes to me to find it for him. It is hard not to say, "Your mother doesn't live here." I am finding that I have to work much harder on ME. So that is my goal for 2014 -- be a better caregiver. We are very blessed and need to count our blessings every day!
We were very fortunate that Dr. Owens set Charlie up with an appointment with Dr. Slevin today. Dr. Slevin has been a leader in Parkinson's research at UK for many years. He is a guru in his knowledge of Parkinson medications. And the good news is that Dr. Slevin did not change anything; no medication adjustment is needed. He did tell us that he thinks Charlie is four years into the disease, not two. And I agree.
Several months back based on the success that a childhood friend had with Brain Stimulation surgery, Charlie set up an appointment with Dr. Van Horn for testing. But, he has since cancelled his appointment and decided not to proceed with testing. After researching side effects, he decided to instead focus on treatment for his knee. Both Doctor Owens and Dr. Slevin think that was the right decision.
With all that being said -- from where I sit, I feel that Parkinson's took a little bit bigger hold on Charlie in 2013. It seems to me that his muscles have gotten weaker - that his grip is lighter. It is hard to attribute a symptom to Parkinson's fully because he has other health issues, with one usable hand and an arthritic knee. But, I have watched him get slower this year. The fork goes slower from the plate to the mouth. He fumbles with things like keys -- it just takes longer to do things. He fumbles with his phone, rarely getting it before the caller has hung up. He has a hard time putting his jacket on. He stays in bed much longer in the mornings. Many days, he isn't out of bed when I leave for work. He is walking on a cane most of the time, which is arthritis. But, it is hard not to wonder how much of the knee problem is arthritis and how much is Parkinson's. Another thing that changed in 2013 was his driving skills. I began noticing that we were taking very wide left turns. He admitted to me that driving is no longer automatic for him. He has to make a conscious effort to drive -- he has to mentally tell his hand what to do. But, he is still driving.
Mentally, he seems to be doing much better. He is talking and laughing much more. He seemed very upbeat after his appointment today. Hopefully, warm weather will come soon and he can get out and get some sunshine.
For me personally, I am not handling the Parkinson's as well as I thought I would. The patience that I had with my children doesn't come as easy as it used to. It is hard to separate the habits that "always" annoyed me from the habits that he now has no control over. An example is, when he is looking for something in a drawer or cabinet -- he won't look past what he first sees. He comes to me to find it for him. It is hard not to say, "Your mother doesn't live here." I am finding that I have to work much harder on ME. So that is my goal for 2014 -- be a better caregiver. We are very blessed and need to count our blessings every day!
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