Lexie Jones
Forum Replies Created
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I, the wife, was diagnosed with PD in 2020. My symptoms have been moderate. I take a moderate dose of carbo/dopa, and I exercise regularly to try to keep ahead of the disease as I have read in numerous studies this is advisable.
About a year ago, my husband started exhibiting noticeable symptoms of PD. He went to see my doctor and she said after a visual exam that he might have PD and she put him on a low dose of carbo/dopa. Since then, his symptoms have increased to the point that he has more symptoms than I have and his are more pronounced. A number of months ago, our doctor did a deep skin biopsy on him which came back negative for PD. It was 95 to 99% accurate for predicting whether or not he had PD. So, she said he has parkinsonians and not PD.
Just this week, we went to Duke University to a neurologist there who specialized in PD. He did a very thorough physical exam on my husband after talking to us. He also was able to read all the medical records that had been kept by our doctors and the testing that had been performed in the past. He ended up saying that if he just went by the testing he had done, he would say my husband definitely had PD. But because of that deep skin biopsy result, he would be forced to say my husband doesn’t have PD, but rather parkinsonians.
So, we have been living with both spouses with at least symptoms of PD. We’ve made it just fine so far. We have had to cut back on long distance driving trips which bothers us as our kids are 7 to 10 hours away. That’s been the toughest issue so far. Also, my husband tends to get really tired and fall asleep during the day when he should be doing things. I do have to rely on my husband often when I need to walk down steps. Other than these few things, we are doing ok.
I do worry about our future though. What happens when we both get to the point where we both need more care and assistance. Dear God, what happens then?
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I’ve been taking mine just during the day, 4 times from 7 AM to about 10 PM. Recently I have started having muscle spasms in my feet and legs up to my knees starting about 4 AM. My doctor said, “Let try a slow-release carbo/doba 2 pills at bedtime and see if that helps.” I have not seen any improvement in the muscle spasms, and I am having slightly more trouble with my sleep. I am really surprised by these results. I just reported them to the doctor earlier today and am awaiting feedback from her. Will let you know what I hear.
Meanwhile, blessings to all.
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Yes, I’ve had a problem that seemed to start about the time I was diagnosed with Parkinson’s. Just recently I was referred to a Urologist and she has sent me to a therapist for Physical Therapy. I have just started with her but I am hopeful that she can help me resolve my problem with urinary control.
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When I started with my doctor after my diagnosis, she recommended I engage in an exercise program and gave me several suggestions. One was Pedaling for Parkinson’s held at the YMCA. I joined it and after a while I got to know some of the other participants. Turns out we all went to the same doctor. Eventually a support group was started that is held monthly at a site in our town. They provide all kinds of programs with information that is important to those with Parkinson’s and to their caregivers. We’ve met more people and made more friends to expand our community. It’s been invaluable to all of us.