Symptom management tips for Parkinson's cough and Respiratory dyskinesia
Hello! My wife has Parkinson's Disease and related dementia. One of her symptoms includes periodic bouts of Parkinson's cough and respiratory dyskinesia when her meds are being less effective. Given her length of time dealing with this disease, her meds have become increasingly less reliable. So, does anyone have any tips for how they've successfully helped to manage Parkinson's cough and/or respiratory dyskinesia?
Many thanks!
Hi
I am so glad you reached out. I had to slightly edit your post to remove your email address as per our Community Rules: Activity cannot contain any personal information such as an e-mail address, physical/mailing address, or phone number. Please remember that Health Union websites, like the entire Internet, are publicly viewable and discoverable by search engines.
I can hear how difficult this is for your wife. I am hoping these articles can help: https://parkinsonsdisease.net/living/make-the-most-of-your-doctors-visit, https://parkinsonsdisease.net/answers/short-of-breath and https://parkinsonsdisease.net/living/stress-release-mindful-breath. Please keep us posted with how she is doing. Jill (Team Member)thank you for reaching out, Jill. Since this is my first time posting in this community board, I was unaware of the protocol. You're cautious editing is most appreciated and I shall look forward to reviewing the article links you provided. Again, most appreciated, Alan Pritz no problem at all, it is for your protection, we are here to make sure this is a safe community and we are glad you have joined us!! Jill (Team Member)
I have reviewed the articles and appreciate them. Unfortunately, and perhaps not uncommonly, the composite nature of my wife's Parkinson's Cough and Respiratory Dyskinesia are not readily addressed in terms of symptom managment. Descriptions are provided but not necessarily ways to effectively address them. In my wife's case, there is an unclear relationship between her carbidopa levodopa (CL) intake and its symptom impact. Sometimes the meds seem to help alleviate these conditions, sometimes I wonder if they cause them. And, her neurologist, despite being undoubtedly very good, has little to offer aside from suggesting the new subcutaneous pump to deliver medication more continuously during the day. Ultimately I think we'll have to do that but it won't be available on the market until October so I'm trying to address dramatic symptom manifestations in the meantime. Long-winded reply but that's the scope.
you are right, most people begin to experience fluctuations in their symptom control. Also, possible long-term side effect of carbidopa-levodopa therapy is dyskinesia. I am sending this article over that has more information about this plus information on the pump: https://parkinsonsdisease.net/clinical/duopa-pump-carbidopa-levodopa-pros-cons. I am also sending this article over about how to help with the "off time" of when the medication is not helping: https://parkinsonsdisease.net/living/six-tips-managing-off-time. I really hope this can help. Jill (Team Member)
Thank you, again, Jill. I appreciate the input and links provided. We are waiting until the subcutaneous pump becomes available in October and then shall likely try it. And, we've been in extensive communication with my wife's neurologist to see how her symptoms may be better managed. Unfortunately it's a bit like chasing a greased pig given the variability of factors so the docs are often at a loss of how to assist aside from some tweaks here and there. And, believe me, we've tried them all! That is why I wondered if there was anecdotal input about 'outside the box' things which some have found helpful with these symptom sets. I don't expect much, if anything, but figured it's worth asking about. Again, most grateful!
I think it is great that you asked and I really hope our community members will respond here with anything they found helpful. Please keep us posted on how your wife is doing. Jill (Team Member)
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