Living with Parkinson's Disease - Meet others & come say hi

Hello All:

We all know how important exercise is when we are dealing with PD. Here is an article that comes from the Brain & Life magazine about how ping pong helped one woman

I am currently taking levodopa 100/25 at a rate of 4.5 pills a day. I have tried a couple of other prescriptions to try and level out the uptake and duration of the levodopa. No luck with that and that is why I was prescribed the Rasagiline. I am currently not exercising as much as I need to, due to coming down with PMR and GCA. I have been on struggle with this since January 2021. However Dance for Parkinson is a lot of fun on a weekly basis and I was daily walking with Lesley Sansone. I also was early morning walking for about 40 minutes weather permitting. I am in Canada and also belong to a Parkinson support group and I know for sure medication is different for every one of us. I was diagnosed with Parkinson’s in December 2016…Cheers…Marilyn

Sent from my iPad

So good to hear from you @marilyjoan! I am sorry to hear that you are also dealing with PMR and GCA. That is quite a combination of problems.

I also just love Dance for Parkinson's! Before the pandemic, I used to go to an in-person class but now have to rely on DVDs or using Youtube videos. Are you going to an in-person class now?

I'm wondering if your problem with meds is the off-time you are experiencing. I found that Stalevo gives me greater coverage. It is basically carbidopa/levodopa with entacapone. The entacapone helps the carbidopa/levodopa stay in the brain longer. I suppose you have tried this med already?

Glad to hear that you have a PD support group. The first few years after diagnosis I went to them religiously. As I'm now more involved with Connect I don't go regularly but they were so helpful to start with. I learned that I wasn't the only one struggling.

Since you've been dealing with PD since 2016 you must feel really experienced by now. What is your most bothersome symptom of PD?

I look forward to hearing from you again. Will you post an update?

Hello again, the most bothersome symptom is off times, tremor is in all parts of my body. I haven’t seen my neurologist properly since the pandemic started so hopefully next week I will and he will give me a solution.

I'm so glad that you will be able to see your neurologist next week. I hope that he/she is able to help you with the tremors. I've not had that particular problem, but I know that it can be exhausting.

Are you living in a large area where there might be some clinical trials being done for PD? I live in SE Michigan near the University of Michigan hospital and they are doing clinical trials on new meds all the time. If you live near a large medical center such as a university medical school, it might be worthwhile to sign up for a PD clinical trial. If you would like to see what clinical trials are available to PD, here is a website where you can check to see if there are any near you, https://clinicaltrials.gov/.

I do wish you well. I would enjoy hearing from another PD member on Connect, so I hope you keep in touch. Will you post again with any thoughts and concerns (especially after your appointment next week)?

Thanks Teresa:

Ann was diagnosed with PD 2 yrs ago. Her GI doc prescribed Amatiza 24 oz for her pelvic floor dysfunction. (Ann doesn't feel the Amatiza works) She has met with a PT specialist who claims her bowels are quite normal and suggests specific exercises with hot pad on stomach. The hot pad helps to abate the spasms.

She's tried a variety of fiber supps, such as Metamusil, Miralax and isn't sure how well they work. She now tries Benefiber to see how it will work.

Your suggested links are terrific. Thank you much.
Phil

@telios
Hello Phil,

I'm pleased to learn a little more about your wife's health difficulties. As she was just diagnosed 2 years ago, she will have a lot to learn about dealing with this disorder. Is there a PD support group that she might attend virtually? Often hospitals will provide such a support group. If she could meet with others who have PD she would undoubtedly find she is not alone and would adjust to this complicated health issue.

Regarding the constipation issue, fiber supplements and Miralax products need to be used on a daily basis in order to keep the problem from becoming chronic. I'm glad that she has been addressing the pelvic floor disorder. That can be very helpful as well.

I hope that your wife is also active and that she has some exercises that she enjoys. This is important in order to delay the progression of PD as well as to deal with constipation. There are many seated exercise videos on Youtube that can be accessed free of charge and used when she has the time and energy. Exercise is just wonderful for all aspects of PD.

The Davis Phinney Foundation offers some very good information about PD. If you sign up on their website you will get emails with very helpful information. Here is that website, https://davisphinneyfoundation.org/.

I enjoy hearing from those members who have PD. We are really better together. I hope you will keep me informed as to how she is doing. Will you post updates as you are able?

Hello,

My sister Sasha was diagnosed with PD 4 years ago but has deteriorated rapidly. She suffers from extreme rigidness and her speech had been greatly affected. She is using rotigotine patches called nubrenza and madopar 100 levodopa cardivopa 5 times a day 2 pills every day. We are now looking into dbs but her dr says since her pd has been affecting more her nervous system and speech it is uncertain on the benefits she will get.

Any patiens out there with rigid pd that have benefitted from dbs

Hello @lishensasha and welcome to Mayo Clinic Connect. First, it is so great that you are helping your sister by joining this community.

While I wasn't able to locate any current members who have shared their experience with both rigidity/dystonia and DBS, I did find a resource that may be helpful as you explore this as an option for your sister's care.

- Deep brain stimulation: Precision using segmented leads:
https://www.mayoclinic.org/medical-professionals/neurology-neurosurgery/videos/deep-brain-stimulation-precision-using-segmented-leads/VID-20457940

Does your sister's doctor specialize in DBS treatments?

She is currently seeing an abnormal movement neurologist that is not a surgeon but he works in conjunction with a surgeon that specializes in dbs. A month a go they recommended that my sister takes a psychological profile test but she has not gotten the results. They said that was important to see if she could be a candidate for dbs

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