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

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?

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

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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
https://www.brainandlife.org/articles/playing-ping-pong-to-cope-with-parkinsons-disease/

@mlsol Hello Mary,

As it has been a while since you last posted about your mom's problems with PD I was thinking about you and her. Is she maintaining her weight now? I hope you are doing well.

Will you post again with an update?

Hi @marilynjoan and welcome to Mayo Clinic Connect's discussion group on PD. I'm wondering how long you have had PD? What is the most difficult symptom you are dealing with now? You mentioned that Rasagiline was not helpful to you? Have you tried other meds?

I do agree with you about exercise. It really helps keep disability from becoming severe.

Are there any types of exercise that you've found more helpful than others?

Hello @juliekmm and welcome to Mayo Connect. I'm glad that you posted about this medication. I can see that you have had one response from @marilynjoan, who did not find the drug helpful. Please remember though,Julie, that all people react differently to medications. Have you tried other PD medications like Carbidopa/Levodopa?

I certainly agree with @marilynjoan that exercise is a great way to keep Parkinson's disability at bay. If you go on Youtube you will PD exercises specifically for people with PD. There is no charge to watch these and they can be very helpful. Here is one of those Youtube videos, https://www.youtube.com/watch.

There are others that you can access on Youtube as well.

Have you had special physical therapy for PD yet, Julie?

Hello @telios and welcome to Mayo Clinic Connect. I'm so glad that you joined this discussion group to help your wife. It sounds as if she has a lot of uncomfortable symptoms with constipation being the worst. Constipation is a problem for most of us who have PD.

If you could share a bit more I'm wondering how long ago your wife was diagnosed with PD? Have her doctors suggested anything for constipation? Many of us have found fiber supplements (like Metamucil) helpful as well as stool softeners (Miralax or Colace). I use both products daily.

We currently have a Connect discussion group all about PD and constipation. Here is the link, https://connect.mayoclinic.org/discussion/constipation-and-parkinsons. You can read what others are saying and doing about this problem.

Also, here is an article from the Parkinson's Foundation website on the topic of constipation, https://www.parkinson.org/Understanding-Parkinsons/Symptoms/Non-Movement-Symptoms/Gastrointestinal-Issues, In this article, you will read that nausea and swallowing problems can also be a problem. Since your wife has been losing a lot of weight perhaps this is a problem for her as well?

You also mentioned that she has spasms. Are the spasms in the abdominal region?

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

Thank you

Yes expensive drug, did nothing for me except give me joint pain. Exercise is one of the best medicines for this disease.

Hello I'm Julie and newly diagnosed with Parkinson's in March, 2021. I am not on medications yet, but my neurologist suggested I consider Rasagiline as a possible slowing of symptoms. Has anyone had experience with Rasagiline?