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

@mlsol

Hi Mary!

I think we will all feel better when the weather warms up. Whenever I can get outside and walk it does wonders for me. I've not heard of the swelling below the lip before but meds can cause different reactions. Is the area red or itchy? Does she drool as well?

Hello @bastiles and welcome to Mayo Clinic Connect. I would encourage you to post your question on housing accommodations in the Visiting Mayo Clinic Group here: https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/

Members will be happy to connect with you!

My 83 yr old wife lives with Parkinson's. Her central issue is constipation with spasms that bring on anxiety, tremors, voice whisper, rigidity, imbalance just about every morning around 9 a.m. She lies on the floor with heat pad on her tummy and after an hour the symptoms abate only to resume around 3 p.m. Her gastroenterologist prescribes Amitiza and after months of dealing with her, including a cystoscopy, can't seem to nail the exact cause of these episodes. A PT says her bowels are quite normal and suggests exercise, six glasses of water before 3 p.m. daily. When nothing works, she resorts to using a suppository which sometimes helps. Also, she has lost some 30 lbs and is now at 98 lbs.

Any suggestions on the constipation issue will be much appreciated.
Phil

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?

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

Thank you

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?

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?

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?

@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?