Living with Parkinson's Disease - Meet others & come say hi
Welcome to the Parkinson's Disease group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with Parkinson's or caring for someone with Parkinson's. Let's learn from each other and share stories about living well with Parkinson's, coping with the bumps and offering tips.
Chances are you'll to be greeted by fellow member and volunteer patient Mentor, Teresa (@hopeful33250), when you post to this group.
We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let's chat. Why not start by introducing yourself?
Interested in more discussions like this? Go to the Parkinson's Disease Support Group.
Hello @psvantx
Thanks for your update. From what you said you have decided not to take any meds at this time. As I looked back at some of your original posts I see that you have had some problems with drooling and balance. These are certainly symptomatic of PD but it is hard to tell if they are bothersome enough to try meds or not. I'm supposing that they must not be too bothersome at this time. Is that the case?
I wish you well as you deal with this situation. Do you exercise on a regular basis? There are very good classes available for us seniors that help deal with balance issues. I would encourage you to look into them. Without exercise, I would be much more disabled than I am now.
Thanks.....thinking my balance issues were due to 3 UTI’s with meds including Cipro! Cipro did a number on me.....I seem to be doing better in that regard. Plan to monitor closely!
Good plan, @psvantx. Don't neglect exercise, though. It is important as we age.
Well, #psvantx, looks like we both got some good news yesterday. I had my regular 90 day check and no changes to meds are needed. Doc says I should make 20 more years. Being 74 now, that seems a little ambitious.
As to why your last few visits seemed contradictory, the disease is so different to each of us that figuring out what any one symptom is caused by and best treated by what is a real moving target.
For example, my dizziness turns out to be simple low blood pressure and can be fixed by raising the head of my bed 2 inches and adding a pinch of salt to dinner. And exercise is god for PD and most every thing else. After all, if part of the problem is junk in the brain, you need more blood flow.
Even diagnosing it is tricky, I had really expensive Executive Physicals in Houston’s best hospitals annually for 9 years with many of the classic symptoms and no one caught it until I gave in to the symptoms and retired to a mid-sized Texas town and in my first visit to a PA was diagnosed by him just watching me sit for a few minutes.
So, hope you have a great New Year and maybe I’ll see you down the road.
Thank-you so much.....this is very helpful and encouraging! 😘
Good morning ... my friend has Parkinson’s and I am her “friend caregiver”. She is a private person, single, and no family members living in the area. I care for her and don’t know how to help when she is struggling. She doesn’t share much about her challenges. My hope is that this group might provide me insightS.
Hello @sallyk and welcome to Mayo Connect! How wonderful that your newly diagnosed friend has someone to support her on this journey with PD. If I could make some suggestions for you, look into PD exercises classes in your area. Most classes are now online because of COVID-19 crisis. Here is a link to the MPF exercises, https://www.parkinsonsmi.org/mpf-programs/exercise-and-movement-activities
If you spend time with her, just turn on the exercises and watch them. Exercise and medicines for PD are the optimal combinations!
You might also see if there are PD support groups. Many now have meetings on Zoom. She can be anonymous by not showing her picture and not participating if that is more comfortable for her. She can learn much from hearing others talk about PD. Youtube also has lots of videos with information about PD as well as exercise classes. Here is a link for those,
I would also like to invite some other members to this discussion including @mariemarie, @ggopher @psvantx, @jdb @susan62. I would encourage you to also read many of the other posts here in this discussion.
What symptoms seem to be the worst for your friend now?
Hello @stephenmcelroy
It has been a while since you last posted about your PD diagnosis. How are you doing? I hope by now you have found a neurologist who is helpful to you. I would enjoy having an update from you.
First, let me send BIG KUDOS to SallyK....what a jewel! Update on me: after being diagnosed with PD and starting researching/reading everything I could find (starting Azilect), etc., I decided to visit a Parkinson’s specialist for second opinion! Glory be, he says I don’t have it and can stop the medicine....music to my ears!!! Praying he is right. He has dealt with only Parkinson’s cases for 25 years. He says lots of afflictions cause the same symptoms....which makes it easy to just diagnose PD.
@stephenmcelroy Hello Stephen,
As it has been a while since you last posted about your Parkinson's diagnosis I was wondering how you are doing. How are you feeling? Are you involved in any specific treatments?
I hope you will post again, I would like to hear from you.