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.

@psvantx

Saw my doctor again this week to clear up some confusion....asked him how I could see improvement in my symptoms if I basicly don’t have any....yet! He agreed that i shouldn’t start the meds yet.....and that further development could be 10 years from now! (or less)! So thankful I went back to ask questions.....wondering why this info wasn’t forthcoming initially instead of prescribing meds!! 😳

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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.

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@hopeful33250

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.

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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!

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@psvantx

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!

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Good plan, @psvantx. Don't neglect exercise, though. It is important as we age.

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@psvantx

Saw my doctor again this week to clear up some confusion....asked him how I could see improvement in my symptoms if I basicly don’t have any....yet! He agreed that i shouldn’t start the meds yet.....and that further development could be 10 years from now! (or less)! So thankful I went back to ask questions.....wondering why this info wasn’t forthcoming initially instead of prescribing meds!! 😳

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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.

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@ggopher

@psvantx,
I was diagnosed in late 2014 and put on Sinemet immediately with Azilect being added some months later.
I have not had a significant problem, just a little stomach fullness and a tiny bit of unrest. I had almost no experience with or knowledge of PD which has enabled me to take it in in small bites and has held my anxiety to what half a Clonazepam twice a day controls.
I would highly recommend you try the pills. I belong to two in-person support groups and have never heard of anyone who reacted significantly to these two drugs. Sure. 1 in whatever thousand may have some sort of issue but the rest don’t. You don’t stay in your bedroom because driving to the store is hazardous do you? After 5 1/2 years most people are amazed that I have PD. Not saying you will be as fortunate as I am, at 74 it won’t kill me, but it is a quality of life thing.
Let us know how it goes-we're on your side. Get plenty of exercise, eat right and enjoy life. This is just a speed-bump.

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Thank-you so much.....this is very helpful and encouraging! 😘

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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.

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@sallyk

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.

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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,

https://www.youtube.com/watch?v=wkDiOCIX_xA
https://www.youtube.com/watch?v=Ez2GeaMa4c8

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?

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@stephenmcelroy

I told my wife. I spoke with my minister prior to doing so. He reassured me that because my attitude was good due to my faith and trust in the Lord, that it would be a stabilizing and calming effect on those close to me as I gave them the information (she does not share my faith, yet, and I do not push her). That seems to have been the case. She was at first anxious but quickly became at ease as I explained the disease and my trust in God for His plan (which He did reveal to me the day after the diagnosis as I asked Him to do).

For anyone this might help, His Word was revealed to me through my daily reader: Proverbs 24 verses 10-12 and the interpretation of those verses as follows: "Trusting in God rather than our own schemes during times of adversity and relying on God when we are hurting often speaks the loudest to those who do not know Jesus. Our greatest platform to influence people for Christ is when we live with the hope of spiritual wisdom. Doing so may very well be the means God uses us to deliver those who are marching toward eternal death. Because we cannot claim ignorance and forfeit our mission to reach the lost, we dare not waste our adversity."

God speaks to us. We only need to ask and to listen. He will present us with His direction for us to follow. It is our free will to choose or not. Attempting to choose what is in front of you in a manner that is consistent with His Word will result in Him guiding your footsteps as you follow the path He presents. When you trust in the Lord, you will see the path He places in front of you to follow. You will "hear" Him speak to you in many ways if you just "listen." I have confident expectations (hope) that this will help someone in their journey with this disease. Praise the Lord.

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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.

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@hopeful33250

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,

https://www.youtube.com/watch?v=wkDiOCIX_xA
https://www.youtube.com/watch?v=Ez2GeaMa4c8

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?

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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.

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@stephenmcelroy

@hopeful33250 thanks for the specialist info

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@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.

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