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.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by fellow member and volunteer patient Mentor, Teresa (@hopeful33250), when you post to this group. Learn more about Moderators and Mentors on Connect.

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?

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,

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.

Liked by janwesty

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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,

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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My 94-year-old father has Parkinson's — late onset — he wasn't diagnosed until he was 88. He is in an assisted-living facility, and I am his primary caregiver. COVID-19 has caused facilities to make some hard decisions; family members can't enter the facility my dad is in. It is so difficult not be able to help him with all kinds of tasks of daily living, knowing that he is lonely and I am missing what may be my last years/months with him. My dad has begun to have mild hallucinations which don't seem to be medication related as there have been no changes to his medication. One doctor recommended Nuplazid, but his neurologist doesn't think it is necessary yet. Does anyone have experiences with this drug?

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@betsyp

My 94-year-old father has Parkinson's — late onset — he wasn't diagnosed until he was 88. He is in an assisted-living facility, and I am his primary caregiver. COVID-19 has caused facilities to make some hard decisions; family members can't enter the facility my dad is in. It is so difficult not be able to help him with all kinds of tasks of daily living, knowing that he is lonely and I am missing what may be my last years/months with him. My dad has begun to have mild hallucinations which don't seem to be medication related as there have been no changes to his medication. One doctor recommended Nuplazid, but his neurologist doesn't think it is necessary yet. Does anyone have experiences with this drug?

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@betsyp Hello and welcome to the Parkinson's discussion on Mayo Clinic Connect,

I am sorry to hear of your dad's recent diagnosis of PD as well as his current problem with mild delusions. It must be heartbreaking not to be able to be with him at this time.

If you are comfortable sharing more, could you share what symptoms led to your dad's diagnosis of PD at age 88? Was it walking problems, falls, speech, etc.? Is he currently taking carbidopa/levodopa?

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@hopeful33250

@betsyp Hello and welcome to the Parkinson's discussion on Mayo Clinic Connect,

I am sorry to hear of your dad's recent diagnosis of PD as well as his current problem with mild delusions. It must be heartbreaking not to be able to be with him at this time.

If you are comfortable sharing more, could you share what symptoms led to your dad's diagnosis of PD at age 88? Was it walking problems, falls, speech, etc.? Is he currently taking carbidopa/levodopa?

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Hi Teresa — My dad had a tremor in left hand/arm that became more pronounced (he had had a slight tremor in his jaw as well), so his GP sent him to a neurologist. He started to have balance issues and had to give up his beloved Chuck Taylor high-tops (at 88!) for sturdier shoes. His symptoms progressed fairly slowly. He began taking carbidopa/levodopa, but unfortunately he had a terrible neurologist who was not good at monitoring and following up on medication dosages. At one point he was so over-medicated that in a period of two weeks he became unable to walk and was experiencing strong hallucinations. I promptly got him to a different doctor who greatly reduced the c/l and my dad became himself again. It was a horrible experience.

My dad needed to move to assisted living at that point. A year ago I moved him to Texas to be near me, and he is doing pretty well but his speech is very mushy (in spite of speech therapy), his manual dexterity is very poor, and he spends part of the time in his wheelchair, using a walker the rest of the time.. We got a Parkinson's specialist in Houston and she has worked very hard to get a good dosage of c/l for him, trying different amounts and working on the optimum spacing between doses. He takes a mix of instant release and continuous release c/l, and a 4mg Neupro patch. He also gets physical and occupational therapy for periods when needed.

One of his biggest challenges has been anxiety, a major symptom of Parkinson's that is overlooked and minimized since it isn't a visible physical symptom. It is managed with lorazepam (Ativan). Managing all of the medications that a 94-year-old takes is challenging!

Thanks for your interest!

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Hello @betsyp,

I so appreciate your post and I admire the way you have been proactive and have advocated for your dad during this time in his life. People in their 90's with a chronic disease like Parkinson's need advocates to make sure they have the best doctors and resources available to them. It sounds like you are on top of his health needs. As he is in an assisted living facility, are you able to visit him there, or are there restrictions on visitors?

You are right about anxiety (and depression) being an overlooked component of any organic brain disorder like PD. I'm glad that he is getting treatment for that through a med. Are there any exercise programs that he can do while seated? There are many good exercise videos available on YouTube for PD folks, including seated exercises that can be done in a wheelchair. There are also some good speech YouTube videos.

Here are some links to these videos,

and

You might also be interested in posting in our Caregiver's Discussion group. We have many members who are discussing the challenges of caring for an elderly parent or spouse. The support that they give each other is really remarkable. Scott, @IndianaScott, is the mentor of that group and I'm sure that he and the other members will welcome you if you choose to post there.

I certainly wish you and your dad well in this journey you are taking. It certainly can be challenging, can't it? Please post if you have any questions or concerns. We are here to help and support you as our own experiences have given us some first-hand knowledge of this chronic disease.

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Hello, To all in our Parkinson's discussion group.

I recently received a post from one of our members, @johnjames, who has Agent Orange-related Parkinson's. He asked this question:

"Hi folks- Hey I'm looking for some help- I've had Parkinson's (agent orange related) for 6 years now- but 4 months ago I started having server chills and fever- it would last 10-12 hours, and then it was over-gone. now it's every week the same thing. My Doctors have tried many tests with no results. No one believes my immune system has turned on me. I'm not sure yet what that means? I'm wanting not to see an expert in Immune systems disorder-and Rheumatology. Has anyone ever heard of this problem – or is someone now experiencing such an issue? Thank you Gods Blessings John J."

I'd like to invite @ggopher or @jdb and anyone else who might be able to help answer this question.

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Thank you very much- for sending that out, My wife is an RN for 45 years and she and my doctor has no clue- The VA said that agent orange does affect the Immune system in six difference ways- but I don't know what they are yet. How are you? yes its been a couple years. I had a few serious problems with breathing- with restrictive lung disease- caused by ( guess what? you names it " agent orange caused it- so 40 % of my middle lob has collapsed) But I thank God for every day and I can now walk better and even breathing some better- so I can drink Starbucks and Pray- what else is better. JJ

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@hopeful33250

Hello, To all in our Parkinson's discussion group.

I recently received a post from one of our members, @johnjames, who has Agent Orange-related Parkinson's. He asked this question:

"Hi folks- Hey I'm looking for some help- I've had Parkinson's (agent orange related) for 6 years now- but 4 months ago I started having server chills and fever- it would last 10-12 hours, and then it was over-gone. now it's every week the same thing. My Doctors have tried many tests with no results. No one believes my immune system has turned on me. I'm not sure yet what that means? I'm wanting not to see an expert in Immune systems disorder-and Rheumatology. Has anyone ever heard of this problem – or is someone now experiencing such an issue? Thank you Gods Blessings John J."

I'd like to invite @ggopher or @jdb and anyone else who might be able to help answer this question.

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@hopeful33250 and @johnjames, I am a Navy Vietnam vet but have no experience with Agent Orange but have seen information on symptoms of Agent Orange and fever and chills are listed. Also I'm not sure if @johnjames has seen the VA page on Parkinson's Disease and Agent Orange which has some resource links on it — https://www.publichealth.va.gov/exposures/agentorange/conditions/parkinsonsdisease.asp

Agent Orange Symptoms and Effects – https://hadit.com/agent-orange-symptoms-and-effects/

Hope this helps.
John

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@johnbishop

@hopeful33250 and @johnjames, I am a Navy Vietnam vet but have no experience with Agent Orange but have seen information on symptoms of Agent Orange and fever and chills are listed. Also I'm not sure if @johnjames has seen the VA page on Parkinson's Disease and Agent Orange which has some resource links on it — https://www.publichealth.va.gov/exposures/agentorange/conditions/parkinsonsdisease.asp

Agent Orange Symptoms and Effects – https://hadit.com/agent-orange-symptoms-and-effects/

Hope this helps.
John

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Great websites, @johnbishop. I hope that @johnjames gets some helpful information to deal with these new symptoms.

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