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

Posted by Colleen Young, Connect Director @colleenyoung, Dec 8, 2016

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.

annissha | @annissha | Oct 14, 2020
In reply to @johnbishop "Hello @annissha, Welcome to Mayo Clinic Connect. The Parkinson's Foundation has some information on Finding the..." + (show)
@johnbishop

Hello @annissha, Welcome to Mayo Clinic Connect. The Parkinson's Foundation has some information on Finding the Right Doctor here: https://www.parkinson.org/expert-care/Patient-Centered-Care/Finding-the-Right-Doctor. @hopeful33250 and other members may also have some suggestions for you.

Did your current doctor have any suggestions for you?

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He just left without any opportunity for me to have any communication with his but I did get some good ideas here to know how to find a different doctor. Thank You

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 12, 2020
In reply to @annissha "I am Anita and live alone in a very remote area, with my chickens and a..." + (show)
@annissha

I am Anita and live alone in a very remote area, with my chickens and a few goats. I have decided to try this to see if anyone has ideas of what to look for in a new doctor, or even how to find one. My first doctor is moving away (he really was nice but did not seem to know a great deal about Parkinson), he is a Neurologist. Any suggestions would be appreciated Anita

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@annissha

Hi Anita

When you are looking for a neurologist to treat Parkinson's, a movement disorder specialist is your best choice. This group of neurologists have special training in Parkinson's as well as several other disorders. You do not mention the state where you live, however, a teaching hospital, medical school or other multi disciplinary health center (like Mayo Clinic) would undoubtedly have movement disorder specialists on their staff.

Could you share a little about your history with PD? How long ago were you diagnosed? What is your most difficult symptom right now?

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Oct 12, 2020
In reply to @annissha "I am Anita and live alone in a very remote area, with my chickens and a..." + (show)
@annissha

I am Anita and live alone in a very remote area, with my chickens and a few goats. I have decided to try this to see if anyone has ideas of what to look for in a new doctor, or even how to find one. My first doctor is moving away (he really was nice but did not seem to know a great deal about Parkinson), he is a Neurologist. Any suggestions would be appreciated Anita

Jump to this post

Hello @annissha, Welcome to Mayo Clinic Connect. The Parkinson's Foundation has some information on Finding the Right Doctor here: https://www.parkinson.org/expert-care/Patient-Centered-Care/Finding-the-Right-Doctor. @hopeful33250 and other members may also have some suggestions for you.

Did your current doctor have any suggestions for you?

REPLY
1 reply
annissha | @annissha | Oct 12, 2020

I am Anita and live alone in a very remote area, with my chickens and a few goats. I have decided to try this to see if anyone has ideas of what to look for in a new doctor, or even how to find one. My first doctor is moving away (he really was nice but did not seem to know a great deal about Parkinson), he is a Neurologist. Any suggestions would be appreciated Anita

REPLY
2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 1, 2020
In reply to @betsyp "Hi Teresa -- My dad had a tremor in left hand/arm that became more pronounced (he..." + (show)
@betsyp

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, It has been a while since you first posted about your dad's Parkinson's symptoms. How is he doing? You mentioned that anxiety was a problem that you were trying to address. Have the meds helped with that?

I look forward to hearing from you with an update when it is convenient.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 15, 2020
In reply to @johnbishop "@hopeful33250 and @johnjames, I am a Navy Vietnam vet but have no experience with Agent Orange..." + (show)
@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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Mentor
John, Volunteer Mentor | @johnbishop | Sep 12, 2020
In reply to @hopeful33250 "Hello, To all in our Parkinson's discussion group. I recently received a post from one of..." + (show)
@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.

Jump to this post

@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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1 reply
johnjames | @johnjames | Sep 12, 2020

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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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 12, 2020

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.

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 7, 2020

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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