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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.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 14, 2017

Thanks, @johnjames, I'm glad that Colleen was able to help. Your pain has to be so difficult. Please be assured that we are all in your corner and I am pulling for you! Teresa

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 14, 2017
In reply to @knightkris "I have not yet come to terms with having PD. But I know I have it...." + (show)
@knightkris

I have not yet come to terms with having PD. But I know I have it. The depression is difficult to deal with. I search out asaiatance.

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@knightkris I'm glad to hear that you are searching for assistance!! This is the first step along your healing journey, keep in touch and let us know how you are doing. Teresa

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david59 | @david59 | Mar 14, 2017
In reply to @david59 "Just wanted to say "Hi". this month marks 20 yrs since my first symptom of PD......" + (show)
@david59

Just wanted to say "Hi". this month marks 20 yrs since my first symptom of PD... February 1997. Generally speaking, until last April (2016) my PD has been a problem but not what I would call a disability. but starting last April I have had an accelerated progression...freezing (if the doorbell or phone rings, I'm stuck to the floor) and near falls (have only hit the floor twice luckily). My medication drops off very quickly now and I have to plan trips to the gym or grocery store around my "window of opportunity" as I call it. Well, that's all for now. 🙂

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hi. sorry it has taken me so long to respond. I'm still here. Symptoms are the same. there is a fine line to getting the right dose of medication. too much and I am very much the victim of uncontrolled arm and leg movements (only on my left side curiously). too small of a dose and I feel great until I try to stand up and walk. my doctor really has no advice except for me to consider DBS, which I don't want to do. one thing that does work in the short term is vigorous exercise. I'm good on the elliptical and the bicycle. it really reduces my symptoms.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 14, 2017
In reply to @david59 "Just wanted to say "Hi". this month marks 20 yrs since my first symptom of PD......" + (show)
@david59

Just wanted to say "Hi". this month marks 20 yrs since my first symptom of PD... February 1997. Generally speaking, until last April (2016) my PD has been a problem but not what I would call a disability. but starting last April I have had an accelerated progression...freezing (if the doorbell or phone rings, I'm stuck to the floor) and near falls (have only hit the floor twice luckily). My medication drops off very quickly now and I have to plan trips to the gym or grocery store around my "window of opportunity" as I call it. Well, that's all for now. 🙂

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@david59 Thanks for letting us know how you are doing. Exercise is great. Many of the YMCA's in my area have a Peddling for Parkinson Program but I know of a lot of PD folks who have an exercise bike and pedal on their own. I'm glad that you found what works for you. Hopefully, the meds will get adjusted for you. Teresa

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Martin Jensen, Volunteer Mentor | @predictable | Mar 14, 2017
In reply to @johnjames "Colleen, I wanted to ask or pick your brain, I have been increasingly becoming more and..." + (show)
@johnjames

Colleen, I wanted to ask or pick your brain, I have been increasingly becoming more and more depressed, how do you handle the daily depression- you I was trainined in that whole area of Psychology for 5 years. PTSD- I know caused depression-which I have for over 7 years now- maybe the Parkinson's depression really puts me in a very deep fox hole. Sometimes I have to climb up to touch the bottom. The Doctor found that my bones have been affected all through my back- they don't know why, except they are very bridal - they know agent orange cause cancer of the bone and they did a number of blood tests looking for bones cancer- Thank God they haven't found any yet, I do know that Agent orange will( in time) become cancer.-some where in your body- the way it works and it's MO. Thanks for listening and for any advice- I very much appreciate. JJAMES

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Hi, @johnjames. I hope your spirits have lifted over the past month and that I can make a small contribution to keeping them up. You mentioned Agent Orange as a factor in your medical history. My high school buddy, Michael Kjome, came home from Vietnam in 1973, infected by Agent Orange. As you might guess, it got to him and took his life 13 years later, but not before he found a wife and a new life in Norway, fathered two children, and died there in 1986. That you have come 31 years farther beyond his worthy life makes the case, hopefully, that your fate is unaffected by Agent Orange. I earnestly hope so. If you're interested in the story of his troubled time in Vietnam, check it out at https://www.pownetwork.org/bios/k/k601.htm. And tell me whether I might do more to smooth your road forward.

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johnjames | @johnjames | Mar 15, 2017
In reply to @hopeful33250 "Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @Macbeth. Well we finally have..." + (show)
@hopeful33250

Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @macbeth. Well we finally have our own group! I'm excited to learn more about you and have some more topics for discussion. Let us know how you are doing and what has helped (or hindered) you in your daily life with Parkinson's. As we know, all of us are stronger together!

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Hi Teresa- Not sure of the question- But I live close to that area. JJAMES

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 15, 2017
In reply to @hopeful33250 "Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @Macbeth. Well we finally have..." + (show)
@hopeful33250

Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @macbeth. Well we finally have our own group! I'm excited to learn more about you and have some more topics for discussion. Let us know how you are doing and what has helped (or hindered) you in your daily life with Parkinson's. As we know, all of us are stronger together!

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@johnjames Was this regarding finding a support group in the Phoenix area? Teresa

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johnjames | @johnjames | Mar 15, 2017
In reply to @david59 "Just wanted to say "Hi". this month marks 20 yrs since my first symptom of PD......" + (show)
@david59

Just wanted to say "Hi". this month marks 20 yrs since my first symptom of PD... February 1997. Generally speaking, until last April (2016) my PD has been a problem but not what I would call a disability. but starting last April I have had an accelerated progression...freezing (if the doorbell or phone rings, I'm stuck to the floor) and near falls (have only hit the floor twice luckily). My medication drops off very quickly now and I have to plan trips to the gym or grocery store around my "window of opportunity" as I call it. Well, that's all for now. 🙂

Jump to this post

Teresa- thank you for always helping me in many ways- and for your willingness to do so. what can I do to help your research???

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charlton11 | @charlton11 | May 20, 2017

Hi
I am in the Uk and am caring for my 87 year old mother in Law.
It wits end with symptoms, ie she has bad balance problems, hardly walks but if she does she needs a frame, slur in here speech, blood pressure all over the place from 102/75 to 222/95.
Shuffles when walking and massive fatigues.
Also feeling of head full a lot of times!
Suffers from small vessel disease in brain and doctors say pots!
Do you think there is any Parkinsonism in her?
Here is hoping for some guidance .
Steve. England. Uk.

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Jamie Olson | @jamienolson | May 20, 2017

@charlton, Hello and welcome to Mayo Clinic Connect. This community forum is one where we share medical experiences and give support for people with similar diagnoses. We do not give medical advice nor are we physicians. We do have resources that we can pull from the Mayo Clinic Web page if someone is searching something specific.

I have found a link on POTS information listed on the Mayo web http://mayocl.in/2rpMJGM
In addition, here is a link with information on Parkinson's disease- http://mayocl.in/1sW44lG.

Also, if you are interested, here is a link to our caregivers group- http://mayocl.in/2h1ttpY. This would be a good place for you to connect with others who are caring for a loved one.

Steve, how long have you been caring for your Mother-in-law?

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