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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.

ggopher | @ggopher | Feb 24, 2017
In reply to @hopeful33250 "@mariemarie The BIG program is good for speech problems for PD folks,a speech therapist will help..." + (show)
@hopeful33250

@mariemarie The BIG program is good for speech problems for PD folks,a speech therapist will help you practice projecting your voice. I could not use it because I have a paralyzed left vocal cord. Most PD patients have voice problems but not usually a paralyzed vocal cord. Makes me different, I suppose. I had the vocal cord treated at Cleveland Clinic. They implanted a silastic implant so that the paralyzed cord would close up with the working cord and that helped with swallowing, choking and speech. This is not typical for PD patients, so don't worry about it. Thanks for calling me young, I'm just a few years behind you actually. There is a new term called "young-onset" Parkinson's and it is for diagnosis under the age of 50. My PD probably started in my late 40's and was not diagnosed for a number of years. It's been an interesting journey to say the least! It has been nice getting to know you. Teresa

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<br><br><br><br><br>Interesting. I had a vocal chord reinforced with Kevlar about 5 years ago but it was blamed on the Epstein Barr virus as antibodies were found in my blood. Had no idea PD could be to blame.<br><br>Steve  

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 24, 2017
In reply to @hopeful33250 "@mariemarie The BIG program is good for speech problems for PD folks,a speech therapist will help..." + (show)
@hopeful33250

@mariemarie The BIG program is good for speech problems for PD folks,a speech therapist will help you practice projecting your voice. I could not use it because I have a paralyzed left vocal cord. Most PD patients have voice problems but not usually a paralyzed vocal cord. Makes me different, I suppose. I had the vocal cord treated at Cleveland Clinic. They implanted a silastic implant so that the paralyzed cord would close up with the working cord and that helped with swallowing, choking and speech. This is not typical for PD patients, so don't worry about it. Thanks for calling me young, I'm just a few years behind you actually. There is a new term called "young-onset" Parkinson's and it is for diagnosis under the age of 50. My PD probably started in my late 40's and was not diagnosed for a number of years. It's been an interesting journey to say the least! It has been nice getting to know you. Teresa

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@ggopher Hi Steve: Most docs have told me that it probably is not related to PD, but not quite sure what. Most folks with PD do have vocal cord problems but the paralyzed cord is a bit of a phenomena. Makes life interesting, I suppose! Teresa

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ggopher | @ggopher | Feb 24, 2017
In reply to @hopeful33250 "@mariemarie The BIG program is good for speech problems for PD folks,a speech therapist will help..." + (show)
@hopeful33250

@mariemarie The BIG program is good for speech problems for PD folks,a speech therapist will help you practice projecting your voice. I could not use it because I have a paralyzed left vocal cord. Most PD patients have voice problems but not usually a paralyzed vocal cord. Makes me different, I suppose. I had the vocal cord treated at Cleveland Clinic. They implanted a silastic implant so that the paralyzed cord would close up with the working cord and that helped with swallowing, choking and speech. This is not typical for PD patients, so don't worry about it. Thanks for calling me young, I'm just a few years behind you actually. There is a new term called "young-onset" Parkinson's and it is for diagnosis under the age of 50. My PD probably started in my late 40's and was not diagnosed for a number of years. It's been an interesting journey to say the least! It has been nice getting to know you. Teresa

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<br><br><br><br><br>Mine wasn't paralyzed but was weakened. Nice to know that something wrong me might not be PD. <br><br>Steve  

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 27, 2017
In reply to @mariemarie "How do i add myself as a member?" + (show)
@mariemarie

How do i add myself as a member?

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@mariemarie Great question Marie! Here is how you become a Member of the Parkinson's group: Go to the top of this page and on the left side you will see in blue type the words,"Parkinson's Disease." Click on that. Then you will come to the Parkinson's home page. At the top right of that page, you will see the word "Following" in a dark blue. Click on that and you will become a Member. As a Member, you will then receive notifications anytime someone posts in the Parkinson's group. I hope that everyone else will do this as well, @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle @macbeth @knightkris @colleenyoung Teresa

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 13, 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 Hi David: We haven't heard from you in about a month. How are you doing? Any changes in your symptoms since you last checked in with us? We would appreciate hearing from you and knowing how you are doing. Please keep in touch. Teresa

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 13, 2017

@johnjames Hi, it's been a while since we heard from you. How are you doing? I know that you had some concerns regarding a new problem. Please let us know how that is going. I'm looking forward to hearing from you. Teresa

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1 reply
marie | @mariemarie | Mar 13, 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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Johnjames, do u take meds for depression?

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johnjames | @johnjames | Mar 13, 2017
In reply to @tntredhead "JJames, you are always such a strong person for everyone else and your messages always touch..." + (show)
@tntredhead

JJames, you are always such a strong person for everyone else and your messages always touch my heart. Please let someone help you now. I am very much like you in that I don't share things with others and support groups have been something I have avoided. But perhaps this is the time that you need one. Please consider what Teresa said to you. You are in my thoughts and prayers.

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Thank you( tntredhead) I really don't know what the next steps are, now I just trying to be quiet and wait upon the Lord's small voice to lead us- Thank you for your love and concern- and for your Prayers. John

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johnjames | @johnjames | Mar 13, 2017
In reply to @hopeful33250 "@johnjames Hi, it's been a while since we heard from you. How are you doing? I..." + (show)
@hopeful33250

@johnjames Hi, it's been a while since we heard from you. How are you doing? I know that you had some concerns regarding a new problem. Please let us know how that is going. I'm looking forward to hearing from you. Teresa

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Hi Teresa- Well, if it wasn't for the wisdom and support of Colleen through her e-mail and her reasoning- I might of stopped. I have been struggles with new pain, new problems -due to agent orange, and with the bones that's affects, new medical with all kinds of side affects and much more -I won't dump on you. just Thanks for caring and praying for all of us and thinking of me as well. JJAMES

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