1. < Parkinson's Disease
Moderator

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.

johnjames | @johnjames | Feb 19, 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 sharing and caring-as I'm sure you know well how hard it can be, when time is filled with so many things that must be done-to stop and talk about ones self is humbling and just hard to do. But I have been praying for someone that I could relate to-involving living with the memories of 2 wars and the amount of death- which at times seems everywhere -from the job to just helping others who need a Minister to perform a funeral to walking with someone who's loved one is on life support. Thank you again and for your geniue caring. JJAMES

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knightkris | @knightkris | Feb 19, 2017

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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1 reply
TNTRedhead | @tntredhead | Feb 19, 2017

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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2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 19, 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 Please know that we care for you and your needs for support and encouragement, especially when you are feeling low. Our own physical illnesses (combined with those who we love) can be very disheartening. You have shared with others so beautifully and we value both your responses and your sharing of your needs as well. I know that I'm going to sound like the proverbial "broken record" here, but have you considered a personal support group and/or an exercise program. I believe that you live in the Phoenix area and Barrow Neurological Institute has many support groups, here is the link, https://www.barrowneuro.org/patients-families/. I recognize in the past that you have not shown an interest in personal one-on-one support groups, but as a favor to me would you at least look at the web site and see if there is a group nearby and just call and inquire about their meetings? Also, there is a great DVD exercise program for folks with PD that might interest you. If you would like more information I'll send it to you by private email as I know that we are not suppose to advertise products. Thank you for reaching out to us with your need, JJames. We appreciate and value you! Teresa

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johnjames | @johnjames | Feb 18, 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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Thank you for your feed back- it is most appreciated- I see a therapist once in a while, not very often- I have a dear wife who has medicals issues as well- all physical and I really can't to do the best I can for all involved. God keeps me going and He understands deep depression- something that's a burden for sure- but it is what is. Thanks Much. JJAMES

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Liz1 | @elizabethbryant | Feb 18, 2017
In reply to @denie57 "Hello to Everyone! I've been away awhile trying to sort through physical and mental difficulties and..." + (show)
@denie57

Hello to Everyone! I've been away awhile trying to sort through physical and mental difficulties and make life decisions. I have recently gone on disability indefinitely. I began this PD journey 1 year ago. After coming to grips with my diagnosis which took a couple of months, I began a proactive approach and mindset to exercise, diet and general lifestyle choices. I began to slump and fall of in my quest in September, 2016 when my father suddenly died of a massive heart attack. I wasn't necessarily that close with my father, but he was my father nevertheless, and my last living parent. It did have an impact that I didn't anticipate. I am an only child and his passing began a series of flashbacks and memories of all those that have left my life. Depression started setting in an I became more sedentary and isolated. The holidays were a struggle and working became more and more of challenge. So, I decided to go on disability to try to get back on track. It is very scary--I'm only 60 years old and not really ready for retirement mentally nor financially. But, I felt myself slipping away to the point that I wouldn't be good for anything or anybody very soon. Feeling better physically because I have gone back to PT and now have OT and will begin ST therapy again real soon. Looking for a physical support group and group exercise, something I couldn't take advantage of while working. If anybody has insight and experience with filing for SSI and the process, please share.

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Regarding SSI go to Social Security office and the workers will tell you if you qualify for SSI on the spot. At least
they do in my town, I had to sign a paper that said I did not want it. It is not much. I don't want a lot of government
control, but if you need it every little bit helps.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 18, 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

Jump to this post

@johnjames, first and foremost, I want you to know that we are here and we will always listen. While you are trained in psychology, there are times that we all need the help of a professional. JJames, do you have a therapist?

You are carrying a big load. I hope sharing your burden can help lighten the load. I know you've connected with @trouble4343 in the past and talked about dealing with PD/mental health combination. Dorothy, I was wondering if you had some thoughts to share with JJames?

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ggopher | @ggopher | Feb 18, 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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<br><br><br><br><br>Yes, the Azilect is an addition. There is some thought it may slow the progression. Worth a try.<br><br>Steve  

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 18, 2017
In reply to @denie57 "Hello to Everyone! I've been away awhile trying to sort through physical and mental difficulties and..." + (show)
@denie57

Hello to Everyone! I've been away awhile trying to sort through physical and mental difficulties and make life decisions. I have recently gone on disability indefinitely. I began this PD journey 1 year ago. After coming to grips with my diagnosis which took a couple of months, I began a proactive approach and mindset to exercise, diet and general lifestyle choices. I began to slump and fall of in my quest in September, 2016 when my father suddenly died of a massive heart attack. I wasn't necessarily that close with my father, but he was my father nevertheless, and my last living parent. It did have an impact that I didn't anticipate. I am an only child and his passing began a series of flashbacks and memories of all those that have left my life. Depression started setting in an I became more sedentary and isolated. The holidays were a struggle and working became more and more of challenge. So, I decided to go on disability to try to get back on track. It is very scary--I'm only 60 years old and not really ready for retirement mentally nor financially. But, I felt myself slipping away to the point that I wouldn't be good for anything or anybody very soon. Feeling better physically because I have gone back to PT and now have OT and will begin ST therapy again real soon. Looking for a physical support group and group exercise, something I couldn't take advantage of while working. If anybody has insight and experience with filing for SSI and the process, please share.

Jump to this post

@denie57 I am so sorry to hear of the loss of your dad. Whether or not it was a close relationship, losing your last parent is a tough experience for everyone. It is so good to hear from you!! When we don't hear from our members, I get concerned. It sounds as if you have been making some major changes and I'm glad that you are feeling better as a result. Regarding applying for SSI perhaps some of our members, @chrisj2491 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle @macbeth @knightkris, have information about that. You can certainly go to a Social Security Admin office in your area and talk to them. I understand that there are advocates that assist people get SSI, so you might see if you can research that online and find a SSI Advocate in your area and check out their cost and their success rate. It is sometimes good to have an advocate to help you plead your case. In the meantime, enjoy the slower pace of your life. I retired a few years before I wanted to but I've really enjoyed the time to devote to exercise classes and getting the extra rest that I need. Teresa

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denie57 | @denie57 | Feb 18, 2017

Hello to Everyone! I've been away awhile trying to sort through physical and mental difficulties and make life decisions. I have recently gone on disability indefinitely. I began this PD journey 1 year ago. After coming to grips with my diagnosis which took a couple of months, I began a proactive approach and mindset to exercise, diet and general lifestyle choices. I began to slump and fall of in my quest in September, 2016 when my father suddenly died of a massive heart attack. I wasn't necessarily that close with my father, but he was my father nevertheless, and my last living parent. It did have an impact that I didn't anticipate. I am an only child and his passing began a series of flashbacks and memories of all those that have left my life. Depression started setting in an I became more sedentary and isolated. The holidays were a struggle and working became more and more of challenge. So, I decided to go on disability to try to get back on track. It is very scary--I'm only 60 years old and not really ready for retirement mentally nor financially. But, I felt myself slipping away to the point that I wouldn't be good for anything or anybody very soon. Feeling better physically because I have gone back to PT and now have OT and will begin ST therapy again real soon. Looking for a physical support group and group exercise, something I couldn't take advantage of while working. If anybody has insight and experience with filing for SSI and the process, please share.

REPLY
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