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.

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 group.

@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: If you don’t mind me saying- it is hard- very hard and don’t feel bad about that or beat yourself up for your feelings. it took me almost 2 years before most of everything sunk in to my little brain. I didn’t want to believe, I didn’t want to believe it is caused from Agent orange-a gift from the Viet Nam war. or all the side affects- but with the help of good doctors to talk too and friends and my spouse- it is better now, but the depression is not really that much better- that’s what keeps me down most of the time. Yes, depression is part of Parkinson- But don’t let it direct your path in life, find some trusted friends and do things thats fun and talk it out- dumb it out- which has to be with someone that really cares. In My Prayers my friend-always jjames

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@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 Teresa- Yes, I would like the information of the DVD, THANKS……I say this with no regrets, my spouse has allot of memories issues and she needs me to drive more than not, She is a wonderful person about not complaining until just in the last couple months– which the Doctors told me that it is normal. She tried her best to be helpful for me and she does allot of good things-others could not. But it still very hard, she doesn’t know the depression is so sever and constant- The medication helps very little and I see my Doctor and I tell him of the situation- but some things we just can;t do or fix. This group helps more than anyone could imagine. Barrow’s is great- but they don’t take my insurance or my the times I need to meet-which I understand, I’m still looking for a group I could sit with and listen. But again this group is awesome and Colleen does a great job. I Thanks God I found you all. Thank you, your very kind and caring jjames

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@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 Hi JJames, thanks for your reply and your kind words, you are a caring and insightful individual and that makes you a wonderful participant in our online support group. You mentioned that Barrows does not take your insurance, however, I was suggesting one of their support groups. As a general rule, support groups do not have fees, they are formed so that people can come together and share feelings and experiences. As a personal favor to me, would you please call about their support groups and ask if there is a fee to attend? On their website they lists several support groups with various days and times of meetings. Best wishes, JJames! Teresa

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@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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Teresa, Yes I will contact them and inquire about support groups and I hope there is some in my area. Thank you and I promise to let you know. Thanks again for all your kind words. Blessings. jjames

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@johnjames

knightkris: If you don’t mind me saying- it is hard- very hard and don’t feel bad about that or beat yourself up for your feelings. it took me almost 2 years before most of everything sunk in to my little brain. I didn’t want to believe, I didn’t want to believe it is caused from Agent orange-a gift from the Viet Nam war. or all the side affects- but with the help of good doctors to talk too and friends and my spouse- it is better now, but the depression is not really that much better- that’s what keeps me down most of the time. Yes, depression is part of Parkinson- But don’t let it direct your path in life, find some trusted friends and do things thats fun and talk it out- dumb it out- which has to be with someone that really cares. In My Prayers my friend-always jjames

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Especially when I don’t have many friends and I don’t have any family left at all I’m all alone and dealing with the loss of my mother last year it’s not helping much at all I have been seeing a couple of counselors but that doesn’t really help much at all yes I’m not used to having Parkinson’s and I still haven’t accepted it yet my biggest problem is I’m alone now after my mother passed away I have nobody to talk to or ask anything when I had issues before I would talk to my mom even when she was in the home with Strokes and a little bit of dementia I could still talk to her and ask her and get advice from her because she was still there and would respond to me in her own way Parkinson’s has thrown me a curveball if I may call it that I just got on disability and that’s good news but still there’s a lot of issues going on in my life that are causing me problems have to move I don’t know that many people to even help me. trying to find a place to live dealing with my landlord and I have so much to do by the end of the month it’s really really causing me great deal with depression and stress and that Sort of shuts me down. What I’m going through tonight is the fact that I have nobody to talk to I don’t have an older wiser individual that I can go to and just listen to me or give me some advice both my parents have passed away now I have two sisters but we haven’t spoken in years and years you only time they spoke to me it was one of my mother passed away for me to sign the papers at the lawyers and that was it and they haven’t spoken me since that was over a year ago what it comes down to is I have Parkinson’s fibromyalgia that whole bunch other things a car accident I was just in a few months ago I spent 16 years looking after Mom so I don’t have a girlfriend or wife or kids again just alone yet I’m trying and seem to be coping okay with this by myself and with the help of maybe this group I might be to deal with it better I am speaking with a counselor at the Parkinson’s Society of BC for five or six sessions and then it’s over with I need long-term counseling to deal with everything oh by the way this is voice texting so that’s why there’s no periods or capitals or anything thank you very much for your time

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@knightkris Thanks for sharing your feelings and thoughts with us. Yes, we can’t go through difficult times alone, we need support. That is why Mayo Connect is such a great place. I’m glad that you are here with us and talking. Have you looked for a PD support group in your area? A one-on-one support group will put you in touch with others who are walking the same road and they can become your friends. Teresa

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Hi. My name is Marie. I was diagnosed last week at Mayo Fla with Mild Parkinson Syndrome. Treatment is 150 minutes/week of exercise. No medicine. My fitness center has the BIG program and Peddling for Parkinson. I am experiencing anxiety. Hope exercise helps. Doc said it may/may not get worse. If it does, it may take months or years. Glad i found this forum.

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@mariemarie

Hi. My name is Marie. I was diagnosed last week at Mayo Fla with Mild Parkinson Syndrome. Treatment is 150 minutes/week of exercise. No medicine. My fitness center has the BIG program and Peddling for Parkinson. I am experiencing anxiety. Hope exercise helps. Doc said it may/may not get worse. If it does, it may take months or years. Glad i found this forum.

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Welcome @mariemarie,
You’ll meet a great group of supportive people in the Parkinson’s group who will share their experiences and journeys with you. Exercise certainly helps anxiety. Here is an article and discussion you may be interested in reading:

– Depression and anxiety: Exercise eases symptoms http://mayocl.in/2med70Q

Marie, what is the BIG exercise program? What symptoms of Parkinson do you experience?

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My symptoms are tight upper legs. I also need to work on my left foot gait. I’ll get back to u regarding BIG. It’s stretching and shouting. I’ll know better what it’s about once i start. I guess u know boxing is good, too.

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@mariemarie

Hi. My name is Marie. I was diagnosed last week at Mayo Fla with Mild Parkinson Syndrome. Treatment is 150 minutes/week of exercise. No medicine. My fitness center has the BIG program and Peddling for Parkinson. I am experiencing anxiety. Hope exercise helps. Doc said it may/may not get worse. If it does, it may take months or years. Glad i found this forum.

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@mariemarie Hi Marie: I’m sorry to hear of your diagnosis but I have a similar diagnosis, mild Parkinson syndrome. I do take a small amount of meds, but exercise is the best med of all. I’m glad to hear that you can participate in the BIG program as well as Peddling for Parkinson. I have done the BIG program but not the Peddling but I’ve known of lots of friends in support groups who have done both and they speak very highly of the Pedaling program. Exercise really does help maintain balance and range of motion and stalls the effects of PD. My Parkinson symptoms began with an uncertain gait, foot dropping and vocal problems. Please feel free to share what symptoms led you to the doctor, we would enjoy getting to know you better.

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@mariemarie Yes, I have several friends involved in Boxing for PD. They speak highly of that as well. Teresa

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