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.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by fellow member and volunteer patient Mentor, Teresa (@hopeful33250), when you post to this group. Learn more about Moderators and Mentors on Connect.

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?

@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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Hi teresa,
So we both have same diagnosis. Is a syndrom same as disease? Mine started with numbness in left leg then gait issue january 2016. Went to Emory Atlanta last year. Doc did not think i had PD. Suggested a DAC scan which was abnormal. But neurologist in Knoxville where i live said i had very subtle symptoms. Said to exercise. Went to Mayo in Florida last week. Neurologist said he believed i had Mild Parkinson Syndrome. Said i need to do 150 minutes/week of exercise. I belong to a fitness center. Went this am. I hired a personal trainer. Did one hour exercise this am. I live alone but have great family within minutes.

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@mariemarie I’m under the impression that “syndrome” is less serious than disease, however, I don’t know that as a medical fact. My neurologist told me not to be concerned about becoming very disabled. I have not had the numbness or tightness that you mentioned but I do have the gait issues. I have a staggery-walk, especially if I’m tired or not on time with meds. I just can’t walk in a straight line, however with the meds and exercise my gait is much better. I will also have the foot drop if I’m low on the meds. Before I started taking the meds I would have the “freezing.” It is where you have a hard time walking through a door way, or just walking forward at any place. it’s like you are frozen in one spot. Have you had that symptom? I just take small doses of medicine two or three times a day and that keeps me walking well. The meds seem to increase the communication between my brain and my lower extremities. I also had neurologists tell me that I didn’t have PD but after a few falls I decided to look into the matter again and got a diagnosis. I’m glad I did as I’m sure you are as well. Keep in touch and we will both keep exercising! Teresa

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Haven’t had freezing. Doesn’t mean i won”t. When were u diagnosed?

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@mariemarie Perhaps you will never have the freezing. I was diagnosed about four years ago, but had the symptoms for about 15 years prior to that. They just became really annoying though at the time of diagnosis and were resulting in falls. Have you had any falls? The first neurologist I saw when the symptoms first started thought it might be early stages MS, but could not prove it. Later another neurologist thought it could be early stages PD, but I thought that you had to have tremors and be at least 70 to have PD and I was in my late 40’s at that time. I’ve also had voice problems, do you have a weak voice as well? Teresa

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Teresa, no falls. I was told the BIG program teaches u how to talk louder. Wonder how that’s done??? I’m 71. U are young to have PD.

Marie

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@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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