Living with Parkinson's Disease - Meet others & come say hi

Thanks- I live in the Desert Ridge area, and looking for a group that starts after 11am. I can't get moving until that time, the body just doesn't work. Thanks again JJAMES

@johnjames You are right! He does not turn the other way, He is always there! I have no doubt that you will have the courage to walk through this valley as you have walked through so many others. (Also, if you give me the general geographic area where you live I might be able to find a PD support group and then you can make a decision to go when you feel ready.) Blessings!

johnjames, Colleen connected your name and mine, I think because I have been involved in the PD/mental health combination for quite awhile: Bipolar Disorder for some 40+ years and PD for who knows how long. I think of them as the two "rulers of my life" - and I am not always sure which one is on top. We talk about stigma a lot with mental health, but what PD people 'receive' from their friends is about the same thing! Really the only thing you can do is get to the point where you know "you are the one in charge of you" and what the others think is really their problem. It is easy (and I know it first hand) to pull back and just remain alone, but being the 'only one in charge of you' when you pull back, the 'only one you are hurting" is also your. Want to talk more, just let me know! Trouble4343

@johnjames
No, it doesn't sound like a cop-out. I've always been pretty quiet and inward, and it's difficult for me, too - also with family, some of whom I've fallen away from over the years, too. I get it.

Best wishes,

Macbeth

I have been looking for a support group- and not been real sucessfull in that area, it me I'm sure, being a retired soldier after 40 plus years-it hard to be around allot of people. Hope that doesn't sound like a cop out. Thanks much JJAMES

Thank you for sharing- right now I'm at the complete " burned out level" in time I'm sure-as you said it will get better, it's hard to believe friends and family -after 20-30 years turn the other way. WOW- Thank God He doesn't HOOAH

@johnjames
I totally understand. The same thing has happened to my husband, who has dementia, and myself. Friends, and most family, have done the disappearing act. I saw the same thing happen with my parents - who had been VERY involved, social people - when my father had Alzheimer's.

I'm not sure what that is about. A lot of people who are relatively well just don't want to deal with illness - even the ill person's children, often do not want to deal with it. I also think that many, if not most, people in our society, get pretty freaked out about anything that effects the brain, cognition, functionality. There is a real lack of maturity in many people when it comes to those things.

If you could become involved in a support group, at least there would surely be others who have the same situation as you do, who would understand what you are going through, and may even have some helpful suggestions, or may be interested in having coffee some time. I'm still working on this myself. It may not be our preference, but, at least, it is something, and it is a place to start.

Wishing you strength and success.

Macbeth

Hi JohnJames, Thanks for having the courage to reach out when your instinct is to isolate yourself. I'm bringing @trouble4343 into this conversation because she, too, has experience with Parkinson's and managing mental health.

@johnjames Thanks so much for sharing with us the difficult place that you find yourself in right now. I appreciate your honesty. I'm sure that you are hurting right now. Because Parksinson's is a brain disorder, there is an emotional component to having PD.When you say, that it's not your fault, you are right, it is most likely a brain chemistry problem. I would encourage you to talk with a doctor about how you are feeling. There are some good meds that help deal with the brain chemistry problem that Parkinson's causes.. There are a lot of different meds available, if one does not work you can always try another. I am hopeful that once the meds help the brain chemistry problem, you can then begin to get out with others. This might include a support group, an exercise class (water exercise is very good) and you will begin to feel better. Keep us posted on how you are doing. At one time those of us with PD have been where you are and we know the road out of isolation and depression is not an easy road to travel, but once you begin the journey you will be so glad that you did. Best wishes, my friend!

I have been diagnosed with Parkinson's 3-4 years now- really been affected by it the last 2 years, what's hard to deal with is-most al of my friends and co-workers has stopped coming around or even calling. I would say even my family at times think I'm too needy - about friendships and just being around people- which is also very hurtful to hear from those who ( I know -love me) but at times that doesn't come out maybe the way they mean it-or if I'm depressed from the parkinson's. So I have been isolating myself for the last year, not really seeing or talking to anyone and no one seems to pick up on the being alone -issues and think and tell me it's my fault, which I know it's not- God know we all need people and real friends- just to be friends. JJAMES