@A MyParkinsonsTeam Member, maybe when I've been a Parkie for 23 years like you, maybe I'll feel like you do. No offense, BUT I TRULY HOPE and PRAY I DO NOT! I am celebrating my 15th officially diagnosed with Parkinsons. I do mean "celebrating"! I could have ALS or Alzheimer. My breast cancer could have metastasized. But I thank my Lord, I have not had to deal with any of those issues and am able to wake up on the "right side of the divot." My husband and I have had discussions about my inability to convey how I am feeling. He does know when my Rytary or Sinmet is off and knows very well how I feel!! He has learned in the last 15 years that when I am “off” stay away from me, don’t talk to me, just leave me alone. I cannot always explain why I fall. I am standing still or walking off and suddenly I find myself on the floor. I am just as surprised, shocked, and annoyed as he is. Whether we can explain what it is like being in our Parkie world or not, it is our responsibility to help people understand.
To that thought, I am on a board of directors for our local humane society. I took the opportunity during a couple of board meetings to educate my fellow board members on PD. Nothing terribly technical, but I told them about the motion issues, dyskinesia, bradykinesia, cognitive deficiencies…. Also explaining that my symptoms are not like anyone else’s! You could do the same. I am surprised you haven’t in these 23 years. If you are not inclined to be teacher, then go to the Davis Phinney Foundation website and order Every Victory Counts and have your family read it. It is a free book written in “Parkineese” ! {It is a free publication, THE best I have come across on PD!!]
Attitude is everything! Sometimes bad vibs become self-fulling-prophecies.
Good Luck my friend…

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A MyParki...

Thanks for hugs. It is true that a positive attitude is important. Scientific studies have shown that people with a positive outlook have a better course and outcome for all sorts of conditions. Movement is also important. My husband has had some improvement in posture, balance and attitude since he started Rock Steady Boxing. I think part of it is due to spending time with other parkies.
I have also benefited by spending that hour talking with other wives who bring their husbands.

Being positive helps the body fight disease. Humor may not be a cure all but sometimes a bad joke on further reflexion hits home in a positive way. If you agree, let's shake on it. ;-)

It would be extremely difficult for others to fully understand what you/we with PD go through. My family still has a tough time watching me be much less active and involved; even though I was diagnosed 18 years ago when I was 44!

The other difficulty for them is comprehending the depression and severe anxiety that I go through since my DBS.

Today though, in a conversation with my 17 year old grandson, he asked why I was always smiling. I said ‘why not?’ I can choose to be smiling despite what is happening to my body’. My family has seen me cry as well.

I have explained the best I am able what it’s like for me and what they can do or say during my real bad days. They can’t fix me and shouldn’t stop their lives. As long as I am able to use my brain and run my mouth, all will be well.

How each of us deals/copes with PD is up to you. Share your wisdom, laughter and tears. No, others can’t fully understand, but sharing your feelings and making sure that it’s okay for you to have your tough times; will help you and others.

@A MyParkinsonsTeam Member: You have expressed yourself clearly and reached out to us...would writing a short letter or suggesting a candid talk with your PD nurse/neurologist or support group help at all? You are clearly dear to the people hugging you in the photograph. Maybe they are afraid - of what is to come for you (and them) and of hurting your feelings..ignorance of a situation can breed more exaggerated concerns because of imagining things. Perhaps they are worried about offending your pride in offering help...you won't know til one of you addresses the elephant in the room. Sending hugs and love in the meantime..

I know it is hard telling people you love and seeing their sadness for you on their faces, but you still have a life to live the best you can and it may all be so much better or different than you/they fear. They will also be there to celebrate the good times too.

Keep looking here for support and get help from your Dr so s/he can help you. I can do so much more than I had imagined and some health issues turned out to be treatable/passing that I thought were there "forever" and I have shared some real poignant joyful moments with friends and fellow PD "Warriors:...You are unique and beautiful...x

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A MyParki...