Parkinson’s plus?

[Jacqueline Cristini]

Parkinson’s plus is a medical term that typically refers to an atypical form of Parkinsonism and not idiopathic PD, which is the most common form.

[Ally]

Thanks for sharing that, Jacqueline – I didn’t know the term was already in use for something else specifically.

[Ally]

Thanks for sharing that, Jacqueline – I didn’t know the term was already in use for something else specifically.

[Charles Schiller]

I’ve numerous other chronic illnesses: afib, coronary artery disease, diabetes,Gerd,
Celiac disease, high cholesterol. All are treated with medications. PD presents the greatest difficulties for me re balance, insomnia, and the beginning of my legs twitching at night. I’m a widower, 78, live alone. I’m in early stage.

 

[Ally]

Thank you for sharing, Charles. How long have you been living with the other conditions you mentioned?

[RicH]

Well, on the anniversary of my 19-month diagnosis, I was talking to my wife about how nice it would be to not wake up each day and think HEY, I HAVE PARKINSONS! But that said, I’ve felt pretty good and kept my humor and outlook up overall over the past 19 months.

But then I had some mini-strokes 2+ weeks ago, thanks to a tortuous carotid artery that I didn’t know was a problem. And as with the PD, it’s being treated with meds for now and life goes on. But I’ll admit that it threw me for a loop! I still see beauty around me every day and I still have a life I’m trying to pack full, even if it’s at a little different pace.

But I’m now just calling my “package deal” BRAIN BATTLE 2021! The strokes obviously take center stage these days, and now I wonder how nice it would be to wake up each day and *only* think HEY, I HAVE PARKINSONS!

[Beth T Browne]

I am 84. A 28 year breast cancer survivor. I also have a lung disease probably from whooping cough at 2. Allergies can make me very sick if I can’t control them w/a plan my old doctor created. In the last 3 years, I was diagnoised with a leaking heart valve. The third and last ecocardiogram show some not so good signs. I lost 18 inches of my colon not due to cancer. A year ago I was diagnoised with Parkinson’s, however, we are pretty sure I had it a year prior. Maybe my time on earth is about to end. I can’t figure anything out. Parkinson’s causes so many things to happen in your body. It is difficult to know what to do sometimes. I keep going. I can walk, but I have lost some balance. The Leva dopa stuff made me so sick I had to stop it after 2 weeks. I then started feeling down because I was not doing anything to help the lost of dopamine, which the movement doctor said was the cause. She did give me a bottle of Rytary, and it didn’t make me sick. But my insurance does not cover it, and I cannot afford $700 for a bottle. I did a gene test w/The University of Indiana, where they checked only two genes for genetic possibillity, but it was negative. I cannot figure where I got this. I was never raised or lived on a farm where insecticide could have caused it. I can still do most things, but I tire easily as sleep is difficult, and the movement doctor had no help there. When I can get a decent amount of sleep, I feel much better. So, I have no idea how my other illnesses may affect the Parkinson’s.

[Charles Schiller]

So to answer Ally, I had angioplasty at age 49. Turned out three coronary arteries were 90 percent occluded. Three years later I was diagnosed with Diabetes, adult onset. All my other ailments followed. I’m early stage PD but I do think about how quickly I’ll move, stage to stage. I’m hoping something else gets me first like a massive heart attack or a fast, fatal stroke. I simply will not accept living a liife with no meaning or purpose, without quality, as only I can define that for myself. I’ll control my own destiny before I lose control over being able to make such a determination.

[RicH]

Thanks for writing this, Charles: ” I’m hoping something else gets me first like a massive heart attack or a fast, fatal stroke. I simply will not accept living a liife with no meaning or purpose, without quality, as only I can define that for myself. I’ll control my own destiny before I lose control over being able to make such a determination.”

This isn’t a comfortable topic for some, but self-determination is a key factor in our struggles. I’ll remain as optimistic and life-affirming as long as I’m standing, and I want to serve as being the beset person I can to my wife and kids and friends while I have the ability. But once those abilities go? I have no real interest in being an anchor to anyone. It’s hard to discuss this, and I appreciate your candor here.

[Bill N]

I was diagnosed with PD in August of 2019 at the age of 55.  This January I got Covid and 3 weeks later I was diagnosed with optic neuritis which led to a diagnosis of MOG, an autoimmune demyelinating disease similar to MS.  I was pissed off initially thinking how could I get two ‘incurable’ neurological diseases in under 2 years!  Prior to PD I was perfectly healthy with no need for any medications.  Then I moved on and got into fight mode…. exercising 7 days a week, switching to a vegetarian diet, etc.  No one has a clue that I have PD or MOG.  Fortunately my vision is still excellent for my age.  Other than consuming a hand full of pills daily, I lead a fairly normal life.  Exercise is so key.

[Rev. Charles D. Good]

I’ve have numerous other chronic illnesses:  hypertension, type 2 diabetes, Gerd,
high cholesterol, various mental issues, such as Major Depression, and PTSD.  All are treated with medications. PD presents the greatest difficulties for me re balance, insomnia, and the beginning of my legs twitching at night. I was DX in June 2020 during the Pandemic.  I am 68, live with my wife and my son and his family.  I’m an early stage PWD, and am already on Carbidopa/Levadopa.

[Sharon Aaron]

Hi. I’m 60.  Will be 61 in a couple of months.  Was diagnosed with PD at 55.  I already had Type 1 Diabetes, now for almost 49 years.  I have been relatively well-controlled, and happy/hopeful/thankful to have seen so many wondrous and effective developments in the field over the years.  As you might imagine though, with insulin-dependent Diabetes, the degree of management, monitoring, medicating, and overcoming has been tremendous.  I am so thankful for my health and my life.  However, Parkinsons added an avalanche of additional concerns, vigilance, guess work, fear and medication overload…….I couldn’t believe I could get another (but more meddling) condition, this one leaving me with no way to control my progression and with which I face the unknown.  No one else in my family, on either side, has or has had PD.  I have not been exposed to insecticide.  I have been a fitness and health maniac since I was 22.  At this point, I know my Diabetes management like the back of my hand.  I would say PD its the most challenging due to always being off-balance, self-conscious, tentative, slow and unstable…. you cannot depend on one day being just like the other (you may have a routine but it doesn’t consistently deliver the same results). Bottom line, I have to be able to have MOVEMENT in my body to successfully manage my Diabetes.  So far, it helps greatly with PD too, but if PD causes immobility or causes me physical disability from injury,  then it will be the thing that takes me out.  I pray for advancements every day.  And I pray for all of the Parkinson’s community to crank out the best spirit and determination you can muster, follow your regimen, be proud of every accomplishment, and to thoroughly enjoy every breeze.

[Nancy]

I have Multiple Sclerosis and was diagnosed in my late 20’s. As it is another progressive and degenerative disease of the central nervous system I am constantly confused as are my MDs as to what is causing what. The Parkinson’s was diagnosed when I was 50 but I feel like I was having symptoms all through my 40’s.