Doctors say I have PD?

[kaypeeoh]

Maybe they're right. I've been seen by 5 or 6 doctors who all agree I have PD. Two say it's probably PD and MS. Last night while moving the scooter into the garage it fell over with my foot trapped between the kickstand and floor. My wife is an hour away so not available to help. It fell as I was trying to balance it to bleed the brakes. So I was trapped with no way of getting help. I flashed on the guy in Utah who cut off his arm when it got trapped under a boulder, I had a pocket knife and was able to cut the shoe laces, Then it took a while but I was able to wriggle my foot out of the shoe and crawl out from under.

I start physical therapy for balance issues on Monday. This morning I have two purple toes but no serious pain. I'll be on the treadmill for a couple of hours if the purple toes allow.

I'm reading Spark, the new science of running and the brain. It says running stimulates BDNF: Brain derived neurotrophic factor, Which is the spark that heals the brain. It recommends running at 70% of max heart rate for an hour followed by reading or studying. Studies say at that point the brain has been primed to absorb and retain new information. If running at 90% of max no retention happens because the body is shifting blood to the muscles and unable to grow the brain.

[wifeofparky]

glad you weren't hurt seriously.

[pdpatient in reply to wifeofparky]

These issues are seldom due to the disease progression and according to my extensive research on this topic the issues are mostly due to the medication.

My MDS doctor told me that Parkinson's can take decades to progress, which is why patients like me who are diagnosed with adult young onset PD, especially those with tremors live the normal life span.

@kaypeeoh, I would encourage you to think positively and for your peace of mind, go to Columbia Neurology. What do you have to lose??

BTW, You have been to 6 doctors. Kind of reminds me of the Seinfeld episode where multiple doctors decline to treat the patient.

[GymBag]

Sounds good to me

To avoid the higher heart rate, maybe you could try just walking fast instead of running.

Anybody else tried walking fast? hehehehheh

[Hidden in reply to GymBag]

"Anybody else tried walking fast? "

Not that i know of

[kaypeeoh in reply to Hidden]

I use a heart rate monitor. For my age 156 is my maximum although I've gotten to 170 at times. 70% of max is 109.

[rescuema in reply to kaypeeoh]

It's smart to use a heart rate monitor. I get impatient and go over 90% max heart rate just to sweat profusely with a good sense of a workout, but I should remind myself that's not the best for my brain.

[MarionP in reply to Hidden]

Tongue in cheek, right? Because fast walking is John Pepper's big thing and his accounts and beliefs are easily found.

[Hidden in reply to MarionP]

Yes, Marion.

[MarionP in reply to Hidden]

Ah, good. In that case you've a positive gift for understatement and subtlety.

[Oceanflow in reply to MarionP]

😆 lol

[Cbgs in reply to GymBag]

🤣🤣🤣

[Getz]

Worth reading a post from pub med on coffee cherry concentrate. In the study it increased BDNF by 143%. Other supplements like ashwaghanda increase BDNF by up to 15%. Simply do not give up. Increased BDNF will produce new brain cells. It won't replace memory cells that have died but with the help of friends it will start new memories with the old contacts.

[LAJ12345 in reply to Getz]

What is coffee cherry?

[Getz in reply to LAJ12345]

I have posted 3 papers on Mannitol, L-Serine and Coffee Cherry. Two of them are from pubmed. Try a search

[MarionP in reply to Getz]

We are learning that the brain can be more plastic than we give it credit for, even at our advanced age. It's not just rediscovering old connections.

[Getz in reply to MarionP]

Marion I apologize. I couldn't find my post of the links so have now none so.

[MarionP]

So have your doctors, any of these six, shared in any detail with you what exactly their basis is for their belief and diagnostic impression (or actual diagnosis)? What's their confidence level and how have they discussed with you? What next steps do they mention? Are they specialists or highly experienced? Have they given prognosis or stage impressions and discussed their rule-outs? Any offer to make specialist referrals? Are they making a distinction between Parkinson's disease and parkinsonism (and completing the picture with regard to co-occuring MS? Have they done the routine differential tests? Have you been to an actual neurologist to establish, through the well-known DaT test, whether their findings are more or less definitive (a sufficiently low score on the DaT scan is considered both sufficient for diagnosis AND definitive).

You said two said "probably." That may be pretty significant right there, professionals usually choose their words with very great care, so to me "probably" should carry weight and be seriously considered, but it's not only valuable but important to have that fleshed out.

[pdpatient in reply to MarionP]

The Original Poster (OP) isn't responding, MarionP. He's got me worried.

[pdpatient in reply to MarionP]

BTW, MarionP, I agree with the notion that the doctors use caution when declaring a medical diagnosis. Especially, when providing a differential diagnosis.

[mymomhaspd]

I feel my mom never had parkinsons - parkinism but not full fledged PD. She was in Canada at that time and the docs put her on a super high dose of levadopa and then the dykinesia started . Gist is , even if u have PD u start with the minimal dose of meds (after 12 yrs we give mom half of what she started with) and start on supplementation- B100 , B12, eating health, lots of antioxidants like NAC 9also look into Alpha lipoic and Acetyl carnitine). - the are neuro protective to the brain (confirmed with a neuro also) .. but exercise is key and i think its not just running but strengthening and exercises for balance like tai chi - cause if u can be strong and have ur balance , it is half the battle won . Good luck !!