An interesting question from my wife

[WinnieThePoo]

This morning Sue sent me this link (apologies its facebook - can't find it elsewhere)

facebook.com/carreracoachde...

She has been trying for years to get this grump with 2 left feet to learn to dance with her. I feel I should - she loves to dance and would love me to do it (reasonably) well with her.

Her interesting question was "do you think that the reason your Parkinsons has got better is because you have been playing more guitar recently"?

Never mind for a minute the answer. It was the casual assertion and assumption that my "Parkinsons had got better". It isn't cured, but it maybe has improved. She clearly thinks so. (I am superstitious about making any such claims, even privately to myself)

How do we measure this? What is normal? My condition fluctuates, and I have only had any awareness I might have PD for a maximum of a year (since diagnosis, 6 months) although with the benefit of hindsight, I can see I have had obvious symptoms for at least 10 years.

How do you assess improvement in a multifaceted disease with fluctuating symptoms?

And since its my thread, I'll cheat and ask a bonus one. Why do the symptoms, even the motor ones, fluctuate. If the problem is lost dopamine, why does it tingle my leg one day, and then not the next, but make my arm shake instead? Just for 10 minutes.

When I first started researching I came across the description "boutique disease" because no 2 PWP have the same symptoms or progression.

[laglag]

Good question. I've heard it called the "snowflake" disease.

[Bailey_Texas]

Take what you can get. If you feel better don't ask why or how just enjoy it. Your last question is what one of many every researcher in the world is looking for.

13 years on this road.

[WinnieThePoo in reply to Bailey_Texas]

I take your point - make the most of a good thing while you've got it. But I do want to ask why or how, to see if I can keep it up. I am looking to stop or slow this disease as much as possible, and open to all ideas. But aware of the potential conflicts. IF Sue is right (and I understand which points she is referencing) then its down to diet and lifestyle. But if the position is better than June 2018 its still worse than June 2017 and I am therefore hugely cautious to claim success.

But its good enough for me to hold my nerve a bit longer before asking my GP to treat my hypertension with Isradipine. Probably long enough to let them publish the results and find out whether it might be worthwile or not. I get a feeling this might be the first disease modifying drug to make it through the trials all the way to market. Not long now.

[Bailey_Texas in reply to WinnieThePoo]

Hard, heart pounding, lay on the floor grasping for your next breath exercise at least 3 times a week will do more than you realize. I started doing Crossfit in my 8th year along with carbidopa levadopa and turned back the clock on my pd at least 6 years to this day 5 years later when my meds are working i have no symptoms. I have 3 hours +- a day when i am off. i do great.

[WinnieThePoo in reply to Bailey_Texas]

Really good to know. As one starting the journey I love to read about people who have travelled a bit further and still achieve great quality of life. I think I got off to a lucky start with my PD which in part explains tentative "success". Thinking I had DIP and wanting to come off Amlodopine responsibly, I started exercising vigorously and eating healthily (and cutting drinking, although I have notably relapsed there). I have a brief situp, crunch, press up, squat routine which I do at least 4 days a week. And every day, without fail, I take the dogs round the mountain circuit at pace. The walk ends with a 500m 1:6 climb and is pretty brisk all the way round. I'm sure that's helped.

[Bailey_Texas in reply to WinnieThePoo]

The road has had mountains and valleys and rough patches. Just don't give up fight the good fight. It will pay off in the long run.

Good luck

[ddmagee1]

Exercise is important, I have found, to my feeling better, living with PD. Having the right dosage of Sinemet makes a big difference, also. Eating healthily, and maintaining a good weight ( not to heavy, or thin ), helps me, too. Importantly though, maintaining range of motion exercises, so that I keep somewhat limber, and can move relatively ok, is really important, because stiffness, achy muscles and rigidity can creep up on me rapidly, if I don’t exercise enough.

[jeeves19]

The vagueries of the disease are too deep and complex to fathom but keep playing that guitar. I find that my ability on it is slow to begin but gets better the more I play. Oh and the best challenge with this route is to attempt new pieces regularly. More challenging would be to take up a new instrument.

[WinnieThePoo in reply to jeeves19]

I have noodled a bit on Sue's piano for fun. Playing does seem to help.

[colourmepurple]

It sounds as though you should be making short videos, repeatedly, so that you ca\n see for yourself how things have changed - or not!