A taste of my own medicine : First, we went... - Cure Parkinson's

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A taste of my own medicine

WinnieThePoo profile image
31 Replies

First, we went skiing yesterday. First time in 2 years. I had a couple of Parkie moments and had to give myself a stern talking to. But we had a great day.

Now for the awkward segue. This is about a comment I made 2 or 3 or 4 weeks ago about positive thinking. I quoted a Paul Mckenna book, "change your life in 7 days"

The quote was "whether you think you can or whether you think you can't, you're probably right"

Later that weekend I was on Marc's zoom meeting and trying to fix my poor audio quality. I dig out a shure sm57 - if it's good enough for POTUS...

This led to me showing my log cabin office and someone noticed and asked about my piano

So I explained I'd only taken it up relatively recently because I could no longer play guitar. My left hand just wouldn't join in. Too weak, too slow, and, most difficult to get grips with not moving as far as I thought.

So I explained that whereas the left hand was essential for guitar it could just plonk a bass note on piano

But I was haunted by "whether you think you can..."

The one that really depressed me was a jazz accompaniment to Sue singing "Summertime" it used to be so relaxed and easy. I just couldn't make the chord changes. By seconds

To be fair, I have also been tweaking my meds.

But I set about telling myself I can

And you know what. It took a bit of work, but I can play it again.

I've been playing guitar again 😁

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WinnieThePoo profile image
WinnieThePoo
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31 Replies
Xenos profile image
Xenos

Ski, guitar, piano... my dreams.

Congrats Winnie

MBAnderson profile image
MBAnderson in reply toXenos

Not to mention he lives in the Pyrenees.

Xenos profile image
Xenos in reply toMBAnderson

Very nice places there... I've been living in Toulouse for over 5 years.

But the Alps are not bad either - and closer to Switzerland ...

MBAnderson profile image
MBAnderson in reply toXenos

Lucky U. Pretty nice

WinnieThePoo profile image
WinnieThePoo in reply toXenos

Zut alors. I hadn't realised you were that close. We should organise a refreshment

Xenos profile image
Xenos in reply toWinnieThePoo

I left Toulouse a very long time ago. But if my steps lead me to this region, it will be with pleasure.

jimcaster profile image
jimcaster

Good for you! The longer I live with PD, the more aware I am of the importance of my attitude. Another PwP commented that the phrase "It's all in your head" is literally true with Parkinson’s. Whether an improvement in my condition is placebo effect or actual improvement doesn't matter as much to me anymore. Improvement is improvement and I will take it any way I can get it. Invariably, as you say, "If I think I can or I think I can't, I am probably right." Congratulations on meaningfully improving your enjoyment of life!

chartist profile image
chartist

Skiing, nice way to slip some extra NIR in while having fun! Wtg, Ricardo!!!

Art

Shorebird profile image
Shorebird

Beautiful story. Thank you for sharing.

Bolt_Upright profile image
Bolt_Upright

Thank you Winnie. That is inspiring. I looked up that Paul McKenna fellow and will watch his video tonight: youtu.be/ymGrSgw0zHU

WinnieThePoo profile image
WinnieThePoo in reply toBolt_Upright

Careful. It's not a video. It's a rip of his hypnosis cd. Great if you're lying down somewhere safe with half an hour spare. Best listened to on headphones. The book is worth reading

JohnPepper profile image
JohnPepper

Did you find that you could play when you physically concentrated on the left hand movements, while the right hand worked just fine?

WinnieThePoo profile image
WinnieThePoo in reply toJohnPepper

Not really John. I think concentrating and believing I could do it if I just kept focusing on small steps, tiny improvements but always in the right direction were important.And for sure I notice the neuroplasticity effect. Practicing guitar (and piano) makes my hands work better.

But my 2 sides are very different and this is also a Sinemet story. I adjusted my meds and that has been transformative. Without Sinemet I couldn't do this no matter how much I concentrate.

The bradykinesia was so bad I couldn't make the chord changes at 25bpm never mind 80bpm.

Improved medication unlocked the door and a revised mental attitude took full advantage of it

in reply toWinnieThePoo

"But my 2 sides are very different and this is also a Sinemet story. I adjusted my meds and that has been transformative. Without Sinemet I couldn't do this no matter how much I concentrate."

Wow! Love to hear c/l success stories!

Jennyjenny2 profile image
Jennyjenny2 in reply toWinnieThePoo

In what way did you ‘tweak’ your meds?

WinnieThePoo profile image
WinnieThePoo in reply toJennyjenny2

I was on 1mg pramipexole once a day and it wasn't enough. I noticed it particularly in a left hand that was nearly useless for touch typing.I added 120mg levadopa from macuna 3 times a day, 1 hour away from meals, when I remembered. That improved things a bit.

I changed neurologist and the new guy put me on 0.5mg pramipexole twice a day and sinemet 10/100 morning and lunchtime. Better. For a few days really promising, but then I had some left hand tremor, toe curling and biceps pain. So I went to sinemet 10/100 AND 2 macuna 3 times a day

Really, I want sinemet 25/100 and I am going to discuss this with my neurologist on Thursday

Meantime I trialed the 0.5mg pramipexole twice a day with 2x10/100 sinemet 3 times a day and that is about right

Jennyjenny2 profile image
Jennyjenny2 in reply toWinnieThePoo

Thanks

WinnieThePoo profile image
WinnieThePoo in reply toJennyjenny2

However, I was on the new regime a month when I explained why I played piano instead of guitar. And I would pick the guitar up at least a couple of times a week and shake my head in disappointment that I could no longer play it - when my left hand was touch typing just fine.

As Jim noted - this Parkinsons Disease is all in the mind. Well, attitude makes a significant and important difference.

JohnPepper profile image
JohnPepper in reply toWinnieThePoo

AS long as you are noticing an improbvement, no matter what it is, then keep at it. Don't stop!

Zella23 profile image
Zella23

Great to hear your story - keep on playing and skiing! In Gods country too!

WinnieThePoo profile image
WinnieThePoo in reply toZella23

Thanks.

JustJeff profile image
JustJeff

Interesting i used to provide entertainment to care and residential homes and have had to stop due to erratic strumming on guitar courtesy of PD also fingers sticking on clarinet....the instructions just don't properly get through to my right arm and hand :(

WinnieThePoo profile image
WinnieThePoo in reply toJustJeff

Do you respond to levadopa? Have you tried increasing your dose?

JustJeff profile image
JustJeff in reply toWinnieThePoo

They increased my madopar and within days i was bed bound with nausea and a splitting headache that would not go...lasted several weeks so......back on a minimum dose now :)

WinnieThePoo profile image
WinnieThePoo in reply toJustJeff

"oh bother" as Winnie the Poo often saysDoes your neuro have no other options?

Art_lover45 profile image
Art_lover45

You can't see me but I'm clapping my hands. Good on ya!!

PalmSprings profile image
PalmSprings

I love this post. I feel inspired by your attitude, your actions and by all the fun things you are doing. Way to go! Luckily, I also respond to l/c and I have windows of time where I can do things. But I need to challenge myself and try some new things. Cheers

Jhart0730 profile image
Jhart0730

That is very Inspiring! Congratulations!

Coling profile image
Coling

OK that’s good enough incentive I’m going to dust of my old guitar - change the strings give it some love and try again Thankyou

sailaway615 profile image
sailaway615

Thanks for sharing that, Winnie. Good stuff.

Panda30 profile image
Panda30

Congrats! It's awesome.... May God keep you safe and well... fill your heart with joy and hope...

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