Some words of encouragement

[Michel0220]

 We all know that PD is a degenerative disease.  It should however not mean that everything necessarily gets worse all the time. I am sharing the information below as an encouragement to all.  

I am currently on holiday close to Syracuse in Sicily and was amazed to find out this morning that I could swim again. I struggled with this over the last 2 years to the point that I could no longer swim without risking to drown.  This morning though I had recovered my ability to swim (I never was a great swimmer but was always very comfortable in water).   

So what is this due to?  Could be the fact that my Sinemet dose last year was too low (I am now on 3x12.5/50 a day).   It could also be related to daily exercise, obsessive nutrition, vitamin B1 or photobiomodulation.  

There are other things that have gone better over time:

- regained my sense of smell 2 years ago after starting to take Mannitol,

- substantially improved my writing through daily hand exercises.  Using a keyboard has deteriorated slightly though.  

- improved my voice through daily exercises (not perfect but better). 

- better sleep thanks to sublingual melatonin.   

- better balance (again, might be Sinemet or other). 

- less anxiety through meditation (my father had PD so it is easy to imagine the worse things happening to me).  

I have shared in the past what I do to manage my symptoms.  Please see link below if you are interested. Since I wrote this I have added acupuncture and cold showers to my list!

drive.google.com/file/d/1-4...

[Gioc]

Wow! Congratulations on your successes Michel! Nice place for a holiday! Positive achievements give true happiness and make your life a beautiful and interesting work of art, far beyond vain sensations. Thank you for sharing it with us.Gio

[Smittybear7]

Thanks for your encouraging words. How did you determine you were on too much sentiment? I think that's part of my problem. Thanks for help

[Michel0220 in reply to Smittybear7]

Hi Smittybear. I increased my Sinemet at the start of the year. I was not on too much Sinemet but likely on too little. The interesting thing with Sinemet (I believe) is that if the dose is too small you might just feel nothing at all. I believe you only start feeling something once you reach the right dose. In other words, it is somewhat binary rather than linear. Maybe a basic fact to most people but it took me a few months to realise that.

[WinnieThePoo in reply to Michel0220]

I had a similar experienceWe have our own pool so I'm not going to drown. And I could always swim, but the fingers of my left hand fluttered as I did so. Upping the medication resolved this

[Kia17]

Hi Michel, It’s really nice to see you are doing well. Enjoy your stay in Sicily.

[Michel0220 in reply to Kia17]

Thank you very much Kia. I hope you are well too.

[Stillstandingstill]

That's great news. I wonder if there's also a benefit to being somewhere novel and feeling relaxed as you are on holiday. There seem to be many keys to unlocking some dopamine. Keep up the good work.

[Michel0220 in reply to Stillstandingstill]

Absolutely. New experiences are very stimulating for the brain and Italy is the perfect place for a Mediterranean diet!

[Zella23]

Pleased to hear you’re having a good holiday, what a beautiful looking place. Enjoy swimming again, my husband said he had difficulties last holiday with swimming, but things can change. Not sure he ll be adding cold showers to his regimen though! Have a great relaxing holiday, enjoy the food too!

[Michel0220 in reply to Zella23]

Thank you very much Zella. I had all but given up on swimming and my confidence in even just being able to thread water was shattered, so being able to swim again was such a good surprise. Please tell your husband not to assume that his ability to swim has necessarily gone forever and that I wish him a similar experience to mine. PropertyTyphoon on this forum recommended a book by Wim Hof (the “iceman”) which inspired me to try cold showers. It’s a bit tough during the first minute but it is strangely addictive and definitely very stimulating!

[Annieartist in reply to Michel0220]

Do you do the Wim Hof breathing too? Hate cold submersion/ showers but feel compelled to keep trying - managed to dunk in UK winter waters but doesn’t seem to be making swimming in summer sea any easier.

Happy to read your swimming improves- it was the first think that convinced me that I had PD- used to be a 30-50 length swimmer and suddenly couldn’t coordinate arms and legs

[Michel0220 in reply to Annieartist]

Hi Annie.

I don't yet do the Wim Hof breathing exercises as I already do other breathing exercises but I might switch to them in the future.

I believe breathing is critical and there are many types of exercises available (mine are inspired by Indian meditation). General fitness exercises also impact our bodies through breathing (oxygen is critical for cell energy among many other things).

I am a believer that most things that make us move our bodies within the range of our respective capabilities are beneficial.

[enjoy2013]

Salut Michel,Quelle bonne nouvelle! C’est absolument magnifique!

[Wonky-Bride]

That’s so uplifting Michel because you work so hard to be the best you can. A slight divergence from your post but when my father died, an Italian who had been in my father’s group in the war (blowing up bridges etc behind enemy lines) came to his memorial. He was in his late 70s, lived in Syracuse and swam every day “from the rocks”, saying that he attributed his good health and happiness to that daily plunge. I have never forgotten the image that he inspired of that simple but perfect life.

[Michel0220 in reply to Wonky-Bride]

Hi Wonky-Bride,Thank you for sharing this story!

I am limiting myself to the pool at the moment but I can imagine that a lifelong commitment to swimming in the sea must be a very healthy habit. I mentioned in an earlier post that I have started taking daily cold showers (as per Win Hof method) but would definitely switch that to going into the sea if I had that luxury (which I don’t as I live in Oxford 😀).

[Wonky-Bride]

I know, it was the Syracuse connection and I got carried away - sorry!I lost confidence swimming too, just before my diagnosis four years ago but that has come back recently with trips to coast and the incredibly warm sea. I am steeling myself to try Wim Hoff’s cold showers though, once the water is cool enough….

[Michel0220 in reply to Wonky-Bride]

Thank you very much WB. Great to read your swimming confidence has come back too!