I am giving thanks and celebrating today!

[Dap1948]

10 years ago today I was given the unexpected diagnosis of Parkinson's. My world fell apart. I feared the future. And yet here I am today choosing to celebrate because I'm feeling well. Thanks to a small amount of medication and a large amount of exercise, music and B1, I still have a full and rich life. At 71, I teach piano, train and conduct a choir, paint, take a language class, I've even just written a book. Parkinsons's? What Parkinson's?! My advice to anyone newly diagnosed is not to rely on your doctor, take responsibility for your own health, and search, read and trial till you find what benefits you. And the biggest thing to celebrate is all the new friends I have made!

[aspergerian13]

Very inspiriting. May we all find what works for us.

[Jennyjenny2]

What an inspiration you are Dap. Thank you for sharing.

[CaseyInsights]

“...My advice to anyone newly diagnosed is not to rely on your doctor, take responsibility for your own health, and search, read and trial till you find what benefits you. “ Well said 🌺 Wishing you the best 😘

[Sonshineman1]

Congrats to you sweet lady

[Hidden]

My luck I did not take that advice from my diagnosis neuro

[RogJen]

PTL! and Never Give Up!! 💜💜💜

[rescuema]

No one will care more about your health than yourself (and your loved ones). Be tenacious, research, learn, and try to adapt as active/healthy lifestyle possible while enjoying the sun for short periods (less than 20 minutes) daily. Healthy diet is tremendously important so we should always fight the urge to slack on that front.

Dap is an inspiration and obviously walks the talk.

[Dap1948 in reply to rescuema]

Sun?! I live in the UK!

[rescuema in reply to Dap1948]

Got to fight the cloud somehow. Take some vacations? Just don't get on any cruise anytime soon! Sunlight offers more benefits than D alone, but be sure to check your vitamin D level and supplement at least.

[Johnboy46 in reply to Dap1948]

Hi Dap, I am also in the UK, sunny (sometimes) South London. I was dxed 3 years ago this week. My, doesn't time fly when you're having fun......... During whatever Summer we get , you will find me in our local pub garden or over Crystal Palace park, in my shorts and bare to the waist. I always have a tan, could be the Guinness !!! That's me in the avatar with my pickup truck. I was lucky to retire at 60 (I'm 70 now). I take Sinemet 25/100 and it seems to keep the tremor to a minimum. I also take CBD oil and Hemp oil when needed. The best advice I can give ,is, stay calm ,don't stress and exercise to the best of your ability.....even if it is just a brisk walk to the pub.

[MBAnderson]

Best advice ever. Good for you.

[Goldencbc]

You are an inspiration! BTW I started the sublingual B1 (after taking thiamine Hcl for a year) and I have more energy!! Thanks for sharing what is working. I hope to be celebrating soon😊.

[Despe]

Optimism, and that's the best med!

[CPT_Helen Partner]

Please can I remind all users that you are thoughtful about the language you use in posts. I have edited above as everyone's Parkinson's is different. Everyone has their own combination of symptoms and side effects to meds , and everyone tackles these in their own way - diet, exercise, alternative therapies and meds. Some people's Parkinson's progresses very slowly. One person's experience of their own condition does not necessarily transfer to another person's experience.

Many thanks

Helen

[ion_ion]

So everything that does not fit your logic is false? PD is not a standard disease and the symptoms differ from person to person. Also the reaction to medication is different, too.

[Dap1948]

Levod, I know I have Parkinson’s because if I don’t take my medication, my symptoms get worse. I do not say that people should do what I am doing, merely that these things have worked for me. I know this because I used to be worse. The book is out April 21st. It is not about me! it is about ways to reduce symptoms. It is all based on science and research. more nearer the time.

[ParlePark in reply to Dap1948]

Great attitude Dap and appreciate the sharing. Thanks!

[park_bear in reply to Dap1948]

I look forward to your book! Do keep us posted.

[WinnieThePoo]

Dap, I too am inspired by your success and positive spirit. As one learning piano at the moment it is good to hear you are still teaching it 10 years post diagnosis.

I would like add that in my view it is important to recognise this disease affects all in widely different ways, and to recognise that many will not share your outcome even if they follow your practices to the letter.

And on that theme, "taking responsibility for your own health, and not to RELY on your doctor" is a fine thing i strongly support. It is unfortunate if some interpret that as "ignore your doctor" which is not so clever.

I met Irish Jim again last week for a game of pool. He too is 10 years post diagnosis and follows the conventional"rely on your doctor" route. To be fair, he's not doing as well as you, but he's still playing regular golf, and whipped my a### at pool.

Congratulations again

[MBAnderson]

OK. I deleted.

[ion_ion]

Hi Levod,

Actually you said. She claims she has PD and she feels good because of her regimen. You said that's not true or is false. But of course , both of you have the right to express your opinions. I believe her because I feel the same way like her. Maybe I do not have PD? Four motion disorder neuros said I have it even I wanted to hear I did not have. If you are suggesting her to be more careful with her statements that's valid for you, too, for the way you negate them.

[Gioc]

Ciao DAP, congratulazioni per aver fatto della tua vita un’opera d’arte: una vita bella e interessante,accurata e vissuta per aiutare gli altri. Solo un artista come te può sognarla e viverla. Sei un esempio per me, grazie.

Gio

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Hi DAP, congratulations on making your life a work of art: a beautiful and interesting life, accurate and lived on helping others. Only an artist like you can dream it and live it. You are an example for me, thank you.

Gio

[Dap1948 in reply to Gioc]

Ciao GioCas.

Molte grazie per le tue parole gentili. Lì salverò in Italiano. Suonano così belli!

[rescuema]

Hi Levod, please don't sulk.

I appreciate you for recently engendering a very active and valuable discussions pertaining to B1. Skeptics are welcome, but please try to keep an open mind and I hope that one day you may be prompted to try some of the therapies that might benefit you.

[Hidden]

Levod, everything is OK

[faridaro]

Dap, thank you for sharing your success story - looking forward to reading your book!

[AmyLindy]

Yesssss!!!! Thanks for sharing hope💥and Congratulations 🎊

[Binday]

Congratulations! Just woke up and read your post, it is so positive. I am only 3 years in and doing well. I always told myself if i could stay really well for 10 yrs that would be good so thank you for your post. I havent tried B1 but think i will. Look forward to your book

😊

[ddmagee1]

Very inspirational!

[Kt088]

Thanks for sharing your story, it’s almost identical to mine, so glad to hear that others are not taking this disease laying down but doing the most they can to live a quality life with it. Keep it up! Just because you have Parkinson’s doesn’t mean you have to roll up and accept it but one can have a good, positive life despite it. Great job!

[Coot18]

It was also about ten years ago when the neurologist gave me a hard punch in my psychic gut. Several months later, still feeling sorry for myself, a friend rushed up to me at church. In a forlorn tone, he said, "I was just diagnosed with Parkinson's, can we talk?"

I heard myself say, "Don't worry Charlie, PD is simply a term the medical community uses to describe the form of old age God decided we should experience." The self pity began to disappear.

A week or so later I went to a counselor who asked, "Have you figured out why God gave you the gift of PD? I have been able to figure out much of the same things Dap has figured out.

Before retiring, I worked 47 years as an electrical engineer. I hired consultants and served as a consulting engineer myself. Now I hire doctors as knowledgeable consultants to help me figure out how to navigate the aging process. I value their advice as I ask questions prompted by things I experience and things I hear from other PDrs like you all. But I make the final call on how to deal with God's gift.

On the subject of Vitamin D

This link below discusses the benefits of sunshine

Like everything else, used in moderation, the benefits outweigh the risks:

outsideonline.com/2380751/s...

[Erniediaz1018]

Congratulations 🎉🎊🍾🎈Thanks for sharing

[PalmSprings]

Absolutely, such great advise! I have had a similar ride. I went rogue when my doctor put a sign in his office, “One symptom a visit.”

[Steve1376]

Good for you!

[alaynedellow]

Lovely to hear Dap. Like you i believe in research and understanding your complaint and how diff meds affect you. Look forward to your book. Post here when it published so we can buy it 🙏

[Astra7]

Good to hear you are doing well. Something to celebrate!!

[TL500]

Thanks Dap for sharing. Could you tell us how much medication you take?

And for these 10 years dose stay the same?

What exercise you do and how much?

and how long on B1?

Thanks Dap!

[Dap1948 in reply to TL500]

I’ve taken rasagiline for 9 1/2 years. I started madopar five years ago on 12.5/50mg x 3 a day. It increased to x4 a day a year later. It has stayed at that level. I walk for 40 to 45 minutes x3 a week. I play the piano for an hour a day. I take sublingual B1 100mg x4 a WEEK.

[TL500 in reply to Dap1948]

You are doing so well considering been diagnosed for so long.

Is rasagiline similar to Azilect?

Why did you take madopar now?

Do you walk normal pace or fast walking? COuld I have the B1 brand please?

Thanks Dap

[Juliegrace in reply to TL500]

Rasagiline is the generic for Azilect.

[Dap1948]

Rasagaline is Azilect. Madopar removes my tremor.

I walk at 105-110 steps per minute. This is probably fast-ish! I walk to music which is why I know the speed! My book has a whole chapter discussing what happens in the brain when you walk to music, but it has to be the right music and the book explains! Out April 21.

I get my B1 from healthmonthly.co.uk/superio...

I hope this helps.

[TL500 in reply to Dap1948]

Thanks Dap.

Let us know when your book is out & the name.