Thank you to y’all here!: I can’t thank you... - Cure Parkinson's

Cure Parkinson's

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Thank you to y’all here!

Lionore profile image
18 Replies

I can’t thank you, the members of this community, enough for helping me address the symptoms of PD. I was diagnosed in 2015 but had left hand tremor for two years prior and a gradual loss of smell since around 2003. Yes I know that PD is progressive and incurable. So is the aging process; I am 71 after all. BUT, I feel better than I did three years ago when my well respected MDS told me that he was sorry with quite the woeful look on his thirty something face. Well, I decided to not curl into a ball and whimper. I took the advice of you folks:

Exercise, exercise, exercise, all kinds, mix it up and have fun

Drastically eliminated sugar, alcohol and processed food, eat mostly organic, mostly plant based diet, lots of water

Started, one by one, NAC, CQ 10, vitaminD3, green tea extract, turmeric, B1, magnesium

Pushed back when Dr wanted to start me on a dopamine agonist, got on Sinemet and rasagiline

Started Qigong

Connected with a spiritual group

Worked on eliminating stress (retired finally two years ago)

Reminded myself about all that I’m grateful for

These symptoms that were pretty troublesome have all but disappeared:

Toe curling

Pains in my left foot

Poor sleep

Inability to straighten my left arm

Extreme fatigue

Difficulty swallowing

Muscle spasms and Charley Horse on the affected side

Stooped posture and stiffness while walking have much improved as noticed by people close to me

Tremor is still on one side and is much improved.

Yes, I know that the first five years are the honeymoon period. Don’t we all deserve a honeymoon? I read this board every day, and feel great fondness for all of you who post and respond in an effort to connect, learn, and help one another. Thank you.

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Lionore profile image
Lionore
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18 Replies

Lionore,

I am very happy to hear that you have gotten such a good response to your treatment regimen!

Would it be okay if I copy and paste your post to the post about people's results with thiamine/B1?

Thank you!

Art

Lionore profile image
Lionore in reply to

Absolutely!

How much thiamin HCI (grams per day)?

Lionore profile image
Lionore in reply to

I goofed, Roy, bought nitricost B1 mononitrate 500 mg on Amazon before realizing my error. Since I read here that the mononitrate cannot be taken in excess, I’m using it up by taking one capsule per day so as not to waste it. I have the Solgar and will start with 2 grams per day. I’m 5 feet five inches tall and weigh 143.

parkie13 profile image
parkie13

What is it with doctors recommending Dopamine Agonist to everybody as a First Response drug? Sinemet is way better tolerated, especially by older people.

Lionore profile image
Lionore in reply to parkie13

He started me on Azilect, no problem, but when the fatigue and stiffness got a little worse, suggested the neupro patch. I’ve had issues with binge eating many years ago, in recovery and not willing to take anything that will trigger addictive behavior!

Lionore profile image
Lionore in reply to parkie13

My doctor accepts about 34K from the pharmaceutical companies. Thanks to this blog I found someone who doesn’t down at the University of Pennsylvania Hospital but getting there could be a problem in the future, I decided to accept my drs expertise and ignore the glossy fancy brochures and free trinkets that the reps give him.

Thank you for sharing, it’s always nice to hear positive feedback. What type of spiritual group did you join?

Lionore profile image
Lionore

I don’t want to offend anyone here. Google acim.

ddmagee1 profile image
ddmagee1

Thank you, too, for the uplifting report. I decided to do the same thing, when my Dr.told me the news that I had PD in a similar manner. This blog is so helpful, and I too, thank all who have contributed their time and effort to help others afflicted with PD. I get my best practical suggestions on how to deal with the daily ups and downs, of living with PD, from others who have it too! I take it upon myself to get as much info. as I can and then use it to help myself in any way that I can think of, to help relieve symptoms, and maintain as much normalcy, so to speak, as is possible. I, too, am 71, and know that my age is going against me; however, I prefer to be the best I can be, and enjoy life as long as I can, so I keep on moving and remain positive, in spite of adversity, at times.

Lionore profile image
Lionore in reply to ddmagee1

When I was young I was a worrier par excellence. DDMagee; you are so right! Since ain’t none of us are guaranteed anything in this crazy world, PD or no PD, I try to just stay in the day.

Xenos profile image
Xenos in reply to Lionore

IMHO, worrying, anxiety, on a very long term are the real cause of Parkinson's.

jimcaster profile image
jimcaster in reply to Xenos

I agree, Xenos. Ironically, most of my lifelong worries (mostly related to work) seem totally trivial. Part of the silver lining in all of this is a much healthier and acute sense of what really matters.

Xenos profile image
Xenos in reply to jimcaster

Thank you Jim. I do think that it is an important issue.

The work of Janice Walton-Hadlock (books freely available on the Web) is outstanding on that point, even if the 80% remaining parts are worthless in my opinion.

Even more, the only medically controlled cases of PD cured can be interpreted as a result of victory of the subject on long-term, ingrained, fear. Hence the role of meditation for example.

Despe profile image
Despe

Attitude is everything. I am so very happy for you for your spirit and determination to fight PD!

MehmetKutlu profile image
MehmetKutlu

I wholeheartedly agree with Xenos. I am sure PD can be the end result of chronic unrelieved stress and anxiety.

2bats profile image
2bats

Good for you Lionore - keep well and have fun!

KemptonD profile image
KemptonD

Thank you. Your encouraging word and hopeful sentiment is the best news all day.

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