Hello

[Arizonanative1954]

I am 64 years old and was diagnosed over 10 years ago. I have been going to the gym 2 days a week (with a personal trainer) for about 9 of those 10 years. I have been fortunate in that I do not suffer with too many symptoms of PD and have not had to give up much. I am happily married, have 3 adult children and 3 grands. I am sure I'm not alone in my worry of what the future holds but I try not to waste good days stressing over what may or may not happen. I am writing this at 4am which tells you that sleep problems is one of the struggles I have with PD. This is the first PD group I have joined. I have enjoyed reading some of your posts.

[Erniediaz1018]

Welcome. Glad you're doing well.

[Arizonanative1954 in reply to Erniediaz1018]

Thank you

[jimcaster]

Thank you for sharing your positive experience. I was just diagnosed in May and am encouraged by your success. Best wishes,

Jim

[Arizonanative1954 in reply to jimcaster]

Hi. I am happy that you are encouraged. I try to remember that I am not Parkinson's. It just happens to be my annoying traveling companion. I am not making light of those who's symptoms are worse than mine, just trying to keep my head on straight.

[Despe in reply to Arizonanative1954]

OPTIMISM and HOPE are the best PD medicine! WELCOME to this forum although I would prefer that I wouldn't. . .

[attyj]

Check out posts on Vit B1. It works.

[Hidden in reply to attyj]

Hi attyj,

I'm so glad that B-1 is working for you!

I was wondering if you could give a brief post in the "who is taking thiamine" thread and give a description of the benefits that you think B-1 has given? I sent you a chat message also so you will hopefully notice. Here is a link to the thread to post your results to:

healthunlocked.com/parkinso...

Thank you!

Art

[attyj in reply to Hidden]

Art, I'm 82 years old. I was diagnosed 6 years ago. I'm on sinemet 25/100. Started with Thiamine about 3 months ago. Spoke with Dr. C before I started. I started out with 500mg twice a day and now I take 1 gr twice a day.

Tremors are gone. My UDGD (guessing the name) went from 40 down to 26.

[Hidden in reply to attyj]

Thank you!

[jimo2017 in reply to attyj]

what is UDGD

[Hidden]

A second PD group I invite you to join

m.facebook.com/groups/23226...

[Astra7]

Welcome. Glad you are doing well. I was diagnosed at 52 two years ago, so it’s encouraging to hear you still living life to the full.

[Arizonanative1954 in reply to Astra7]

I think what has helped me the most are my faith, my family and exercise.

[RS313]

Welcome to the group so glad to have you here!

[Arizonanative1954 in reply to RS313]

Thanks so much.

[ConnieD in reply to Arizonanative1954]

Welcome! So glad you’ve joined us!!😊

[Arizonanative1954 in reply to ConnieD]

Thank you!

Claudia

[JerMan22]

Welcome! You will find many here who also exercise. I prefer a lot of fast-walking and some weight training.

[Arizonanative1954 in reply to JerMan22]

I do weight training and the bike at the gym. I don't know how helpful weight training is for PD but it makes me feel better about myself. Also working on my core helps me with balance. I have been very busy this summer and have only been doing weights at home so I have recently returned to the gym (I got a lecture from my neurologist at my last appointment). Do you walk in the heat during the summer?

Claudia

[JerMan22]

When I can't walk outside due to heat or rain, I use a treadmill. I also have a stationary bike, but i find that walking raises my heart beat better and that's important.

[JohnPepper]

Hi Arizona Native. I am impressed that you have stuck to the gym for so long. I was diagnosed in 1992 and on that day I increased my gym time to 90 minutes, 6 days a week. That appeared to be too much, because I started to go downhill faster than I was before diagnosis. After two years of that I gave up going to the gym and started to do fast walking, every second day. I started at twenty minutes to begin with, because that is what I did every day on the stationary bike in the gym. I slowly increased that time by five minutes every second week and got up to one hour per session, still only three times a week and never more than one hour.

After 4 months of that my performance had improved by more than 20%. I have kept on walking to this day and still do 7 kilometres within an hour, at the age of nearly 84. I have been off all Pd medication since 2002.

Look at my website - reverseparkinsons.net for more information and get in touch with me. I will answer all your questions, free of charge as best I can

[jimo2017 in reply to JohnPepper]

wow you beat me iam only 82

[JohnPepper in reply to jimo2017]

I didn't even know there was a race on!

[jimo2017 in reply to JohnPepper]

ah but you are a better walker than me

[JohnPepper in reply to jimo2017]

Every journey starts with the first step!;; Enjoy every step you take!

[jimo2017 in reply to JohnPepper]

make sure its not your last

[JohnPepper in reply to jimo2017]

Some people might hope it is but I have no intention of taking my last step for a long time yet! I still have a lot of ground to cover.

[jimo2017 in reply to JohnPepper]

so says all of us

[justhavefun2 in reply to jimo2017]

You folks are inspiring to us that are still in our earlier years! I hope to still be functional at 80. Way to go!!!!!!

[jimo2017 in reply to justhavefun2]

so many reassuring fellow pwp on this site am on second week of the good Dr C thiamine protocol at least he gives reassuring words you will get better for ever as opposed to you are doomed no known cure as stated by our medical practioners

[ddmagee1]

Welcome! I'm sure you will find good advice and support with healthunlocked.com! PWP are unique, in that symptoms are not the same for everyone, and progression is not the same for everyone. Some PWP can live relatively normal lives for many years, without symptoms impeding their walking, using their hands, biking, running writing, speaking, swallowing, digestive, and thinking, to a disability level. Then there are others, who are affected in nearly all of their body systems. So, wherever one may be, in their PWP life, there will be others that have been there, and will communicate with you, in this forum. I am glad that you are fortunate to not have too much to be concerned about at this point, concerning PD diagnosis, and I sincerely hope you remain lucky for a long time, and have only mild symptoms, that don't affect your daily life too much.

[Jumex2017]

Yes, welcome. This is a great website to share.

[Puneetforjosh]

Contact Dr.constantini.you will be fully cured.

[st8farm]

I am a natural night owl. One of the things that I have found is when you sleep is relative. At 73 and retired I can't say that I have anything that approximates a regulated sleep pattern but I sleep when my body tells me to and fit the sleep times around whatever the day brings to me. As retired people we have the freedom to do that and not fixate upon what the rest of the world tries to impose upon us. It's now 5:45 AM, I have been up for an hours or so. I think I will catch another 2-3 hours of sleep now. Nice to meet your acquaintance. (Retired in Yuma)

[colourmepurple]

Hi, you are certainly not alone in having sleep problems - it seems to be very common, and we all have different remedies. I take a sleeping pill, Clonazepam, just one - I could take more but it makes me too sleepy the next day - but I also have a small glass of port. Together they sort me out sleep-wise. I wake up to go to the loo, and then fall back asleep quite quickly.

Best wishes, Audrey

[Cowpatti]

We and others in our support group have used CBD oil successfully. It's legal since it doesn't have the THC and we get it at our local health food store made by a pharmaceutical company. There are oral drops but we like the topical oil balm. Relaxing music before bedtime also helps clear your mind. Cheers

[tedwilli9]

I was up until 4 am last night too. Got maybe 2 hours of actual sleep. Glad you’re doing well. Keep moving

[justhavefun2]

Welcome! 😀

[gdublu]

Hi from New Zealand, once my Nuerologist sorted out meds , i was still having "active dreams", so he gave me a sedative i presume ...NB..ACTIVE = lashing out in sleep..Now 10:30pm - 0630 consistantly.

[gdublu in reply to gdublu]

like colourme purple, its Clonazepam, hold the Port

[dalev]

It sounds like we’re in the same boat, exercise is a must!

[jimmydook]

This place is a godsend for pwp;loads of helpfull info;glad your doing well;love your attitude keep going friend

[Arizonanative1954 in reply to jimmydook]

Thank you. I am overwhelmed at the welcome from everyone! It's not what I expected.

[alaynedellow]

Bonjour and welcome from France.

[PDGal4]

Welcome from me as well. Diagnosed 6.5 years ago and doing, I think, fairly well. I sleep an average of 5 hours a night, but have gotten accustomed to and look forward to my quiet time in the mornings. Used to be I wouldn't get out of bed until 5.00 a.m, but the last 2 days it's been earlier than that. I used to love to sleep in my younger days, up through my 40's and even early 50's, 9-10 hours a night average, so figure it all balances out.

I try to get in some exercise daily. Some days I walk, 2 miles outside or 2.5 miles inside on the treadmill, weather dependent. I do hand weights once a week; as someone said, not sure if helpful for PD, but I figure we all lose muscle mass as we age, so can't hurt. I also take yoga classes average 3 days a week--enormously helpful in body awareness, strength, flexibility, and balance. I've done the BIG program twice, and try to do those exercises at home as well as take a weekly class sponsored by a PD group active in my area.

Function well on meds; try to keep dosages as low as I can; take supplements; see an acupuncturist every 10 days or so; nap before going out at night. I have off periods, but like my PD, most people don't notice and are not aware I have PD. Worked up until this year when I've been easing off. I'm 64. Have found a wealth of support and information on this forum, which I found about 6 months ago.

[Yourhealthisurwealth]

Hey my father suffered bad with pd for 30 odd years and we sadly lost him not because of pd tho it was a silent heart attack caused by asperation phnmonia and i was just reading this post and i must say I love your positive attitude this is an awful illness when the symptoms are bad your very blessed to have very little of these symptoms. I Myself helped to care for my dad and ive grown up around this illness and watching him go through the ups and the downs of pd if there is ever anything you need to know about any symptoms im always here and i wish you all the best god bless you.

[Wonky-Bride]

Welcome! I am new to the site too but it has a great deal to offer - enjoy.