Just found this website

Just found this website

Greetings!

My husband was diagnosed with Parkinson's approximately 10 years ago. He is seeing a Movement Disorder Specialist and has gone through the Big Loud Therapy. He is 72 years old and was an avid bicyclist. After giving it up for 9 years on the recommendation of his first neurologist, we are trying to get back into a more active lifestyle. I am so happy to have found this website and look forward to reading and sharing stories.

Sharon

22 Replies

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  • Welcome to the group. I like the interaction and news about the experience of others. And this group participation does not require travel to meeting site. I am 69 years old and dx four years ago.

    I was fast walking 45 minutes 4 - 5 days a week. After stopping for several months and then starting again I find it takes me 10 more minutes to walk the same distance. I am going to use timing as a measure of my progression.

    I have little faith in some of the diet and supplement advice herein following my experience with said suggestions.

    The only medication taken at present is amantadine for tremors.

  • Does that control the tremors or lessen them to a great degree?

  • It was prescribed and recommended only three weeks ago. The movement specialist/neurologist suggested I start one (100mg) capsule shortly before bedtime. (My request was to stop the tremors to help me get to sleep). He said do this for one week then move to one capsule twice a day. I decided to go two weeks before increasing the dose. That decision made after reading in this forum that it may take two or three weeks for this med to kick in.

    I am now in the third week, two caps per day, and will do this for two or three weeks then drop back to one cap per day. After this course I will have a best opinion of this drug and its effect.

    It has not stopped the right arm tremor but both my wife and I notice some reduction in the tremors. It is easier for me to go off to sleep at night.

  • The usual dose my neuro said is 3 per day. When I took it - I began on 1 tab day and i noticed good effect in 48 hrs hope you get similar relief Roy.

  • Did your tremors stop totally? I still tremor at 2 a day.

    Amantadine are costly. One dollar a capsule if my memory is correct.

    I want to eventually take only one capsule a day. It is at night that the tremor bothers me most at present progress.

  • I'm not currently taking it but yes stopped themfor a while but I have always had it with levadopa. So it was the two meds together I would say.j

    drugs.com/price-guide/amant...

  • Yes, Levadopa is reported as necessary. Which for now I do not want to take.

    It is disappointing to learn amantadine will eventually lose its effectiveness.

    drugs.com/dosage/amantadine...

  • When do u plan to take c/l Roy?

  • When progression is unbearable

  • Thank you! Yes, I agree the interaction and information is a great support without having to travel. It seems exercise is a strong component in trying to keep the effects of Parkinsons from coming on sooner. I would like to believe diet and supplements would help as well. (wishful thinking I know)

    Sharon

  • Bravo! Hang in there with the bike riding. I was diagnosed three and a half years ago and am 65 years old and when I first got back into bike riding a few years ago it was hard and very precarious feeling. But I got better and better the longer I did it and it seems like great exercise for people with PD. Good luck!

  • Thank you!

  • 68 diagnosed with PD 4 1/2 yrs ago.As a lifelong racing cyclist would find it hard to give up the bike.Try to get 2 x 40-50km rides a week weather permitting(used to do 40-50 miles plus but whose counting!)Just bought a new second hand Giant and loving it. Lot of research done on bike riding and PD all good .

    David Phinney is an ax racing cyclist and has a website David Phinney foundation lots of good advice.Also you may like this clip on you tube

    Cycling for Freezing Gait in Parkinson's Disease

    You might also find the book

    The New Parkinsons Treatment Exercise is Medicine

    Very helpful.

    Wish you both all the best for the future

  • Thank you for the suggestions! I love that video with the man cycling and showing the freezing gait. Our previous neurologist would have NOTHING to say about it-wouldn't even listen. He really wasted 7 years of our lives (I have to get over my anger about it). I just ordered the book, "The New Parkinsons Treatment Excercise is Medicine".

    Thank you for the suggestion about David Phinney! I have been involved in fund raising with TNT for lymphoma and have often wondered if there was anything for Parkinsons. I have tried to fundraise through Michael J Fox but lived in an area there was not an active chapter set up. Great to see the David Phinney has activities nearby.

  • Well you didn't let the gras grow! Well done. What country are you in ? If it's the Uk can send some more info .

  • We are in the U.S. California to be more specific. I appreciate all the info you can send :)

  • Davis Phinney - whilst a fine man - is debatable as a role model for the effects of cycling. From what I've heard he's not in a great place currently with the PD (I may be wrong). People like Nan Little (via the protocol suggested by the Cleveland Clinic) appear to have the formula more scientifically structured and have done very well. Read her book, it's available on Amazon. Formula appears to be 3/4 times weekly, for about 50 minutes and riding - as near as you can - at an RPM of between 80/90. It's the speed of the legs which is thought to make the difference. I find that the exercise bike in the gym allows me to ride at this rate long term, but when I'm on the road, I have to constantly be stopping and negotiating.

  • Thank you! I have just ordered this book on Amazon as well! If I Can Climb Mt. Kilimanjaro, Why Can't I Brush My Teeth? by Nan Little. Good to know about the RPM and gives us an activity to engage in while in the gym.

    Great! I hope Davis Phinney is doing ok. His website is so inspirational.

  • Thank you for the explanation. 😄

  • I was referring to The Davis Phinney Foundation a non-profit with a mission to help people with Parkinson's live well with the disease. It was founded in 2004 by Davis Phinney, the former professional road bicycle racer and Olympic medal winner. Phinney was diagnosed with young-onset Parkinson's disease in 2000 at the age of 40.[1] Today, Davis is an inspirational figure in the cycling community and people living with Parkinson's (estimated 60,000 Americans and estimated 10 million worldwide

  • Ten years of intense exercise at rocksteadyboxing.org gym has made a huge difference for me. There are a number of locations throughout CA. Hopefully there is one near you. Let me know if I can help.

  • Rock Steady Boxing!! You have been in on the ground floor! Exciting and I have heard about the program. My husband just finished the Big Loud Therapy and I will look into the nearest locations. 10 years says a lot. Thank you!

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