Might PD pharmaceuticals restore my a... - Parkinson's Movement

Parkinson's Movement

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Might PD pharmaceuticals restore my athletic performance?

lbrussell
lbrussell

Hello. This week marks 1 year since my official PD diagnosis, although I had symptoms for a few years prior. I knew what was coming as my mother has battled PD for over 20 years.

One thing that has bothered me is my slower speeds at both bicycling and walking. I have been a bicyclist for over 30 years (currently 3 days a week x 2-4 hours each) and I power walk another 3 days per week. In the last 2-3 years I have noticed a marked slowing of speed and power in both activities.

Is it possible that my speed and power might be restored if I go on PD drugs? In this first year I have been reluctant to start drugs as I have watched my mother battle with the side effects and the cascade of new pills chasing down those side effects. I’ve just never been much of a drug taker, for anything. But, I might be wiling to try dopamine therapy or some such if it would help in this area. My first doc initially recommended Mirapex, but I declined.

I have recently tried the High Dose Thiamine therapy recommended on this list, but gave it up when I noticed foot cramping issues and trouble swallowing large pills. Both of those have improved since stopping HDT 2 weeks ago.

Anyone have any experience with dopamine therapy and athletic performance? Your advice would be very much appreciated.

P.S. This forum has been so helpful over the last year. Thank you everyone for such open sharing of advice and experiences.

25 Replies
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That was my 1st question, too. I don't believe the pharmaceuticals will restore athletic performance, but they may provide the relief that will allow you to maintain your performance.

lbrussell
lbrussell in reply to MBAnderson

Thanks!

I find that levadopa keeps me flexible and active. I believe it would improve your strength and power. Try it, you can stop (gradually) if you dont think it helps.

You will notice many on HDT are also on levadopa which maybe why they are doing well though they always credit the thiamine.

None of us want to be pill poppers but we all are, some conventional meds and some on supplements. i have a philosophy of not taking a drug to treat side effects of another drug.

lbrussell
lbrussell in reply to Hikoi

Thank you, Hikoi. I appreciate your input.

Could I suggest you google Halo Sport haloneuro.com/ It has improved athletic performance in athletes. I bought one to try to improve balance and writing. It is too early to tell at this stage though I can now balance on a 3 inch plank for 10 minutes.

lbrussell
lbrussell in reply to Getz

Thanks for replying, Getz. My other PD annoyance is writing. Will look into Halo. Have heard rave reviews of it before.

I agree totally with Hikoi. Everyone is different but your performance & strength will more than likely improve. Since you don't care for pill popping, you will probably try to keep the dosage to a minimum. Exercise definitely helps. You need to do it frequently and push yourself. A friend that has PD just told me yesterday that he is having trouble walking, but has no problem riding his bike 35 miles?? Like I said, especially with this disease, everyone is different.

Stay well & keep fighting!

lbrussell
lbrussell in reply to laglag

Thanks, laglag. Very helpful.

I cycle 75-100 miles a week. I take levodopa carbidopa three times per day and find it helps long distance cycling.

lbrussell
lbrussell in reply to Rlp1

That's exciting to hear, Rip 1. Thank you.

I noticed a significant improvement when I went on carbo/levadopa. If you're not seeing a movement disorder specialist, you need to.

lbrussell
lbrussell in reply to Jebbie12

Thanks, Jebbie. My doc is indeed a MDS. Virtual visit soon and all the comments here will be very helpful.

Taking conventional meds will allow you to stay active for a long time, and this is the best thing you can do to help yourself.... and get the most performance out of your body...

It seems like you are doing a very high volume of training each week, and therefore I presume it is mostly aerobic... If so, you may want to consider scaling back on the volume, and adding some high intensity interval training... I think that would go a long way to improving your performance...

lbrussell
lbrussell in reply to Levod

Thank you, Levod. I've been wondering about my aerobic volume as well. Great suggestion.

What we need to slow down PD is precision. We do cycling in auto pilot mode. It helps to keep us active but untill we do a skill-based Movement, the PD goes on and on. Our balance get deteriorated and intense exercise put our hypotonic muscles under pressure and subsequently produce pain.

I highly recommend finding some kind of sports that need attention and awareness to isolate muscles and work on them. Work on them gently and don’t exhaust your body.

Levodopa helps to bring fluidity to the movement .

Very interesting, Kia. I would have thought that keeping balance on two wheels could help counteract PD balance problems. What are some other "skill-based movement" sports or exercise that might help ? Thank you.

Kia17
Kia17 in reply to lbrussell

Please see this;

dystoniarecoveryprogram.com

This is the only place you can find activities for balance and precision that needs attention and awareness.

lbrussell
lbrussell in reply to Kia17

Thanks, Kia!

Kia17
Kia17 in reply to lbrussell

You’re welcome

Hi there - will drop my 2 cents in. I was diagnosed 7 years ago and put on mirapex, 50mg/2x a day. It immediately helped and continues to control my restless leg symptoms, which was one of my presenting problems. The other was excruciating muscle spasms in feet, thighs, sometimes hands. I've been on high B1 therapy for 3 years and this has really helped the muscle spasm problem. My docs think I am doing really well, and I do also. I know the disease is progressing because my overall stiffness and slowness is increasing, and I tire easily. However, I will not go on the ld/cd regimen because I have seen too many people develop the dyskinesia side effects from taking the psychoactive drugs which cause them. (I am a former mental health professional.) I really don't know if mirapex is helping me in other ways besides restless legs and involuntary jerking, but you might consider giving it a trial. I will be following this thread. Regards, Cheryl

lbrussell
lbrussell in reply to CheriinMI

Thanks so much for your reply, Cheryl. I appreciate your informed experience.

I'm on levodopa 3x day. Seems to take the edge off the shaky left hand and sometimes weak legs..The more I push the cycling the stronger I get so I'm not focusing on drugs or PD.. just performance like I used to when I cycled up to 5 hours at a time.

lbrussell
lbrussell in reply to gginto

Thank you, gginto. My mantra while I cycle is timed with my leg strokes, "P - D - Push - Deeper - P - D - Push - Deeper!"

gginto
gginto in reply to lbrussell

Fantastic idea! Maybe Kia17 is right- Levodopa helps with the movement a bit- I'm trying to get back to how I used to think before- I was passionate about cycling , and my legs were strong.. So now they are weaker at times but just have to work harder and deal with it as it comes..and keep asking questions.

lbrussell
lbrussell in reply to gginto

Guess we just have to take it one day at a time and keep rolling.

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