I have no advice for you but I'm sorry about the diagnosis you just received. Best wishes moving forward, whatever you do.

This website should be a great resource going forward:


https://www.michaeljfox.org/...-fox-race-ironman-70

I don't personally suffer from PD but treat people who do in my line of work. I think exercise, primarily aerobic with.moderate strength and balance work is essential.

Just thinking out loud though, given the duration of a full IM, there could be issues with medication peaks and troughs that would significantly impact you.

Maybe consult with your neurologist first?

I highly recommend watching this short film about a marathon runner with parkinsons. https://vimeo.com/134134268 Hopefully there is something in there that can help answer your questions.

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Benjamin Deal - Professional - Instagram - TriRig - Lodi Cyclery
Deals on Wheels - Results, schedule, videos, sponsors

so sorry to hear about your diagnosis.. however am very happy to hear that you are taking the bull by the horns and do something amazing. i am sorry you have to deal with this at such a young age. i highly suggest talking to your doctor. most people dont "recommend" doing an ironman, you just want to make sure you're not going to do yourself any further harm. good luck to you!

Thank you for the kind words.

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"There are two ways to slide easily through life- to believe everything and to doubt everything- both ways save us from thinking "- Korzbyski

Thanks for the link- I've been looking at the Michael J. Fox resources for the last couple of weeks, actually- there is a lot of good info. in there.

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"There are two ways to slide easily through life- to believe everything and to doubt everything- both ways save us from thinking "- Korzbyski

Yeah- I've not discussed it with him yet- I'm sure I'll get his OK if and when I decide to continue with my plan. Thanks.

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"There are two ways to slide easily through life- to believe everything and to doubt everything- both ways save us from thinking "- Korzbyski

Thank you- I'll check it out!

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"There are two ways to slide easily through life- to believe everything and to doubt everything- both ways save us from thinking "- Korzbyski

Thanks for the encouragement. I just want to make sure if I try and do one that it won't cause any long term negative consequences.

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"There are two ways to slide easily through life- to believe everything and to doubt everything- both ways save us from thinking "- Korzbyski

Yeah- I've thought about the meds issue as well- I am tentatively thinking I might be able to get away with putting the doses in my transition bags and special needs bags and that it might work- since I'm slow enough that the spacing would work OK lol (at least until the run- then I might not be able to space the dosing right). Definitely something to make sure I fully plan for.

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"There are two ways to slide easily through life- to believe everything and to doubt everything- both ways save us from thinking "- Korzbyski

when you talk to the Dr, make sure you tell him/her that you want to be active if that will help, and it will give you something great to focus on. not that this is great for training, but i've seen some comments about medicinal marijuana and how it can help deal with the symptoms of parkinsons. again, i not of what i speak, but depending on where you live and the legal side of things, it could be a consideration.

I've read about marijuana helping as well- but, if I'm going to attempt this, I believe pot is a prohibited substance according to the rules of Ironman, so even if I could get way with it, I'd feel guilty not doing the race ethically- so, another consideration I guess- even if it would help, I'll probably forego that substance during training for the sake of "doing it right" - pain and all :) thanks for the suggestion though!

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"There are two ways to slide easily through life- to believe everything and to doubt everything- both ways save us from thinking "- Korzbyski

My dad has Parkinson's, and although he is not a triathlete, he has dabbled in all three sports from a fitness approach. I think that the benefits of the aerobic exercise would outweigh the risks ... Although when you take it to the level of Ironman training, listen to your body, and monitor how your body is responding.

One thing to be cautious of is that Parkinson's can affect your balance, which could potentially impact cycling.

Also, many people have one side / one part of their body that is affected the most. With my Dad, his right hand is most affected - which from a training perspective, is better than if it were one of his legs, although it can make everyday tasks difficult. We are thinking about switching his bike set-up so that the left hand operates the rear brake - since his left hand is more reliable, and it is safer to brake primarily with the rear than with the front.

Whatever you decide, good luck!

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https://www.instagram.com/gingerhowellracing/
If you find yourself thinking "What if I can't", instead think "What if I can!"

I'm 46 and was diagnosed with early onset Parkinson's early this spring. I've done a few Iron distance races (14) and I did 2 this year along with 4 half's after my diagnosis. I can't run worth a damn anymore, and am very inconsistent with what I can do each day. It makes for hard training, and nearly impossible to hit targets aside from time.

That said, I love the sport, and am going to continue on as long as I can.

I'm a PT and have staff that regularly treats individuals with PD. The biggest things are taking meds and staying active. On the staying active front, go to lsvtglobal.com. The results from this program are absolutely amazing. Finding and completing a Big/Loud program will allow for you to compete at a higher level for longer.

Sorry to hear it. I was just told the same today, and you sound like the same type of athlete as me (i.e. finishes in the dark!). I am a bit older at 55, but we are in the same boat

I am signed up for half IM in mid May and full IM on 2 July (Austria). My 4th IM and 10th half

Not yet started any meds at all. Doc sounded quite pleased that I wanted to continue full training!

Would love to have a chat offline -can you PM me?

All the best!

Julian

I have a very close family member who has had PD for the past 20 years. They were active before the diagnosis, even did triathlons for many years before the diagnisis and have tried to stay active since. Age, more than PD has slowed them down, as they are now in their 80s

This very recent NY Times article praises the benefits of remaining active. Best of luck and keep moving.

https://mobile.nytimes.com/...ps://www.google.com/

Hi,
Sorry to hear about your early onset PD.
Doing basic and translational research on PD and also closely follow the clinical side and auxilliary treatment strategies when it comes to exercise.

First.
Racing extreme endurance events (IM) is not healthy for the most healthiest of us, so there is that.
Current wisdom is that moderate endurance training is beneficial in neurodegenerative disease, including PD.
I think a long day out there at moderate effort and being in control is ok, but pushing the limits and stressing your (undertrained) body certainly is not, and can even be harmful (heat, dehydration, exhaustion etc.).

Second:
Stemming disease-associated functional decline, in PD the greatest benefits are suggested to come from training of coordination and balance (Yes, swimming cycling, hiking/running qualify), and living a mentally active and fulfilling/happy life.

Sorry, but there is no clear cut answers and a carte blanche one could give.

I would make sure to work closely with a good Neurologist specialized in movement disorders, who takes the time to understand your outlook on life and can tailor and regularly monitor your treatment plan.

That's tough news to receive. But glad to read you're still planning on being active.

I have no experience with PD, or any substantial knowledge of the disease, but I do have experience with Multiple Sclerosis so perhaps my experience can help a bit?

I was diagnosed with MS almost four years ago. I wasn't active when I was diagnosed and remained that way for several months while the disease progressed. Then I started reading about the healing effects of aerobic exercise and clean eating (stimulates bloodflow, reduces chronic inflammation, etc). So I went fully whole food, plant-based eating and got into triathlon. It has worked wonders for me and completely stopped the progression of the disease (for now, at least).

As someone said in the thread though, extreme endurance events aren't healthy for anyone. So I think the key thing is to listen to your body and adjust accordingly.

I realize that this may not be entirely relevant but wanted to share in case it helps. And let's not turn this into a debate on plant-based vs paleo, vs whatever!

I did some 10 Ironman races over the years before being diagnosed with early onset PD two years ago. A couple of thoughts:
- as was observed previously in this discussion, Ironman racing is not healthy for anybody
- but, Ironman racing (and training) can give life structure and purpose. It can also be good to feel how you get better at something, especially when suffering from a condition in which most things get worse
- my advice to you is that you aim for an Olympic distance. You can get there in one season. That is realistic. For a typical PD progression, you will still be able to race a year for the rest of the year. If it goes well, you think about doing more. But, don't set yourself a multi-year (you should take at least two years to ramp up for an IM) goal
- exercise is good for all PD patients. But, you likely will suffer from asymmetric symptoms. That makes you more vulnerable to injuries. Overuse is a common problem for healthy athletes. But with stiffness and dyskinesia, you are at increased risk of hurting your meniscus (running) and your shoulder (swimming). Work with a therapist/coach. Do a careful video analysis looking for asymmetries.
- from my experience and everything I read so far, balance on the bike is not a problem. I read a medical article about a Dutch patient who could no longer walk. They put him on a bike and he was fine. No kidding!

So, take it one step at a time. Don't put too much pressure on you, but also, don't settle for a 5k. And keep all of us posted how you are doing. You are not alone in this.

Sorry to hear the news. My dad is also a recently diagnosed sufferer albeit not a triathlete.

Heres a link to an interesting video showing how cycling can impact PD -

http://www.bbc.co.uk/programmes/p036gg2v

Patient: "it doesn't feel like I have Parkinson's anymore".


Doctor: "That was really the first sort of inkling that maybe cycling or exercise in this case was actually changing brain function"

Keep us updated with your journey!

Nothing to say but full admiration to you. I am triathlete with Gout, nothing like Parkinson's, but your attitude and hopeful demeanour make me want to forget about my condition and push on. Thanks!

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An age group triathlete just like you.
TopTriGear - https://www.toptrigear.com

I hope it all works out for you. I hope you surprise your doctors too.
Further to the discussion. There's a guy in my Cycling club with PD he finds cycling gives him the most relief from his symptoms. He has no troubles Cycling but struggled with day to day stuff. So he regularly cycles 500 miles plus per week. That's a lot for anyone and he's in his 60s.
PD must be hard to live with but you seem to have a good mindset so I with you luck.