Any active divers with Parkinson's?

[petersth]

Any active divers out there with Parkinson's disease? I was diagnosed with early onset about seven years ago (when I was 43), and am starting to consider when to "call the dive" forever, so to speak. Thanks.
Peter

[enchantmentdivi]

Have you called DAN?

[petersth]

I contacted them a long time ago, but the disease is different for all afflicted and the med.s have different effects as well. In short, I don't believe that there is any sort of firm answer, so in lieu of that I'm trying to learn from the experiences of others (if there are any...).

Thanks for the suggestion.
Peter

[enchantmentdivi]

Best of luck to you, Peter.

[Dusty2]

I am far from a Dr. or medical person but the best advise I know of is honestly listen to your body and heed what it's telling you. We have a tendency to listen more to our desires than to listen to the info our body gives us. Ask yourself honestly, am I a safe diver? do I feel perfectly comfortable out there? In an emergency would my condition prevent me from saving a buddies life? Chances are you already know the answers or you wouldn't be asking for help making the hard choices. Find buddies that are aware of your condition and confident that they are going to be able take care of you if needed and that they feel that they are OK with a buddy that can't help out if they get in trouble. This could extend your viable time but in the end It's you who will have to make the decision and live with the consequences. Just be honest with yourself. That is the hard part. Keep asking, do I feel ok about asking someone else to dive with me? Am I being fair putting them in that position. How does this affect my loved ones am I being fair to them?

I am very sorry that life has handed you this hand to play. I hope you make the right choices and that you can find the right path to a long life.

[spatman]

Peter, have you posted your question over on Scubaboard? There's a much bigger pool of divers there and you may have more luck getting a response from someone who has the same condition as you do.

[Jeff Pack]

I think everyone has that little inner voice that tells them its time to hang something up.

I used to be a national class climber back in the day, and climbed with most of the known names back then (The Lowes, whittakers, Chouinard, etc). Climbing back then was my life. I climbed every weekend, of every month.

But when my back started taking a turn for the worse, I tried to power through it. Luckily my stupidity didnt get my climbing partner killed. But I disregarded that voice.

If you are looking for advice to tell you to keep going, or to stop, I think you are looking at the wrong place. The best place is to stand in your bathroom, face the mirror, and ask that person right there.

Am I physically able to keep going, and not put my partner/buddy at risk?

Only you can answer that question, don't look for the answers here.

If you do continue to dive, please make sure to let your dive partner/buddy know. Not because you have anything, but because you have concerns. Self doubt is the worst, and can become a self fulfilling prophecy.

Best of everything to you.

[Joshua Smith]

I think everyone has that little inner voice that tells them its time to hang something up.

I used to be a national class climber back in the day, and climbed with most of the known names back then (The Lowes, whittakers, Chouinard, etc). Climbing back then was my life. I climbed every weekend, of every month.

But when my back started taking a turn for the worse, I tried to power through it. Luckily my stupidity didnt get my climbing partner killed. But I disregarded that voice.

If you are looking for advice to tell you to keep going, or to stop, I think you are looking at the wrong place. The best place is to stand in your bathroom, face the mirror, and ask that person right there.

Am I physically able to keep going, and not put my partner/buddy at risk?

Only you can answer that question, don't look for the answers here.

If you do continue to dive, please make sure to let your dive partner/buddy know. Not because you have anything, but because you have concerns. Self doubt is the worst, and can become a self fulfilling prophecy.

Best of everything to you.

Great post. I wish you the best of everything as well, Peter.

[LCF]

It also depends on what diving means to you. People who are far from able dive; they partner with people who understand their situation and are willing to take up the slack. The HSA trains instructors and divers to provide that kind of support.

You might not be able to do the kind of diving you once did, but you may be able to dive. If floating and marveling at what's underwater is what you seek, you can find it.

[Joshua Smith]

It also depends on what diving means to you. People who are far from able dive; they partner with people who understand their situation and are willing to take up the slack. The HSA trains instructors and divers to provide that kind of support.

You might not be able to do the kind of diving you once did, but you may be able to dive. If floating and marveling at what's underwater is what you seek, you can find it.

And again. Great post.

[petersth]

To all replies,
Thanks much; I appreciate the advice and sentiments. I absolutely agree with the "look in the mirror" type responses, and that will always have the final say, but in the interim I was hoping to gather some insight as to what others have experienced physically. Parkinson's affects each individual differently, but more info is always good, and enough info might help me bracket out some of the possibilities (or it might mislead me, so I do need to be careful). In the end, I probably am looking for clues to an answer which will always devolve back to that pesky mirror. Is breaking mirrors still considered bad luck? It's all good, thanks to everyone.
Cheers,
Peter

[radricky]

hi peter,
i find your post interesting in the fact that i also have early onset parkinson's. it is really a tailored disease. my dive buddies noticed my dive light tremouring before i realized what was happening. it was mainly at deco that it happened.

while i've pretty much stopped diving, i think i'll contact some of my trusted buddies and give it a go. well, not deep deco at least, it's been more then a year. it's really up to you, and your buddies should know.

while i'm not a PD expert, or your neurologist, the main concerns i have to raise are: how is your mask face? (for the general folks, this is a Parkinson's disease term, not diving related.) i'd hate to see you lock up and loose a reg and drown.
what meds are you on? mirapex? sinament? selegeline? i'm currently only on mirapex.

richard

[petersth]

HI Richard,
I too stopped deco and all tech stuff as soon as diagnosed, but have been making relatively simple (and getting simpler) dives for the past seven years. Currently I am about maxed out on Sinemet, Comtan, Requip, and Azilect. When I say maxed out, I mean that if dosage or frequency is increased (currently sinement/comtan every three hours) then I get all loopy with diskinesia (that's Michael J. Fox type shoulder rolls and relatively smooth uncontrolled movements), but too little and my right side starts to freeze up to the point where I can't walk and have limited hand movement. Left side is always okay.

The face is an issue, but not why I thought that this might be the case: I tend to scrunch my face when diving (the PD mask you refer to), which causes random leaking. I'm clearing my mask all the time (I've tried a ton of stuff to fix this, including coating the mask rubber with silicone, all temporary or no good). My symptoms tend to lessen when diving, all profiles, and I think this might have to do with an effect similar to vigorous exercise, which also delays and lessens symptoms (temporarily).

I realize this must make me sound nuts to be still diving, but I have never been in fear of not being able to hold the reg. in my mouth, or not being able to swim back to the boat. But I believe that I'm approaching the time where I need to be very cognizant that this will probably be the case in the relatively near future. Just some background, I've been diving a long time (since 1979) and have been exposed to some underwater challenges that make me feel like this is still a manageable risk. On the other hand, it's also unchartered waters for me. On the other hand is a shaky dive glove (just threw that in there for the hell of it).

Thanks, Richard. If you don't mind me asking, how old were you when diagnosed, and what are your symptoms besides tremor, or does MIrapex resolve that?
Peter

[radricky]

peter,
i was ~44 when i was diagnosed with PD, i'm 47 now. but it was coming on for some time. wow, both of us about the same age! I really started to notice problems, but not the cause, during a cave trip in mexico. other then myself, you make it three people i know of with PD. one was a neighbor of my folks, the other is a dive buddies wife. right now it's pronounced tremors and stiffness in the left hand/arm and side. i'm a southpaw, so i've adapted rather well to the right side. typing with the left side of the keypad is a bitch. sounds like you have read about the forced exercise theory. i'm jogging, and it helps.

As far as meds, mirapex helps somewhat. i've just upped my dosage, and will see my neurologist next week. how does requip work for you? i have no knowledge of comtan and azilect.
richard

[petersth]

Richard,
My right side's the one going bad - good to know we've got a full up system between the two of us (sort of). I took mirapex for a couple years, the sleep issues made me try requip, but there's no difference that I can tell, with either effectiveness or not screwing up sleep. I haven't got a good nights sleep in seven years, but I'm fairly used to it at this point, certainly not a big deal in the morning (from about 2 am when I get up until around noon). Comtan just smooths out the sinemet absorbtion (or something like that); doesn't do a thing on its own. Azilect was great for me about four years ago - it gave me another 1.5 years of being able to run. I'm not really sure what if anything it's doing now, but it could be a lot (don't particularly feel like finding out).

You're the first person that I've communicated with whose in a similar situation. Actually, come to think of it, I don't know anyone else with PD. Keep in touch.
Peter

[John Rawlings]

I'm glad that the two of you have been able to link up and start a dialog here. I'm learning a lot just by reading your questions and comments to each other.

- John

[SeanKylgod]

I read this a few days ago and meant to get to it, but got caught up in other things..

I am not a doctor (yet) nor do I have PD, but a family member does and I had a few ideas/thoughts related to this before you had even posted it..

Have you considered a full faced-mask? in lieu of safety protocols, I would see it necessary to be able to do a controlled no mask ascent should your full-faced mask flood/get kicked off/free-flow or should you have an OOA situation that required you to hook up to an octo.

The face is an issue, but not why I thought that this might be the case: I tend to scrunch my face when diving (the PD mask you refer to), which causes random leaking. I'm clearing my mask all the time (I've tried a ton of stuff to fix this, including coating the mask rubber with silicone, all temporary or no good).

From what I read, you are on a lot of MAO-B's and one (or two?) dopamine agonists. How is your tolerance to them? Ask the person in the mirror if your meds are making him too lethargic to safely continue.

I also gathered that you lose motor function in your right (forgive me if I have this backwards, it's been a long week) side.. Have you considered trying to use the pro QD with i3 BCD? the inflator is right at the hip and doesn't take any effort at all to reach. It is also located on the left hand side.. my primary dive buddy dives one and he loves it. Just a thought.


While none of us can tell you what you can and can't do, I'm sure a lot of us will have *horrible* suggestions for you. I am happy to see that you met someone else who is similarly afflicted and I hope that my mindless rambling was in some way helpful ;-)

[petersth]

Good suggestions, thanks. I think that if a specialized BC becomes necessary than I will call it a day. I do have a big responsibility to assisting my buddy if needed, and that much limitation wouldn't be fair (or probably fun). Boy, a full face mask is a big expense if I'm getting ready to call it quits relatively soon. I'll have to think about that. If I did it I would probably carry a regular mask on my harness and go back to carrying a pony bottle as a backup versus the mask-off free ascent option. If it becomes too complicated it is likely to no longer be much fun for me, so that might be a signal in itself. Thanks.
Peter

[ljjames]

Another thing to think about is diving as part of a 3 person team. Reduce the stress load, increase the safety for you and your buddy. If diving is the thing you love, and it brings joy to your heart, do it as long as you can. I am quite sure you can find people who are willing, able and trained to help you enjoy it for as long as possible.

[SeanKylgod]

+1.

Another thing to think about is diving as part of a 3 person team. Reduce the stress load, increase the safety for you and your buddy. If diving is the thing you love, and it brings joy to your heart, do it as long as you can. I am quite sure you can find people who are willing, able and trained to help you enjoy it for as long as possible.

[Blow-N-Bubbles]

Another thing to think about is diving as part of a 3 person team. Reduce the stress load, increase the safety for you and your buddy. If diving is the thing you love, and it brings joy to your heart, do it as long as you can. I am quite sure you can find people who are willing, able and trained to help you enjoy it for as long as possible.

+1

A 3rd will take alot of stress off you and allow you to do what you enjoy. Keep it no-deco and in shallower waters. Learn your limits and listen to your body. Most of all, live life and do what you enjoy the most. If your 2 other buddies are aware of the circumstances they will be more likely to assist you and each other if needed. You can lead the way and set the pace, that way everyone is safe and having a good time.

Don't think of it as a limitation, just another task to perform or be aware of.

[LCF]

As I said about the HSA -- a dive buddy relationship is only defined by the people who enter into it. You've been accustomed to perhaps a couple of different models, but all of them have emphasized that all divers MUST be self-sufficient and equal partners in the dive. It doesn't have to be that way, if the imbalance of capacity is understood ahead of time, and the responsibility is gladly undertaken.

People who are paraplegic, amputees, blind and handicapped in other ways can dive. They need a buddy who knows how to help them with their particular problems. There are people who are gladdened by the opportunity to help someone else enjoy being underwater, even if it means they have to shoulder a bit more of the load. I don't think the need for a different BC, or a full face mask, should make you draw a line, unless you want to.

I can give you contact information for someone who is a certified instructor for the HSA, if you are interested in talking to her.

[petersth]

All,

Thanks very much for the suggestion, ideas, and concerns. PD is a bit tricky because no one can predict how it will progress and when, and the moment one thinks they discern a pattern, it is liable to change, perhaps subtly, or at times drastically. Caution and full disclosure are good rules to live by me-thinks; but that's likely the case with any diver.

Thanks again,
Peter

[BASSMAN]

Verry informational, Thanks!