Training advice - Mountain climbing

[Diana]

First of all, I must say this website is really inspiring - I was diagnosed 2 weeks ago and am trying to come to terms with everything - its great to see a community of people who won't quit out there!

Well, I suppose there's no good time to get diagnosed with MS. That said, I am a rock climber/mountain climber/cyclist and have plane tickets booked for an ambitious trip in 4 weeks, which certainly complicates my life a bit. I do have an option to postpone it ($$), but there's a part of me determined to see it through.

So I'm seeking some advice about training and managing my new friend. I've always been good at listening to my body for sports injuries, but that comes with experience in knowing how you respond to the injury. I've already realized I need to avoid the heat, but how far can I doggedly push through symptoms? So far, I seem to be more sore than I expect, and I've got some manageable numbness/tingling which seems to get worse after I push it. Will my muscles just always hurt from now on, or is that a sign i should calm down?

My other concern is the 'fatigue' - are there any ironmen/marathoners who have dealt with extreme exhaustion from this? Climbing mountains is never a short day in the woods - and I worry about hitting a wall in an unsafe place. What can you do about it? Am I better off playing it safe and scaling back my ambitions for now, or is that like giving in?

Any advice would be much appreciated!

Thanks, D

[ActiveMSers]

Diana, so glad you found us! I figure you've already found my exercise tips over on ActiveMSers.org (if not: http://activemsers.org/exercisesstre...ingwithms.html).

For your specific questions, I think your body will let you know what you can and can't do (or feel comfortable doing). And as folks here will tell you, there is no way of knowing if you will stay sore or if that will go away (or get worse). Same with every other dang gum symptom.

Unless you are having a relapse, issues likely won't come on suddenly, like when you are hanging off the side of the Eiger. If you have a problem with fatigue for instance, you'll almost certainly notice it first in training before your life depends on it. But our other marathoners and ironmen can talk about that with more confidence.

And I may just be speaking from my stubborn soapbox, but don't play it safe until you need to—ambition full speed ahead!

-Dave

[AMFADVENTURES]

Diana, also glad you're here, regrets for the reason. Dave said it exactly right, "full speed ahead".

You may have a leg up if you are already able to listen to your body and respond accordingly to injuries. Dealing with symptoms of MS effectively might present a new twist but, it seems to be a similar process, although the specifics can be very individual. As far as the fatigue, exercise has been shown to be one of the best treatment options, I know it certainly works for me. If you're worried about getting stuck on a mountain, take a friend along. And don't forget diet. Most people with MS pay at least a little closer attention to what they eat. It could be that we are just a bit more sensitive to certain foods but again it seems to vary by individual.

Good luck on your pending adventure, if you don't mind, where are you off to?

Larry

[Slugger]

Diana,

YOU CAN DO IT!!

Ahem, okay. You got that? Good, moving along.

During my first flare, I was in the middle of hiking the 48 highest peaks in New Hampshire (it's a thing, it's hard, it's hella fun). Many of these hikes involved insanely early starts, long, long days in some serious backcountry wilderness, and if I had even thought about calling for a rescue, my friends on search & rescue would have smacked me silly. Oh yeah, did I mention I was an active SAR member? What I'm saying is, I know your game, and I know the love and devotion to the mountains that some stupid disease can't put the slightest dent into. But I also know the fear.

I will say, I had to curb my hiking. I did. I hated it, I cried and ranted and screamed about it, but I did. I turned around one morning after a mere 45 minutes on the trail because the damn trail wouldn't stay put. It kept weaving and bobbing all over the place, and those stupid rocks kept leaping up and grabbing me. I had to bail on a rock climb because I wasn't safe to belay. I took 14 hours to do what should have taken 8 or 9. I added *years* to my quest to get all 48.

But I did it, and so will you. Here are some tricks that worked for me, and maybe they will for you:
1) do absolutely everything you can to stay cool. Get an ultra lightweight cooling vest. Get those cooling bandanas. Freeze your water bottles and shove them against your back. I found that wearing an ultralight-weight loose long-sleeved shirt kept me cooler above treeline or on exposed rocks - it works in the desert, so why not on rock?
2) If you don't already hike with two poles, do it. Get the collapsible kind so you can stow them when you need to.
3) Take lots and lots of breaks. Take breaks before you get tired. Keep them short, but take them often.
4) Be prepared to scale back. I had to choose my trails very carefully so that I had more bailout options. It sucks, but at least I could get into the woods and get dirty, which beats sitting at home WISHING I was dirty.
5) Reduce every last bit of weight you possibly can. I was blessed beyond all reason with a best friend who was willing to carry all of our mutual ten-essentials gear so that all I had to carry was a probably-irresponsible minimum. Water. Snacks. A headlamp. Seriously, I was carrying 8-10 pounds to her 25+. She did it out of love, and because it meant she could still have a hiking partner. It was a huge ego blow for me, but it meant that we could still get dirty together.
6) Realize that the amazing world of winter hiking is just a few short months away. It is bliss for so many reasons. Doesn't help your trip now, but, well, I had to mention it.

There are other things you'll find that work for you. You'll have to scale back. It'll suck. But you'll stop and look down at your muddy boots, or grab a sling from your rack, and realize that it may not be the dream trip you had hoped for, but it's a hell of a lot better than sitting at home and watching the highlights from the Banff Film Festival for the fifteenth time, wondering what might have been.

(BTW, I'm now a cyclist and possibly entering my second flare - we may be figuring out the fun of that one together! I'm really hoping the road behaves better than that trail did...)

[firefly]

Finally, a topic I know about!

I just got down from Mummy Mt. in Rocky Mountain National Park yesterday. Working in the mountains requires a different mentality that you deal with in many other sports. Though you need the same skill with pacing (if you race, you're gonna need way more breaks), you also need to find ways to go at a comfortable pace, then either break, or find a position that isn't so tough (if you're carrying a heavy load of gear). You do need to be particularly mindful of staying hydrated, sweating is the only way your body is going to stay cool, and you lose more and more water the higher you get.

Also, many of the cooling vests only require cold water to "refresh"... fortunately, the one thing the mountains still have (out here anyways) is melting glaciers and snow, so that makes life much much better.

As for safety, go with friends (inform your friends of potential problems, plan gear weights accordingly if needed), rope off as need, plan your route meticulously, inform others of your route, then execute that plan. Also be mindful on your mapping that your evac route out from many points doesn't need to be the same as your route in, even if you have a steep climb as your route, evac routes, even if they are longer, should be shallower in grade changes.

As always, ffs, more than one member of your party should be equipped with SPOT or some other way of texting or getting help from places with no cell phone coverage (that part holds true even for people without MS).

7 years since dx, and I'm still climbing... go out and get some.

/oh, ya, you're muscles are gonna hurt... worth it.

[tkotko]

Ah, inspiring words all around! I too love mountains, hiking, and all things outdoors. I was dx last year, and I have to say that the adjustments and the triumphs are surprising. I recommend a cooling vest--this helped me do some amazing rock climbing on Mount Lemmon in AZ last summer. I was completely exhausted more quickly than I would have been years ago, but I did it!! For me, it has been a challenge to keep my confidence up--my body can do things that I don't feel like it will sometimes! That is, when I can't feel my legs on the rock wall, I have to test out the strength and range of motion repeatedly. 'Confidence and control' are things I try to focus on with my unsteady legs. 'Keep moving to keep moving', my PT said, and she was very right! It isn't like it once was, it hurts and it's tiring, but keep on going--it is truly worth it! Now on to the next adventure!

[Yogi]

Excellent tips, Slugger. Thank you! I will incorporate several of these for our hikes. Diana, awesome plans you have! Enjoy!

[garyp]

Do it because you still can...

Diana:

Personally, for the first 2 years let alone first 2 weeks after DX - I was in a daze....why in the hell this disease and why me? So the fact that you even considering going on such an adventure tells me that you have already turned a vital corner...a corner it took me a entire decade to turn.

My first symptom showed up almost 18 years now ago. I have had good spells, bad spells, really bad spells...and right now "ok" spells. Within the past several years have hiked with my family (children who are now 16 and 15 and wife) up and to Macchu Picchu, Everest Base Camp, and last month Kilimanjaro. I also hiked up Pikes Peak. Granted, these are hikes and not climbs - walking a lot easier to deal with than balancing a toe and a finger from a rock ledge. A large part of the motivation? To say that I still can. To do these things while I still can. To say that I have done them. And I do enjoy it. And to to these things with my family - words cannot express. Yes, I do face challenges doing such hikes resulting the impacts of MS - it is all about adaptation. If evolution is to be believed, then it is not the strongest who survive...but those best able to adapt. You have got some great advice on this thread in what those adaptations need to be.

I am with Dave on this one "...don't play it safe until you need to". Live life as normally as you can. Keep setting plans for your next trip - this will keep you motivated to just keep on moving to get ready.

[Diana]

Thanks for all your responses! I have no plans on giving up climbing, peakbagging, or cycling yet – and it strengthens my soul to know that I’m not the only idiot out there who has that idea too. I’ll have to learn to be less stubborn when it comes to bailing, and make fun of those with trekking poles a little less. I'm totally down for sticking my boyfriend with the heavy pack, though!

My boyfriend/partner and I are headed to Banff/Lake Louise area of the Canadian rockies for a third time – it is amazing country out there, even if you don’t like being a ‘tired body moving upward’ you should travel there some day. Its a great place to ride, too. I (think I am) recovering from my second relapse, which led to my diagnosis. I’m sure I’m not the only one who was hoping my optic neuritis was just a ‘freak thing’.

Anyway, we had plunked down the $$ for the plane tickets two weeks before my symptoms appeared – what bad timing! After finding this forum and talking to people we’ve decided to go for it and make the best of it. Its helped me mentally to have a short term goal and to stop moping about things. I have already learned to ‘love’ waking up at the crack of dawn to get my training rides in. Better than not riding, I suppose...

Funny thing about the cooling vest – my boyfriend races mountain bikes – he’s been freezing his 3L camelback for years on hot days and turned me onto that trick – I must say it actually works pretty well in keeping you cool, but I’ll have to look into the actual vest gizmo.

So Larry, what diet changes do you recommend? I’ve read a lot of stuff in the past month – and for every page that says one thing you can find another that speaks against it. What works for you?

We leave in two weeks – maybe I’ll get on meds before, maybe after – I’m not going to worry about it. Any thoughts whether its smarter to wait or start?

As for how the trip will go – climbing/mountaineering has taught me that the trip you wish for is never the one you get – it is all about what you learn in the process. Guess this is no different.

[garyp]

Don't wait on the medication....

Diana:

Welcome to the idiot's still doing crazy things with MS club

In response to your question regarding medication:

"Any thoughts whether its smarter to wait or start?"

Start as soon as you can - the evidence continues to mount that even if you are not currently in a relapse, MS is still being diligent about advancing itself. If you start medication, you will not necessarily notice an immediate difference. What they do is help you over the very, very long term - resulting in a 30 to 60% (on average depending on the medication) reduction in relapse rate and lesions...the sooner you start the sooner you will get that added protection.

When fellow MSers meet me and see that I am doing relatively well after 18 years - the first thing they ask is "what medication are you on". My response is always - it is not important what medication I am on, what is important is that I am on one and that without fail I take the medication on schedule.

[Diana]

Gary - I should rephrase that. I plan on getting on medication asap (for all the reasons you stated). Is starting betaseron a week before a big trip going to ruin my trip because of side effects? The Doc recommended taking a 1/4 dose till I get back, which I think makes sense, but I'm sure she's never taken any of this stuff before...

[AMFADVENTURES]

Hey Diana,
I'm not the fanatic some people are about diet but I do believe that as people with a compromised immune system, we owe it to ourselves to try to eat as healthy as we can. For me that just means more fruit and vegetables, lean meats with less saturated fats, more fish and good oils like olive oil. I eat a lot of salads in the summer and if I do end up with fast food, it's a special occasion. What kind of cycling are you doing, got any events coming up?

Slugger, loved your tip about winter hiking, it does make a lot of sense. How about you Slugger, got any cycling events coming up, already done some? I assume you guys have seen this, "Cycling explained" http://www.xtranormal.com/watch/1267...plained?page=1

This is a great thread you guys have going here! Feel free to join us on "MSers in Training" too though. We all love seeing what other MSers are up to, it's just encouraging for everyone.

Larry

"People don't take trips ... Trips take people." - from Travels with Charley by John Steinbeck

[garyp]

My input - wait a week

Diana:

Thanks for clarification on your question...will not provide a medical efficacy opinion on whether or not you should delay Betaseron by a week (I am in no way medically qualified to render such opinions).

From a patient perspective though - interferon side effects (especially at first) can be a challenge. Betaseron is the only mainline currently available drug (apart from Tecfidera which will be starting shortly) that I have not been on, so cannot comment from direct experience. However, I can tell you that when I first started to take Avonex (another Interferon) I would take the drug before bed time on a Friday - it would knock me out with flu like symptoms for 24 to 36 hours. Over time this did change - plus I learned to manage it better through taking Alleve or Tylenol about an hour before. That was my first MS drug. 14 years later...I tried Rebif (another interferon), which for me had very minimal side effects.

While your doctor's suggestion of a small dose the first week while you are on your adventure is a good compromise - if I were in your shoes, I would be inclined to just wait a week and then start. As this if your first MS drug, and is your first cycle of self injection - I would be inclined to be closer to medical help should a worst case scenario happen and you get symptoms such as difficulty breathing, swelling of your face, lips, tongue, or throat all of which require immediate medical attention. If your adventure was going to last for 6 months, then this would be a different calculus - but as is only for a week different scenario.

[teena marie]

diet,tools

Hi Diana,

Good for you-go for it. Just keep listening to your body and you'll make the right decisions.

I have found a low saturated fat diet has helped me. George Jelinek, an Australian doctor with MS has some compelling science based evidence on his site www.overcomingmultiplesclerosis.org

I use the forearm crutches Sidestix listed here in gear and use 2 of the ice vests-Glaciertek and Izibodycooling-also found in gear. All are great for me.

Take good care-I've visited where you are going.

Teena Marie