Backpacking with DMDs?

[Slugger]

So psyched that I found this site - awesome to know there are other MSers out there bustin' a move.

I posted this on the MSWorld forums and basically got a "you're lucky you can still move" response. I'm hoping to get more here. I'm not on DMDs yet, but I got to thinking about life once I'm on them. I am planning a five-day backpack for the end of July. I won't be on the meds then, but I will likely have multiple backpacks this fall, plus I'm on a search and rescue team so might need to carry meds in the field.

I know the meds can be out of the fridge, but I'm worried they might get too hot. For SAR stuff I can just pack with ice packs, but for a longer trip, what do I do? Do you think if I double-bagged them and stuck them in a water bottle with stream water that would keep them cool enough? I just read about needle clippers instead of a sharps container, so I'll probably get one of those. Any other ideas? What do I do when winter comes around? I'm not going to stop snowshoeing because I need to stab myself - no way!

[KristaH]

Welcome! Glad you found us. I'm not sure how to answer your question though. I did a car trip cross country 2 years ago with my DMD's I had a cloth cooler from the drug company and the gel ice packs and ice and they melted about 1/2 way there but the water kept the shots cool enough that it wasn't an issue. Hope that helps! And good luck on your trip! Its awesome your not quiting what you love.

[Slugger]

Thanks, Krista!

I think I'm going to try to rig up something on this trip to try it out, and keep a marine thermometer suspended in the water to see if it stays cold enough. That way, I'll be all prepared for when I'm *cough cough* too sick to *cough* work and simply must go home (or, um, to the trails, but who needs to know? ).

[ActiveMSers]

Ha, I was about to post *exactly* what you just wrote. The only thing I'd add: I'd like you to report on the results for the group.

If that doesn't work effectively (or if you are camping in Death Valley), I'd look at bringing a stash of instant ice packs (ammonium nitrate with water that when combined creates an endothermic reaction). Heck, you might want to test those, too.

While the ice packs drop to 35 degrees or so for only 10-15 minutes (and stay pretty cold for up to 30 minutes) it could buy a few hours during the hottest part of the day and help keep the meds below 77 (Rebif) or 86 degrees (Copaxone, Betaseron). It might work best wrapped directly around meds or best dropped into the water where you are keeping the meds. Ah, yet another thing to test.

One other item. When you are on SAR, remember that ice and ice packs taken from our freezer (often set at 0 degrees F or colder) can easily freeze your meds unless you take precautions. Here's the testing I did that shows what can happen:
http://www.activemsers.org/gear/testmedcooler.html

[Slugger]

Dave, awesome research on those coolers, thanks! The medcooler would be perfect to have on hand for SAR stuff.

Oh, also totally appreciated the work on cold temps. Spent a night in the Whites at about -10F *inside* the bunkrooms. Usually, though I'm daytripping in the winter, but still might need meds in the car. I'm thinking I might do some testing on the chemical heat packs that I always have with me, to see if they don't get too hot.

I thought about the ice packs, but they are heavy and bulky. Now, I'm no ultralight backpacker, but if I tried to carry enough for five days, I'd have no room for my bottle of wine and strawberries and chocolate dessert! I could definitely test them out at home and see what the results are, though - if it is good enough, then it might be worth taking just one per day to drop the temps when needed.

I'll definitely report for you! The backpack is at the end of the month. I can't believe I'm contemplating carrying an extra Nalgene full of water around with me...

[ActiveMSers]

Okay, Slugger, I'm fine tuning this. Yesterday I was testing travel mugs for the car magazine I do and I discovered one that is essentially spillproof and can keep items cold (or hot) for up to 7 hours. (In my test, the contents were still hot after 3 hours.) Anyway, I'd skip the Nalgene and go with something insulated (stainless steel, not plastic). I know, I know, more weight. But peace of mind! Here's the OXO LiquiSeal Stainless Steel travel mug I tested:

http://www.oxo.com/xxoxo_ibeCCtpOXOP...jsp?item=47318

While the above might be all you need, an instant ice pack or two for use in a pinch might be icing on the cake (pardon the pun).

Winter camping is a different beast. For day trips, leaving the meds in the car should be no problem if you a) put them in a cooler and b) wrap them with unfrozen ice packs. It would take some pretty tremendous power to work through the car, the cooler, and then the ice packs. The heat packs easily could get the meds too hot if you are not careful. That'll take some experimenting. For camping, I would guess the above travel mug solution would work, especially if you kept the mug in your coat and then tossed it in your sleeping bag at night. You just need to make sure the water inside doesn't freeze.

[Slugger]

Oooh, that's smaller, too. So, more weight for the mug but less water weight. And, you mean I'll just have to buy a new travel mug? Oh darn.

I think I'll tackle winter camping once we get there. Since I don't even know what meds I'll be on, there's a good chance I'll be able to time any trips to fall on "off" days (unless, of course, I'm on copaxone). I haven't done any multi-day winter trips and don't have any currently planned this year (just a few overnights), but we shall see!

[Wantin1]

Backpacking with DMDs

Just wanted to give my two cents. I just spent 12 days in the woods backpacking in New Mexico with my son and took my meds as scheduled. I had a frio cooling device that keep my Rebif at around 70degrees day and night. The frio is water activated and is good for 48 hours. I would get a nalgene full of water and purify it then soak the frio for five minutes and it worked well for me. Im not a big poster here but backpacking is a passion of mine and wanted to share what worked for me. Happy Hiking

[hannakat]

Hey Slugger. You can always choose LDN (low dose neltrexone) and not go the DMD route....just a thought.

Lots of good research out there to read over.

[Slugger]

Wow, that Frio thing looks PERFECT for this. Thanks! Wonder how much it weighs?

Yeah, I'll be discussing all the various med options once we get to the dx. I'm mostly just trying to keep looking on the up side of all of this mess!