multiple sclerosis

[Sard Rocklifter]

So here I am, a veteran of eleven burns, many volunteer hours, a fully integrated playa life... and newly diagnosed with multiple sclerosis. Part of my proactive assault on this disease has to include gathering information on how to deal with it in the desert, if I get to deal with it in the desert! Apparantly, mitigating heat and modulating body temperature are componants of managing MS, so thoughts of not being able to go to the playa are high on the list of what's hurting me right now.
Anyhow, to stick to the positive, I'm looking for conversation with anyone who's dealing with MS in their life, and certainly for folks who've been on the playa and managed their illness successfully. Or decided they can't go. I need to know.
Any and all input welcome. Thanks. And wish me luck? I'm gonna need it.

[theCryptofishist]

If you do searches on my old posts, you'll find that I am an advocate of disabilty on playa--along with knowing what you can and cannot do and planning ahead. Perhaps you should find someone from the Hotwheels camp (they offer some wheelchairs for playafolk, they don't have enough for everyone) as potential disability experts. I also suggest working with your doctor as to the stresses you'll be facing. What did you notice about the extremities before? That may be pertinant. Have an escape plan--enough money to stay in a hotel if you have to leave in a hurry, plus someone who can pack up your stuff and get it to you if you are unable.

The email contact for the BM Emergency Services Department is [email protected]
Someone will answer any questions you might have of them directly.
I encourage you to make this work--but I'm ignorant on the actual challenges you'll be facing.

[gyre]

I met at least one person with MS on the playa. I'll try to get them to join this thread. Dust and fatigue seemed to be the biggest problem, but they were there.

[PrincessCharming]

Hi there.. I'm sorry to hear of your diagnosis.. I think it depends a lot on your symptoms and how they are affecting you. I have a mild disability which has to do with a head injury and vestibular disorder. I know some of the symptoms of MS are similar to those of brain injury (fatigue, balance and speech problems, "brain fog" etc). I think it comes down to planning and preparing well. I know I really needed to make sure I brought a big bottle of water with me everywhere, and snacks. Also, be on top of remembering to take your meds on time. I messed myself up one night by getting distracted and forgetting my vestibular meds. I've also found I'm more sensitive to alcohol than before so have to watch my intake. Managing the fatigue is a biggie. It's a trick I'm still learning, because if I'm having a "good" day, I'll just motor along, enjoying myself and being "productive" till I notice I can't find the words I want or I'm dizzy as hell. To avoid this, I should be resting when not tired out, and spacing out the day's activities more. Especially at Burning Man! And I don't know about you, but if I overdo it on the "good" days, I can get knocked on my ass for days afterwards.. some kind of delayed cumulative effect or something. I don't know if you have a partner or a good buddy who might like to come along for the fun and support, but that would help too.. I also strongly recommend seeking out support right now in your community with others who have MS to help you understand more about how to deal with it. I hope that is helpful. Wish you lots of luck, and hope to see you on the playa!!

[Sard Rocklifter]

Thank you all for your suggestions and support.

PrincessCharming, I really appreciate your candid reflections on dealing with your own self. I think a lot of the things you mention, learning about fatigue, learning to monitor myself, are the things I'm going to need to get a handle on to get along on the playa. The advantage I have is years of experience dealing with the playa, to begin with...I know what it can be like out there! I was so glad to hear that you've been able to get to Black Rock City, I can't tell you, though we're dealing with different root issues, the expression seems similar. Your description of the fatigue and muddledness is already sounding familiar.

Gyre, I'd love it if you were able to scare up your friend with MS. As PC was saying, connecting with others, from both my home and playa communities, is going to be a huge support and reassurance for me at this point, not to mention the huge boon of being able to take in others' experiences.

theCryptofishist, I thank you for your practical suggestions, and the referral to the [email protected] folks. I'll get in touch as my questions crystalize. I also thank you for your encouragement to go. I know it can be done.

I am fortunate enough to have a supportive partner who I've been to the playa with every year since the first. I don't think I could go at this point without his backup, support, and understanding. It's only been a few weeks I've been sick here, just a week since my diagnosis. I've been pretty down, morale-wise, though trying to take this on in all its facets. Starting the planning for Burning Man is part accepting and dealing with this illness, as BM is part of my life. My plan is to be there.
Again, thank you. Reading these posts has set me up for a good day.

[PlayaPetal]

Hi - one of my best friends and a 4 year burner buddy has Progressive MS - she is 34 - diagnosed in her 20's. The most I hear her say is the she gets run down - but other than that - if you take care of your body, hydrate, eat, and make sure you take breaks and rest you should be fine. Of course it depends on your current health. I am sorry to hear about your diagnosis. I myself have RA and Lupus - but I don't let any of that stop me. Think positive, take care of your body and you'll be just fine!

[AntiM]

I was pretty sick in 2004, and Totem Camp had a swamp cooler chill area in the front half of their massage tent which saved my burn. I'd spend hours in the hot afternoon just lounging on the pillows provided. I am extremely grateful they put together such a welcoming place!

I don't know if that specific camp will do that specifically again, but you probably can find healing camps which will allow you to rest and rejuvenate during the day. It is nice to have a place to go other than your own camp for a change of scenery and a break in activity without being physically demanding.

[Sard Rocklifter]

PlayaPetal, AntiM,
Thank you so much for your encouragement and for relating experiences. I'm feeling a lot better this week, overall, and have started laying plans for Burning Man 06.

[PaulinMN]

So sorry to hear of your diagnosis.

I've been to the playa every year since (and many before!) I was diagnosed w/MS in late '99.

Yes, fatigue and heat are 2 factors of concern, but can be easily mitigated.

I would advise you you to make sure you have good shade available to you right where you are camped. Something that will completely block the sun from above, but also open sided to allow soothing airflow. Having a comfortable cool place of your own to relax and refuel anytime you need it is important.

Beyond that, drink way more water then you think you need (and probably more than other people), and listen to your body. Rest when you feel you need it. Take frequent breaks - wander into someone's dome or shade and ask if you can put your feet up for a few minutes. You'll be amazed at how most everyone will be more than willing to accomodate you.

If you ever have questions, or just want someone to correspond with, feel free to PM me.

Hope to see you on the playa.

[Sard Rocklifter]

Here we go again, it's almost playa-time!

I want to thank again all of you whose suggestions were so helpful to me last year. I found that the days were hard but not impossible, and the nights were glorious. Physical labor during the day was not very manageable. Lucky for me I have a great support system, and plenty of campmates helped with structure-building, ice procurement, etc. On my own it would have been very difficult. I was ok for runs into town as long as I was able to sit down and rest in the shade over and over. BRC is a great place for this... plenty of friendly people with shade. I took it really slow, skipped riding in Critical Tits, hung at camp a lot during the days, and did ok.

Keeping my meds cool was another issue altogether. A diabetic friend turned me on to a great little kit for storing the pre-filled syringes at the right temperature. http://www.diabetesandmore.com/detail.aspx?ID=226 links to the kit... there are several sizes and styles! They work by evaporative cooling, and as long as you pay attention to keeping the gel insert hydrated, it works like a charm. Low tech solution to a high tech problem Nice! Reusable! Yay!

So, if you're a person with MS whose lifestyle is reasonably active, you're not in the middle of a flare up, you have sympathetic and enthusiastic camp mates to help you, and you're willing to scale your activities to your energy level, go for it!

Thank you again, so much, to those of you whose posts last year helped me meet the challenges of MS on the playa. Thank you.

[Bin Noddin]

Hey, Sard! I wondered how things worked out for you and am very glad to hear that you made it last year and are going again. Have a great burn!

[wedeliver]

wow, you people are fucking incredible. Thanks

[FlamingFart]

I read this entire thread for the first time today, mere days before we leave for The Burn... and it brought me to tears (very manly tears).

I have a hand and leg tremor which doesn't pose nearly the difficulties as MS, but makes me a bit self-conscious in public.

You guys are truly awesome. I am so grateful for my extended playa family and the unconditional support that is integral to it's existence.

Glad you're coming out again, Sard... you're an inspiration!

[gyre]

Sard,
I haven't been able to reach my friend and now her email is down.
I don't think she made it last year.
I just hope she is doing okay.
Everyone enjoyed seeing her in 2005 when she did make it.
She did a bumper sticker that people liked so much they kept photographing mine.

Some friends in Hot Wheelz camp are trying to put together a group to help a guy come out with ms who had planned to come by himself, but is now having a hard time.
Maybe some of you can help?
I know he'd at least like to meet other people with ms that are managing out there.
His name is George.

http://eplaya.burningman.org/viewtopic.php?t=21201

[theCryptofishist]

Since I am considering an 08 attendance, I'd like to hear about how it works out. I don't have ms, but lost my legs earlier this year and am making adjustments rapidly.

[gaminwench]

Fishy, you are a rockin' inspiration to us all!!! Lookin' to meet you at Decom SF...

[theCryptofishist]

I;ll be teh one in the wheelchair!

[CaptainObvious]

I am glad I found this thread. My wife is in the long frustrating process of receiving her "official" diagnosis of MS, but we are all prepared. As she put it "We are past the point of making believe there is nothing wrong.." She has never been to a burn, and I attended in '05, just the one time. Circumstances of life have been keeping us away from attending, but all things considered, we are going to try hard to make it there for '08.

I am very interested to read how the burn went for the people posting here. Information and advice are welcome in a HUGE way.

[fancy1]

We've had fellow campmates with disabilities for many years now, one with MS, another on the heart transplant list, and others with assorted troubles. Many of us have RV's with air running when needed. Our camper with MS has been three years and would have been again this year if not for family obligations. She spends a lot of time inside, shaded and resting. But when she feels up to it, she's off and exploring with one or two canes to assist her.
Our heart-camper spends many days (hot hours mostly) down and cool. He's out at night when it's easier on himself, knows his limits and does all that he's capable.
We have an artcar in camp that cruises often with our disabled campers, they appreciated seeing the distant art that they wouldn't have been able to see.

HotWheelz camp is a great one too. They helped our MS camper before the artcar was built.

I'd vote for GO FOR IT, know your limits, be aware of your conditions/surroundings, and enjoy!

Fancy
who is also one of those heart-trouble folks... I manage, I'm aware, I know when I've had enough, been burning many years and won't stop now.