Multiple sclerosis flare up during summer heat

Overheated

If you’re battling MS, there’s a good chance you already know that summer heat is a bummer. Personally, when I start to get overheated my optic neuritis gets worse, causing me to lose vision — or even get double vision. It’s not that the heat is causing new lesions; it just makes lesions you already have pass even less nerve signal. The crazy part is, it only takes 1/4 to 1/2 a degree increase in core body temperature, and things start to change. One minute you’re fine, and the next, you’re reliving the height of your worst flare-ups. This is a really common symptom of MS, with almost 80% of patients experiencing some sort of heat reaction. The only good thing about it is that it’s only temporary. Once you start to cool down, things will normalize — an event called Uhtoff’s Phenomenon. 

There are a bunch of products on the market to help people with MS cool down in the summer heat. The maker of one such product, Sam White, reached out to me last year with a cooling necklace that was helping MS patients. Sam didn’t set out to help the MS community when he made his product, but the MS community found him anyways. He was nice enough to send me a couple to try, but with it being in the middle of winter here in the PNW, I’m finally just now able to give my opinion…and I’m amazed. They sat in my freezer for months, but when summer finally came and I was sitting around feeling miserable, Meg reminded me about the necklaces. The results were noticeable, so if you have MS or any heat sensitivity, Sam’s Nano-Ice Collar is worth buying. Feel free to check out the link at the bottom of the page. 

I’ve done a lot of searching about MS and the effects of hot and cold weather. I came across a man who uses the cold to heal people. Intrigued? They call him the Iceman, but he’s also known as Wim Hof. He developed the Hof Method, which mixes cold therapy, breathing and exercise to consciously control the immune system. I’ve tried parts of the method myself and have noticed a difference in how I feel. With the potential to help those struggling with MS (or any health problem), I think it’s something worth looking into. The idea is to detoxify the body, and strengthen your body and immune system. For more about the Iceman, check out the link. 

On hot summer days, my vision becomes blurry and my arms and legs feel impossibly heavy. The best way I can describe it is this: picture wearing rubber gloves, but they’re filled with water; as if your limbs are made of giant water balloons. I have a hard time with anything that requires dexterity, and my legs get weak and wobbly, making it look as though I’ve been pounding beers all day. The only way I’ve found relief is by trying to cool off. So, until Fall comes, you can find me taking cold showers, sporting my Nano-Ice Collar, or hiding in the local grocery store walk-in freezer. 

Links-

National MS Society – Tips for managing the heat

Nano-Ice cooling necklace

The Iceman Wim Hof

The Mike Herrera Hour, a punk rock talk radio podcast.

The Mike Herrera Hour

Mike Herrera and Kellen Prouse, a Multiple Sclerosis blogger, pose for a podcast photo.

I have been a huge fan of Mike Herrera since way back…1996 way back. Mike is the lead singer of MXPX and Tumbledown. He is a talented musician and producer that also runs Monkey Trench Studios. For MS Awareness month I was lucky enough to sit down and talk with Mike on his podcast, The Mike Herrera Hour. We chatted about MS, MMJ and all around bettering yourself with the internet.

It’s not everyday you get to chat with your teenage self’s punk rock hero; a big thanks to Mike for giving me this opportunity. Check it out!

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The Ink Master

October 23, 2013

I was scrolling through my twitter feed when I saw that Oliver Peck was in town hangin’ with his buddy Mike Herrera. I totally sent him a fan girl tweet about being in my hometown.

I was stoked when he invited me to join them at one of the rad local bars. My awesome wife said “What are you waiting for? Go meet Oliver Peck!”.

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It was easy to find him, being that he was surrounded by all the local tattoo artists. I thought I was a fan girl.

Finally got my photo.

selfie with Oliver Peck in the Manette Saloon Bremerton Washington

Just an average Wednesday night chillin with @OLIVER_PECKer

 

It was Open Mic Night, so he had to get up and sing some Tom Petty.

Jack Parker and Oliver Peck

Not a bad for a regular ass Wednesday in October.

 

 

Knowledge Is Power

It’s finally here!!

In March we flew down to LA to be a part of a really cool project called Knowledge Is Power. It’s a 9 part video series that’s meant to help people who are newly diagnosed with MS find some answers.

We had an awesome time shooting these videos and we made a ton of rad new friends. You can check out the post Trek To Cali to see photos from our trip.

A huge thanks to all the great people it took to make these videos.

Check out Wheels & Red in the first 9 videos

Learning to fly

I’m fighting a wicked battle of blogger’s block, so forgive me for slacking off recently. Can I claim procrastination as an MS symptom?! Life has been full to the brim; full of awesome things…and a few not so awesome things. The awesomest of all, Meg left her job at mywedding.com! It’s been a long time coming, but she can now focus on her photography full time. Since then this house has been so full of laughter and creativity. Just the way we like it.

On the other end of the awesome scale, there was a septic backup *and* my first root canal on the same day. Yeah, real fun. Those weren’t so bad as when the gravity of my first Tysabri infusion finally sank in. The infusion itself wasn’t that bad, but the allergic reaction I had made for a pretty stressful experience. Mixing my allergic reaction with the risk of getting an incurable brain infection made me reconsider whether this is something I truly want to do. And for now at least, it’s not. I have decided not to continue treatment. After digging into the research, I’m not satisfied with the numbers; so I’m not accepting the risk for big pharma. This means that for the first time since my diagnosis I will be off all disease modifying therapies for MS. Not to worry though, because I live a healthier life than ever before. Plus, I have all I need: the support of my best friend.

When I step back and look at the big picture, I love where I’m at. So many things that once started out shitty ended up leading to pretty awesome things. So for now we are letting go of the norm and learning to fly. Life is good.

County Fair 

With summer coming to an end what better way to celebrate than with the county fair. As of late my hands are not cooperating so we are going to have a photo adventure today.  Check out our day at the Kitsap County Fair.


  


  

  

  

I am working on a new way to keep you all updated on the adventures of Wheels & Red. Don’t forget to subscribe so you don’t miss the first video blog on This will probably get interesting…

 

-wheels

GENETIC PREDISPOSITION

“Some researchers theorize that MS develops because a person is born with a genetic predisposition to react to some environmental agent that, upon exposure, triggers an immune-mediated response.” – National MS Society

William (Bill) Kalbach Jones was my great grandfather and he had Multiple Sclerosis. He was a civilian working in the Puget Sound Navel Shipyard as an Aeronautics Allowance Specialist. After my grandmother passed away we found a folder of letters he had written. The letters were years of personal correspondence from Bill to his colleague Elwood. Elwood was a Captain in the United States Navy stationed on the East coast. The letters start in 1953 and continue through 1959. They wrote as often as they could although there are plenty of gaps.

Bill spent most of his time talking shop. He loved his job and he was really good at it. There was plenty of drama in the 1950’s. Scattered through the letters are paragraphs about his waining health and his chatty teenage daughter(my grandmother). It’s hard to believe I can read through his account of MS. His case was very progressive. He used a wheelchair and typed every letter with the index finger on his left hand. That is some serious hunting and pecking.

He tried every treatment that offered any hope of slowing the progression. Starting with the standard treatments then moved to experimental ones and finally ending with religion. He didn’t talk about MS all that often, he never wanted to complain. He was a tough S.O.B. that did what he could to live a happy life with his family.

It’s hard to describe what these letters mean to me. One day I hope to put together a book of these letters to share with others.

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But I am not going to rest in any such possibilities now in respect to my own effort to lick this health problem of mine. To slack off now would mean a measure of defeat in fighting my way. I guide my everyday action not by what I think I can do but what must be done. Just going up the stairs to bed every night is a tough bit of work, yet I do it. Sure it’s difficult , but if you do it because it must be done and forget how hard it is, it usually gets done. It is like working each day. I could develop a genuine aversion to it and get a medical retirement easily — but who would pay the grocery bill? I work every day not because i can force myself to overcome the obstacles  of ill health — what’s that anyway? — but because I must work so I can eat.

William K. Jones April 13th 1955
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photos from Meghann Prouse Indie Photographer’s  5 minute project.

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FUCK IT, BE FREE (NSFW)

If I cannot physically do what society deems “MANLY” does that make me less of a man?

It was Fathers Day and Solstice; Meg and I were getting out of the shower and the sun was pouring in through the skylight. I saw that creative spark in her eyes when she asked if she could take some photos of me. With her help I have come to love myself for who I am, so I didn’t even hesitate to say yes. Getting to see my body through Meg’s creative eye is very special to me.

I have struggled with body image for a long time but I think it’s time to finally let it go. Just because I can’t drink beer and lift heavy things does not make me less than. Empowerment projects do a wonderful job of helping people from all walks of life learn to love themselves; but I feel like there needs to be a bigger emphasis on helping disabled people learn to love the parts that are so often seen as “broken”. I don’t want people to look at these photos and see me; I want them to look at these photos and see them. To see that this body image struggle is the same,  no matter if you’re disabled, healthy, or anywhere in between. We are the same. And we have nothing to be ashamed of.

The entire set of photos includes nudity, so if you’re not into it please do not click through.

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Photos By Meghann Prouse Indie Photographer

Warning Images Contain nudity…of me.

SEE THE ENTIRE SET HERE

 

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@prouska disabled with Multiple sclerosis on dock PNW

Afternoon at Sandy Beach

When the tide is out at Illahee State Park you can head south down the beach and find a hidden gem called Sandy Beach. Sandy Like the name says it’s sandy, very sandy. Stuff like this being 5 minutes from our house is exactly why I love the PNW.

@prouska disabled with Multiple sclerosis on dock PNWThis was the spot to jump off the pier back in the day. I could’ve sworn it was a 40′ drop…

 

At 7 years old Tucker is all about climbing trees. This place has a bunch of rad fallen trees to climb.
Washington ferry passing illahee state parkPerfect spot to watch the Ferry chug by.

Wheels & Red sitting on beach

This was a perfect way to spend the evening. The wind was whipping the warm air off the water.

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The trip was awesome even though I had Tucker jump from one log to another and he slipped and got some barnacle bun on his shin. You don’t have to travel far to find adventure, it’s in your back yard.

-wheels