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

Momentum Magazine

Hey, look, it’s Wheels & Red on the cover of Momentum Magazine! This issue focuses on disability and desire, which is a cringeworthy yet very important subject for so many people.

Meg and I have always been very honest about our relationship and share our struggles openly. We understand as much as anyone that it’s really easy for intimacy to dwindle as married life goes on; kids, jobs, stress, and chronic illness have a tendency to push it even further to the back burner. But when Momentum approached me about doing an interview for the article they were writing, I paused and thought to myself, “Should I really put this out there?” And that pause is exactly why I decided to go through with sharing some of the most intimate details of our relationship. 

Did you know that a whopping 75% of people diagnosed with MS have some sort of sexual dysfunction? That’s too big of a topic to be ignored, or paused, or glazed over to keep people from cringing. Struggling in the bedroom is no walk in the park for a relationship; it can cause a dangerous cycle of stress, frustration and disappointment when the subject is approached without love or compassion. 

Since the magazine has been published, a lot of my ultra supportive friends and family have called me brave for putting it out there; but really, I just want to break down that stigma of sexual dysfunction and the harm it can cause. For anyone struggling with this, creativity is key. Open hearts, open minds and understanding for each other are also very important. 

Mostly, just remember: this doesn’t automatically make you unworthy, this doesn’t make you less than, this doesn’t make you undesirable. This is just another speed bump that you might need to slow down and take your time with. 

Check out the article!

Wheels and red on the cover of Momentum Magazine, PNW

man with top and derby cane in the PNW

When you gotta go

Where’s the restroom?

There are so many symptoms with MS, that a bunch of them often get glanced over. The one that has been the most active for me lately is incontinence. The opposite of constipation, incontinence is where your bladder is going to empty NOW; with as little notice as possible. I never thought that at 31, I would be like my grandmother and know where every bathroom in the county is. It can be super frustrating when out of nowhere, you have to go. Basically, my bladder’s alarm doesn’t go off early enough.

Bowel and bladder problems are no stranger to the MS community. In my many years of talking with all sorts of folks diagnosed with MS, so many have shared my struggle. There is a special bond created when openly telling someone that you — a grown-ass, bill paying adult — has pissed your pants. Most likely in public. And they understand…because they have, too.  

Needless to say, hitting the road can be tricky; but we love to adventure so we make it work. My solution? An empty gallon jug in the car at all times. When it’s time to go, it’s time to go. There is no planning or waiting for the next gas station. 

To those who experience this: you are not alone. I, myself have pissed my pants walking down the sidewalk in Seattle; on the way to a doctors appointment, ironically. As embarrassing as that was (pee smells, folks), it almost feels worse when it happens at home. Ever had to drop a log in a dark gravel parking lot on Halloween? Yeah, me neither…*ahem*. I can guarantee these won’t be my only bathroom fail stories, and when I tell them I wear them like a badge of honor. The plus side is, I can go just about anywhere. 

I bet there’s a long list of medications that help with this sort of thing, but at what trade off? I would rather just work with what I’ve got…unless they produce something with side effects that make everything taste like pizza. Incontinence issues are just a small piece of the MS puzzle, but when you add them together it can be daunting. These are just a few on the so-called “invisible symptoms”. They just happen to be invisible because they are embarrassing as hell. 

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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.

 

 

Beach with the pups

The pups and I headed down to our neighborhood beach front the other day and had some fun playing fetch. Mollie is all about that water…as long as it ain’t in a bathtub.border collie and Boston Terrier sitting on PNW beach

When i’m at the beach I can’t help but look around for some treasure. All I found was a blue hardhat and a non working flashlight. Not too shabby.

They have been updating and replacing the docks at the Brownsville Marina for the last few months so I’m guessing the hardhat and light are from there. Not a typical beach find but hey i’ll take it!

Them views.

I spotted this little guy when I was packing up to leave. I did have to poke it…for science. It was indeed dead. All in all a pretty sweet trip to the beach.

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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