MS and the little things

Recently the folks at MS Connection reached out to see if Meg and I were interested in an interview for a third party – we’re always down for sharing our thoughts, and usually do a handful of interviews every year. For this one, we were asked about how MS has impacted our lives outside the physical. It’s really important to acknowledge the non-physical symptoms — the physical symptoms are often so loud that we don’t really get to uncover anything beyond pain and useless legs. We push things like depression, social withdrawal and relationship issues to the back burner…we often think of them as the ‘little’ things, but really, they’re just as big as the physical stuff.

This interview definitely prompted some thoughts and experiences I haven’t been open about yet, so I thought I’d share. Check it out below!

  • I know MS symptoms vary greatly — what are your primary symptoms?

Kellen: My biggest symptom is losing the use of my legs, although pain and fatigue aren’t far behind. I can’t remember the last time I had a pain-free day. The fatigue makes it hard to do even regular daily tasks (like showering, getting dressed, etc), so I have to space those out with any appointments or outings. I’m also mostly blind in my left eye due to Optic Neuritis, which severely messes with my depth of field, and of course my balance.

Like many people with MS, the bowel and bladder problems are always on my mind too…because if they aren’t on my mind, they may end up in my pants. I’m numb from mid-torso down to my toes, so I can’t tell when I need to go to the bathroom until it’s just about too late. The numbness also makes walking really difficult, because of how much it affects my balance.

My memory is fading and my speech is slipping, although Meg notices that much more than I do these days. While I’m in a wheelchair most of the time now, the times I am up on my feet, I look like I’m 6 drinks in and then some. It’s tough to describe all the big symptoms that MS can throw my way — it’s so unpredictable. Some days I have spasms, other days tremors, and when I’m really lucky, both.

  • Do you use any special equipment?

Kellen: I use an ultralight wheelchair about 75% of the time; when I do get out of it, I use my cane (and sometimes walls) to keep me upright. I also need to keep a portable urinal with me when I leave the house.

  • Outside of the physical, what are some ways MS has impacted your life?

Kellen: I’d say my social life has taken a huge blow. The more my MS progresses, the harder it is to do…much of anything. My fatigue level really controls what I’m able to do, or not, so I have to be really meticulous about my schedule — I usually can’t have doctor’s appointments and a social life in the same week without consequences. There’s also the mental/emotional side of things. It’s hard to go from being a pretty social person to feeling like an outcast.

Meghann: I’d say depression has been something we’ve had to learn to identify with Kellen since his MS diagnosis. It’s hard to know when it’s just fatigue, or when he’s feeling discouraged and unmotivated; but we’ve gotten a little better at recognizing that, and we try to make sure he’s still finding the joy in life.

  • How has MS impacted your relationship?

Kellen: Getting diagnosed was a turning point for our relationship. We were in our mid 20s, married 3 years, and had a 2 year old when I was diagnosed. It was hard at first — what does this even mean, right? Because of my MS, we actually grew closer and our relationship got stronger. Something like this makes you really look at what’s important to you. It hasn’t been an easy ride, but if MS allows me to spend more time with my family, I’ll take it.

Meghann: As a young couple and new parents, it definitely made us grow up a little faster than we probably otherwise would have. There’s a certain level of reality-check that his MS has made us face; about our roles in our household, about our dreams for the future, and anything and everything else. But like Kellen said, it’s also really made us figure out what’s important to us; so all-in-all, it’s been one of those silver linings that made us figure out how to be a killer team.

  • What do you wish people without MS knew?

Kellen: Make more time and space for the people in your life who have MS (or any other disability or chronic illness). Just accomplishing daily tasks is a full time job when you have a progressive disease, so it really helps to have friends and family who will make a little more effort to hang out. Plus, most houses aren’t super accessible, so it’s sometimes easier for me to stay home and have friends come to me.

Meghann: Accessibility. Although we’ve come a long way in terms of accessibility in public spaces, we still have so far to go. Kellen and I didn’t realize how many things look accessible but really aren’t that easy to access, until his MS progressed to the point of requiring a wheelchair. So far we’ve learned the hard way that unmaintained sidewalks are just as inaccessible as no sidewalk at all; and that businesses that require bathroom passes can be the difference between making it to the bathroom in time…or not. We didn’t really get it until his MS forced us to face that reality.

 

National Caregiver Month

With November being National Caregiver Month, I wanted to say thank you to everyone out there helping people like me. I especially want to thank my wife Meg for the unwavering support. I can’t imagine this journey without you!

While all caregivers may do similar tasks, what they mean to the people they care for is very personal. So I wanted to share not only a glimpse of what caregivers do, but what mine means to me. 

Having someone to help you with things (and admitting you need the help), is tough at first. In the beginning, I felt totally helpless. I’ve learned that it’s actually quite the opposite, though. I’ve had help with everything from driving, buttoning my shirt and pants, to even getting helped into the bathroom. Helping with my meds meant giving me an intramuscular injection that would wipe me out for the next 36 hours. I am not sure what was harder, doing it myself or watching her do it. Either way she stuck me like a champ! At least until the blood squirting episode…

At first there was a lot of resentment about all the things I couldn’t do for myself. I have regained some things and lost others over the years, but help is there. With time embarrassment has turned in to humbleness. I still struggle with asking for help, but having a person who puts up with my bullshit and is still ride or die, means the world. I can no longer measure my worth off of the activities I can or cannot do. Because of this my compassion for others has grown immensely. 

Meg and I have gone through a lot together, and I’m so thankful that this crazy MS adventure has only made us stronger. 

Wheels and Red National Caregiver Month multiple sclerosis

Thanks to all who support others through our toughest times.

 

P.S. My caregiver is also the best Copy Editor.

 

Adventure: Orcas Isalnd

Meg was lucky enough to score another assisting gig up in the San Juan Islands, and this time there was enough time and space for me and Tuck to tag along (thanks to Catherine and Michael Abegg for giving us the room to stay in!). The weekend was absolutely amazing, even though I managed to sprain my foot just mere hours before our ferry home. Hey, at least it was after all the fun stuff, right?

Wheels and Red getting on Anacortes ferry to san juans. Multiple Sclerosis

Anacortes WA, Ferry Terminal

Wheels and red driving around orcas Island WA

driving to rosario resort on orcas island WA

The roads though the island felt so magical.

Wheels and red disabled adventure at rosario resort Orcas island WA

The first night at the resort did not disappoint. Meg had to work the next day so we spent the evening checking out Rosario.

Disabled adventurers on orcas island wheels and red

 

Brown Bear Baking making delicious treats for wheels and red.

The line out the door of Brown Bear Baking says it all. They make straight magic back there.

Wheels and red at the eastsound farmers market

Lunch wasn’t far behind. Wood fired pizza, no contest.

Rosario resort marina Orcas Island WA

While Meg worked, Tucker and I spent the day checking out the resort. This was the spot to watch the sea-planes come in.

Artsy peep hole shot? Why not.

On Sunday we had the entire day to explore the island. We started with Moran State Park.

I love that these guys are down for whatever. Great co-pilots!

The old fire watch tower at the top of Mount Constitution. The best part of it is you can drive all the way to the top. A big plus for the mobility impaired like myself.

Bullet hole from the historic San Juan Island gang wars. Kidding.

wheels and red at Doe bay Orcas Island washington

When you’re in the San Juan Islands you can feel how special of a place it is. I know we are all excited to get back up there for even more adventuring. But for now, I’ll admit I missed the comfort of my own bed.

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

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!

cover170x170

itunes_logo

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. 

IMG_5847

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!”.

IMG_1885

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.