For a lot of people Optic Neuritis is their intro to MS. Eye pain, loss of color and blurry vision. What happens is the Optic Nerve gets inflamed, and the inflammation prevents the nerves from transmitting the visual information to the brain. The closest thing I have found to describe it is that feeling after you look directly into a bright light or camera flash.
The image of the deer is pretty close to what my left eye does. It’s something that’s always there, although the severity goes up and down. I have almost gotten used to it at this point. I do however clean my glasses a ton thinking my lens is smudged. Sometimes I end up focusing on the “smudge” so intently, that I suddenly realize people think I’m staring at them. Awwwkward…
Are you having eye issues? The good news is, if you have some symptoms of ON you can get it checked out at your regular ol’ eye doctor. No need for a Neurologist, Specialist or Ocular Shaman.
This could be classified as a symptom of MS that you can actually see. Well, at least, the person who has it can see it. Did I just write a MS joke? It needs some work, but it’s a start.
There are many different DMTs (Disease Modifying Therapies) for Multiple Sclerosis. I am currently on one that I inject 3 times a week, much better than the daily version I was previously on. The injection is subcutaneous, meaning I inject it just under the skin, similar to a diabetic injecting insulin. Not bad when you compare it to the first meds I was on that had to be injected weekly into the muscle (Intramuscular).
I inject myself in the hopes that it will slow the progression of my MS. Even though I take my medication I still gain new lesions. It’s tough to say how many more I would get without it.
My talented wife has asked to document my journey with MS. Together we will be sharing our ups and downs along the way. It was only fitting to start with my injections. So I sat on the couch; sweat pants, belly rolls and all.
If seeing needles are not your thing, feel free to close this window.
We don’t celebrate much of anything in a traditional fashion. Valentines Day is no different. I guess we’re cool like that?
It’s the day before Valentines Day and I didn’t buy my wife a thing, no card, no chocolate and no flowers. It’s all about what you do the rest of the 364 days.
To My Best Friend:
I just want to say I Love You to my best friend. You have always been there for me. When things got hard you stepped up, when they got harder, you kicked its ass. No matter what MS has thrown at us you have been my rock.
I knew early on that I loved you. How early? In the first week of knowing you I looked over at you and said “You know how I know I love you?” . As embarrassing as it was, I knew it was true. We jump into everything head first together. When you know, you know.
I couldn’t wait to marry you. I had to make sure you couldn’t back out of the wedding, so, I knocked you up. Still one of the best decisions I have ever made. I always knew everything would be ok.
Thank you for helping me raise the raddest, smartest, weirdo out of the box kid we could.
How crazy is it the 8 years have gone by? I am excited for 8 more, but only 8 more after that I’m probably good. (I also I love that you get my humor)
Meet Liz Jackson. She is an amazing person who has a neurological disability similar to MS. Liz lives in NYC and is breaking down the stigma of using assistive devices. She rocks a cane and rides a bike. She is The Girl with the Purple Cane.
I found her when I was learning about this rad company named Top & Derby who make kick ass canes. She was on the front page sitting on a bench with her T&D cane.
Not long after seeing her Forrest Gump inspired photo I decided to reach out to Liz and say “Lets be friends”. I put it all out there, and her reply mirrored my excitement. Since then we have talked non-stop.
Photo: Hanna Agar
Photo: Hanna Agar
I have learned so much about her already. One thing that was clear from the very first email was her passion. Liz puts her heart into everything she does. She started a grassroots movement to breakdown the stigma of assistive devices.
#YesJCrewCane is her way of doing just that. Liz is working very hard to get mainstream retailers like J. Crew to sell canes. They already sell some assistive devices but not others. Did you know that glasses are an assistive device? Let’s make canes cool too.
Please support the movement of inclusion. Go to Change.org and sign the #YesJCrewCane petition, it only takes a moment.
A few years ago the awesome people over at Shift.ms put together a couple of really amazing short films about life with MS. These are some of my favorite videos related to the struggles of MS. It can be hard to explain MS, how it feels or even the fears that come with not knowing what’s next. Shift.ms really nailed it. The production is amazing; from the cinematography to the sound design and music.
‘Circle of Truth’, directed by David Allain and written by Matthew Edmonds, explores some of the challenges that people with MS face when deciding whether or not to disclose their diagnosis to their colleagues.
‘Gallop’ was created to help better convey the impact of a diagnosis with MS, the most common neurological condition affecting young adults. It uses narrative to explore the life-changing event of diagnosis through a compelling love story rather than solely focusing on the disease.
Port Townsend is an awesome little hippie town out on the Olympic Peninsula. We usually go up there to hit the food co-op and at least one beach. Gotta hit a beach, even for five minutes…that Puget Sound sea air is addicting. The shops downtown are a great stop as well. Something about the place draws you in.
We started the trip walking around downtown; the place is usually hopping on Saturday but it seemed extra buzzy this time. We soon learned that the annual Strange BrewFest was happening. We headed to a few shops that we hit on the regular. One of them is Phoenix Rising — one of the largest metaphysical bookstores and shops in the country. You also can’t go wrong hitting the record store or one of the cool used book stores.
We shopped for a little bit, but the beach was calling, as it often does. PT has amazing sandy beaches. This trip we decided to go to Fort Worden State Park, which is full of army bunkers and has a cool old lighthouse. We don’t normally go all the way down to the lighthouse so this time we thought we would finally check it out. The lighthouse is just over 100 years old. You can walk all the around the lighthouse which gives you great views of the Puget Sound and Whidbey Island. It was a beautiful day to get out and adventure. We had to take advantage of a 60 degree day in January.
Before we left we grabbed some groceries at the PT Food Co-op. I have to say that this co-op is the best one we have found; we head up to Port Townsend a couple times a month just to get awesome fresh, local and sustainable food. Even if you just want to grab lunch, the deli is top notch. After adventuring for about 4 hours it was time to head home. With so many rad people to chat with and cool things to do, leaving Port Townsend in a bad mood is nearly impossible.
Thanks to my amazing lady for taking this photo. Don’t take photos while driving! Downtown Port Townsend The place with the gems and crystals in Phoenix Rising. This store encompasses what PT is all about. This is Getables. It’s full of awesome gifts and treasures. When we are looking for a thoughtful gift this is a great spot to check out. It doesn’t take long for one of us to need a break or the restroom. In this case it was both. With MS resting is a necessity. PT has a perfect rest area in the public restrooms. 2 birds , 1 stone. By this point we were all ready to hit the beach. Off to Fort Worden.
Lighthouse on the beach at Fort Worden
Here is a special little gem I wrote after getting harassed by a community watchdog while legitimately parking in a handicap spot. In her defense it was for my own good.
LETTER TO THE EDITOR | A refresher course in manners
4:12 PM, Nov 29, 2012
Kellen Prouse, Bremerton
A refresher course in manners
“You don’t look very handicapped to me!” she yelled in a condescending tone. Her mind was made up before I even got out of the car. As soon as she saw my cane, the older lady continued with “Oh good, I’m glad that you are,” and without remorse explained that she does this all the time … and it’s for my own good.
Looking disabled has nothing to do with being disabled. I’m 27 and have severe Multiple Sclerosis. I’ve had my handicap-parking permit for 2 years. I have tattoos and piercings, but I’m also a loving father and husband and I support my community. Multiple Sclerosis has left me blind and paralyzed at times. Some days are better than others; on the really good days I might be able to go without my cane. I am constantly fighting double vision and the fatigue and weakness are always there.
I’m not old, my appearance isn’t conventional, and without my cane you might not know I’m disabled. It’s not easy to come to terms with my disease, and being judged and harassed by others makes it all the more painful. My point is this: you don’t know the struggles others are going through based on their looks alone. Be kind and think before you speak, or you may just do more harm than good.
Have you ever wondered what the requirements are for a disabled parking permit? You might be surprised at how many you can’t physically see. Check out the Washington State DOL for the entire list, if you’re curious.
Getting up in the morning without power seems like it wouldn’t be such a big deal…until you realize your electric kettle is useless. So what exactly is one to do in this situation? Bust out a sauce pan full of water, 3 slices of bread and fire up the propane grill, of course. I don’t know why we haven’t been doing this every morning. (Disclaimer: if you decide to do this please remember to leave the grill outside). How did it turn out? The bread was really good. The water……eh. It was a tad off, but fulfilled the morning ritual.
After the power being out for 10 hours we had to start thinking about the fridge. The fridge is not only home of the food we eat, but it’s also home to my MS medication. A single box of syringes costs over $4k, and Medicare doesn’t jump to replace them. Time to pull out the coolers and ice the important things. So off we went to get ice from the corner store and more importantly, a real cup of tea from Scout Cafe and Honor Bar. We highly recommend this place.
We got home just in time to watch the tree service dudes remove the tree that had been suspended by the power lines. With the last little bit of daylight we prepped the house for the impending darkness. We collected all the candles and flashlights and we rearranged the living room so we could bundle up and sleep around the fire. Time to think about dinner. This was an easy (but not so healthy) choice…Pizza!
With darkness upon us, our bellies full, and our phones charged from driving around in the car, we settled in. What is there to do when the power is out? Play card games! One of our very favorites is Uno. It can get pretty heated in the Prouse House when the Uno cards are out. After a few games we switched to a goofy card game called “Would You Rather…?”. This game is great. Example: “Would you rather, eat through your belly button or poop through it?”
After games we all passed out huddled around the fire. The power came on sometime after midnight but that wasn’t going to stop this living room campout. Sometimes it’s the little things that make the adventure.
What awesome things do you like to do when the power is out?
I am so stoked to get Wheels & Red up and going. It’s where I am going to write about my adventures in life with MS. It will be our Adventure Log. What can you expect from this? Everything. We sometimes forget that we have this really cool thing in common: we are all human. We all share this amazing planet with one another.
I didn’t start Wheels & Red just to share our story. It’s also to help spread awareness and education about MS. I love talking to people, all people. Seems like everyone I talk to knows someone battling MS. The older I get the more I realize that making money isn’t everything. Life is about doing the things that make you happy, because they make you happy. I’m always inspired to see people doing what they love. That’s why I will be sharing conversations with other rad people we meet along the way. I want you to know that life can be anything you want it to be.
If our journey gives you the warm fuzzies and you feel so obliged to throw a little monetary support our way, you can do that here: Creations. We’re also happy to receive your good vibes, high fives and friendly comments or messages.
Thank you all for your love and support. My family and friends rock! I’m excited to share Wheels & Red with you!