Since starting this project I have reached out to a lot of cool people. Some of the first were the awesome people at the National MS Society. The timing was perfect, they were planning on shooting a video to help people who are newly diagnosed with MS navigate the craziness.
A week after telling them my story they asked me and the family to fly down to Los Angeles and tell our story to the camera. It was a short trip but we had a ton of fun. Hopefully this isn’t the last project we do with the NMSS.
We arrived on a beautiful 82 degree day. We unloaded our bags at the hotel and headed out to Venice Beach.
We stopped at the Venice Beach Skatepark to watch the dudes shred and pick up chicks, both were great to watch.
Before we flew out we headed up to Santa Monica to check out the pier.
Well hello PNW it’s nice to see you again!
Big thanks to all the awesome people who made this trip happen. We can’t wait to see you all again soon.
It’s finally here! My podcast with GregR, the morning dude on 107.7 The End. The first attempt to record this was junked due to technical difficulties, but we gave it another go. I had a ton of fun chatting with GregR before we headed over to Emerald City Comicon.
Check it out would ya!
You may have picked up on this, but I have Multiple Sclerosis. If I were standing there without my cane you may never know. When I do have my cane people think “this dude probably hurt his leg skating or snowboarding!”. I wish that was the case.
MS is all about the lesions. A lot of people with MS only get a lesion or two and progress very slowly. I am not that lucky. I continue to get new lesions year after year. My first set of MRIs found 10+ lesions on the spinal cord and a few scattered through my brain. That was just the beginning.
I have a hard time when things feel like they are somewhat stable for a few months, yet in reality the lesions continue to progress. Currently my brain and spinal cord are active. These lesions effect things like cognition, spacial awareness, sensory nerves and muscle strength. It is tough to see the cognitive changes when you rely on the brain to tell you whats wrong.
The numbness is the worst on the left side, but the right is no picnic. It’s really is weird not being able to tell if your arm has made it into the shirt you are putting on.
I continue to take my injections to hopefully slow to progression but there is no way to know how well it is doing that, if at all. As I transition from Relapsing Remitting MS into Secondary Progressive MS, things slowly slip away. I wonder how much is left.
Nobody is guaranteed tomorrow. What are you waiting for?
What makes you happy?
What is your dream?
What are you waiting for?
– Optic Neuritis –
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.
Photos by Meghann Prouse Indie Photographer
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.
This is my life with MS.
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.
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.
Follow Liz through this journey at TheGirlWithThePurpleCane.com
Making friends like Liz is whats it’s all about. So many great things to come!
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.
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.
Original article here.
this is our life portrait
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!