Progressive MS – A Family Journey

I was diagnosed with Multiple Sclerosis at 25 years old. It was hard enough coming to terms with having a lifelong chronic illness at such a young age, let alone think about progression. But I was ready to fight; and with my wife and son by my side, I never missed a doctor’s appointment. 

I progressed quickly; it started with weak, numb legs. Not long after, it took my left eye; and now I spend most of my days in my wheelchair. It’s hard to prepare for progression. How do you know what it will look like? One of the most interesting features of this disease is that it affects everyone differently. There is no standard progression. It’s only after years of failed treatments and MRIs that confirm it’s progressive. 

Even though I dreaded the thought of having to use a wheelchair in the beginning, I now enjoy the freedom it gives me to still explore the Pacific Northwest (or just the grocery store) with my family. I wish I would’ve “stepped up” and used one sooner, although it’s been eye opening to experience the shortcomings of accessibility standards.

Progressive MS isn’t new to my family; I grew up hearing stories from my grandmother about her father, who had progressive MS in the 1950s. Like me, he struggled to find anything that could slow the effects of MS. Genetics, am I right? He did leave some letters that have some treasures though.

“One very tangible result of the trial which has attempted to get the better of me has been a bit of ‘soul searching’ that, in my opinion, has paid off in rather rich dividends – dividends of increased friendships, greater tolerance of people, and an almost total abstinence of self-pity.”

I get those words on some real levels. At the end of the day, I am still going to have progressive MS, so I want to focus on having as much fun as possible. Whether it’s adventuring outside, playing video games with my son, snuggling our dogs, or watching funny movies with my wife, life always has something good for me. And on the days my MS gets a little more out of hand, I’ll still be out here vibin’ and making friends, even if I have to do it on wheels. 

My great grandfather’s sentiments still inspire me to keep the conversation going, we’ve come so far – we can’t stop now! Especially for the future generation. My grandmother watched both her father and her grandson battle MS, and I hope my son doesn’t have to do the same.

Title Photo by Kennedy Crissinger www.kennedycrissinger.com

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.

 

Earning my wheels — I’m back!

After not writing in so long, it’s hard to know where to start. I’ve felt like my voice is gone. I have had so much to say, but that drive to put it out there has been hard to revive. Part of it is coming off of opiates and feeling like I don’t recognize who I am, or was; the other part (the part I’d rather avoid) is depression, which is super common with MS. It’s not a sadness, just a lack of wanting to, and it helps me justify everything from my writer’s block to my lack of a social life.

Kicking it in my rental chair

Slowly but surely, I’ve been discovering who I am again – thanks in part to my friends and family who always reach out, even when I don’t ask them to. I can’t tell you how many times Meg and I get into deep conversations about my progression, and we end with her telling me, “you need to be writing about this!”. For the record, she’s right. On top of that, so many people have sent me messages asking why I’m not writing, because they miss reading my posts. Do I really need more confirmation?

I won’t lie; I’m struggling with the way my MS is progressing. Losing my legs is hard to talk about. And maybe the more I talk about it the more real (and scary) it gets. I have shared a bit about my transition into a wheelchair, but I haven’t really put it all out there until now…so I’ve decided to give it a go. It really is complicated – like most things in life, it’s not black and white. I am both super pumped to get freedom, but still struggling with accepting the loss of my stems. I have watched as my legs have lost muscle, and I know it will continue, especially with a mobile chair. The hard part is knowing it’s a transition that only goes one way. But the redeeming factor is that I’ll get back some of the freedom that I haven’t had for awhile now. It may sound silly to the average person, but just being able to make it through the grocery store again would be huge.

I’ve gotten a lot of different responses when I tell people about the impending chair, so I thought I would clear it up: it is a good thing. I can leave the house for more than an hour! Meg and I have started planning a party for this earning my wheels/losing my legs transition to really set the tone. We’ve known this time was coming for years, and honestly I feel lucky that I made it this far! Let’s send these legs off like the ballers we are and throw a party, right?

I wanted to take a few words to say thank you to my amazing wife Meg. She has always had unwavering support for me; emotionally and physically…I am always falling over. As easy as it can be to withdraw and not talk about, diseases like MS overflow into the lives of the people we care about. I think that’s partially why we tend to hold back on admitting how bad things may really be. We see the toll it takes on our friends and family, and we don’t want to add any more; but those people would rather see us enjoying life than withdrawing from society. I need to remember that asking people to come see me is okay.

So, since I haven’t been able to get out as often, I’m just going to put it out there: I want to see you. My scheddy is pretty flexible so if you want to come kick it, the door is open.

Parking with Disabilites

 I have written about this before but I think it’s a good time for a refresher. All too often I see things from the disabled community about how a local “hero” has left a note shunning them for not being disabled and parking in a disabled spot; or, they even go a step further and resort to verbal harassment (like one of my experiences here). Let’s get this out of the way: I know the sign has a wheelchair on it but that, in no way, represents the entire disabled community. Many disabilities, mine included, are not visible (minus the apparent drunken stupor that MS has gifted me). So I thought I would share what actually qualifies a person for a disabled parking pass in Washington state. You might be surprised.

Who is eligible?

Washington State Disabled Parking qualifications:
  • Can’t walk 200 ft without stopping
  • Walking is limited by arthritis, neurological or orthopedic condition
  • Can’t walk without the use of or assistance from a brace, cane, another person, prosthetic device, wheelchair, or other assistive device
  • You use portable oxygen
  • You’re restricted by lung disease
  • You’re impaired by cardiovascular disease or cardiac condition
  • You have a disability resulting from an acute sensitivity to automobile emissions which limits or impairs your ability to walk
  • You’re legally blind and have limited mobility
  • You have acute sensitivity to light associated with a form of porphyria that would significantly benefit from a decrease in exposure to light

(source)

Disabilities manifest in so many different ways that it’s nearly impossible to determine whether someone is or isn’t disabled by just looking at them. You can’t know a person’s medical or history or physical abilities by simply looking at them; it doesn’t matter how young or old someone looks, what they dress like, or whether they can walk without assistive devices. Rest assured, a qualified doctor is required to sign off on the application for a disabled placard or license plate, and the placard or license plate themselves are issued by the Department of Licensing.

Still think they are faking it?

So what should you do if you suspect a fraudulent disabled parker? Report it to the local police. Yes, call 911 to report them. Please do not yell, comment, leave nasty notes for us, or otherwise harass us. We are required to carry documentation for our pass, but we only have to furnish it to police.

As frustrating as it can be not having access to a disabled parking spot, it is much worse to be judged and side-eyed for using it. I guess what i’m getting at is: please don’t harass others in the name of sticking up for me. In my experience, you end up harming more than you’re helping.

If you do want to do something constructive for the community, shoot us a smile every once in awhile. You might be surprised…we don’t get them often.

 

Congrats on Your Struggle

This week Ted Cruz recently congratulated a woman on her struggle with Multiple Sclerosis. My first reaction was “That’s a weird choice of words…”,  and the more I thought about it the more I started to think the congrats wasn’t too far off. We should get this out of the way now, I don’t agree with Ted Cruz on many things. Especially cutting programs like Medicare and Medicaid but let’s save that for another post.

Was Ted Cruz right to congratulate that woman on her struggle with MS? Maybe…not like a robot alien who just learned English though.

Ted Cruz Congratulates woman with MS

I often tell people my MS has been an amazing experience. The perspective gained is worth everything I have lost. My struggle with MS has been overwhelmingly positive despite the hardships. Everything out of Ted’s mouth is awkward, maybe he has been reading a lot about Nietzsche and the Philosophy of the struggle.

“To those human beings who are of any concern to me I wish suffering, desolation,nietzsche sickness, ill-treatment, indignities—I wish that they should not remain unfamiliar with profound self-contempt, the torture of self-mistrust, the wretchedness of the vanquished: I have no pity for them, because I wish them the only thing that can prove today whether one is worth anything or not—that one endures.”

Or simply

“That which does not kill us, makes us stronger”

― Friedrich Nietzsche

I guess what I’m trying to get at is, I would rather be congratulated for my struggle than told “I’m so sorry…”. You didn’t do anything to me, why are you sorry? The funny part is, I get way more people telling me sorry. It seems to be much more of a societal norm. Next time you want to apologize for someone’s disease or disability, just don’t. For that matter don’t congratulate them either. We don’t need value judgments on our struggles, we just need understanding.

It’s more telling that the biggest news about this gaffe wasn’t his thoughts on Medicare and Medicaid but how he addressed her struggle. There are 14 million people on disability under the age of 65, we want to know how your going to make medicare better?

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.