-
What’s one thing you wish people truly got about living with SMA?
What’s something people never understand about your disease, but you wish they did?
So often, people see only the surface of what life with SMA looks like… the wheelchair, the equipment, the care routines, etc. But they don’t always grasp the true realities we face every day. Whether it’s about fatigue, independence, emotional challenges, accessibility, or something totally different, I’d love to hear your perspective.
What’s one thing you wish people truly got about living with SMA?
-
11 Replies
-
Maybe it’s just because I’m starting my winter hibernation, but I wish more people understood how lonely and isolating living with SMA can feel sometimes. There are so many physical and mental challenges we have to face every day, and sometimes, it can feel like we’re navigating them alone.
-
I can relate. I live in the midwest and I hibernate from mid-Octoberish till Mayish depending on the weather. Last time I was out in winter I fell and could not get up. When I finally got up my hands were messed up from the cold, they blistered all over and I could not feel a few finger tips for a bit till they healed. I did not have permanent damage, but my fingers are still cold sensitive to this day. I also don’t go out in the rain, so that even limits good weather days that I can actually go outside. When I tell people I don’t go outside in the winter when I turn down Thanksgiving and Christmas invites, then people who don’t understand can be rude about it thinking it is a personal choice. They see winter as a mild inconvience and I see winter as huge health hazard.
I also feel like most of the world is not really accessible for people with mobility issues and what parts are accessible are what people without disabilities ideas of what accessible should be. Like they do not actually ask people with disabilities for input on things that would actually be useful. People see handicap spots and assume that is all someone needs and someone who parks there is lucky. All it takes is one elavator out of order or a curb to make places that should be accessible not. For example people assume that those with disabilites can just live in apartments that have elevator, but I always point out what if the power goes out or the elevator breaks? How are people supposed to get in and out of their place then? When I was in college I lived on the sixth floor and we had three elevators. All broke on the day everyone was leaving for Christmas break. Luckily, I was stronger back then and walked without assistance, but it was still very, very tiring for me to bring a suitcase down six flights of stairs and took lots of breaks with hoping my legs would not give out.
I think most people find hospitals and doctors offices as being accessible and I find most aren’t. I find that the elevators are normally crowed and it only takes one bump for me to fall. Hospitals are a lot of walking because of their size with horrible parking. If I have my partner push me in a wheelchair, then I get dirty looks if anyone sees me stand, which is a struggle to get out of. People assume because I can walk short distances with crutches that I can go the same distance as someone who does not have disabilities. Seats are always way too low for me to sit in and that goes for resturants too. I never know if I will be able to get back up if I sit in an unknown seat and booths are a 100% no. Honestly, I would just rather stay at home where I am comfortable rather than deal with the hassle of going out. I find it less stressful that way.
-
I totally hear you on this. Accessibility is so much more than ramps and curb cuts, and even then, they’re not always properly designed to meet our needs. I use a power wheelchair, so I don’t have to worry about long distances. However, at the hospital this week, two out of the three elevators in one of the buildings were out of order. One elevator has been out of commission for months. The other recently broke down in the past month. It was absurd. You have to wait 5-10 minutes for the elevator because everyone is using it. All I can think of is what happens when the last one breaks down. The hospital doesn’t seem to care. And it’s the HOSPITAL!
-
Also, do you have any fun hobbies to keep you busy in the wintertime? I’m always looking for things to do to get me out of my boredom. However, boredom definitely occurs more frequently at this time of year. 😩
-
-
Such a good question, Alyssa. For me, it’s larger than living with SMA; it’s living with a disability in general. What I mean is that I think there is a tendency to lump anyone with a disability into one group of “they”. Non-disabled people often don’t know, think about, or would ever consider the differences between wheelchair users living with SMA or another NMD, being a paraplegic or a quadriplegic, as well as various levels of mobility issues. An amputee has different concerns than someone ambulatory, but getting progressively weaker.
As Cait mentions, there are many challenges with this. I’m a type 3, 62 years old, now a power wheelchair user, but was ambulatory until 2015. I fought the transition to a wheelchair for as hard and as long as I could, often with results that were detrimental to my overall well-being. The last straw in 2015 was when I fell and shattered my left tibia and tibia plateau. My neuro and ortho both told me future falls could be more severe, so I finally relented and started using a chair fulltime.
However, while able to walk, some of what Cait mentions resonates so well with me. I placed limits on what I would do and where I would go. I could get somewhere, assess the parking or accessibility and simple say, “Nope, can’t deal with that today.” This could have been a steep sidewalk, a gravel pathway, or just about anything that increased the chances of a fall. It’s almost as if I was withdrawing from participating in things, even things I desperately wanted to do. I would go to doctors’ offices and stand in a corner because I had progressed to the point where I couldn’t get out of a chair. Same with some meetings at work. The transition to a chair was difficult because I felt like I had lost the war after so contesting so many smaller battles, some wins and some losses. The one thing I have noticed is my willingness to do more, even though a chair in some tight public spaces can be challenging. Not having to worry about falling or getting out of a chair is a huge mental relief.
All that said, I think there are many compassionate or empathetic people in the world. But our culture seems to be shifting a little in a direction where we focus a little too much on the differences instead of the similarities. Being placed in a category of “other” can be an opportunity to educate, but it can also be exhausting. I try to get out more, but winter presents difficulties from having to wear far too many and heavier clothes which only add to the mobility issues we have to a 1/4″ or possibly even a thinner coating of snow which is a no go.
So, I guess after all of this, I’d like people to know that we are human and thus social animals, with the same basic hierarchy of needs as others as outlined by Maslow. But we have a lot more complications to achieve some of them.
-
Thank you for sharing a bit of your experience, Mike. As a lifelong wheelchair user, I have not experienced some of the struggles you and Cait shared here. That said, I can resonate with not wanting to accept disease progression. I think the entire SMA community can.
You also brought up a great point about how society tends to lump us together. I see this most often when people are trying to find commonality with me and say things like, “Oh, I had to use a wheelchair when I broke my leg,” or “My cousin has [insert random disease here].” Of course, I understand these people mean well. They want to show that they care and that we have a connection to each other. But in my head, I’m like, that’s not the same at all. We all have different life experiences and needs that have to be met. I think that’s why accessibility has always been a work in progress.
-
-
-
Sometimes its worse than what it looks like on the outside so if we cant do things its not pretending its for reals..the strugle is real
-
I understand this. Sometimes I feel like friends and family think I don’t want to be involved, but the reality is that my body doesn’t have the energy to attend certain events and whatnot. It can be very frustrating. You’re not alone in this.
-
-
Having SMA for me is like having the crappiest full time job in which you don’t get paid , people don’t respect you, are in constant fear of life threatening injury, work 24-7…and you can’t quit. Your co-workers are not always reliable and the machinery needed to function is constantly out of date, broken or entirely absent. Oh, and everyone in the world thinks they are your boss and your being given an easy ride because they think they could do better .
-
The fatigue is real. People in the SMA community are really good at glossing over limitations. Even some doctors have had to reset their expectations with me.
Another thing is privacy. I’m 56 and diagnosed with type 2. In the last 10 years, I’ve had to admit there are things I can’t do anymore, that’s been a sucker punch to my ego. I used to be able to feed myself and apply my own make up. Little things that no one thinks about like wiping your own ass can be demoralizing.
And it doesn’t end. It’s progressive, it doesn’t get better. Usually I manage that fine, but there are days when I hit unfortunate milestones that make me renegotiate contracts with my body. Those are the days that I grieve for what is lost to me. Lately I’ve also thanked my body for everything it has done, can do, and will do.
We’ve mentioned here the huge range of conditions that are covered under the umbrella of “disability.” Visually impaired, mobility impaired, hearing impaired, brain dysfunction like seizures are small examples of what that covers. I guess I wish people would just ask what I need. That would be much easier.
-
This! This times 100. So well said, Susana.
About the fatigue. I have found mestinon (pyridostigmine) helps with endurance for me. I’ve known a few other SMA patients, both type 3s and still ambulatory who didn’t care for it. One said it didn’t seem to help much and the other said it increased fasciculations. The standard Rx calls for one 60 mg pill taken 3 times a day with a meal. Personally, I only take 2 per day. Not sure if the pill form is doable for you, but if of interest, reach out to your neuro to see if it might help. Dr. Tom Crawford at Johns Hopkins in Baltimore is the one who told me (and the others I mentioned) about it if your neuro has questions. I did a study with a (at the time) Hopkins PT named Meghan Moore on this and it was part of a display board at the 2022 CureSMA conference. We showed that in 10-minute sessions on a recumbent exercise bike, I was able to maintain a more stable number of steps per minute and actually was able to increase the resistance level. Of course, YAMMV, but thought I’d mention it.
-
Log in to reply.