I was asked to write a blog post about my story of living with Hereditary Spastic Paraplegia (HSP) and my first thought was that I didn’t have a story to tell. Did I even have anything meaningful to share? What is ‘my story’? Getting diagnosed with HSP changed my life completely. My experience up until today has been quite the journey. Here’s a look into what’s happened so far.
”Getting diagnosed with HSP changed my life completely.Betsy KlotzA Lady Living With HSP
My whole life I’ve always been on the clumsy side, never able to move very quickly, and struggled with school from an early age. My issues were never quite severe enough to be noticed as anything to cause concern, but they were always there. It often seemed that I needed to work harder than the others in school, yet I never really felt like I could keep up. Gym class and physical exercise was a struggle. In my teenage years I took to swimming and walking. I would walk home from school about an hour. I’d plug in my walkman, and just unwind.
2017 is when I first remember my symptoms of HSP starting to significantly manifest. Of course at the time I didn’t know it was a symptom; no one falls down the stairs and thinks they have a degenerative condition. The more logical reaction is to think ‘I’m such a klutz! Damn’. But, as time went on more unusual things started happening, though it still didn’t occur to me that I might really have something wrong with my nervous system. I developed plantar fasciitis in my right foot. I was falling down the stairs. I was tripping. I was having significant leg pain from standing extended periods of time. My walk was becoming awkward. At work, I would regularly be asked if I was injured. I would just say I have a ‘weird walk’ as I genuinely thought that’s all it was. But as time went on my weird walk became more of a limp, and the leg pain started to get worse.
In mid 2019 I started seeing an osteopath. I knew something was up because my limp wasn’t improving, and he had helped someone I know recover from a rather severe accident, so I thought I would give it a try. Working with him, I learned a lot about my gait pattern, and that my muscles weren’t reacting the way they should have been. He had suspected something was off, but since he wasn’t a doctor, he couldn’t diagnose me. I still didn’t suspect it was anything major, instead that with some treatment, this whole ‘weird walk’ thing would correct itself and I could get back to the days of walking an hour just to unwind.
Near the end of 2019, I mentioned I was seeing this specialist to my father (an accomplished medical doctor). He did not like the idea of me getting advice from someone that was not an MD. At his insistence, I agreed to see a neurologist although I went along with it to appease him. When I saw the neurologist, he told me he wanted me to get an MRI! I was surprised, but agreed it was a good idea just to be safe. A few weeks after the MRI, at my follow up appointment, I was told that my scans looked great! I left the appointment feeling relieved. I remember thinking ‘ok great, I’ll get some therapy for my walk and all this will correct itself’.
It was two weeks after that when my neurologist called me again. He told me that he showed my scans to another doctor and they think that I might have Spastic Paraplegia 11, an HSP gene variant. My neurologist said that I probably don’t and not to worry about it. He said everything so quickly I almost missed it. I had no idea what he was talking about! I was sent for a few more MRIs to rule out other possible issues. Unfortunately this was all around March 2020 and Covid was entering the picture. I found myself in limbo. I was told I might have HSP but that wasn’t certain, so I had to just wait, not knowing what was going on! I was understandably concerned, and did my own research online but Googling a condition and searching Youtube can only take you so far. March and April passed and by May it became clear that Covid wouldn’t be ending any time soon. Everything was delayed, so we decided that we should pay out of pocket and get a lab test done to see if I had the gene variant. And…I did! Of course it was a huge shock, but it also explained so much. Everything fit perfectly with the list of HSP symptoms! The diagnosis helped to explain so many of my childhood experiences which brought me a lot of peace and clarity. Even so, I still thought back to those long walks after school with a feeling of loss.
While the H in HSP does stand for hereditary, no one else in my family had any of my symptoms. Before the diagnosis, I spent years trying to figure out where my struggles could have stemmed from. Was it caused by that accident I had as a kid? Was it from when I had that bad ear infection? Finally, I have the answer. I still don’t know exactly why or how I got this condition when no one else in my family has had any similar experiences. Either way, I feel a great sense of relief just knowing there’s an explanation for it all.
By the end of August, I was finally able to follow up with my neurologist. I showed him the lab results, and he described the worst case scenario of the condition to me. I understand it’s a doctor’s job to do that, but wow it was hard to hear. In that moment all I could envision was my life circling a black hole of despair.
I won’t lie, it took me a few weeks of crying and dealing with the grief of losing the life I thought I’d have, before I could pick myself up and force myself to stop thinking that way. Yes, worst case scenario could be my reality, but it might not be. So, I made the choice to not let myself go to worst case scenario land because that’s no way to live.
It is now February and I’ve been living in my new reality for about 6 months. My mobility has drastically changed, and I am learning what my new life is. I spend a large majority of my days working on fitness, as it’s one of the few things I know that I can do to help manage my symptoms. I also find myself going to a lot of medical appointments. It’s been quite disheartening dealing with specialists that know nothing about the condition, but I am still grateful to be getting the help. I am very proactive about making sure to care for my mental health. I speak regularly with a therapist, along with journaling, meditating, and connecting with others who have this condition.
Finding community is a big part of what’s helping me feel ok about all of this. I have connected with people online through a support group, and by creating a facebook group of my own. It’s specifically for people in their twenties and thirties with HSP, PLS or ALS. As I began meeting others, I quickly realized how different the experience of going through this in my thirties is compared to the older folks (60+). While it’s not nice to get this condition at any age, there is a grief I’ve had to work through knowing that I have 30 or so less years of symptom free life than those whose onset came later. It’s about coming to terms with the loss of the largely symptom free life I had and didn’t expect to lose. Finding community, spreading awareness, and showing others what life with this condition is like gives me a new purpose and helps me find a silver lining in all of this.
Before my diagnosis I would never work out, but this condition gave me the gift of a reason to stay committed to exercising and for that I’m thankful. Also, continuing to keep a positive attitude, and sense of humour about all the overwhelming changes has been so necessary. Sometimes life throws curveballs at you, and it’s all about how you decide to deal with them. This has taught me that life is not going to turn out how you think it will. I truly get that now. Living with HSP and dealing with its implications is not a linear thing. Having a progressive condition requires you to deal with changes as they happen. Allowing myself to accept that I need to ebb and flow with this new reality has given me the space to grieve, heal, and work through issues as they arise.
Where this is all going to take me, I do not know. As I continue to go to appointments, slowly I’m learning more about my diagnosis. I know my feelings, lifestyle, and overall situation will continue to evolve. I guess that’s just the reality of living with a progressive condition!
Submitted by Betsy Klotz