Hello! I'm MichaelHusband, Father, & Rare Disease Advocate
Advocating for rare disease while living life!
I am a husband, father, and rare disease advocate. After working for 22 years in the information technology, law enforcement, nonprofit, and security industries, my body couldn’t take the effects of my rare diseases anymore and I had to stop working. After years of trying to figure out what was wrong, I now know I have recurrent meningitis and periodic paralysis. Chive Charities was willing to help me get an Action Trackchair to be able to go outside and still live life with my family. This site is my way of sharing my new adventures with the world.
RareTracks Life in the News
How I Became a Trackchair User
Over the years I have had multiple brain injuries, and illnesses, but I seemed to mostly get back to normal. Generally I didn’t think much of it until I got meningitis for the second time in my early 30’s. After finding out during that hospitalization that I have a rare disease that causes recurrent meningitis I slowly started to get worse health.
It didn’t show right away, but was slowly over time until I had a breakdown at work in summer 2015. I was overworked causing lots of stress and my rare diseases caught up to me. I had
symptoms of PTSD (post traumatic stress disorder), depression, and anxiety. It culminated in being hospitalized for suicidal ideation in early 2016.
A couple months later I started having regular paralysis and seizure type attacks, and I have had them daily since then. We haven’t been able to determine the best treatment for me yet as every time we try something new I have a severe reaction to.
One of the symptoms that causes my paralysis is exertion. Since that is the case I can’t walk for very long before either just paralyzing or having what is called a drop attack where I just drop (looks like someone feinting) and become paralyzed. Since this is the case I need to use a mobility aid to get around safely.
My first wheelchair that I now use for going to doctors appointments is called the KD Smart Chair. It was the first option to allow me to become mobile again. It is only 50 pounds, so my wife can fold it up and throw it in the back of our van for easy transportation. This type of chair is very limiting though as it has to have solid surfaces to drive on.
My wife and I had been looking around for all-terrain wheelchairs. You should take a look around, there really are a lot of different options. The best one we found was the Action Trackchair. Since it has tracks and not wheels it seemed like the chair that would work best for our purposes, since we live where there are lots of mountains and lakes.
In comes Chive Charities! I contacted them many months before we found this chair, but it didn’t seem like our needs fit best with their mission at the time. So I contacted them about the action trackchair and asked if that would fit in with their mission and they said it did! So we went through the process, they approved the payment, and my chair was ordered.
I was lucky enough to get the chair delivered a couple days before my birthday. It was perfect because I was able to get the chair in time to have our local news do a story on my new chair and Chive Charities that provided it for me.
Since then I have mostly taken my chair out around my neighborhood to just get out of the house and be able to do it safely. I can’t wait to share more about my weekly rides around the neighborhood and the tracks we get to take!
If you know of any trackchair friendly trails within driving distance of north Idaho please let me know at [email protected].
Sorry I have been so quiet for a while, but life has been interesting. After being approved for Keveyis, I had to work through what they call a titration schedule to determine the best dosage for me to take. I am very glad I did too. When I tried to change from 25mg...read more
So, the past couple of weeks have been interesting. I finally received a response from the lab (Illumina) that originally reported that my variant might be related to Andersen-Tawil syndrome. They stated that they have done more research since they originally...read more
Back in March I was made aware of discounted whole genome sequencing (WGS) from Dante Labs as part of an agreement with a periodic paralysis genetics support group I am a member of on Facebook. I sent in my sample and have been waiting since then to get the results. ...read more