RareTracks Life

My life living with rare diseases in my Action Trackchair
My Tracks

Events

National/State Parks

Rare Diseases

Trails

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 paralysisChive 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.

Recent Adventures

Thanksgiving

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...

Diagnosis and Treatment Update

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...

Genetic Testing Results

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. ...

Smoke is Clearing

The air has been so bad in north Idaho lately due to fires in California, Washington, and British Columbia Canada that I haven't been able to get out in my trackchair.  It got so bad again this year that I had to wear a mask in the house because the smoke was...

The Pied Piper

Tonight I was able to attend the performance of The Pied Piper my daughter was cast in,  put on by the Missoula Children's Theatre, and sponsored by the Hayden Arts Commission.  Our daughter has attended two years of acting lessons thanks to scholarships from the...

Time with Friends

Last night was the first time I have felt like a normal human that has rare diseases in a long time, rather than me just being my rare diseases.  My wife is an author and one of her friends, who is also an author, invited us out to their house in eastern Washington to...

Art on the Green

In my city they have 2 events in one weekend every year, Art on the Green and the Street Fair.  This year was the first year in a really long time we were able to go to one of the events, Art on the Green.  These are very popular events that are very well attended....

Farragut State Park

This is the second trail we have attempted with my trackchair.  It is a trail we used to hike on before I became unable to walk any distance due to becoming paralyzed during exertion. The kids were excited to go looking for treasures and Mom and I were excited to get...

English Point

This was our first outing with the new Trackchair.  I received the chair at the end of March for my birthday from Chive Charities, but with everyone being sick and needing to get a trailer it took a little while to get out with it. This has been one of our favorite...

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