Describe your life at your healthiest point.
Married for 30 years, parent, grandparent, great grandparent. Steven Schartel tells The SPSRF about his experience living with SPS.
My work as an inventory control and purchasing manager and now a data analyst was rewarding and fulfilling, growing a wholesale distribution business. I was constantly busy in my woodshop making keepsakes for my grandchildren. At age 60, while competing with my sons in Obstacle Course Races like Spartan, BattleFrog, Tough Mudders, and more, I was finishing in better time than 60% of all participants while at that age I was like .002% of all participants! I was doing 7 mile training runs with a 45lb weighted vest and a 10lb dumbbell in each hand up and down a local mountain on weekends for fun and to train for the races.
How many years before your diagnosis were you experiencing Stiff Person Syndrome (SPS) symptoms?
Hard to say, my OA started in 2017 but the major symptom was lower back pain and stiffness, thought to be OA by the end of 2017. March 2019 lower torso weakness was the wake up call to get help. So about 5 years?
Describe your most debilitating symptoms.
Fatigue, anxiety, muscle weakness, tired, brain fog, twitching/jerking muscles, muscle stiffness (no kidding Steve), pain, burning nerve sensation entire body
Describe treatments you have tried, what has worked and what has not.
Cymbalta was prescribed at first and it helped; felt wonderful. Then SPS progressed. After increased doses to 150mg, the side effects were also debilitating. Stopped taking Cymbalta. Lyrica did nothing. Was offered Belbuca by a pain management doctor. I refused. MED MJ worked well from July 2021to March 2022 until symptoms once again worsened. Currently on Baclofen/Gabapentin/prednisone, They have been keeping me working and on my feet since May. Every treatment tried so far my SPS has broken through and has progressed. Starting my IVIG this week. I’ll let you know!
We, my wife and I, are grieving the loss of our planned lives and retirement. I miss my woodshop and mountain training runs. I am slowly, really slowly, learning how to ask for help. That hurts. SPS is a very humbling disease.
— Steven Schartel
Describe a time you received compassionate care.
My Dentist and Eye Doctor are in the same building. The people scheduling the appointments sit 4 feet away from each other. After calling each person and being told they cannot coordinate scheduling same day appointments (trust me I don’t want to go out if I don’t have to), I visited their office and talked to my long-time dentist who talked me down, was super empathetic, and she had my appointments made in 5 minutes! AND with no appointment she fit me in and made a dental night guard mold that I told her I wanted. The dental hygienist held my hand the whole time. I was so anxious! Saved me another trip too. The only reason I am still at this place of business was my dentist of many many years.
Describe how SPS has changed you.
Wow, loaded question. Everything. It has changed everything. Nothing but my health, family and home is important anymore. I try to be more compassionate, more understanding, and empathetic. I can be all those, but on the other side of the coin, I am easily frustrated during interactions with people, please be patient with me. I realize, we, both my wife and I are going through the grieving process of the loss of our planned lives & retirement. I miss my woodshop and mountain training runs. I am slowly, really slowly, learning how to ask for help. That hurts. SPS is a very humbling disease.
What brings you joy?
My children and grandkids, home, wife, work, woodshop, traveling. All are suffering because of SPS. Since my grandkids are not close by, not being able to travel and move as I once could has severely hampered my ability to take part in my grandchildren’s lives. I haven’t even met my 3 month old grandson. Fewer hours in the woodshop means that the opportunity to open a little shop is another loss. Traveling, no plans to travel or do anything until I am strong enough again. COME ON IVIG!!
What do you want people to know about you?
Married to Michele, my wife of 30 years. Really appreciate her being here for me. I have 10 grandchildren and 1 great grandchild. Love Sci Fi movies, action and thriller movies. Used to neverHandmade wooden rocking horse created by Steven Schartel sit still, (still can’t, haha SPS twitching and jerking joke, insert keen sense of humor here). Integral part of building my current employer’s company from $5 million in sales to $250 million in sales over 10 years. Love water, the pool, lake, ocean, hot tub, doesn’t matter. Can’t get enough watching my grandson Aiden play baseball.
Occupation/previous occupation, if disabled.
Operations Manager / Data Analyst.
Misdiagnosed? With what.
What do you want The SPSRF to achieve?
Find the cure!! Please! Raise awareness! Get the doctors and hospitals to routinely test for GAD 65 antibodies for ALL arthritis sufferers.