Bozeman’s “Stiff Man” works through rare, one-in-a-million disease

Darrell Cherry stands at the front of the Ridge Athletic Clubs where he is the current Chief Operating Officer.

BOZEMAN, Mont. – Darrell Cherry served in the Navy, was an avid runner and has spent the majority of his adult life working in the health and fitness industry before being diagnosed with a rare neurological disease called Stiff Person Syndrome.

The Cherry family revolves around athletics as Darrell is the Chief Operating Officer of the Ridge Athletic Clubs, has four children who were all student-athletes growing up, and he and his wife used to go on hikes around the Gallatin Valley.

Luckily, Stiff Person Syndrome (SPS) is not a genetic disease or contagious one but it does have autoimmune features with symptoms like muscle spasms, hyper-rigidity, debilitating pain, and chronic anxiety. Some muscle spasms can be so violent they can dislocate joints and even break bones.

SPS is labeled as a rare disease, but more people are affected than reported due to misdiagnoses like Multiple Sclerosis, Parkinson’s, Fibromyalgia, Psychosomatic Illness, Anxiety, Phobia and other autoimmune diseases.

“There’s not a lot (of treatments) because people don’t know what it is, doctors don’t know what it is, the average time to diagnose Stiff Person’s Syndrome is seven years,” Cherry said.

Cherry started having symptoms last winter and took some bad falls from his left leg and back stiffening up due to stress.

After going to chiropractors and all sorts of doctors, he never got a good answer to his problems until he went to Joshua Knappenberger, a Neurology Specialist at Bozeman Health who had actually seen a case when he was a resident.

Cherry's blood samples were taken to the Mayo Clinic which found GAD-65 antibodies fighting against GABA, the chief inhibitory neurotransmitter which keeps your muscles loose. 

Patients are often disabled, wheelchair bound or bed-ridden, unable to work and care for themselves, but every case is different and for Cherry it’s a mental and physical challenge with almost everything.

“Agoraphobia is a real thing too; you get nervous and stress over places you haven’t been to with people around and that causes my leg and back to stiffen up… I try to avoid open spaces unless I have Logan or Sierra or someone, at least something I can grab onto and it eases my mind,” Cherry said.

Darrell’s wife, Erica, bought him two sturdy walking sticks he uses to get around on his own power and he keeps a dog leash in his car to help him pull his left leg into his car to drive around.

“Really a lot of it is having a good mental positive attitude, some days I feel great, you know I think maybe on those days I’ll try to mow my lawn and do stuff like that and stay active, I can’t weed-eat cause it’s just my balance isn’t so good, but I can mow the lawn,” Cherry said.

Dr. Scott Newsome of Johns Hopkins Medical in Baltimore is working toward getting a research study going that will help identify certain markers associated with SPS.

“It’s my understanding that Dr. Newsome, with the help of Dr. Tara Zier, my friend, she was a dentist and has Stiff Person Syndrome, they've raised about $75,000 and need another $25,000 to secure the labs, equipment and researchers to start the study,” Cherry said.

If you are interested, you can go to here to donate and Cherry said you can follow his journey through his "Stiff Man" blogs posted here.

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