Medford couple starting support group for rare, life-threatening disease

Medford, Ore.– Imagine waking up one morning with half of your face paralyzed. That was reality for David Ball of Medford, who will now live the rest of his years battling a rare disease.

David and his wife Cathy are the kind of couple that can finish each other’s sentences, but sometimes Cathy has no choice but to be David’s voice. That’s because David suffers from refractory Myasthenia Gravis, the most unstable case of the disease.

Myasthenia Gravis, or “MG,” is a rare, autoimmune, neuromuscular disorder. David said it hit him out of the blue while on vacation in April 2010, waking up with the left side of his face drooping. He assumed it was Bells Palsy, and when he got home to Medford, his doctor said the same.

After taking two months off from his job as a UPS delivery driver, David felt ready to go back to work.

“As soon as I went back to work and started exerting myself, my symptoms came back even stronger,” David said.

Doctors couldn’t figure out what was wrong, so David kept working. Until one day, when he was approached by a man he had grown to know well at one of his regular stops.

“I got out of the truck and the guy said, ‘what’s wrong with you?,” David said. “I said, ‘I don’t know.’ He called my boss and told him I shouldn’t drive.”

David still chokes up thinking back to the experience, as not being able to work is hard for him. Seeing how distraught her husband was, Cathy insisted they set out for medical answers.

After waiting on a waiting list to see a specialist, David was finally told he has MG.

“Myasthenia mimics a lot of different illnesses,” Cathy said. “From Bells Palsy, to MS, ALS.” It’s a baffling, baffling disease.”

Not even a month after discovering he had MG, David was taken by life flight to Oregon Health & Science University Hospital in Portland while Cathy was at work.

“I don’t think I’ve done 65 (mph) in my whole life and I did 65 the whole way up there,” Cathy said. “They didn’t really expect him to come back.”

Cathy and David reminisce on all of their children and grandchildren who came to visit David at OHSU, unsure if they’d ever see him again.

But David had other plans.

“I’m too stubborn,” David said. “And I promised her (Cathy), almost from day one that I would never give up. It’s been close.”

“It’s been very close,” Cathy chimed.

Fortunately, David was able to find some relief in the form of a newly approved drug for MG patients. The drug was approved by the FDA right after David was fast-tracked for a clinical trial.

He’s been on the drug since November 2017 and has been doing much better, but he’s still sick. He will sometimes slur or stutter when he talks and he has to take it easy.

“Try being married to someone who has MG ’cause stress is one of the worst things for them,” Cathy said. “You can’t argue with them cause that stresses them out!”

“So now, I’m always right,” David chimed in with a laugh.

Through all the hardships, David said he credits Cathy for being his rock.

“I feel like it’s brought us closer. I couldn’t have done this without her.”

Now the couple wants to take the support and knowledge they’ve received and give it to others. David had previously traveled up to Portland for MG support groups, but now he and Cathy are creating their own help group in southern Oregon.

“When you have a support group, you have a language of the heart with somebody else that’s going through the same struggles,” Cathy said.

They have partnered with the Myasthenia Gravis Foundation of America. Information for their first meeting is as follows:

Saturday, July 7 2018

11 a.m. to 1 p.m.

The Smullin Center room 106

2825 East Barnett Road

Medford, OR 97504

Please RSVP to David Ball at 541-840-8854 or [email protected] or to Jeannie Matthews at 541-779-1334 or [email protected]

Light refreshments will be provided.

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