But by 1992, I could no longer
travel. I received a disability settlement and was forced to quit working. The good news is I received
SSDI immediately. The bad news
is that I was eligible for SSDI
immediately.
In three years I’d gone from having
an MS exacerbation that was barely
noticeable to briefly using a cane,
then struggling with a walker. I
had severe problems with spasticity
and eventually couldn’t leave my
house unless I was in a wheelchair
and my legs were fastened to the
chair with Velcro strips to control
them and keep my feet on the
footrests. (I tried Baclofen but it
was ineffective.)
During all that time, I believed
there would be some research
development or a trial of some
medication for my type of MS. You know, not the
“good” kind. No matter how bad it was, I would
think it could be worse. And then it would be!
Around 2002, Dr. John Noseworthy of the Mayo
Clinic was leading a double-blind clinical trial of
the effect of IVIG (intravenous immune globulin) on people with progressive MS. The description of the study made me think the treatment
could be promising for me. I applied for the trial
and was accepted. However, I didn’t want a placebo. IVIG was not a new or experimental drug
for all diseases. It had long been an approved
treatment for other disorders. So I was able to
arrange to receive IVIG treatment at home daily
for five days.
About a month later, I began feeling somewhat
better—less spasticity, more strength. I was able
to begin exercising regularly.
In 2009, I wrote to Dr. Noseworthy explaining
that while I knew IVIG was not recognized as an
effective treatment for MS, I had improved after
taking it. He wrote back, indicating that while I
thought IVIG had helped me, it had not been
shown to be effective in his clinical trial.
I guess God loves me, because I have continued to
improve, slowly, since then. Today, I walk with a
quad cane and don’t usually use any walking aids
when in my home. You never know when or from
where help might arrive. A positive change could
be on the horizon.
Jack Luebeck lifts weights every other day and makes it a
rule to go out daily, whether to shop, have lunch with his
wife of 42 years, or play with their two Standard Poodles.
He sees his two adult sons almost every week—and calls
himself a very fortunate person.
