For Mimi Mosher, a person with primary progressive MS, clarity first came
when she lost her vision.
Her eyesight steadily eroded by multiple sclerosis, Mimi now lived in a
near-constant dusk. The realization came at a scary time. “I was driving. I
thought, I can’t do this anymore. I had to pull off the road and let my friend
drive,” says Mimi.
If you have progressive relapsing multiple sclerosis (PRMS), your condition will get steadily worse from the very beginning.
But you also will experience distinct relapses, with or without full recovery. Between relapses, the disease continues to gradually worsen.
PRMS is the least common type of multiple sclerosis. It affects about 5% of all people with MS.
Until then, Mimi had been living “in a deep state of denial” about her
advancing symptoms. As her primary progressive MS forced her to hand over her
car keys, she remembers, “I knew I had to start planning for a future that
included this disease.”
Primary progressive MS: Uncertain futures
Tens of thousands of people in the U.S. are living with primary progressive
multiple sclerosis. For them, planning for the future includes all the usual
worries: raising children, planning for college, changing jobs, buying a
And a few more: Will I be able to walk? Can I continue to work? How will I
afford all the equipment I might need? Will I end up in a nursing home?
Planning for future life with primary progressive MS isn’t for the faint of
heart. But there are practical strategies for dealing with the uncertainty and
challenges of this chronic condition.
Feeling “left out in the cold” with primary progressive MS
People with primary progressive MS have a different illness -- physically
and emotionally -- than other MS sufferers, says Rosalind Kalb, PhD, a
psychologist with the National MS Society.
“The big thing I see is they feel left out in the cold.” She’s talking about
all the advances seen with other forms of MS. “It’s almost like the message is,
‘it’s not for you’ -- not the new treatments, the new research. They’re even
feeling left out by health care professionals -- it’s like ‘we can’t do
anything for you.’”
The experience of primary progressive MS itself is different, too. Unlike
people with other forms of MS, who have attacks followed by symptom-free
periods, says Kalb, people with primary progressive MS have, from the
beginning, been living with a disease that steadily progresses.
There’s no “bright side” to primary progressive MS. But the absence of
sudden attacks may make primary progressive MS slightly less unpredictable than
other forms of MS, which can strike suddenly and severely.
“Still,” says Kalb, “just knowing you’re living with a progressive disease
doesn’t tell you how fast or how far.”
Progression rates for primary progressive MS are unpredictable
By definition, everyone with primary progressive MS has an increase in
symptoms over time. But the rate of progression varies widely.
The proof of this came after researchers followed hundreds of people living
with primary progressive MS for more than 20 years. Seven years after their
diagnosis, 25% of people with primary progressive MS needed help to walk (for
instance, a cane). At the 25-year mark, some people were bed bound -- but a
quarter of the participants could still walk without help.