someday I can do the things I used to be able to
do,” Whitney said.
Lewotsky agrees. Although she’s disappointed that
the disease-modifying drugs don’t work for her,
she too remains optimistic. “It makes me grateful,
given how comparatively few people have primary-progressive MS, that they are working on ways to
treat it,” she said.
When it comes to clinical trials, progressive MS
patients traditionally feel left behind. “I find nothing I can participate in because 98% of trials are
geared toward relapsing-remitting,” said Whitney
in an all-too-familiar observation.
That’s partly because progression may occur over
the course of several years, while clinical trials
rarely follow their volunteers that long. Today both
MS investigators and drug companies are beginning to develop trials geared toward the progressive forms. Findings on biomarkers and improved
MRI techniques could change clinical trial design,
making possible shorter, more focused trials
in SPMS or PPMS groups. Work is also going
forward on what is already known. “From every
well-controlled trial—even the ones that fail—we
can learn something about progressive MS,” said
Daniel Reich, PhD, MD, of the National Institutes of Health.
To see clinical trials that are currently recruiting
volunteers with progressive MS, and to review the
basics about clinical trials, go to nationalMS
society.org/clinicaltrials or try Clinical Trials
.gov. To share experiences and opinions about
progressive MS with your peers, join our online
community ( www.nationalMSsociety.org/
onlinecommunity). And see pages 60–62 of this
issue for more details on what’s in progress. n
Holly O’Dell is a professional health writer who happens
to have MS herself. Her previous articles focused on cardiac issues; this is her first contribution to Momentum.
Beyond treatment:
Living well
The National MS Society offers a number of programs and products specifically tailored for those
affected by progressive MS.
MS Learn Online offers nearly a dozen videos on
progressive MS topics. Visit www.nationalMS
society.org/mslearnonline and click on “
Progressive MS” in the green menu box.
Primary Progressive Multiple Sclerosis: What
You Need to Know by Nancy J. Holland, EdD,
Jack S. Burks, MD, and Diana M. Schneider, PhD.
This 166-page book includes the six-part MS Learn
Online feature “Primary-Progressive MS: Perspectives on Moving Forward” as a DVD insert, thanks
to an unrestricted educational grant from Genen-tech. Call us at 1-800-344-4867 and ask for a copy
to be sent to you.
For People with Progressive MS. The Society’s
Progressive MS page features videos and links to
brochures on understanding and managing progressive forms of the disease. Visit www.national
MSsociety.org/progressivems or call us to
receive print copies of our brochures.
And take advantage of these other resources:
Abledata
Go to www.abledata.com. The site lists more
than 20,000 products, with descriptions, prices,
ordering instructions and installation information.
Centers for Independent Living
The National Council on Independent Living links
some 700 private, nonprofit community organizations run by and for people with disabilities. Go to
www.ncil.org or look in the telephone directory
under Independent Living Center.
