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#Post#: 4876--------------------------------------------------
Transportation--one way for some MS organization to be useful
By: agate Date: July 23, 2025, 1:48 am
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The MS organizations that I know of--the MS Society, the MS
Association of America, and the MS Foundation--have various ways
of offering practical assistance to people with MS, and that aid
has been very helpful to many over the years.
However, the only time when I've noticed transportation
assistance being offered was through a program that will provide
transportation (via Uber or Lyft if I recall correctly) to
neurological appointments and for MRIs.
I'm not sure that that program still exists. I hope it does.
I've had MS for so many years that I'm now having aging problems
in addition to the MS. I've been riding on the local paratransit
(lift-equipped) system for almost all of my transportation for
most of those years. I've used such a system in two different
cities.
Unless such systems adopt a policy of providing special
consideration to riders over a certain age (80? 75?), I can
think of no way to solve the problems with transportation that I
now have.
With fading vision and impaired hearing, I am unlikely to be
alert enough to pick up on signals that I need during these
trips--hearing my name called, noticing that a van has parked in
the wrong spot, for instance.
The answer might be to bring a companion along but that is
asking a great deal of someone. A neighbor of mine was having to
go for cancer treatments (infusions) and put up a sign offering
to provide a sandwich to any neighbor who would take her there
and back on a certain day from 8 to 3. I have the impression
that there were no replies to her notice.
My point is that most people just don't have the time or
inclination to want to escort someone with a wheelchair back and
forth to medical appointments.
I average about 1.5 -2 of these a month. If there is no problem
(sudden need for an X ray or extra lab work, a doctor's running
behind schedule), each appointment typically takes about 2 hours
including transportation time.
With the paratransit system, though, I can often be given a
pickup time that is 2 hours before my scheduled appointment
time, and a return trip ride that turns out to last 1-2 hours as
well. The appointment itself might take only 45 minutes and
might be only 15 minutes away.
The rides are done this way so that the driver can pick up and
drop off other riders en route. Sometimes a ride is a straight
shot--my idea of heaven. But all too often there are many other
pickups and dropoffs.
This is not easy for an older person with MS (and diabetes).
Medicines and meals have to happen at fairly regular times. I
become tired after so much riding around, particularly since I
often have to get up earlier than usual in the morning just to
be ready for such an early ride.
Then there is the need for a bathroom. Sometimes I have very
nearly had an accident while riding around. Prominently
displayed in every paratransit van is a box labelled "Body Fluid
Cleanup Kit" or some such, and I'm assuming that the drivers are
trained to cope with accidents. I understand that they can't be
expected to stop the van, find a restroom, unload me in my
wheelchair and wait. And of course it would be uncomfortable
and embarrassing for me.
Here is where an MS organization could be helpful.
Years ago I had to appear in small claims court in connection
with a landlord who refused to return my security deposit. I had
to appear there three times and it was becoming tiring. For the
third time I somehow managed to be fortunate enough to have a
volunteer accompanying me. I no longer recall how I managed to
find such a person but she was a college student, young and
able-bodied, and she was very helpful. She stayed with me during
the entire long wait for the case to be heard and she provided
transportation both ways.
If this could be done, I wonder why an MS organization couldn't
provide such people for those with MS who have no such person to
call on for rides to medical and dental appointments. It is
probably too costly and hard to administer but there are people
out there who lack resources and must rely on a paratransit
system even though rides are so difficult for them that they
skip going to medical appointments unless they are absolutely
essential.
Physical therapy might be helpful for me at this point, for
instance. Many years ago I had several courses of it (8 visits
at a time, covered by Medicare) but wouldn't consider asking the
doctor for a prescription for it now because the trips back and
forth would be too difficult.
Cataract surgery has been recommended for me for many years but
the 14 trips back and forth that would be involved are more than
I want to put up with.
Those are just a couple of examples.
I think of the man with very disabling MS who lived across from
me in an apartment building for many years. He had about seven
siblings all living in the area but they were hardly ever on
hand to help him. He had a helper on weekdays who was provided
by Medicaid. Otherwise he went everywhere in his power chair.
He didn't go to very many medical appointments. How could he? He
had no voice whatsoever, no use of his legs at all, and very
limited use of both arms. He lived alone in his apartment and
managed as best he could.
Sometimes during the holiday season someone from the local
chapter of the MS Society would visit him with a basket of
fruit. That was a lovely gesture but I have a feeling he would
have appreciated help with transportation.
Over the years I have heard complaints to the effect that the MS
organizations--the MS Society especially--focuses too much on
research and not enough on patient services. MS patients are
living far longer than they used to. Maybe these organizations
should consider expanding their patient services to provide
better assistance for the aging MS population.
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