On Thursday I met with some women who have each visited the same physical therapist in McLean, Virginia. The meeting served several purposes. One was to enjoy lunch. Second was to discuss the possibility of establishing a small support group or partnerships. Third was to determine the accessibility of the location chosen for lunch.
My impression was that the location did seem easily accessible and that the staff were quite accommodating. Although the restaurant does not normally take reservations, an exception was made so that the group (which included two scooters, one wheelchair, and one rollator/walker) could be seated promptly and easily.
There was slight awkwardness when we were actually getting seated. There were no ‘take charge’ caregivers to direct the flow of traffic and I inadvertently confused matters when I helped to push two chairs aside which were needed after all. Then after everybody got seated, a couple members of the group thought that the scooters would be driven away for the time being, but instead they were tucked away close to the tables.
This tucking in maneuver actually blocked me into the bench on the wall side of the table. At one point I was wondering if we weren’t going to have a big hullabaloo if I needed to get up quickly to run to the restroom due to weak bladder control. Fortunately lunch was wrapping up just at the point I needed to get out quickly. Whew
Debbie has already reviewed our lunch on the new website EZAccessVirginia which was started by someone from the same physical therapy office. Hopefully it will become a great resource for folks traveling with special accessibility needs.
Continuing with the theme of accessibility, I received a bit of on-the-job training. I went to one person’s home to pick her up and later brought her back home. We ended up with more time for discussion in the process (to be discussed more in depth below).
Some of the things I learned:
When someone uses a rollator/walker, they need much more space on the side of the car to enter and exit. The drive must not pull up close to the curb.
The particular design of rollator which was used can be somewhat folded up but that didn’t really make it much smaller (in my opinion). The chair does not automatically stay open which will certainly make for some awkward, funny moments for the person who hasn’t had hands-on experience previously.
It really helps matters if specific directions are given to address certain needs. For instance, the person I picked up stressed that I should pull up as far as I could in her driveway as far to the left as possible. This was necessary since there was no excess space in the driveway or one the sidewalk to maneuver car doors, persons, and equipment without some fancy dance moves.
As you may gather from my description above, most of the ladies attending lunch live with impaired mobility due to MS. I visibly looked different than the others - a bit younger and firmly on my feet. When we got back into the car after lunch, the woman I wrote asked me a question.
"Do you have any MS symptoms? You don’t look like you have any."
We had a brief conversation where I listed the many different symptoms which I currently experience and have experienced.
Eyes: impaired vision, temporary blindness, nystagmus
Sensory symptoms: nerve pain, strange sensations, numbness
Weakness: left arm, select fingers, both legs, hip flexors, thighs
Spasticity: calves, hamstrings, bottom of feet
Bladder/bowel: urgency and contispation ** Balance:** mildly impaired proprioception and balance control (keep those eyes open!)
Overall: heat sensitivity, extreme fatigue, insomnia, mental fog, word searching
Mental Health: depression, anxiety, mood swings
The only symptom which ‘might’ be visible to the outside observer would be leg weakness but only if I’ve pushed myself too far. My legs get to feeling like they are stuck in concrete blocks weighing 50 lbs each. The muscles get completely fatigued and everything slows down. I quickly can’t feel my legs or feet at all and this is when I trip and fall.
What was interesting about the ensuing conversation was that there were symptoms that I experience which she didn’t know much about. It was funny that somebody living with MS basically expressed the "you don’t look like you have MS" or "you don’t look sick" thought out loud. I just found that moment somewhat entertaining.
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.