It has been a long time since my last post and so much has changed in the past year that I have been reluctant to write because I don’t know where to begin. I realize that the only thing to do is begin and let the story unfold as it will until I catch up to the present. Please forgive me if it is a little newsy. So, here goes…
A year ago November, I decided to take my mother down to Johns Hopkins in Baltimore to see a doctor who specializes in Transverse Myelitis, the rare condition that started her decent into illness. My feeling was that if we took her to see the best guy in the country he would either tell her that there are specific steps she could take to improve her condition, or that there are no available treatments and she would have to accept things as they are. And that she would listen to him. Either way, the hope was that she would be motivated to move forward with her life. I realize, in retrospect, that I was naïve in thinking that things could be that simple.
I’d just like to take a moment to mention that the trip down there on Amtrak was great. They are fully equipped to deal with disabled travelers and had a special waiting area where we were assigned an escort who helped us board and arranged for the same at our destination. Much simpler than flying.
It was a bit of a circus getting to the hospital because the car company sent an Escalade. Trying to get someone who can barely walk up into a giant SUV was like trying to get an able bodied person to scale a skyscraper. Three of us lifting and shoving and pushing as fast as we could, so as not to miss our appointment. She was terrified and stiffened up like a board, screaming that we were hurting her. She nursed the bruises on her legs for months afterward with a certain perverse glee.
Once we finally got through that ordeal and into the doctor’s office, he examined her and told us that he was not sure she actually had Transverse Myelitis. He ordered extensive blood tests and prescribed intensive physical therapy with an electrical stimulation bike, but basically said there was not a lot he could do unless we were willing to make regular visits to Baltimore. I was a bit concerned that he said that she did not seem to have any cognitive impairment. My mother was her most charming self and managed to appear completely engaged and competent. Of course I couldn’t say anything to him about it with her sitting there and it didn’t seem that relevant to the point of our visit, so I let it go. Her aide and I just rolled our eyes at one another in the background.
Back home, 4 days, a round trip flight and round trip train ride later, I started to look for the magical electrical stim bike. It turns out that there are only two places in NY that have them. It took two months to get her into a program, which required prescriptions, insurance approvals and transportation arrangements. Meanwhile, the fancy blood test confirms that she no longer has Myelitis and now has a diagnosis of peripheral neuropathy, no longer requiring the specialist in Baltimore.
She finally arrives for her first session 30 minutes late because it takes forever to get her ready, and the therapist can’t see her because she has moved on to her next client. Turns out the sessions are only 30 minutes and I realize that she will never get there in time because it takes her that long to get into the car.
I also get a call from the PT saying that she is not disabled enough for the stim bike and doesn’t need it.
Is this good news? I don’t know, but it feels like we’re back to square one…