I called the county’s transit system to ask about services for the disabled. They requested that I make an appointment with them, at their offices, to assess my abilities and needs. The paratransit agency would pick me and my electric scooter up outside my house in a paratransit van at 12:30 for a 2:00 appointment,
After some temporary confusion and delays [with my old-new neurologist leaving to get married] I finally got assigned a new-new neurologist.
We met with him and confirmed that I'd had the blood test which determined that, at least right now, I did not have the antibody in my blood that could even make it possible to develop the dreaded viral brain infection while receiving the monthly infusions of medication, as previously reported.
Again, this is not a cure. As with all the other treatments we've tried so far, the goal is to stop or at least slow down the progression of the disease. But there is still no objective test of how effectively, or even whether, it is working. All I can use is my self-reporting.
Is the fact that, at 46, I can still ambulate around the house, albeit only when aided with a walker, evidence that previous treatments have been at least partially successful? Or is this how far the disease would've progressed in me even without any medication? I can't know.
Anyway, finally last month, OH drove me to a certified infusion center (the closest to me, in a rheumatologist's office in my county but still a few cities away), where I was hooked up to an intravenous (IV) line and the super-drug was dripped into my arm for an hour.
Then the needle was removed but I was observed there for another hour to make sure I didn't have a negative reaction. Finally, OH, who had just been hanging out in the waiting room the whole time, was able to drive me home.
Which started me thinking about arranging some sort of regular pick-up by public transportation so that OH wouldn't have to just wait around for me once a month. So I called the county's transit system to ask about services for the disabled.
They requested that I make an appointment with them, at their offices, to assess my abilities and needs. The regular buses, you see, are already required to be "accessible to passengers in wheelchairs and limited mobility." [Whatever that means!]
[On another website, I found this description: "…buses are equipped with lifts or ramps that can be used by people who use mobility devices or cannot climb steps…Each bus also has a kneeling feature that lowers the front end so the first step is easier to reach. If you have difficulty boarding the bus, ask the operator to lower the front end or deploy the lift or ramp."]
The paratransit agency ["…special transport services for people with disabilities" outsourced by my local county transit district] would pick me and my electric scooter up outside my house in a paratransit van at 12:30 for a 2:00 appointment, then bring me back when it was over. The fare, which is usually $2.50 each way, would be waived at this time and OH had the option to ride along, too. [In the end, I went alone!]
So, on Thursday, Nov. 3 at 12:15 [to be safe], I was waiting outside on my scooter at the street-level [my house, if you recall, is on the downslope]. OH had to make a quick trip to the hardware store, so I was proud of myself for getting up into position by myself to wait.
Then, it began to rain, gently at first. [This was the reason for his urgent trip to the hardware store, trying to get the house buttoned up before the winter rains.] OH arrived and whipped out an umbrella for me while making "tsk, tsk" noises and urging me back inside to wait.
As soon as I wheeled back into the house, the van came. So back out I went. The driver, 'Sam' [names have been changed], mechanically lowered a ramp, I wheeled up onto it, he attached a padded belt around me as protection, then mechanically raised me on the ramp.
I wheeled off the ramp and continued into the van. 'Sam' then asked me if I could transfer myself to a seat and put on a seat belt, I did so, then he wheeled the scooter into place and secured it with straps, folded up the ramp and shut the door. Then he climbed behind the steering wheel and off we went!
At about 1:30 he pulled up to the building, lowered me down to the sidewalk, and pointed me towards the front entrance before driving off. I scootered through the automatic door and into the lobby, where a worker leaned out of an office and said he'd be right with me.
[As an aside, although my appointment was scheduled for 2:00, I appreciated this flexibility and was hopeful that it forecast an early return home for me.]
Just like at the DMV, I had my picture taken and my fingerprint scanned into the computer. I tried to sign the digital signature pad [another aside: it took me ten minutes on the Internet to find out what that 'thingie' was actually called!] but I couldn't. So, instead 'Joe' digitally photographed my state ID card.
Then he walked with me on my scooter back into the warehouse-like room for the obstacle course. First, he asked me to scooter up a ramp and into the simulated regular-sized bus, perform a u-turn in the aisle, and back up to park the scooter face-forward in the front area of the bus.
And although "seats on either side of the bus near the front fold up to allow room for securing mobility devices," I couldn't even properly execute the u-turn to get there. It wasn't wide enough for me and my scooter.
At this point, I was in the faux-bus, facing backwards, and unable to turn around. But even after he and I concluded that yes, I was unable to u-turn, I was still trapped! I could turn a bit then go forward a little, then into a pole, turn the other way, go back a little, then into the fare box.
In the end, 'Joe' squeezed by me and pantomimed how I could affect the u-turn and get out. After I finally made it, he slid a sensor on my finger [a pulse oximeter!] and checked my pulse. This would be repeated again multiple times.
Next was the obstacle course. I had to navigate a cracked sidewalk with uneven pavement, then push a crossing button, wait for the light to change, then simulate crossing the street before the countdown ended, then drive over a brick pathway, then traverse a winding path cut through raised cobble stones. After which my pulse was taken again.
That was one time. I did the whole thing again 4 more times, including 4 more pulse readings. And after every iteration, 'Joe' asked me if I wanted to stop, or if I thought I could do another. [I did notice that my vision had started to waiver, but I wasn't going to concede that I needed to stop…]
Finally, he decided that we had finished [or did he read that in my pulse??] and walked me back to the waiting area.
He told me that he'd be mailing me a packet of introductory material within 7 to 10 working days, then left me with another disabled rider to wait for the return ride. She and I sat there for another hour [while my vision cleared and my core temperature came down] with a monitor showing old episodes of 'I Love Lucy.'
At one point 'Joe' came back, apologized for the delay and gave us packages of crackers shaped like goldfish. Apparently, the rain was causing traffic mayhem. In the end, he arranged a taxi-van for us.
The entire episode took over six hours; I was home about 6:30pm and went to bed shortly thereafter. And while OH was proud of me for doing it and I was proud of myself for setting up this option, it has now been a week and I still feel overtired.
I will do this again–am intending to take it for my monthly 2-hour infusion sessions–but hope that next time is not as arduous as this, as testing to prove I am too disabled to take the regular bus!