I’m on the road again, literally and figuratively. I’m on the road to vacation and stuck in traffic on I-95. Then last week we hit a roadblock when it was announced that two ALS drug trials had failed. One of them I had taken part in for more than a year. So after some time being stalled at the gate, I’ll hit the road again looking for another trial to take part in.
The past few weeks have been pretty well trafficked with people, appointments, and just things to do.
At my last clinic visit I was diagnosed with a probable case of thrush. Another bump in the road. Thrush is a problem usually found in infants who are bottle feeding. So it fits right in with my scenario of wearing bibs, eating toddler food as snacks, and requesting to be taken to the bathroom to tinkle. The instructions on the medication say to gargle and swish four times a day. Um, that’s not happening. Swishing, gargling, and even spitting have gone by the wayside.
On a Tuesday early in the month I had a massage. My massage therapist comes to my home. After moving the furniture around in the bedroom, my aide skillfully gets me into that hospital bed I never use. I get a full body massage even though I cannot roll over. It is a relaxing hour and one that my immobile muscles appreciate. I only wish it was a covered medical expense and could be twice as long and more frequent. If anyone out there has a foot fetish, I have two feet you can massage whenever you want.
Later that afternoon I had an appointment for a telephone conference with researchers wanting to learn more about a PALS’ point of view of their disease. Now, if you’ve been following my blog, you know that I have come to dislike talking on the phone. It takes up a lot of energy and the majority of people I talk to don’t understand what I’ve said anyway. It’s very frustrating for me.
I planned the call late in the afternoon so that my husband would be home to act as my interpreter. As it turned out, he was stuck in a meeting and would not be home in time. As the clock ticked past the arranged time, I realized that the researchers had called but my phone was still set on do not disturb for my massage earlier in the day. Another road bump. I called back and managed it with some repetition necessary on my part. The call was tiring but worthwhile. Anything that drives research along is, in my opinion, worth the time.
The next day I had a wonderful visit with two friends who flew down from New York for the day. We all worked together in Intellectual Property in New York City. Ironically, I worked in the Life Sciences end.
That week wore me out and then it started all over again with a mammogram on Monday where the biggest impression I made was with my power wheelchair. Did you know you can have a mammogram in a wheelchair? And it doesn’t have to be the Rolls Royce of wheelchairs, as the ladies dubbed mine.
Wednesday evening I had a follow-up visit by neighbors who are members of our community outreach, Woodlake Cares. They are researching ways to help Joe and me. Together with my neighbors and my church family collaborating it will all get figured out. Love abounds!
And now the time has finally arrived to get on the road to another new adventure — learning how to use an eye tracking system. The system will be my voice. It will replace my computer and if I get good enough at it, I may be back to talking on the phone.
ALS is sucky and makes life difficult. It plays with our bodies and tries to make us give up. I have many frustrations that don’t always make it into this blog. But it’s important that we find the right road and cram as much as we can handle into the pit stop of our lives.