This week I saw my neurologist in person for the first time in about six months. Previously I’ve had several check-ins via telehealth, which have been great. Neurology is a prime candidate for telehealth given that many issues like gait and coordination can be assessed through observation, and doctors can get a decent read on them via video. My doctor told me that her hospital had gone from very few telehealth appointments to now over 3,000 per day. I hope this trend is here to stay. Although there’s no substitute for in-person healthcare, my doctor is in Boston, and having a 9:00 am appointment means I must leave home between 7:00 and 7:30 am, and not return home until 11:30 or later. Fortunately, my husband has good flexibility in his work life. With advance planning, taking a half day off to go with me to doctor appointments isn’t that big a deal. I still can and do drive, but when I see my doctor now, it’s often to adjust my DBS settings, which have both immediate and longer-term impacts. So we all feel better knowing I have someone with me, just in case I don’t feel up to a potential 90-minute drive home alone.
In addition, neurology is one of the most understaffed specialties in the U.S. right now. Many states barely have any neurologists, let alone an MDS (movement disorder specialist) within neurology, such as the doctor I see. Growing acceptance of—and more important insurance payments for—telehealth is an important factor in getting more people the help that they need. I have connected with many people who have PD. Many either don’t live near specialists, or can’t get transportation to see them, or don’t even know such specialities exist. Connecting people to the right specialties, especially when they get life-altering news like, “You have Parkinson’s,” is key not only for comprehensive treatment, but also for your overall attitude and ability to mentally fight PD.
When I met my current neurologist, she said at the end of our first appointment,
“You’re too young and you have too much to do, and we’re going to make you feel a whole lot better.”
Just being surrounded by that kind of attitude couldn’t be more important. She didn’t make false promises and she didn’t say it would be easy. But I knew from the very first moment that she was going to be a fighter on my team. Can you say to a teammate like that, “Nah, I’m not gonna do my part”? No, you can’t.
During my appointment this week I had my DBS voltage adjusted. (I still love saying that!) We tweaked the stimulator in the right side of my brain by .1 volts, which smoothed out my gait and arm swing on the left side of my body. We tested going somewhat higher, but for now the stronger current actually shortened my gait. There’s so much unknown in deploying this high-tech, science-powered thing in my head! While there’s an immediate result with any setting change, the full impact seems to take three to four days to “settle in.” But so far so good. I don’t really feel anything significantly different, although I’m typically a little tired for the next few days, especially after a large adjustment. Yet when I pay full attention, I do notice a bit more fluidity in my overall movement.
One huge benefit when my husband goes to appointments with me is that he often notices things that I don’t on a daily basis, and can bring them up with the doctor. After every incremental voltage adjustment I have, he eagerly watches my “runway walk” down the hall, and offers feedback to me and my doctors. When they asked him how I was doing in general, he replied that the scale of my doing “good” now is on a whole other planet from my pre-surgery years. Now an issue we’re addressing and trying to change is the length of my gait, and not, “She can’t eat because she feels awful.” This is a welcome adjustment as well, and my doctors have said how pleased they are with my improvement and my quality of life. I’ve made a lot of adjustments, and there will be many more, but for now, they seem to be headed in the right direction.