Dr. Pinky ended up running late, so we rescheduled the PD study, since it was a two hour intake appointment and they had no way to move us. We're still participating, but we'll have to come back on another day. We felt a little scrambled at having our plans mixed up so thoroughly, but the physical therapist was able to bump us down a bit and the PD study people were okay with rescheduling, so it worked out fine.
At our first appointment we found that B is progressing very slowly, and that's great news. She did want to add a slow-release Sinemet for bedtime to prevent his early morning waking. She verified that his quitting smoking might be the cause of the topsy turvy medication issues we've been having, and did say that some people found that nicotine did indeed have some effect on the absorption of PD meds. She said that they had some patients that used nicotine patches for PD symptoms.
It was really nice to have that observation validated. So many medical personnel are very hung up on the evils of smoking, which I don't disagree with per se, but forget that above and beyond the physical activity of smoking those patients are getting a drug: nicotine, that seems to be working for them in ways they may not be able to put a finger on. When those patients are also taking PD meds and have found a balance that works well for them, to pull one drug out of the teeter totter leaves it unbalanced on one side, and it can throw the whole process off. We found that what we thought was the right med balance for B became wildly overdosed once we pulled the nicotine, and his on/off periods also seesawed drastically where they'd been fairly smooth before. We came to the conclusion that the nicotine was somehow smoothing out and mediating the absorption of the PD meds. Now we have to decide if we want to experiment with nicotine gum to mimic where he was at before, or if we want to leave it alone now that we have smoothed out somewhat. That will be up to B.
She said he was doing very well, even though she saw him during his off period, right before a scheduled pill. He has been having trouble with the low voice since he quit the cigarettes, and she feels that he should see a speech therapist. I'm all for that, but I'm still not sure that this new development is just a new development in the PD and not just a side effect of eliminating the nicotine. I still lean towards trying the gum to see if his voice comes back. Regardless, we do have an appointment to see the speech therapist in four months when we come back for our recheck. I have to say the low voice really disconcerts me and I haven't gotten used to it yet. In our history, he has never had the low voice unless he gets really angry, so it's a cue for me. It's going to take some getting used to if this is just a progressive symptom, as I'll have to rewire the way I think of that cue so that I'm not feeling so defensive.
We saw the physical therapist next. She was a chirpy little thing, and I liked her. She asked him about his 'funky walk', and I hoped he wouldn't take it the wrong way. It turns out that since they work pretty closely with the Booth Gardner PD Center upstairs she sees a great deal of PD patients, and she's well versed in the process. He told her he wasn't interested in 'exercises' per se, and so we worked on ways to stay active in the wintertime when we weren't able to get outside like we do in the summer months. She did a complete exam and said that he was doing exceptionally well for being 13 years into the disease. She also felt he was doing all the right things as far as staying active and keeping a good mental attitude. She wants to touch bases with him again in perhaps a year from now to make sure he's still on track, but said he's the type of patient that will do very well, because he doesn't sit down and capitulate to not being able to do things.
In the end, though we didn't spend much time at either appointment, we feel like we got a lot out of the trip. This set of medical professionals actually work with us and listen to us, and have some concrete things we can do to make our lives easier. We got out of Seattle earlier than we expected, and were even able to make a little side trip to Roslyn (where they filmed "Northern Exposure") on the way home. It was great to find out that B's doing so well. You can't beat good news.
And I think we even found a new place to fish! :-)
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