Helping Those Who Care for Parkinson's Patients
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I thought I would post an update about our DBS experience for anyone who is considering the same. My husband began the approval process for DBS back in the summer but it took awhile to work our way through all the various testing appointments for approval. He was also having some mild hallucinations but his doctor believed they were due to his dosage of Requip. Hallucinations or dementia are one of the things that can make you ineligible for DBS, so she wanted him to taper down his Requip dosage, and that took awhile. Finally he was approved and scheduled to have his first DBS surgery (first brain hemisphere) in December and the second hemisphere in January. We got the first one done but then because of the COVID surge, the second one was postponed until March. (This caused a nightmare with his leave and disability paperwork, but that's another story). Once you have all the equipment implanted, they wait about a month for the brain to heal before turning the stimulation on. We finally had it turned on in the beginning of April. The appointment to turn it on was very underwhelming. Usually they test to see which stim location and level works the best by observing symptoms (usually tremor) to see how they improve. But my husband has almost no tremor. His symptoms are more in stiffness and problems with walking, so that's harder to observe and measure. So they gave us a "best guess" setting and sent us home for a month to observe. We walked away feeling a little downcast, but within a few days I started to see improvement. He is freezing less and sleeping better at night, which is huge for me. The month before we turned the stim on, he was waking multiple times a night and needing more medication overnight because he was stiff, or help to turn in bed or sit up to use the urinal. Now he is only up once, a couple of times a week. He also was having more dyskinesia (because the stim is like adding medication) so I had to cut down his meds by about half. So he is now walking a bit better than before, but only taking half the meds, which is great. We still have more tweaking to do to try and get the stim levels optimal. His doc also seemed pretty pleased because often gait/walking issues aren't improved by DBS. (We were cautioned MANY TIMES before surgery that there was no guarantee at all that DBS would improve his walking.) But she thought that since his gait problems have always been pretty medication-responsive, then the DBS might help also, and I think it is helping. So overall, I am pretty pleased. The stim is on all the time so it helps a lot with the on/off cycles (especially with the long off time overnight). The downsides (which may or may not be related to the surgery) is he is having a bit more trouble with word finding, and (maybe) slightly more slurred speech. Otherwise, the cognitive stuff hasn't changed one way or the other - he still has a lot of trouble with memory and multitasking, the same now as before, which we expected. He's had more falls than before, but I think that is more due to underlying disease progression. The surgery isn't meant to improve balance. Actually overall I would say his cognitive issues are slowly advancing, but again not related to surgery, just to the underlying disease. That's where we are right now, and I'm feeling good with it. The next thing that needs attention now is that he has gone back to work after what turned out to be an almost three month medical leave. And to be honest, I think he was struggling at work before he left. A lot of things that he handled easily years ago have now become confusing. And he has more trouble reading now (both his vision and attention are not as good) so it is hard to learn new things. His work made a fair amount of changes while he was gone (including a new phone system) and the adjustment is proving to be difficult for him. If it was up to me I would tell him to try for permanent disability but he really wants to work as long as he can, so....I guess it is up to him and his boss to work out. We just had the second stim monitoring appointment and they gave us some new settings to try. He had to be off meds for 24 hours before the appointment and it was a reminder how much he still needs the meds (he thrashes about in his sleep from time to time but the night he was off meds was the first time I got kicked pretty hard! With his meds back in place and the stim on, that almost never happens. ) So we will keep experimenting with the stim settings and try to optimize. That's the update from here - hope everyone else is hanging in there, too. |
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| So glad for you...that all seems to be going well after the DBS surgery. We went thru it and my PWP is doing better too. He has zero tremor and quit all of the meds for Parkinson’s. He is still slurring (later in the day mostly) and having some new trouble with balance. The DBS was done, both spheres, on same day in Oct 2017. Had to come back for a 2nd surgery a week later for implantation of battery in chest. Getting thru all the surgeries is always tough. Had to go back in 2020 for a new battery implantation and it was a full surgery. Now he is having most trouble with staving off depression. Says he feels like he’s letting me down; has much guilt. Happiness is SO MUCH harder to find under these Parkinson conditions. Just trying to make it thru each day healthy as possible... but SO happy he had the surgery initially and is doing better. That tremor in right arm was not allowing him to sleep soundly so just that working properly is a Godsend. Good luck with your journey & congrats on just getting thru it. It’s ALOT, or at least it was for us. Anything that is out of the ordinary is difficult for us. Traveling is out of the question as far as I’m concerned but he still wants to drive across country, & with our dog! I just don’t think I could do it. Now I feel guilty. |