Helping Those Who Care for Parkinson's Patients
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Happy Mother's Day all. So I got take out for breakfast for mom on Mother's Day. She had biscuits and gravy, which I thought was safe because she's had it before without issue, but maybe the gravy had too much protein. She crashed into "off time" about 11:30 and just came out of it about 4:30. (She was also complaining of constipation, which I have thought in the past might cause her medicine not to absorb evenly, but I don't know if that is valid or not.) It was pretty severe "off" time--her face drooping, anxiety up, obsessive (although very slow) behaviors, sweating, freezing up, and leg tremors I haven't seen this bad before (generally her tremors are very minor in off time, if at all--she mostly just slows to a near stop in all movements, and seems in distress). It reminded me a lot of how she was in 2015-16 when having withdrawal issues from other medications causing her Parkinson's to worsen (temporarily, but for about a year), but now she's not having secondary issues (unless constipation was affecting her)--it was just worse today for several hours. I called about the Deep Brain Stimulation consultation appointment being moved sooner from July 14, but apparently there is a backlog now due to the Covid-19 closure. She said our July 14 appointment is locked in, though, and maybe we could get a June appointment--or do an online appointment maybe--but it is uncertain right now. (At the moment I'm thinking it would be best to do an in-person appointment. Jumping from an online appointment/consultation to a minor brain surgery procedure makes me nervous, no matter how routine it is.) The DBS is really my last hope for some semi normal years for her (and probably me, her son) going forward. They say it turns the clock back 10 years on the disease, which would be great. Her neuro has been mentioning it for the last 4 or 5 years, but her symptoms weren't bad enough to consider it. Now seems the right time. (If she's even worse in a year, I don't know what I'm going to do.) I understand it is not appropriate for everyone--her neuro actually told her 5 years ago she wasn't a candidate due to her withdrawal problems--but now he thinks she's a perfect candidate. There are some amazing videos on youtube. I really hope it works for her. (She's now walking around the house with no need for her walker, and seems fine except for her verbal tics and some dyskinesia from the sinemet. A completely different person from 4 hours ago.) |
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May you soon find peace. You are an amazing son. I agree with your statement about seeing the neurologist in person. I have my own first Zoom meeting with a cardiologist on Monday, and it seems odd. Carl has his first Zoom neuro visit on the 21st. Seems a good way to communicate, but I prefer the human contact.  Good luck! |
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We had our consultation for Deep Brain Stimulation today in Seattle. The neurologist is concerned mom may have Multiple System Atrophy, in which case DBS would not work and probably make things worse. But the neurologist just isn't sure right now (whether it's actually PD or MSA-P), so we're getting at least three more tests. An MRI, a cognitive/psychiatric test, and a test to see her symptoms off her meds. I've been scouring the net since I got home, figuring I must be able to find some clues and make some possible connections that we didn't make during the appointment. Differentiating between MSA-P and PD seems to be sometimes difficult for the best doctors. So far I've found that MSA-P (that most mimic's Parkinson's) is characterized by a lack of sweating. Mom has terrible sweats randomly all the time. I've also found that olfactory (smell) dysfunction is much worse in PD than in MSA-P, and mom's sense of smell has been notoriously bad for years. Lately she's convinced she can smell fabric softener throughout the house, especially (and maybe only) during her "off" times. (But when I burnt a pot of noodles on the stove recently, she smelled nothing. Although she does randomly smell smoke that's not actually there once in a while--has for years--and I read something years ago that said that was common in PD.) On the other hand, constipation and bladder dysfunction are hallmarks of MSA-P, and mom has both. However, she's had bladder issues for 50 years, and constipation is common not just in PD also but with many older people (bladder issues also). (She is also on some pain pills for her back, which also cause constipation.) One article I found said it is one of the early symptoms of MSA-P, but mom's incontinence has become a bigger problem only in the last couple years (she was diagnosed with Parkinson's 10 years ago). And to make things a bit weirder, mom usually urinates quite a lot throughout the day. But she drank much less and made it 2 and 1/2 hours on the drive (I did stop twice to try to find a bathroom for her just to be safe, but it was difficult with Covid-19, etc). She made it 3 hours by the time we parked and got into the hospital. She went again a few hours after that before heading home, and made it two hours home in the car with no stops. So two bathroom breaks in about 8 hours. (Her frequent urination almost always occurs when her "off" time is worse, but for whatever reason, she didn't have much off time today. AND she didn't drink nearly as much.) If anyone has any insight into MSA-P vs PD, let me know. For the most part so far, my research says its pretty hard in some cases to tell the difference. Apparently the new neuro thought mom fell into this category. At least for now. |
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Sending you and your mom good wishes. I'm following your updates with interest. My husband has an appointment next month to start the evaluation process for DBS, We had a virtual visit with the movement disorder specialist and she thinks he is a good candidate, except for the fact that he has a fair amount of hallucinations. However, he is always aware that his hallucinations are not real and she thinks that the high dose of Ropinerole (Requip) he is on may be triggering them. She has him on a long tapering off schedule over the next few months to see if lowering the dose might decrease the hallucinations. Reducing his dose is giving him more problems with his gait and he's taken a few falls lately, but he thinks it is worth it if it helps him qualify for DBS. |
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Thanks. At this point I feel like I may be reading tea leaves--and of course I'm biased in hopes it is Parkinson's and not MSA-P, so that she can indeed get DBS--but I still am confident she has Parkinson's. The nurse at our appointment told us that they could definitely help us (which I took with a grain of salt anyway before actually talking to the doctor, but my sense is MSA-P is rarer not just generally but also specifically in their office than Parkinson's, so this may be why the nurse said this). When the doctor said it may be MSA-P and it would probably show up in an MRI after 10 years, I asked, "But even if it doesn't show up, it doesn't necessarily guarantee it is not MSA-P". She paused, and gave a reluctant, "Yes," which in retrospect tells me that is technically true, but unlikely. (She seemed to want to say this, but held back. They are probably trained to not be too definitive about a diagnosis before gathering more info, as I can imagine angry patients and families if diagnoses do not go as hoped.) Moreover, mom's neurologist in town has been suggesting DBS since we started going to him five years ago (at first he said she wasn't a candidate, though, as we were still weaning her off lorazepam--but she's been off completely for two and 1/2 years now). He told us the doctor in Seattle may want to see her without her meds, and may want an MRI. So again, in retrospect, this tells me he already knew they would want to rule out MSA-P...but it also tells me that he already ruled it out for himself or he wouldn't have told us this is a good option. (And his judgment so far has been spot-on, and better than any neurologist she has had so far.) This also suggests to me that these tests MIGHT be routine screenings before DBS, as they do not want to make a mistake. The other differential symptoms in terms of dementia (mom has a little), smell (misidentifying, intense smells that are only mild or nonexistent, and sometimes not smelling), sweating (sweating profusely at times) all correlate to Parkinson's and not MSA-P so far as my research can tell. I also looked at some vids of people with MSA-P on youtube, and to my eyes it seems they have something very different than what my mom has. Still, there seems to be variation in symptoms both in MSA-P and Parkinson's, so the neurologist has to be very careful. |
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| I really feel for you Grey eyed. Trying to figure out what to do for these patients is so very very difficult and sometimes the doctors seem reluctant to say ANYTHING. They seem to hold back. Anyway, my PWP hubby had the DBS in 2017 ...it is designed to reduce mainly the tremors. It has worked for him and now we have to go in for a 3 yr follow up. His right arm tremor is gone. Still has the cognition issues. DBS doesn’t help with anything but tremors although it DID seem to help his chewing ability a little bit. |
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| We've been told DBS will get her to her best "on" time now, but consistently. She doesn't really have tremors on her meds, but she does fluctuate from dyskinesia/"running around" to "off" time (slowing way down, drooping face, anxious, obsessive). In between (which is about 10-20% of a day on average, but spread out randomly) she is almost completely normal or completely normal. Yesterday she walked into the kitchen about 5pm as smooth as could be, microwaved a cup of tea water, etc. I told her that she had no visible symptoms at that moment...and she started complaining about aches and pains, lol. I really hope DBS can get her to that "normal" state all the time. She might actually be able to go to the store or shopping--or anything besides doctors appointments--again. |
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@Daytoday I don't really have any news regarding mom's DBS as we still have a couple more follow up appointments next month before we are ok'd for the procedure. But I was wondering, can your hubby eat protein now without much problem? Mom used to be a little worse after eating protein, but now any protein over 5 grams tends to make her "crash" into off time. Pretty much any chicken, turkey, or beef causes her to crash. Just wondering. I've searched and searched the net, and can't find anything about this. |