Helping Those Who Care for Parkinson's Patients
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Just got back from mom's neurologist, and the doctor said that she's had two patients approved through Medicare even though there has been no official announcement of Medicare approving it. So we're going forward to see if they approve mom also (the doctor seemed pretty confident she would be, but hedged a little just in case). We've already set a follow up for June 19th in hopes that it will be approved and delivered to the house by then. The doctor says we will bring all of it to the appointment on the 19th and they will adjust it and observe her for a few hours to be sure it is working correctly. ... The doctor also said that there isn't much more to try for dementia pills, but if it isn't a huge problem we could put that on pause for a while. She said there is Nuplazid to potentially try next (after setting up the Vyalev pump for a while, etc). ... The doctor also said there is new software that uses a scan of the brain to optimize the DBS in ways they couldn't achieve before, so we'll be discussing that more in the future also. |
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| Good Luck Greyed hope everything works out for you (and Mom) |
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Hello, Greyeyed- I am so glad you have found a way forward with this new medicine/delivery system. Keep us posted because we are all rooting for you and your MWP. Anything that can make your caregiving role easier and relieve her of the huge fluctuations in on/off times would be heaven sent. |
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Thanks to everyone. I think the doctor saw the worry (and fatigue) in my eyes, so she was being very optimistic. I'm hoping this works out. ... I've also had the sense that mom's DBS hasn't achieved the best results possible for mom. Don't get me wrong, it's definitely better than without it, and the doctor has made adjustments over the last four years that have helped a lot. But the doctor is basically flying blind in making adjustments since mom will say "yes" to almost all the questions during adjustments. Not *totally* blind as some of mom's responses were useful, but I was hoping there was a better way to adjust it for specific patients. The doctor did eventually use a scan of mom's brain to help her in the adjustments, and there were some improvements, but it has always felt like there is an "optimal" adjustment in there somewhere that we were always missing. Hopefully this new computer program can help with that also. |
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| Things are starting to move. I got a call from the nurse who will visit the house to show us about the pump. I got a call from the pharmacy, and need to give them mom's Medicare number tomorrow (they said it will be approved). I hope this works. The nurse said it should be to our house within a month, and our next doctor's appointment for adjustment, etc., will be June 19th. So far it's the best news we could get. |
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Glad to hear things are moving along for you Greyeyed. We have an appt with neurologist tomorrow. Hopefully he can prescribe something new or change what hubby is on. He's not doing well at all. Muscles are weak, he's fallen several times in the last few days, and he leans to the left when he's sitting in a chair. Even though he's been going to both Physical and Speech therapy for the past two weeks. In fact he has another session this afternoon. He will come over to where I'm sitting and just stand there not saying anything. He may be holding a paper or something in his hand. I guess he just expects me to read his mind and know what he wants. It's hard enough just helping him get bathed, dressed and everything else, but it's even harder when I don't know what he wants. |
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| Ask about the pump and see if you can find out if it would be appropriate for him, etc. It's so new that I suspect some neurologists don't even know about it yet (mom's local neurologist was unaware of it; only her Kirkland neurologist, who specializes in Parkinson's only, knew about it...and she only stumbled upon the fact that Medicare was covering it because she submitted paperwork through the drug company for their assistance program, and instead, Medicare approved it). |
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| I just got a call from the mail pharmacy. It looks like everything will be mailed within two days (pump and medicine). Then we take it all to our appointment on the 19th, and they'll show us how to use it, adjust it, watch her for a few hours...and go home, I guess. Hoping for the best. |
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| The "ambassador" nurse from Vyalev came to the house today. We see the neurologist tomorrow to start using it. They changed our appointment time from 3pm to 1pm, to have enough time to watch mom over several hours. I'm feeling anxious about this since it is a big step. But I also think it will work better than the pills. Now the question is if it will be better right away, or will it take more adjustments. Someone else from the company will visit us on Friday, and we're supposed to see the neurologist again in a week for follow up and possible adjustments. What has me worried is if the initial settings are too far off...am I going to have a hellish week next week? I hope not. Not sure I have the energy for that, but I'll take it one day at a time. |
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| Finally got back a few hours ago. Overall, I think it's going to work, but it will be a few days to see. It has a low, medium, and high setting, but those have to be set by the doctor for the specific patient. It's kind of guessing at first. The medium setting seemed to work after an hour, but after two hours she was a bit dyskinetic, obsessively cleaning around the sink in the bathroom (at the doctor's office), etc. So they moved all of the three settings down (because being too fast at medium made the high setting useless). She was still a bit dyskinetic in the car on the way home (on the new, lower medium), but she was the same for those two hours (which rarely happens, so that's encouraging). When we got home, she wanted to clean the toilets immediately. After half hour I decided to turn it down to the low setting. It's 10:30 and she's still wandering around a little bit, but she seems pretty even. ... Now it's 10:45 and I got her in bed, and she's quiet. The syringe in the pump will run out about 5am, so I'm getting up at 3am to switch it out. Once I figure out how to optimize it on a daily basis, I'll arrange a routine where I'm switching out the syringe and at more normal hour. But I've been getting up in the middle of the night for 10 years to give her pills, so one more night won't hurt. Tomorrow night I may time it so I can actually sleep 8 hours straight! |
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| Update. Last week her Vyalev settings (low, base, high) were all too low. We settled on high all day after a couple of days, and by the end of the week we were doing the extra dose every hour too (it only allows it every hour) and she was still off almost all day Wednesday. We went back for our follow up yesterday (Thursday), and the doctor adjusted all of them up. Today was much better than any day last week, and I don't have to remember pills every two hours (and most days every hour in the evenings she had to take something). I've gotten a full night's sleep every day even last week because she was doing well at night even when not doing well during the day. It actually feels kind of weird to be able to sleep. I still wake up at 4, 5, or 6 in the morning and feel like I forgot something. |
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| Update: we went for another pump adjustment. The low setting was kept the same because it was working well for sleep over night. The old high setting is now the new medium, and a new high setting was added. It took us 3 and a half hours to get home because of a traffic jam, but I turned the pump on high once we got home (she was definitely in off time the last 15 minutes of the trip--I kept her in the medium setting because I didn't know how she might react to the new high setting). But after a half hour she was better, and an hour later she was doing very well. The whole evening was so much better than in a very long time. Not perfect, still some hallucinations, still some confusion, but she was in a good mood and I finally felt like I might be able to catch my breath. I guess it will take a few more days to see for sure, though. But right now I'm feeling good about it. |
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| Good Greyeyed glad to hear it. |
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| Friday was a mixed bag. I had to press the extra dose button 6 times, and she was very off by bedtime (and she had more hallucinations in on time). I'm suspecting she needs the 9mm needle (which they've ordered but we haven't gotten yet) and not the 6mm. I fear the medicine is not absorbing evenly into her body and that is causing at least some of our problems. When I asked about this a couple of times, I got vague answers. I think it's a combination of them not knowing for sure, suspecting it will probably work better with the 9mm, and fearing we may either quit now or put too much hope in "yes the 9mm will work better" and then it might ultimately not work better. So they leave everything vague. All the literature says the average number of adjustments is 3.5. We've already had 3. But the company literature says a few days or weeks to adjust, while reading more seemed to suggests weeks more than days. I've been researching patient stories but it's hard to make heads or tails of them. I'm just going to keep trudging on, I guess. |
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| Well, today was the first good day (pretty much all day) with the pump. I had to push the extra dose button every hour from 10am, and give her 1/4 sinemet every hour from 10am also (in addition to the pump's current high setting). Suffice it to say I think they need to turn the pump up even more. But the doctor is on vacation for two weeks. At least I'm off for the summer and can deal with this if I have to for the time being. I think the nurse and doctor have been reluctant to turn it up because mom's current high setting is higher than any of their patients so far (according to the nurse), but A) I thought that is a big reason the pump was developed is to supply a higher, steady dose to people with advanced Parkinson's, and B) their office has only been prescribing this for a few weeks, maybe two or three months (at most). Somebody has to have the highest dose, so it might as well be mom. It's not like she has the highest dose of anyone in 20 years or something. Anyway, it's been a rollercoaster so far. (Yesterday I was feeling hopeless, but today I just took the next logical step with the sinemet and it worked. Or at least seemed to.) If I didn't have the summer off, I don't know what we would do. |
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| I'm pretty frustrated after our appointment yesterday. Between the red tape, miscommunications among the doctor, the mail pharmacy, and Medicare, mom will run out of her pump meds on Sunday and won't get a new shipment delivered until Tuesday. I was afraid this would happen from the beginning, but everyone involved assured me that it wouldn't. The Vyalev reps, the doctors, etc., said we would waste some medicine so we wouldn't have to change syringes in the middle of the night, or at other inconvenient times, and that was fine. Nothing to worry about. I ran most of the syringes to nearly the end anyway since I am off for the summer, and it still didn't last to the next shipment. I also got annoyed that the mail pharmacy called me in the car (I have that voice interface thing on my car). I told her I was in the car but could give her the info, she asked for the same info they already called about 12 days ago, then after telling me there would be at least a 2 day gap in treatment because FedEx doesn't deliver on Saturday, she asked me if I would take a satisfaction survey. I said ok, and then it was a robot asking me to press 1 for yes or 2 for no. I was driving on the freeway!!! Anyway. I was very much feeling like mom was not fitting in the neat, mindless boxes everyone had already set up. |
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Hello-so sorry to hear of the shortcomings of the system and the fact that communication on easily anticipated issues fall on deaf ears, or ‘does not compute’. You are doing a monumental job- NoMatterWhat |
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On the good side, she did pretty well today. Mild off time in morning, a bit slow but ok until about 3pm. She was slow enough then that I started giving her the 1/4 sinemet every hour, and pressing the extra dose button every hour again on the pump, and from about 4pm on she has been doing pretty well also. Hopefully they can continue to turn it up. Everyone seems scared to turn it up since the setting is so high, but she's had Parkinson's for 15 years, got DBS four years ago, etc., and I thought the whole point of the pump was to treat people with advanced Parkinson's. ... Anyway, hope tomorrow goes just as well, then I'm out of the pump meds and have to switch back to the pills for two and a half or three days. I'm not looking forward to the transitions because they never seem to go as planned with her, but wish me luck. |
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Hello, Greyeyed, Hoping you and your MWP have made it through the end of the pump med, onto the pill meds and back onto the pump meds. You are doing an amazing job. NoMatterWhat |
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| Yes, it was a little bumpy though. Going back on the pills was pretty seamless--I just stopped the pump at 6am on Sunday, and gave her the Rytary at 7am, and those three days were basically the same as when she was on the pills regularly (maybe a little more off time here or there, and a little more dyskinesia here and there). But going back on the pump was very different. She didn't need any extra doses or quarters of sinemet Wednesday, which I first guessed was from the new 9mm cannula (the needle attachment that goes through her skin--they started her on the standard 6mm, but the meds were pooling some under the skin). So Thursday I tried the medium setting since she did so well on the high setting Wednesday, but Thursday about 2pm she just crashed into off time and we struggled to get her back on the rest of the day. Friday I went back to starting on the high setting, and pushing the extra dose button and giving the extra sinemet quarters almost every hour. She finally did take off later in the evening trying to clean everything in the kitchen. The doctor sent a message back Thursday also saying we'd need to go back next week if she continues to need the extra quarters and extra doses from the pump. Anyway...I increased our caregiver hours from 4 to 6 hours weekdays, at least for a while, because I'm exhausted. I was exhausted at the end of the school year, and the first two weeks on the pump were pretty bad. I've been wanting to set up my tent in the back yard for a kind of "vacation" for an hour here or there, but I haven't even been able to do that. Soon though...maybe. |
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Need to vent a little. Mom's doctor returned from vacation. She thinks we've gone the wrong way in increasing her Vyalev, turned everything back down and wants me to use the extra sinemet quarters and extra doses sparingly. She said our settings and extra sinemet and doses amounted to 3 times what mom was on with Rytary, and too much can paradoxically mimic off time. If I understood her correctly, that much carbidopa can actually block the levodopa from getting in the brain. ... All of my experience and intuition tells me this is wrong, but her doctor is EXTREMELY bright. I voiced how I was concerned because the two weeks on those settings at the beginning were terrible. The doctor said they might be for a while. When I asked how long that might be, she said weeks. I told them that I already increased the caregiver hours to 6, and that I go back to school in 4 weeks. I would like things to be stable enough by then, but I got no guarantees and she said we could always just go back to the pills. I was feeling a mix of anxiety, anger, and hopelessness. (This possibility wasn't presented by anyone before we committed to this. Maybe it's rare, whatever, but I feel like I've jumped off a cliff by accident.) ... But we're going to try it. The nurse adjusted the settings and left mom on the new high setting, which was quite a bit lower than the high before. I gave her no more extra sinemet today, and no more extra doses from the pump. When we got home, I turned it down to the "base" or medium setting. It's been nearly 4 hours, and she hasn't crashed into off time like I suspected. I have no idea how tomorrow will be if it's on a lower setting all day. And now I'm wondering if the last 5 weeks will count as "time served" toward a lower dose working better. Anyway, my worst fears weren't realized in the first four hours, so maybe this will work. Edit: we're almost to 4pm the next day, and she is still mostly doing well. Not terribly energetic, and a couple of 20-30 minute periods that looked like off time, but otherwise even and glimmers of a good mood. What do you know? Listening to the doctor actually works. |
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I hope you can get the "highs" and "lows" straightened out. My HWP has done nothing for the last few days but sit in his easy chair since getting out of the hospital. He will be getting home PT starting Monday, thanks to the Home Health folks. Hopefully that will help to get him stronger and more motivated. |
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| Still seeing slow improvement. The pump medicine is clearly getting more effective over time, presumably as she adjusts to it. She got out of bed on her own last night again, and was restless to get up this morning. She wanted to try to take a shower, and was moving a little fast anyway, so I unhooked the pump. It has a little plastic "plug" to use when showering, and another plug to go on the end of the tube to keep the medicine from hardening up. They say the time limit for disconnecting is 1 hour, otherwise the medicine can harden and may not go through the end of the tube. And presumably you don't want to miss more than an hour of medicine anyway. In any case, she was done in 30 minutes, I hooked her back up, and this was the first time there didn't seem to be any negative effects from disconnecting. Anyway, I think things are improving, although it was pretty bumpy at the beginning. I kind of think there may have been some withdrawal symptoms from the Rytary and sinemet also, but no one mentioned that to us earlier. In any case, I think we're through the worst of it. |
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| I have no idea if I should feel good or bad about the pump right now. I think she's slowly improving, but today wasn't a great day. 6-8 hours of somewhat slow, somewhat distressed. Not terrible. But certainly not "on" time, at least not how "on" time used to be on the pills. Everything with the pump seems...different, I guess. (My brain and emotions are filled with how the pills worked over 15 years. But this isn't the same.) She's doing well over night. Maybe a little too well because she sometimes gets restless around 5am and wants to get up. But then I have to get up to change her briefs, help her get dressed, yada yada yada, and I don't want to randomly be getting up at 5am. I messaged the doctor that maybe she needs a lower setting for over night, but the doctor said to stay at the current settings and keep pushing through the ups and downs, as it were. She doesn't really have many ups per se. During the day the doctor wants us to keep using the base (medium) setting, and avoid the extra dose buttons and sinemet if we can, which I have been avoiding. Sometimes if it feels like she is far enough "off" for me to try the extra dose button, I do, but most of the time it doesn't seem to do anything anyway (the doctor has it set pretty low). I guess it's mostly a waiting game. A few days ago when she was doing better, I asked her if she wanted a birthday gathering on the 23rd, and she said yes, so I invited some people and was feeling good about it. Today was not great, so I hope she's better in two weeks. Anyway... |
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| I'm finally starting to see (mostly) a pattern of response with the pump. Yesterday I thought I might try turning the pump off for 3 minutes every hour, simulating a slightly lower setting than her base (medium) dose (I did the math), since I was guessing that a slightly lower-than-base dose might be the right direction. She did do better for 4-5 hours. Later, about 6pm, since she wasn't doing very well anyway (seemed like maybe the dose was too high), I thought I would just try her bed time settings (DBS and low setting on pump) since the night before she went to bed at 8pm (the time I set her bedtime settings also), and by 9pm she seemed even and fine in bed. I checked on her at 11pm and she was the same. So yesterday when I set everything lower at 6pm, by 7pm she was doing really well. By 8:30 she was going into the kitchen on her own. I ventured to ask if she wanted to try her exercises, and she said yes. So we did her leg exercises by the sink. Today I tried to keep that low bedtime setting all day. She did seem to crash into off time around 9:30am. I pushed the extra dose button, and that helped. More mixed results throughout the rest of the day, but this evening she's also doing well again. I think it will just take time for everything to be ironed out. I go back to school next week. And I'm actually planning a birthday party for her Saturday next week. I hope all goes well, but it if doesn't, whatever. I can only do my best. |