For those who care for someone with Parkinson's disease
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I will try not to write too much for my first post. My mother was diagnosed in 2010; my dad has PTSD from Vietnam, heart issues, diabetes, but physically he is doing very well right now (he even goes for walks daily). So in 2010 I moved back home to look after both of them. Mom also has pain issues from slipped discs. They've tried several medications for her pain, but all either didn't work or caused severe side effects, until they settled on Oxycodone 5/325 4 times a day. A couple of months ago they tried to increase her dose as she takes 4-5 hours to get ready to go to the doctor, and by the time I get home from work to take her she's exhausted and anxiety ridden, so they tend to think her pain is generally worse (lately I think I have convinced them otherwise--she definitely has pain, but the way she presents at the appointments are not the way she is most of the time). She started fainting several times a day after 6 days on the higher dose, so we went back to normal. She was still fainting every day or two, so I cut back on her muscle relaxers (norflex) until we were at zero. Still, there was some fainting, mostly it seemed orthostatic hypotension that she had had before, so I bought some "thermotabs" (salt tablets) and gave her one of those at 7AM since most of the fainting was in the morning. Finally I started giving her half a cup of water with three shakes of salt in it and a bit of gatorade to drink before getting up. Trying to make long story short, she fell a week ago yesterday, her anxiety spiraled (she's on ativan, but we have been weaning off of it for 2+ years at our neuro's order) and demanded to go to the hospital. She had a bruise on her tailbone but otherwise the x-rays were fine. That's when I added the salt/gatorade, and she didn't fall AT ALL (and had a great week)...until yesterday (from piecing the story together, she tripped and but didn't faint). At which point she had another anxiety attack and called the pain clinic (it was closed), her brother (he can't drive), and her other brother/sister in law (they know she has anxiety, etc) because dad wouldn't take her to the hospital as we have been through this so many times before (the hospital says nothing is wrong and sends us home). The sister in law called me at work, telling me mom had fallen and was crying and very upset. So I called home, calmed her down a bit, assessed the situation, and told her I would be home in a few hours (she wanted me to leave work and come home, which I have done many times before, and it turns out to be nothing but anxiety). She again only seemed to be having an anxiety attack. It took the afternoon and most of the evening to get her calmed down, but I did it. She had no marks on her back at all (last week she had a small bruise on her tailbone). This morning so far she seems a bit sore, but no hysterical crying, and she's calm. Now her brother and sister in law think I should put her in a nursing home, as they both got very scared from her phone calls. But this wasn't even the worst day in the last 2 months, and it was only about 20% as bad as the worst day in the last 5 years. Moreover, this week has been the best week she's had in months. She was walking more, doing more for herself, etc (we increased her sinemet to 5 times a day a month ago--the doctor made the prescription for an extra fifth dose so we would have it whenever we need it) and it has helped a lot. Anyway, I'm just feeling like I'm moving mountains and working miracles (and this was a minor miracle) and family members are telling me to give up instead of being supportive. I don't even know what to say to them to understand my situation or the disease. I told her brother she was doing far too well to qualify for a nursing home. |
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| Hi and welcome to the forum. A lot seems to be going on with Your mom. I'm surprised at the amount of painkillers She is on, as a rule the more painkillers and the stronger the painkillers the more they make our Parkinson's symptoms worse. However discuss this with Her Doctors to see if they want to reduce any. We are not Doctors here and our suggestions should always be run by the Doctors before any action is taken. Anxiety is a non-motor (non-movement) symptom with P.D. the fainting (orthostatic hypotentsion) is also P.D. as it progresses We lose the ability to quickly regulate blood pressure when sitting from laying and standing from sitting. We have to teach ourselves to take these movements slowly. I hope some of this helps even if only to reassure your concerns are valid and you seem to be puzzling out the problems. Welcome to the forum it is a great place with caring people who will help if and when they can. |
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She had been on tylenol 3 for quite some time several years ago. At one point, she complained to a substitute doctor (for our primary care dr) that her pain was worse, and he suggested stronger pain medication (turns out the sub doctor was 86, and made another huge mistake with her that I will touch on below). She was then on hydrocodone, which seemed to make both the anxiety and pain worse. We ended up going to a Pain Clinic, they tried her on various things (mostly disasters, including a spinal stimulator; of the two wires, one wire fell out of her back and the other migrated so it CAUSED pain instead of preventing it, and on that basis alone the insurance said it was a failure and would not pay for another try) and settled on the oxycodone, which is what she's on now. Her latest neurologist (for last 2 and a half years) told us on the first appointment he didn't like that medication and would tell her pain clinic doctor, but she's on it now, so I feel stuck (only giving her 3 and 3 quarters of the 5/325's per day now). Her new neuro tried her on nortriptyline, thinking it might be better for her pain than duloxetine, but that was a disaster (huge spikes in pain in the afternoon, and severe emotional outbursts, etc). Took me a year and 4 months to wean her off the nortrip, using water titration (only 3 weeks to get on it). Have also been weaning her off the lorazepam for nearly 2 years: now 1.9mg vs. 3.5 at the beginning. She had been on clonazepam for her sleep disorder, but shortly after the 86 yr old sub took her cold turkey off lyrica, she had many problems for months...and stopped taking the clonazepam (no explanation from her except that it made her dizzy at night), ended up in the hospital with withdrawals, where they put her on lorazepam...and for various reasons she stayed on it (I questioned it at the time, but the in home nurse said she thought she should be on even more and told the dr so--who kept her on it, but not on more, until the neuro found out and wanted us to start weaning off). I've been in charge of all her meds since then (about 2 and 1/2 years ago). Anyway, thanks for reading my ramblings. I got really annoyed on Friday when two family members told me to consider putting her in a nursing home. This was literally a very small bump in my road, and I have already told them all that when she gets particularly anxious, upset, or confused, she grabs the phone and wants to call everyone...which is apparently what she did Friday after she fell. I told them to think of it as drunk dialing--but still they seem to think she is like that all the time. I keep telling myself just to let it go. I'm not an angry person at all, but it did make me angry. P.S. When they first put her on hydrocodone, there were periods were she seemed to be acting strangely enough that I suspected she may be taking something else I was unaware of. I searched the house and did find many, many bottles of unused tylenol 3. I have no idea why she was refilling the prescriptions if she wasn't using them; I'm not certain if she was using them secretly or not (I think not as the bottles all seemed completely full); and from that point forward her memory wasn't clear enough to remember why anyway. (Now I keep all her meds downstairs where she can't get them, and only fill "med cups" labeled with times throughout the day, with a e-pill timer that beeps as a reminder when I'm at work.) |
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| Oxycodone is nasty! The oncologist prescribed it for me after my second cancer surgery. As much as I was in pain, the side effects of it made me horrifically sick, which gave me intense pain! I made it through two doses, then quit...never again. You know that it is an opioid, right? As such, opioids work on the brain and the brain issues for a Parkinson’s patient are on-going. I am surprised a PD doctor would not have issues with her taking it. But, as Al said, we are not doctors. Question everything. Get explanations. Do as you feel best. Others are not living your daily life with a PWP...trust your instincts. Good luck. |
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In all honesty, my plan was to try to start weaning her bit by bit off the oxycodone, a quarter of a pill at a time. But then she fell, etc, so that plan is paused now. Previously I wasn't sure the oxycodone was doing much, but I wasn't sure it was doing nothing either. It has helped with her pain after falling in the last two weeks--I can tell with the timing of the doses and the spikes of her pain. But as I understand it, acute pain is different from chronic pain. I am also a bit paranoid about doctors stopping her cold turkey on anything anymore. When the 86 year old sub doctor for her PCP took her off lyrica, her health spiraled out of control for a year. Her neuro (the last one who didn't know much) said the lyrica withdrawal could only last one week, so any problems after that were not related. All I know is that she went to the doctor with minor difficulty walking and "felt awful", so they stopped the lyrica and I spent the next 36 hours straight taking care of her as she was in an altered state (continuous obsessively asking me to put her slippers on, help her to the bathroom, take her back to bed, take the slippers off, etc, etc, and if I didn't she'd start crying--and the ER already told us there was nothing more they could do but wait it out and the doctor never should have taken her off cold turkey). Then for the next year she couldn't get in or out of bed on her own, walk without assistance, etc, so we had to get a caregiver that year before she started improving. All the doctors acted like it was a complete mystery why her health went off a cliff...one day after stopping the lyrica. |