Does anyone have experience of parkinsonism post ABI? We have had quite a rapid decline since my husband's discharge from hospital. His speech is completely unintelligible, he has started losing bladder control and various other things. I understand there may the implementation of a drug coming up, which may help. I'm mainly concerned about the fact that this drug may not as it's highly experimental in the treatment of those with hypoxic injury.
Bit garbled apologies but it's so early, kids, dog and the like!
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ored13
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Hi Ored, sorry to hear of your husband's decline. I cannot offer any help as such but would like to keep in touch as my husband who is still in neuro-rehab at the moment is displaying symptoms of Parkinson's Disease or Parkinsonism and is hopefully going to see a neurologist soon to be diagnosed. He takes antipsychotics which can cause Parkinsonism apparently. Is this the case with your husband?
Sorry to hear that the drugs which are meant to help are causing these issues. My husband has a severe hypoxic injury. They are calling him "complex" more than I would like to hear. His parkinsonism stems from damage to his basal ganglia for the main part...I think. He has problems with slow movement, rigidity and speech. We can absolutely keep in touch, that would be great.mive followed you on here. Let me know how you want to stay in touch. I've had a little look at your 1st post so they do sound similar yes. So it's the antipsychotic drug and not any damage to the brain causing his parkinsonism? Has your husband been in rehab for a year?
Hi Ored, they have said it could be damage to the brain, or Parkinsons Disease, or Parkinsonism caused by the drugs. He has never had an MRI scan on his brain so I'm unsure of where the damage is to be honest but it could well be the same as your husband. He has been in hospital, then neuro-rehab for 18 months now. He is improving slowly though and the anti-psychotics have helped loads as he has had severe anger/agitation problems amongst other things and now he is much calmer. He also has severe memory problems and lots of confusion which doesn't seem to be getting much better over time. He is having his first home visit tomorrow for 4 hours. In relation to the Parkinsonism he has a slow movement, shuffling gait, cog-wheel rigidity in his wrists and muscle stiffness. His speech is fine.
Ah I see. My husband's community therapists have requested a new neurological assessment and some more scans. His injury occurred early December. There are many question marks as to whether or not his assesments were done correctly due to covid and the like.
I can't believe there is so little neurological input in brain injury units. It absolutely blows me sideways. I'm so surprised that they have not scanned your husband.
We also have rigidity on the left side. I think it's called *lead pipe". What is cogwheel if you don't mind me asking? How do you all feel about the home visit coming up?
I have been asking for an MRI on his brain right from the start but I suppose at first it was because they didn't expect him to pull through, then they didn't have a scanner that would work with the ventilator etc, there was always a reason... then they said he wouldn't tolerate the noise or be able to follow commands. Lately he has more understanding and is more able to do these things. He had an MRI on Friday on his heart which caused his hypoxia and now they know he can tolerate a scan they may do a MRI head scan hopefully. I believe cog-wheel is small jerky movements in his wrists/arms. The home visit, I'm excited but nervous about how he will take it when he has to leave. He has no sense of time etc so I have to explain what has happened to him, where he is etc every time I see him or Skype. It's tough! How have you managed since your hubby has been home?
Well, it's been hard. I won't lie about that. But I think that is mainly to do with the fact that his discharge was rushed, no decent handover, no training, care package, any of those things. Home visits and all visits were of course off due to covid etc. We have good days, bad days, in between and a mixture of all of those. I sometimes have to live hour by hour if I'm having a bad day. What I find is that it's not him having a bad day. If he is he can sleep and relax etc. It's the days when it just seems like the list goes on forever. I'm not trying to scare. Just I think that was the thing I was least prepared for as we have young kids. Someone always needs something. If I had had a bit of prep, seeing him in our environment, how he copes, how I coped with him out and about or overnight. You eventually do find your rhythm. And then have to change it up again and then feel a bit overwhelmed. I have things that help me cope. Once all settled i have a glass of wine, maybe 2. I've taken up soap making.
I think it would be hard to go back to the hospital and I would also be nervous about that. However he may just be so knackered after the change of scene that he's happy to go back for a rest or looking forward to the next visit?
It's good that they can now start moving forward to having his brain scanned. I wonder how they have been treating him so far without this? Is he mobile? So many questions!😄
Did this parkinsonism specifically start after the medication? It seems to be a field that has little information when linked directly to brain injury, or at least ways of managing it with medication.
Have they considered changing up his medication or are you all just glad that he is just more stable? Ok no more questions!!
Hello! What medicines is he 0n? I ask because my sister was on a vomiting medicine for 5+ months and started to show these symptoms. When i looked up tge drug it wasn't supposed to be used for more than 12 weeks, it caused those symptoms but once i stopp the drug it seems to be clearing up a bit. Hope things work out. The drug was reglan/generic.
Hi. Thanks foe your reply. He isn't on any medication at the moment. When he was discharged his Physio from the rehab unit has said that he was to be weaned off the 2 that he was on. I think this is mainly to do either where the injuries in his brain are. ❤️
My previous name was angech but i lost my account info and had to start another one. Some may know me.
My sister had Anoxic brain injury in january. She never opened her eyes but i got her to squeeze my hand and blink yes or no. Anyway long story short after the first ct was normal, they did eeg which showed diffuse slowing and an mri which showed ischemic and edema changes. They refused to do anything to help her. They treated her for covid even though she didn't have it and used remdesivir which sent her into septic shock and flatlining. They wanted her to die but she is still with us. Since she had no seizures i was able to get her off seizure meds 4 months ago and started amantidine to get her more alert which seemed to be doing good. Now she developed a little tick and spastic movements of her arms once in a while and they thought it was seizures, i don't think so. They loaded her up with a crazy amount of seizure meds and we are at square one.
Here is the thing. She is at a new hospital and they did a ct scan and find hydrocephelus. I feel like they should have tried to help her in January but did nothing. Now they say it is chronic and will still do nothing. How do i know this isn't painful or the reason why she doesn't wake up? They say it is because her brain shrunk and the water comes in to fill up the empty spaces. I have no idea what to do but they say she is probably brain dead because she lost cells. She is not brain dead. She moves, opens her mouth and responds when i touch her. She was beening weaned for 24 hrs for 3 months and they still won't take her off the vent. They won't move her progress forward.
Hi. What an awful awful situation to be in for both of you!!!! Have you had any Hats nurse input from Headway?
When you say that they were weaning her do you mean that she is still intubated or have they given her a tracheotomy?
If you're down south what have those at PALS said? Is there a social worker at the hospital? Why has her brain shrunk? Sorry so many questions. Can they not do something about the fluid? I don't know enough to give you any advice and I'm sure you have asked all these questions already.
We are in NY usa. It has been since January. Technically i have seen ppl lose a pulse for 45 mins and still wake up. The difference with her is they used remdesivir which is a lethal drug and they know it. They say the brain cells shrunk and fluid comes in to fill it up but doesn't cause pressure. I need to find out if it is true. No way to tell. Tks for response. Xo
Bloody hell. That's mind-blowing that it's been caused by a drug who hbthey had given her. My husband was without pulse for quite a while. I would have to speculate but I think at least half an hour.
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