Very unstable

[Helen119]

Hi, wondering if anyone has experienced their carefored one feeling very unstable while in bed or sitting in a chair. Colin keeps calling me and telling me he is going to fall, while he’s in the middle of the bed, laying down, so there is no way he can fall, this also happen if he is sitting on the commode, his whole body spasms, his legs won’t bend so they are sticking out in front of him so the more he shakes the more he slides off. I can get him to calm down abit if I get him to concentrate on his breathing, but the anxiety it is causing him is off the scale.

Hospice consultant came out to see us, and they are talking about giving in baclofen to try in June when he goes in for respite, but that is so far away, I need help now.

They have put the hoist on hold until he has tried baclofen, as the think it could help.

So I’m left with not even being able to get him into the commode unless my daughter is here, which is far from ideal.

Any advice or ideas very welcome.

Love and hugs to all

Helen xxx

[Kevin_1]

Hi Helen

We had this.

It was explained to us by the neurologist as when that part of the brain that processes the signals from the middle ear, for balance, goes down the brain continues to seek signals for balance orientation. This can result in vertigo, a sense of balance ranging around the possibilities, causing dizziness. If nausea is associated with it then cinnarizine might help with the nausea, but it can cause drowsiness.

I think not all PSP/CBD sufferers have this symptom... I'm unsure.

Liz describes it as the room spinning and dizziness.

Baclofen is most often for muscle issues... Maybe the shaking? Good luck with it

It sounds as if he is having a terrible time. I'm sorry.

I hope this helps a little.

Warmly

Kevin

xxx

P.S. The neurologist added that it was highly likely that as the brain deteriorates further the dizziness stops as that part of the brain ceases to seek balance.

It did stop eventually.

PPS - Sorry I didn't address the care issue... If you are getting CHC make an urgent call for more support. I do hope you are not one of those who is struggling with CHC, wincing I lose track.

If you are not getting it get the GP to refer now. Ask him to make it urgent as you sound like your in an impossible care position with high risks to him and yourself.

[Helen119 in reply to Kevin_1]

Thank you Kevin that explains it and at least I know it could stop eventually, hope it’s soon.

I am not getting or applied for CHC yet.

Only have carers come in 3 times a week to bed bath Colinst the moment, I don’t see what else they could do if they came more, as he does not get up and dress daily, he stays in bed all the time.

Hospice are my main supplier of equipment, they have been brilliant, just this time consultant came out with palliative nurse to see if they could offer anything else, that’s when they decided to try baclofen when he goes into respite end of June. I have just been surprised that they left me with nothing after the hospice OT said a hoist would be the best option, consultant seems to think baclofen, is going to work miracles and that I won’t need a hoist, I can’t see that, but then I’m just the carer.

Pissed off with the situation as it is now is a understatement I just need the problem solved, so Colin can feel more relaxed, he is now talking starving himself so he does not need the commode, and he is saying that that will bring on death, then no worries problem solved!!

[Kevin_1 in reply to Helen119]

It sounds like you have an A1 hospice!

Marvelous.

[Helen119 in reply to Kevin_1]

Yes they are very good, I am very lucky

Xxx

[enjoysalud]

I am interpreting your husband's fear of falling as DIZZINESS. Kevin's answer alludes to DIZZINESS with his wife, Liz. My son suffered from extreme DIZZINESS. This lasted for about a week. I took him to Kaiser Permanente Urgent care (Los Angeles, California, USA). They gave him a prescription for "Flonase". It's a spray you can also buy over the counter. It helped considerably with the dizziness, sometimes appeared intermittently, and after about 4-6 weeks the DIZZINESS went away.

If it is DIZZINESS there is a "Search PSP Association" at the top of the page. I would put in DIZZINESS. You will find numerous shares on DiZZINESS. It's good to use that bar for other symptoms that may come up.

My son, at the age of 55, died of PSP, May 2017.

Blessings, M

[Dadshelper]

Dad used to get episodes where he felt like he was falling or floating when in bed or sitting in a chair. He hasn't had one, that I know of, in a long while.

Ron

[Hidden]

It may well be that being strung up on a hoist would only add to Colin's discomfort. My father used to be terrified of it because of the feelings of loss of balance. Baclofen might help but also make him very sleepy. It is an awful dilemma and so upsetting to see our loved one suffer like this. Part of the course I fear. I do hope it does prove to be just a passing phase. Best wishes.

[Hidden]

Hi Helen,

My brother experienced this and kept thinking he would fall out of bed.

I managed to get him some rails for the side of his bed which made him feel safer and able to sleep.

He is now in a home and sits in a chair most of the day. He keeps putting his foot out trying to push himself back even though he is not going to fall but I've read on here that its all part of the condition. It's a wicked illness.

Take care

Sue x

[Helen119 in reply to Hidden]

Thank you sue, I think I have bed rails coming soon. Xxx

[doglington]

My husband had a degree of dizziness well before he was diagnosed. If fact it was the first symptom he went to the doctors with. He never had it as bad as you describe but it never went away either.

Your poor husband sounds to be really suffering. I hope it is resolved quickly - it can feel like the last straw when you are just managing, I know.

Good luck, Jean xxx

[Helen119 in reply to doglington]

Yes defo the last straw, for me aswell as him, feels like this disease is closing in fast xx

[Marie_14]

Helen

My husband never said he was dizzy but then he never told me how he was feeling. It was really hard to get information from him. He almost fell out of the wheelchair when we went for a hospital appointment. They actually had to lower him to the floor and hoist him back into it! We thought it was a one off until we got into the Ambulance and had only moved a few yards when it happened again!

We were in a really difficult situation and they sorted him out. Only when we were going down the motorway did I realise they had tucked his right foot behind a bar on the seat which one of them was sitting on! I said prayers all the way home. Not sure how we would have got home otherwise though?

After that we got another wheelchair but the fear it would happen again never left me! It is a horrible situation to be in. I am so sorry for you. I hope someone can help. Have you got a community Matron? If so contact her and hopefully she will give you some help. My husband went downhill very fast too. Sad times for you. Take care of yourself Helen.

Marie x

[kenh1]

My wife who has CBD had the same problems not dizziness but fear of falling, particularly if she was lying on her left side. She has been on baclofen for nearly five years. Initially it made her very drowsy. I reduced the dose from three times a day to just morning and evening and this works ok. My allocated palliative care nurse regularly consults with our local hospice who are superb. They prescribed diazepam for use if she became really agitated. I have only had to give it on two or three occasions.