Help with CBD

[Bobbiejo21]

Hi I'm looking for advice. My mum had CBD diagnosed 2 years ago. She had a fall and was found on the floor yesterday morning and is now in hospital. She keeps hallucinating but doesn't have a UTI and she made a really weird rattling noise when breathing but its back to normal now. Is that normal?

[Dadshelper]

The rattling could have been excessive mucus in her throat. The hallucinations have been noted but don't seem to be a direct symptom of PSP, usually a symptom of something else.

There are a few other members who may be able to cover the hallucination issues better then I.

Ron

[Bobbiejo21 in reply to Dadshelper]

Thank u for ur response

[honjen43]

Hi Bobbiejo21. Am so sorry your mum has fallen and is in hospital. You don't say if she broke anything. I presume she was on the floor for a while and may have been cold and damp. This may have caused some mucus in her throat if she was chilled, so may be a reason for the rattle and possibly some disorientation. Other than just falling because of CBD, have doctors suggested any other reason for her fall, such as a stroke or heart attack?

My husband had CBD diagnosed, and died 2016. He did not fall at night, except when in hospital and he was not there long enough to get cold or disoriented.

He did not make gurgling or rattling noises unless he had a chest infection, or when his swallowing was becoming compromised.

We did not have the opportunity to consult with a SALT team, but suggest you ask their opinion on how good your mum's swallow reflex is. Maybe be cautious when she is drinking and note if she coughs or seems to have difficulty, and tell someone! Make sure the food being supplied is suitable and to her liking. I found it took a long time for the message to get through the chain of command and into action!

As for hallucinating, yes, there were a few times when my husband seemed "away with the fairies" or "not entirely with us". Could not put it down to any reason, other than the idiosyncrasies of CBD.

I found that he did not think as clearly, and when a lot of things were happening, he could be confused and mix things up.

Eg. I talked to him about going into a rest home and he seemed confused that someone was coming to stay and there was not room at home for him.

I am certain his ability to think things through was leaving him, as were the ability to read or play Solitaire or use the TV remote.

He continued to open his book and stare at the page for a week afterwards, probably trying to make sense of what he was doing because he knew he had once been able to.

He also told me a story about changing his PJs and falling off the toilet, but that was not the story the nurse told me! I think his mind was making up what he wanted to believe had happened and could not tell difference between fact and what he made up. Yes, he fell out of bed because he needed toilet, but nobody came in time, so he may have been there long enough to 'dream' what he wanted to happen! I didn't ask! Staff are frequently short overnight. Sadly!

There was also one time when I arrived to find he had been sent for an x-ray as the doctor noticed a deterioration. There was no indication on x-ray of any stroke, but I had noticed previously that there were times when he seemed "spaced out", and he was unaware of it, and this seemed to coincide with a loss of some 'ability'.

To me, something like this could account for your mum's fall and confusion. Whether the doctors think the same way may depend on how intimate a knowledge they have of CBD! I found I knew more of what was happening to my husband, living daily with the changes! Just note the changes this time and see if it makes sense if something similar happens again!

I hope your mum comes through this and makes a recovery. Watch out for pneumonia onset, especially if she was chilled or broke a bone.

Talk to her as usual, and give her hugs. She will appreciate them whatever state of body or mind she has.

I know how hard this is for you! Keep fighting on her behalf!

Hugs

Jen xxx

[Bobbiejo21 in reply to honjen43]

Thank u for replying. No luckily the scans show no broken bones and no major changes in the CT scan to indicate any problems. From what I can gather she tripped over her bed covers. Shes saying she slipped on the wet floor in the bathroom but thats impossible judging from what room she was in and the position she was on the floor. The carer left my mum at 9pm and arrived 9am the next day so it could have happened any time in between then. Thankfully she had a dressing gown on. Shes got a few bruises on her face and hands from the fall but other than that she is ok. The hospital done a chest xray yesterday so I'm going to get the results hopefully when I get to the hospital. I'm pushing for mum to go into extra care housing as it would be alot safer for her. She only came out of hospital about 3 weeks ago so it scares me her going home. I'm her full time carer and she has carers 4 times a day but no one there at night time

[LuisRodicioRodicio]

Hi Bobbiejo21!

See:

psychosis - American Parkinson Disease Association Information & Referral Center - Stanford University School of Medicine

Visual hallucinations are the most common type of hallucination. This is where someone sees things that are not actually there. There can also be auditory and olfactory hallucinations. Often hallucinations are not alarming to the person experiencing them.

parkinsons.stanford.edu

Hug and luck.

Luis

[Bobbiejo21 in reply to LuisRodicioRodicio]

Thank u for your response. I will definitely look into that

[StayAtHomeDaughter in reply to LuisRodicioRodicio]

Hallucinations are far more common than most people know! The information at the neurologist office said that between 40%-50% of all patients experience them.

[Northstar1]

How old is your mum xx

[Bobbiejo21 in reply to Northstar1]

Shes 56

[Northstar1 in reply to Bobbiejo21]

Hi my husband is 56 too diagnosed in April 18 symptoms about 2 years before. It's such a shock. He knows the diagnosis not prognosis. He does not want to know, does not go on internet, does not ask consultant.

However I do and wish I didn't....it's absolutely devastating.

I am coming to terms more and more.

Kevin said to me not long ago on this site that it's 'doable'...this thing, this situation.

Strangely it changed my thinking from floundering around to a strength of focus.

We live near Wigan, where are you xx

[LoisMai in reply to Northstar1]

Hi Northstar, my mum lives in Wigan. She was just diagnosed with CBD in Autumn 2017 at only 59. It’s so rare we are finding the doctors don’t know much about it and not got much support from the authorities

[kenh1]

My wife also with CBD throughout the disease has had hallucinations. On only one occasion caused by a UTI.

[AJK2001]

Can you get your Mum an emergency call button or pressure mats round the bed, so at least if she did have a fall she could alert someone with the button or if she wasn't able to get back to bed the pressure mats would alert someone that she hadn't got back into bed. That way at least she would be picked up fairly quickly.

Does she regularly get up in the night? Is it to go to the toilet?

My Mum's situation sounds similar to yours (only she is much older) having 4 care calls and I spend the afternoons with her (this is her restless time, so when she's most prone to have a fall), she lives in sheltered accommodation & was a regular user of the emergency button, we were able to reduce the number falls through a variety of measures - making it clear that if she continued she would have to go into a home & they would most likely catheritise her (she had had this for 6 months, so knew what that meant), persuaded her to wear pads and a medication called Tropsium which soothes the irritability of the baldder, so don't get the feeling that you want to go to the loo all the time. It took her a while to get used to this and we have had periods where she went through a week where she would still try and get up but generally it has been very successful.

Mum also gets occasional "hallucinations", sometimes its because her eyes aren't focusing properly and she is trying to make sense of what she is seeing i.e. the cat on the balcony was a plant pot, other times it's a real hallucination. I think being in hospital and being disorientated makes such things more likely.

Hope she feels better soon. xxx

[Hidden]

Hi Bobbiejo,

My mom had PSP not CBD but l can relate to your situation. Falling was a constant with my mom which led to hospital, rehab & eventually nursing home stays.

Is your mom on a new medicine that might have triggered her hallucinations? With PSP pneumonia was always a worry so be watchful of any weird rattling in her chest. I hope you & your mom have some supportive people to help you with daily needs. Sending hugs... Granni B

[raincitygirl]

Hi BobbieJo:

Just sending a hug for support and strength. My CBD hubby never had hallucinations, so have no advice, but wish you good luck getting your mum resettled. ❤️

Anne G.