Dry throat and mouth

[Fifisamra]

I have been reading the posts on these sight for a while now and I find them all very informative also everyone here is so caring it warms my heart.

My mum has been diagnosed with CBD over a year ago although I think she has had the condition for the last three years

What I have noticed recently is that she has been complaining of a dry mouth and throat and is constantly drinking water. Is that a common feature of CBD? Has anyone else experienced this? Would be interesting to know as with this condition everything is uncertain!

She sometimes also coughs a lot or chokes on her food or drink!

This condition really scares me!

Many thanks

[Kevin_1]

Hi Fifisamra

Sorry you have need to be here. But, welcome.

My Liz has the dry cough - we don't know why and no-one has been able to explain it to us. So hopefully someone here can say something.

As for the choking. With PSP/CBD the swallowing reflex becomes slowed and food and fluids can 'go down the wrong way'. If it goes well down into the airway its called aspiration and than can lead to pneumonia later or when the sufferer is weak. I stress the later on part.

Earlier on it is merely a bit of food that gets tangled in the epiglottis - the flap of skin which closes the oesophagus whilst we eat. We cough / choke to clear it.

There are drink thickeners (just stir them into any drink) which slow the fluids as we drink and give the epiglottis time to close. Soft food helps too (later on).

A referral to ENT (Ears nose and throat) or the local Speech Therapy department might be helpful to you. It was just such a referral which led to us getting the advice I have written up here. Always best to things checked professionally I think.

I do hope this helps - Its just our experience.

Best

Kevin

[Fifisamra in reply to Kevin_1]

Thank u Kevin

Very helpful info

Mum is at the early stages

[Kevin_1 in reply to Fifisamra]

No worries

I forgot to add - If you are in the UK you can get the drink thickeners on prescription. Great if you get free prescriptions (which all PSP/CBD people should - just ask the GP).

[easterncedar]

welcome, Fifisamra. Sorry your mother has CBD. My guy has psp, so I don't know if your mother's symptom is specific to CBD. Many many medications, including ones he was prescribed for psp, for depression and for incontinence, cause dry mouth, and that has been a problem for my sweetheart at times. Very uncomfortable for him. He has gotten some relief using the mouth wash called "bio-tene." It's commercially available here in the US. I would look at your mother's medicines, too. Perhaps they could be adjusted if that is the cause.

If your mother is able to respond to therapy, I would suggest that a speech therapist might be able to suggest tactics and exercises for safer swallowing to prevent choking. Learning to be more mindful while swallowing has kept my guy eating normally in the five years since he was diagnosed, although the problem is coming back now. The therapy was particularly effective in the beginning.

That said, we all spend enormous amounts of time and energy chasing these awful symptoms, and there are no real solutions for most of them. Good luck to you. And warm wishes. Ec

[Fifisamra in reply to easterncedar]

Thank you very much for all this useful info

[pzagy]

Hi Fifisamra

My mother in law also has CBD and YES the constant dry mouth is normal. We have tried mints, sprays, medication and a slew of other things and nothing works. SHe has had a water bottle beside her for the past 5 years and if it is not there all hell breaks loose.

There a 2 contributing factors which cause this. The first is the medication whether it be for anxiety or sleeping they both cause severe dry mouth. Secondly, CBD, her brain is not telling her throat to swallow any more, the same way it is not telling her eyelids to blink and her legs to walk. By not swallowing, she is not producing saliva and therefore her mouth is constantly dry. That is how is was explained to me by her specialist.

I am curious, since there are not too many people on here with CBD, does your mom have anxiety? Can she sleep at night without meds?

My mother in law started her journey with CBD about 7 years ago but was only diagnosed last year in May.

[AliciaB in reply to pzagy]

My husband was diagnosed this past December with CBD and he has dry mouth. He is constantly clearing his throat and coughing. Thanks pzagy for the info from your specialist. I have tied to find out more from our doctor and we have not gotten a referral for a specialist yet even though he is hoarse all the time now.

[pzagy in reply to AliciaB]

Hi Alicia

Mo mother in law was exactly the same, always clearing her thoat and drinking water. Unfortunately, the specialist will not give you too much information. I have received more information from this site and through m own research. We left the appointment from the specialist with a sheet of paper (copied and poorly at that) and a follow up appointment. They asked us if they could follow her progression.

I dont think we will be going to any follow up appointments however, they can't do anything for her. I do however e-mail her speicalists assistant with weekly or monthly updates.

For now, we are just trying to keep her moving, it is tragic that this disease takes everything but their minds. There are days that I pray she looses her mind and is not aware of what CBD is doing to her.

Hugs

Paola

[AliciaB in reply to pzagy]

It helps to have people to talk to about this... you are right it is tragic that CBD takes so much. I almost think it would be better if they didn't have their minds and didn't know what was happening. My husband can not seem to accept the diagnoses. It could be because his parents and brothers won't except it (they talk to him daily). Instead they blame me for him not working, sitting at home doing nothing all day, not going anywhere, not driving, the list goes on and on. I guess it is easier for them to blame someone instead of accepting the diagnoses.

Thanks, Hugs!

Alicia

[Fifisamra in reply to AliciaB]

You are right the fact that their mind is all there makes it so much harder

My mother finds it so hard to accept and she is in denial

We had to get her a full time paid carer as her falls are becoming frequent and we can not leave her home alone

She has been staying with me for the last month since her last fall

She is in a foul mood at the moment as she is moving back home tomorrow with the carer and is v anxious about it

She thinks she can still live alone!!

I do hope she does not suffer too much and would rather she missed out on all the suffering it entails!

[AliciaB in reply to Fifisamra]

I understand the anxiety. My husband says that each day seems the same kinda like the old movie Groundhogs Day. He wakes up and is anxious every day.

I pray my husband will be spared the suffering and loss of dignity as well. He has already suffered so much and we are still in the early to mid point of this nightmare.

Good luck getting your Mom back home. May you have a little peace in your home.

[pzagy in reply to AliciaB]

Don't bother with the extended family, eventually they will get it. How can they blame you!!!!!!! Have then come to a specialist appointment and listen to what they have to say.

In our case my brother in law, the resident geneous, blames my mother in law for her being sick. He says that she brought CBD on because of her anxiety. Have you ever heard such BS!!!! Anxiety is one of the symptoms, but heck, who am I to challenge a geneous.

[Fifisamra in reply to pzagy]

Hiya

Thank you for the above

My mum takes no medication apart for amytriptiline for night time to make her sleep better

She has about four water bottles next to her!

She can swallow still although she coughs and sometimes chokes

She also constantly clears her throat

It is a horrible condition and it scares me when I think what is ahead!

I believe mum had this condition for the last 3-4 years but in the last year and half it has really deteriorated

She has had five falls this year her balance is awrful and so is her speech

Her cognitive side is also bad as she can no longer write

We have got her a carer full time to be with her