Speech deteriorating

[Fifisamra]

My mother has CBD and the first thing we noticed before she actually had a proper diagnosis was that her speech was slurred and she found it hard to find some words!

18 months down the line and with just six sessions of speech therapy from her neurological team in london and her speech is really not very good. I have noticed that in the last few days it has become progressively worse to the point where she is struggling to speak and she feels very frustrated!

She keeps asking me whether she should have speech therapy on a private basis and whether Professor Morris would be able to prescribe her a medication ! I really feel so bad for her my heart is torn apart! I know there s no cure for this horrid child condition nor is there any medication

I am worried that it has progressed to another level

Any advice from this amazing team please as to whether having private speech therapy might help as it does not look like she will be getting any sessions from her team any time soon!

Many thanks for all your help

[AliciaB]

I have been trying to get information on speech loss and CBD. My husband has been hoarse for a month. He seems to be having difficulty talking and speaks very softly. No issue finding words, that I have noticed. Is this something that happens with CBD?

I will be following this and hope others will help with your questions.

Thanks for posting.

[Grandmadippy in reply to AliciaB]

I had speech therapy called “speak out” it’s mainly for Parkinson related disease but have found very good and helpful. You follow speech lessons in a book twice daily, then daily as and when. It has truly helped. Also it’s on utube, if want to take a look.

[doglington]

I'm afraid loss of speech happens to all, I think.

My husband can speak very little but he is also apathetic and makes some effort with outsiders but only brief words at its best. No conversation.

It seems to take ages for the thought to transfer into speech.

Sorry.

Jean x

[Fifisamra in reply to doglington]

Yes this is exactly what is happening with mum

So so sad

[doglington in reply to Fifisamra]

It makes it very lonely. Presumably for them too.

[easterncedar]

Check out LSVT LOUD, a program designed for Parkinson's patients. If you can find a therapist who has some familiarity with that it might be something worth pursuing. It won't cure the speech loss, but it has definitely helped my guy. If you can manage private therapy, I recommend it. Even if it you only have enough appointments so you or her carers can do the exercises with her, it is very cheering to fight back a little against the deterioration.

[Fifisamra]

Thank u that is very helpful

Will look it up

[easterncedar in reply to Fifisamra]

It was always great to leave an appointment with the speech therapist because my guy could talk really well for some time immediately afterward. It woke him up and activated his "articulators" as the SALT said. That was 18 months ago. Now some days are better than others, but on a good day he can still make himself understood.

[Yvonneandgeorge]

My husband is also the same, such a horrible illness I hate it. We also see professors Morris he is such a wonderful doctor, and the other doctor he works with.

Sorry can't be more helpful by this illness takes everything away. Yvonne x

[millywigg2]

Hi,personally i dont think it really helps in the end.My hubby has CBD and had speech therapy sessions over time.The disease just takes over.He cant speak at all now and struggles to point to the correct letter on a white board,we finds thumbs up and down the best way to communicate.We all hope various things will help with CBD but sadly it doesnt.D is 59 and 6 weeks ago went into a nursing home,cant walk,talk or see v well and has a peg.Bless him what a vile disease.Good luck and keep strong xx

[Fifisamra in reply to millywigg2]

He is so young that is awrful

I am shocked at how this awrful condition attacks even younger people

My mum is 77 but in her mind she thinks she is still 25! Which makes everything so difficult

She is also stubborn and her behaviour at times is strange

I am upset about her speech as she is very vocal person and I do realise that the speech won't improve much

How long did it take for your husband to loose his speech from the moment he was diagnosed?

I reckon my mum has been this way with her speech for two years

Sending you strength and love

[millywigg2 in reply to Fifisamra]

He was mis diagnosed for 3 years,had falls and all the other symptons and they thought he had early onset dementia i knew that wasnt correct cos his memory was brill.In January 2014 he was diagnosed and at that time speech was slurred and slow.Therefore 3 years down the line its gone completly.Strength and love to you too xx

[Judes1]

My husband has CBD and at first tried speech therapy unfortunately didn't help, in my husbands case I think he sees the word in his mind but his mind is unable to process them, it is so frustrating for him and myself, it makes conversation so difficult, and they expect you to know what they need to say, such a horrible illness.

[doglington in reply to Judes1]

Yes. Thats how it is with Chris. He also sometimes says the opposite, eg. no instead of yes. Its like a puzzle all the time.

[Fifisamra in reply to doglington]

This is the same with mum she will always say no first and then yes!

So frustrating

[Fifisamra in reply to Judes1]

It is a horrid disease

So frustrating to have a conversation with mum

[easterncedar in reply to Judes1]

Yes, same with us much of the time. Very frustrating for every one when even thumbs up or down doesn't work. And then while we were in the car the other day he suddenly corrected the radio newsreader's pronunciation of the name "Levesque". It made me laugh with delight!

[Cianodude]

My mum is in the same situatiin after a year of speech therapy she has been told theres nothing more the therapist can do for her and she feels shes wasting my mums time...mum gets so frustrated and she sounds drunk all the time..as the day goes on by evening time mum is ineligible...its heartbreaking and has progressed so rapidly..

[Fifisamra in reply to Cianodude]

😢