Are Speech Issues a Pre-cursor to Swallowing Issues in CBD?

[choclab511]

Hello,

I have been a member of the site for over a year and have found it a wealth of information and appreciate everyone's input and perspective. My mother was diagnosed with CBD almost 2 years ago, and has had symptoms for about 4 years. In the last 2-3 months I've noticed she is having an increasingly difficult time both finding words and actually saying them. Often words she uses will come out as garbled sounds and I have to ask her to repeat herself to understand.

The question I have is are these issues some kind of pre-cursor for problems with swallowing or are they not related/connected? I don't know and am trying to anticipate the next set of issues and the new normal that we will encounter.

Any insight folks have here would be greatly appreciated! Thank you in advance.

[dollydott]

Hello choclab511

My mum has over the last few weeks had similar symptoms with her speech followed quite quickly with swallowing issues . She also has CBD diagnosed 2017 but symptoms 3_4 years before this . I don't know whether they are connected though. Mum had a lot of mucus build up in her throat too and has just started on medication for that and over the last few days she seems to be able to get a few words out but a lot of the time even though she tries no words will come. It's heartbreaking .

Welcome to the forum and good luck with your mum

Lynda 😊

[choclab511 in reply to dollydott]

Hi Lynda,

Thanks and good luck to yours as well. Mine can have relatively normal conversations, but as I said, lately more words seem garbled. I often also get some form of "You know..." because she can't remember something. I'm gearing up/not looking forward to what I'm sure is the inevitable bout(s) of pneumonia. Thanks for your reply!!

[DenB]

Hi,

My husband was diagnosed in 2013 with CBD but had symptoms for 2-3 years before that.

He had speech problems from about 2012, I remember this because I had to do most of the talking for him when doctors asked him anything.

So, at present he can't talk at all....maybe one word every now and then which can be understood but he hasn't had any swallowing problems.

I think after reading a lot of posts on this site that nearly everyone is different. Some do have swallowing problems and some don't.

My husband hasn't been able to talk or be understood for a lot of years now. He takes a long time to eat food but can still swallow.

Denise x

[AJK2001]

I think it depends on whether it's cognitive ability that is affecting your Mum's speech or physical control of the larynx area. It's probably a bit of both and so swallowing problems are probably likely. Do you see a change whether she is tired or not. I find Mum has days where her speech is very difficult to comprehend and then other days it is much better and it's generally fatigue related.

[BattlingCHC]

I know that speech exercises some of the same muscles as swallowing does … so ANY effort to speak protects the swallowing reflex to some extent.

Maybe ask a Speech & Language Therapist for advice?

[choclab511]

Thank you all for the replies.

Denise, this is a more recent thing with my mother, I'd say only in the last few months. I agree, everyone is different. Just trying to anticipate what's next. Best of luck with your husband.

AJK, I definitely think it's a bit of both cognitive and physical. The slow decline is hard to deal with, as I know it only gets worse from here. Ugghhh

Battling, that was where my mind kind of went. If there's an issue with forming words, other things must be coming. Just trying to prepare for the next step down I guess.

Again, thanks all for your replies!!

[Cuttercat]

I believe so. Speech is so tied to swallowing because of the tongue.

Eventually you’ll need speech assistance. We used hand signals.

Take care.

Cuttercat

[Beads0122]

Choclab,

There didnt seem to be a relationship with speech difficulties and swallowing with my wife. Her speech difficulties started with becoming more and more quiet. We used a speech therapist, but it continued to decline. Then it became the wrong words or garbled, but she was so quiet it was hard to notice. About the last 3 months of her life she was non verbal. All this time, there were no swallowing issues, but she continued to lose too much weight. It was not until the last week of her life that she developed swallowing issues.

You are doing the correct thing to study/research the progression of the disease to prepare for the future. I wish you success with your efforts to try to delay the progression of this cruel dissease.

Blessings,

Bobby

[choclab511 in reply to Beads0122]

Thank you Bobby and sorry to hear about your wife. I appreciate you sharing! It is indeed a cruel disease.

[eurolynch in reply to Beads0122]

Hello

I hope you don't kind my question. My Mum is virtually incoherent now but does not really have any swallowing issues. Could I ask the cause for your wife? If this is too sensitive please forgive me. I just need you know if my Mum is nearing peace x

[Beads0122 in reply to eurolynch]

Eurolynch,

My heart breaks for you. I am sorry you are going through this with your mom. From my reading on these diseases, it appears that swallowing issues is more common in PSP, but as we have all seen, this cruel disease is not the same for everyone.

My wife had CBD. It was correctly diagnosed about 10 months before her passing, after having been misdiagnosed with early onset Alzheimer’s for about 5 years(her symptoms were not consistent so we sought a specialist). Looking back, her initial symptoms appeared about 7 years before she died, but we dismissed those symptoms. She was only 59 years old when she passed. The last 3 months she was falling often, leaning terribly, and pacing. She was unique in that she was very physically fit, but the last few months she could barely walk, however she continued to try.

A tip for future, if you want to know more background on an individual you can click on their name and see all their posts and replies on their page. I realize it may feel like stalking, but you can quickly see if there are any similarities between your loved one and theirs. I dont mind you asking me.

Prayers of wisdom and comfort coming your way,

Bobby

[doglington]

Everyone deteriorates but the order and intensity varies.

My husband [PSP] had difficulties expressing himself. I felt I was giving him plenty of time but he felt he needed more time to " find the words ". He used to be a very articulate man.

Later he just couldn't find the words. I would say what I thought he wanted to say. And then checked with him. We had been married 50 years so I was usually right. Our GP thought it was wonderful that I was able to speak for him but it broke my heart because he was denied his voice.

Although he had some choking issues and eventually couldn't swallow, he didn't have the big problems with choking that others describe.

This site is wonderful but you won't face all the problems !!!

love, Jean xx

[rriddle]

Based upon a very small research study done many years ago, those with CBD can go up to 60 months between the development of speech and swallowing issues. (Of course it's very hard to diagnose CBD correctly.) In my experience running a large local PSP/CBD support group, not everyone with CBD develops swallowing difficulties.

[choclab511]

Just wanted to say thank you again to everyone. I appreciate the insight of your first hand accounts. I know that each case is different. One day at a time...

[raincitygirl]

Hello Choc and welcome;

My husband had CBD and speech problems from the get-go. He never developed swallowing problems (a little hyper-salivation and aspiration, but not a big deal).

Hope your mum has the best of luck! Some do.. despite the disease being a crappy hand to be dealt.

Xx. Anne G.

[choclab511 in reply to raincitygirl]

Thank you Anne! Yes, a crappy hand indeed. The research I've done seems to point to aspirated pneumonia as being what will likely take her. She's already broken both her hips last year and survived both surgeries very well. Thanks for your message!