Losing speech

[aliciamq]

Are there hints that the ability to speak may be ahead?

[aliciamq]

Oops-----losing speech is what has me concerned - Jack has just withdrawn for a few days - he's never been a chatty guy , but he's annoyingly very quiet🤔 I couldn't find the "search" for topics so created a new post without reading the old ones that Appeared when I wrote in my topic ~ now I see there are many. I will read through them, too🙂

[Benny22lovesus in reply to aliciamq]

Jim's speech was the first way we knew something was wrong. He had a very bad cold and cough. His voice sounded like he had laryngitis .Our primary Dr . did numerous test. Then we saw ENTs , neurologists , a spinal tap , and blood work from a Mayo clinic.We had over two year's of test.Two neurologist agreed it was PBP. He hasn't talked since last January but he rich get the DX till last August.He also had swallowing issues.He now use's a text to talk , or a boogie board to write on, it has been hard. and horrible for us to adjust to.He is very friendly and funny too.He did have a feeding tube placed in November. He take's all his meds and water with it .This in itself is terrible ,but he has no limb or core problems. He went elk hunting in early November.Life s still good , just different. If you're husband can still talk , he can do voice banking. I wish we had known about it

[abirke]

there are hints that the inability to speak are ahead....My advice is find ways to communicate that are not oral....a book of words that he can point to or even just pictures....Toilet....fridge if hungry, a line with with a person walking on it.....He wants to get up and walk....There are other ways to communicate....find them

AVB

[loppylugs5]

tablets (electronic) are reasonable now and there is an ap (MED) which allows the person to touch to indicate wants.A voice is activated so if a little way away you will hear.Strange at first to hear " I want the toilet" but very useful.Good luck P

[daddyt]

My voice changed literally over night. That was two years ago and it has become more and more less audible since that time.

[Robbo1 in reply to daddyt]

Oh daddyt it must be so frustrating for you! I get very impatient trying to understand B and I feel dreadful because of it. We use letters, thumbs up etc but he now has glaucoma as well as a problem focusing, so it is tricky. It is the worste part of caring I think. Some things are not so nice to do, but at least I can do them for him. Trying to decipher his speech, I feel an utter failure who is causing him more frustration. X

[daddyt in reply to Robbo1]

It can be very frustrating at times. Often I prefer to "write" rather than speak. If I lose this ability then I'll be challenged to find another way to communicate. x

[Robbo1 in reply to daddyt]

Keep on fighting this PSP! X

[daddyt in reply to Robbo1]

I try everyday to stay ahead of it. I REFUSE to let the disease define me.

[abirke in reply to daddyt]

isn't it unique the way PSP affects each person. With Bruce, Writing skills were lost before oral skills....

I'm glad you are hear Daddyt

[AnaBri in reply to abirke]

Same for my mom... She hasn't been able to speak a full sentence since a few months ago, but she lost the ability to write maybe a year now... This is such a weird disease

[aliciamq]

Thank you for sharing - we are having another quiet non- interactive day😐

[Zeberdee]

My hubby has lost the ability to speak and communication is extremely difficult. We were using the blink system but that no longer works as he now just stares into space. Second guessing is no easy task either but with PSP nothing is easy each day becomes more difficult. Suppose you can guess I am totally p....d off and it's a tearful bad day. Jx

[doglington in reply to Zeberdee]

We're in same place. Blinking, squeezing, thumbs up - non are reliable. When he clearly wants to say something I have no idea. It reduces me to tears to see his eyes willing me to understand - and I don't.

Its torture for us both.

love and a big hug from Jean xx

[Zeberdee in reply to doglington]

Yes we are in the same place and it is getting harder. I return your big hug and love. Jxx

[Robbo1 in reply to doglington]

Oh Jean, you have summed it up. Torture for us both. It made me feel a little better that people like you understood exactly how I feel. Thank you. X

[Robbo1 in reply to Zeberdee]

You are so right,each day is difficult. Sending a big hug. X

[AnaBri in reply to Zeberdee]

I'm sorry you're there already... You just voiced one of my fears for the future to come with my mom...

[Flemingc]

As are we. He can occasionally manage a yes or no, but rarely. Every other symptom and new ones are progressing right before my eyes. Mike's wonderful neuro came to our home Sunday night and met with 15 family members to gently explain how this disease is progressing, and what the next few months hold. He is losing ground daily, and I truly believe he is willing this to go quickly. I am heartbroken.

[doglington in reply to Flemingc]

No-one would wish him to continue suffering but can't bear to imagine him gone.

Jean xx

[Robbo1 in reply to Flemingc]

Love and prayers. X