Question?

[julie2000]

My mom was recently diagnosed with PSP and we were treating her for Parkinsons, but now we know for sure what it is. Did anyone find that speech therapy helped? We cannot understand her anymore. She is only 77....very sad

[kgc1]

Hi Julie,

Sorry to hear about your Mum. I dont think it helped my Grandad to be honest but thats just my experience, tried various methods but didnt make any difference

Take Care x

[jzygirl]

Lack of communication is part and parcel of psp. The speach and language therapist will need to do an assessment because at some stage there will be Swollowing problems. But in the meantime they might be able to help with some exercises to help maintain what speach a swollow that your mum has now. Janexx

[abirke in reply to jzygirl]

I agree w Jane. Infact B's Speech Path and I had a discussion today about his articulation needs. He just spent the last 6 weeks in swallow therapy . Today was his last session. It has done him pretty good, (though just 3 weeks ago he received a PEG tube due to choking hazard when eating).

However we (not so much B) decided that he should continue with articulation therapy. He needs to hold on to what little bit of speech ability he has....He slurs and does not work with the middle syllables/consonants...So for the next 6 weeks we will be shifting from the back of the tongue (swallowing) to the front for speaking. B does not like the idea...but I wish we had done it 3 years ago! We may not, can not get back what's been lost...but hopefully we can slow down the loss.

So I encourage you toe help your mom maintain that which she has

AVB

[NannaB]

Sorry about your mom. My husband was given exercises to help his speech but it didn't make any difference and he hated doing them. The speech therapist has been involved a lot over the past few months though, to give advice on swallowing problems. He is having a PEG fitted in a couple of weeks and the doctor who will be performing the procedure, took advice from the speech therapist.

X

[junie55]

My husband is in his 6th year with PSP, he is 61. He had speech and physical thearpy beginning the 1st two years. At the time it was of no benefit for either and did not assist in any improvements or abilities. Thearapist encourage because his health benefits pay for it. PSP research states although the patient may have both therapies, there is no benefit short or log term. This illness robs them of the major functions over time. Speech, walking, seeing, communication.....

A family friend bought him a teacher speaker, (used in classrooms) to amplify his voice. This has helped for me to hear him. He talks so low, I would have to put my ear to his mouth to hear him. My then challenge is to distinguish his words and what he is saying. Needless to say communication is very frustrating to us both. Hopefully, our experience will help you. Good Luck.

[Amilazy]

Julie2000 sorry to hear your mum's diagnosis. Speech therapy do more than try to help with communication, they can provide exercises to help with swallow and saliva/drool control. They are also one of the main gateways to other health professionals. They cannot prescribe but their referrals to GP/Consultants usually followed.

Other specialists your mum will find useful are Occupational therapists who can assist in suggesting providing aids and adaptations for easier living, and physiotherapist whose exercises can keep a lot of PSP symptoms at bay for a short time as PSP is progressive and unfortunately does not get better. Get a GP who understands PSP and is willing to listen and help.

Best of luck Tim

[GonnaMissDaddy]

I'm very sorry about your Mom. This is one difficult illness to learn about because it's just so sad. I feel for you and I relate and understand. I just wanted to add that my Dad has psp, he's 81, was just dx last year, early 2015, and has had psp for probably 8ish years, it's been a slow progression. Soon after his dx, he did have speech therapy and IT WORKED WONDERS FOR HIM! He's not as perfectly spoken as before psp but I understand him even if it means he has to repeat himself just once. I've been impressed because prior to that he was slurring as if he was drunker than he's ever been in his life. Psp is so different for each person and even though it's progressive sometimes some symptoms will temporarily get a little better. What I'm trying to say is what holds true for one psp sufferer and what works for them may or may not work for the next psp sufferer. Read as much as you can stand but take breaks from it, because most likely, since the illness is so rare, it's what your dear mom needs of

you.

[Kathryn in reply to GonnaMissDaddy]

My husband found speech therapy helpful. As well as giving him exercises the speech therapists taught him how to maintain loudness and measured the improvement when he followed their advice. They were also very helpful in teaching him ways to eat/swallow.

[Lieve]

My dad gave up on it and then after a year or more, after insistence of his new doctor, his started again. I think it's helping him a little bit, not just with articulation but also with pacing his words, with swallowing techniques... and also the people around him: he will ring a bell first to get attention and then talk, instead of wasting his energy to get our attention, we have been told to NOT talk during meals (which is a natural event) when he already has problems swallowing, and to give him plenty of time to reply and form his words. So it's therapy for him and us. He is still very hard to understand and unfortunately, no therapy will stop the progression of the disease. The speech therapist comes twice a day - she's wonderful, kind and usually gives us an update on what she's doing and she asks what else has been going on.

[Heady]

YES! YES! YES!

At the beginning, all ours seem to do was give S exercises to help with his speech. Needless to say, he didn't do them! Was told he had to the exercises, three times a day, or it wouldn't work! After that failed, she gave him some hints, how to make sure people were aware he had something to say. Now all his communication has gone, she is coming once a week, to help him use an iPad to "talk"! There are loads of Apps out there to help with communicating.

Like others have said, the speech therapist is the person who deals with swallowing and the associated problems. We have just been referred to see about peg feeding, as S is struggling to get fluids down him.

I didn't have much faith in the beginning with the ST, but now I have come to realise, that she is the main person in S's care. In fact, in the medical sense, she is the ONLY one!!! We have had two, over the two years, since diagnoses, both have been very kind, helpful and actually know about PSP, a rarity in its self!!! So yes, get the ST on board, TRY and make your Mum listen and DO any exercises given. Most of all, get to know them. Normally, they are part of a team and can get other services on board, that you (or your doctor) have never heard of!!!

For you, stay on this site, it's brilliant! You will learn so much. We all help each other, listening to any rants, picking each other up, giving help and advice. Mainly, just having someone to "talk" to, in this extremely lonely life as a PSP Carer!

Lots of love

Heady