I am having difficulty with my speech - both thinking of words and forming them - what are other people experiencing in this regard?

[LyndaEllis]

I am afraid that I am going to have increasing problems with speech and swallowing before the end. I don't yet have problems with swallowing but I am afraid I will have. I am 69 and I already have to spend the day in bed because I am dizzy. Have other people had this problem in the end - in the final stages?

[dorothy-thompson]

Hi LindyaElis

My husband seems like he is at a similar stage to you, when were you diagnosed?

Best wishes

Dorothy t

[SharonAB]

Dear Lynda Ellis,

From what I understand difficulties with speech, swallowing is present in all and dizziness present in most people with PSP. However the order and rate and level vary quite considerably from person to person. My husband's first sign of PSP was a type of 'dizziness' that occured well before any other symptom. It started as the worst it has ever been for him - then there were changes to his eyes, and then he developed a clumsy walk.

Yes, you are right - it certainly is scary - however if it is at all possible my suggestion is don't try too much to second guess what is next - like I did for my husband - for years later I am none the wiser and lost too much valuable time trying to find the answer which was impossible to find.

Regards,

Alana - Western Australia

[jimandsharynp in reply to SharonAB]

Alana, you are so right!

Jimbo

[Keith246rk5]

Morning Lynda sorry to hear your position with this illness I am finding more and more that I am struggling to think of words whilst speaking and my speech just in the last week appears to be getting worse as in not clear and the words not coming out and certainly can't Multi task or I find myself just not able to form the next word for example if having a conversation that's all I can do I can't do or think about anything else

Take care

[jimandsharynp in reply to Keith246rk5]

Saliva build up can cause poor speech. Try to swallow before speaking. Thoughts do come slowly but at least they come, unlike Alzheimer's.

Jimbo

[Hidden]

PSP affects different people differently. There is no unified pathway. My wife started to have speech problems and balance / coordination problems. Now she has mild swallowing problems, mainly for liquids, not for solids. As some of the symptoms are similar to people with Parkinson's my wife is being assessed every 6 months by a Parkinson's nurse and she has prescribed her with Resource ThickenUp clear powder to thicken up liquids. Interestingly she does not need this for hot drinks, only for cold drinks. And she needs it in particular in the morning after getting up and having her breakfast. During the day she does without it. So luckily she is one of those who are only mildly affected, but I know of cases where this has become a major issue.

As far as speech goes, we have immediately involved a speech therapist and this is on-going. It will not solve the problem, but with exercises the speech problem progression is slowed down.

The other issue is dementia and memory issues. Again the way people are affected varies significantly. My wife has still not problem with her long term memory, it is better than mine. But she seems to have a problem with her short term memory. It is very strange, when you ask her about a film we have seen the day after she finds it difficult to recollect its contents. You ask her a week later, and suddenly she remembers everything.

Apart from having difficulties with talking, one of her early symptoms were that she could not think of the words when she wanted to say something. The speech therapist tested her on that, and this is very typical for PSP. A normal person when you ask him for example to give him the names of a number of flowers will respond within 1 to 2 seconds. A PSP sufferer needs 8 to 10 seconds, and then sometimes gives up. In that case only certain references help. For example when asked to name a number of flowers in the garden, then suddenly she can name quite a few. You ask her the same question 3 days later, and she has no problem of listing a row of names of flowers. Unfortunately this problem gets worse with time and we do not yet know ourselves how this will be in the end phase. And this becomes a major issue in communication.

The only thing I can say that exercise of any kind is essential and you need to get a team of health specialist organised around yourself. A good starting point is the excellent Personal Guide to PSP which you can download free of charge from the PSP website.

[jimandsharynp]

The cognitive part of PSP brains is affected which takes you longer to form thoughts. They form but slowly. It's like the brain is working but slow, very slow.

Jimbo

[JudyJ in reply to jimandsharynp]

I just had my 2nd neuro-psyche exam since my original diagnoses and that was a specific point she brought up.

[LyndaEllis]

Dorothy, I was diagnosed in Marçh 2011 but Ihad the disease for at least a year before that.

[JudyJ]

Lynda:

I was diagnosed about 1-1/2 years ago (I'm 55 now). If it helps at all, know that I was experiencing those symptoms for at least 2 years before diagnoses, including the dizziness and being bed-bound because of it. And I'm know where near the end-stages, which is fine by me.

PSP is just simply scary. I still get scared sometimes because I can feel changes happening. And it can be isolating because it's not very understood.

Please try not to worry about the end stages unless you've been told by your Doc you've arrived there. I understand this is a difficult thing to do. I'm still adapting to my "new normal" and figure I will continue to as it progresses. Just embrace each day, and only one day at a time.

Judy

[LyndaEllis in reply to JudyJ]

Thanks for the info everyone! It was good tol hear your answers!

[Hidden]

Mum had some variable trouble with speech and swallowing but did not lose them completely until she went into the last bit of end stage. We found it would come and go when she was tired or had an infection. She also had less trouble saying things 'off the cuff' than trying to answer questions but then again she would by habit try to think of a condensed and often witty answer!

[ultramodern]

My wife diagnosed with PSP at 71 left planet at 73 did not have food swallowing problems at the end. I always put something with taste in her drinks to avoid any drink swallowing episodes.

Possible first symptoms?...without doubt, balance,then falling,(no vertigo no giddiness) just balance loss .Falling back, sideways, forwards.

Obviously my wife was into PSP several years prior to first falling symptoms, almost concurrent to falling were the occullar problems, opthalo's prescribing glasses which when produced by an optician were totally useless.

Thirdly, towards the end (third year into PSP) the voice became very soft, conversation became difficult due to time needed to prepare an answer.

Good luck with survey. best,brian

[jillannf6]

Hi lynda

I too hv PSP dxd 2010 and must hv the slow sort asi am still here falling too many time s a day. My speech is getting quieter snd. More garbled but the Salt will be helping me,with,this. And imam in touch with the. Community matron vi a my gp which means I am getting some help,with the. Things which are difficult for me now

Loljill

[jillannf6]

Hi I Lynda

I m afraid I did not answe r your questio

I had bad problems with dizziness 4 years b4 dxd and always thought it was labyrinthits

But since I stopped swimming it has gone and annmri secede showed it has gone

Loljill

:-)1

[cabbagecottage]

Have any of you got continuing health care . ?