I understand that swallowing is a problem at the end of PSP. Does everyone experience this or do some people not?

[LyndaEllis]

[Hidden]

Statistics gathered from many studies suggest that at least 80% of PSP sufferers will be affected by swallowing/choking difficulties. In some, these problems can occur from the very beginning of their PSP symptoms while others will develop swallowing difficulties only after several years of being diagnosed. It has been documented that a few PSP sufferers pass away without having any pronounced swallowing difficulties.

This results from the varied nature of the disease and how much damage occurs to the particular cranial nerves that regulate swallowing, speech and facial muscles.

One thing to consider is the fact that many older (usually in their 80's and 90s) people without PSP will develop swallowing/choking problems, and so having PSP in this age group just exacerbates this problem.

All the best.

[LyndaEllis in reply to Hidden]

Hi All, Thank you all so much for your thoughtful responses. They have given me some idea what to expect. Thanks for the stats Strelley.

[JoJo-K]

Hi Lynda,

My mum started with slurred speech, that was what initially made us seek medical advise, at this stage very early on mum had the beginnings of fixed eye movement. From what I have researched, experiences of the wonderful members on here and seen my mums decline, I would say certainly most PSP sufferers will have speech and swallowing problems and certainly well before end stages. Hope this helps x

[jillannf6]

yesLynda I od have some swallowing and choking probs already (dxd dec 2010 and still here sitting ro upright a lot fo the time).

but "thick and easy "can help and although my swallowing ha snot got wors e I do ten d to put far too much food in my mouth and eat it too quickly (another prob for PSP people) and choke when I do or wake up just choking - was frightening when i t first started but now i know what i t is i just stay quiet until the coughing stops - i cannot speak anyway after a choking episode

plz do not think i am just talking about me (which i am doing!)and i do realise that the swallowing will get worse as the PSP progresses

lol Jill

[Hidden]

Mum did have slight issues for about a year but only actually struggled enough to change her diet in the last three months before end stage kicked in. From then she needed puree food but it only stopped completely 3 days before she passed away because all her muscles went rigid. I knew this was probably exceptional as her psp was a fast moving version but to intervene would have not been right at that point

The non clinical lay person's response is that it is an individual thing.

[Hidden]

I can't get my mind around "stages of PSP", everyone's experience seems so different. My wife had worse choking/swallowing problems two years ago than she does now. It seems to be one problem that she has been able to manage, no solids now except ripe fruit, - lots of augmented milk shakes and kcal/protein rich drinks - rarely any coughing or spluttering except when she drinks water too quickly. At night I lie beside her horrified at the occasional bouts of coughing and listening to her attempts to swallow saliva but invariably she remains fast asleep and remembers nothing. Obviously there is a problem - apart from being unable to eat solid food my wife can no longer speak but she seems able to pace herself when eating. Actually it takes literally hours but at least it is safe. Barnacle

[Hidden]

One has to remember that PSP like many other neurological disorders do not always show the same symptoms and pathway. My wife has PSP and when we met up with others who were afflicted at PSPA meetings, I was amazed how different this illness affects different people. Swallowing is however something that does affect many at some point. My wife has so far only mild problems with swallowing liquids and we therefore thicken cold drinks up with Resource. It should be prescribed by the GP or one of the specialist nurses. In our case it was the Parkinson specialist nurse who recommended it and the GP then issued the prescription. My wife though has no problems with swallowing solid food. The only thing I have noticed is that she eats much more slowly than before. Hope this helps.

[wifemo]

Hi Lynda -

We had help from two professionals:

the dietician, who looked after the nutrition side and

the SALT (speech and language therapist) whose expertise was in the mechanics and could offer various types of drinking cup. The best for Tony was the "nose cutout" cup where you can tip the cup to drink without having to also tip your head back.

One suggestion from the dietician, for instance, was to add cheese to bulk out soup - simple but effective.

[jimandsharynp]

Lynda, It is our experience (wife and I) that the swallowing issue can begin early in PSP and manifest as coughing just a bit after drinking clear liquids. In the early pre-diagnosis stages this coughing isn't thought to be a problem. My wife isn't in the "end stages" as far as we know and she has minor swallowing issues. She is still on solid food and does well with only occasional coughing. Clear liquids can be fine and yet now and again she will cough from them. Taking pills is an issue but we have resolved that one. We now administer pills by yogurt or applesauce which work like a miracle to get the pills down. To answer your quesion: Yes swallowing is one of the major pieces/symptoms of PSP. What stage: Any stage the swallowing can begin showing itself.

Jimbo

[jimandsharynp]

Lynda, Forgot to mention the most important thing in regard to swallowing. There is an excellent book about swallowing. You'd never believe all that goes on with swallowing. I didn't until I read this book. It also gives excellent things to do that will help with swallowing. Title: SWALLOW SAFELY sub title: HOW SWALLOWING PROBLEMS THREATEN THE ELDERLY AND OTHERS sub sub title: a CAREGIVERS GUIDE TO RECOGNITION, TREATMENT, AND PREVENTION The book is pubished by INSIDE/OUTSIDE PRESS.

I found this very helpful and hope you and others will as well.

Jimbo

[john_z]

Hi Lynda.My dad has psp and he has problem mainly with liquids, so we use a thickener, which is a real savior.He also visits a speech therapist twice a week (not always twice, because as we know psp is a disease with real bad days and my father isn't always capable for a visit to a speech therapist).We found the speech therapy really helpful, there are special exercises for swallowing and we also try some of them at home with my dad.Wish you the best, John.

[LyndaEllis]

Thanks everyone for the replies and the SWALLOW SAFELY book tip Jim. I am going to order it.

Lynda