What about chewing difficulties? My husband has swallowing trouble. but can't chew food very well, is this a common PSP problem?

[laroux]

[jillannf6]

HI I HAVE PSP AND FIND SWALLOWIGN A BIT OF A PROBLEM BUT ALSO PUT TOO MUCH FOOD IN MY MOUTH A TONCE OS IT IS DIFFICULT TO CHEW

(i PREFER SOF TFOOD SANYHWAY AND DO NTO EAT MUCH MEAT AT ALL)

LOL jILL

[summergirlx476]

My husband was diagnosed 6 years ago and he is having difficulties swallowing as well. He hasn't got to the point of having his liquids thickened yet but I do see it coming. He also has some choking issues with some foods. Apparently liquids are harder to swallow than solid foods. Salads are pretty well non existent now and pasta is also a problem. How long has your husband had PSP?

Linda, British Columbia, Canada

[laroux in reply to summergirlx476]

Hi Linda, It's so bazaar, he just FINALLY was diagnosed the end of November. It has been going on for a long time, 3,4, or more years I'm guessing. I thought he was hailed out last spring when he was saying he couldn't drink water...now I get it. About all he likes to eat is pancakes, and he gulps his Ensure and Boost, can't be very good for him.

Your neighbor in southern Alberta

[summergirlx476 in reply to laroux]

Is he still mobile? My husband Gerry has a scooter to get around the house which has helped his falls. His speech is failing a lot, he uses hand signals most of the time and we also have an iPad with an app on it that allows him to type out what he wants to say. For now that is a blessing. take and be in touch.

[laroux in reply to summergirlx476]

He's using a cane, too stubborn sometimes, so there are lots of falls, just had a doozie this evening. His speech is incomprehensible most of the time, and almost a whisper. We have a keyboard communication device on loan from "aids to daily living" . Like I said he is stubborn and chooses not to use it often. Frustrating. He has just recently learned to text, so that is helpful. just admitted today that his vision is getting poor. His GP kept making assumptions for his symptoms and never referred him anywhere until I went and got assertive at an appointment, that just got the ball rolling. I think Bob is still in denial.

[summergirlx476 in reply to laroux]

I know all about the stubbornness as well. Maybe it comes with the disease. Gerry was sent UBC after more than year of trial drugs, none of them helped. At the time that he went to UBC he was taking 27 pills a day and included the ones for high blood pressure as well. This disease has certainly changed our life and the plans we had. It's even hard to "remember the good old days" sometimes. Do you travel at all?

[laroux in reply to summergirlx476]

I have done some travelling, Bob not so much, his idea of travelling is going to the lake to fish. We did go to Mexico last year because I knew his travelling days were limited. I'm going to Maui in March, just wish Bob didn't require so much care. My grown kids have volunteered to care for him while I'm away. I can't believe how much more care he needs now from the time I booked just a few weeks ago! Our daughter is at home, grade 12, but she too is finding this whole thing pretty hard. Is your husband still able to travel and such?

[summergirlx476 in reply to laroux]

We just went to visit friends in southern Illinos. I thought it would be easier going to visit at someone's home opposed to going on a trip somewhere as his mobility is very compromised and it worries me. He would like to go on a cruise with some other friends and if I would have help it might not be bad but I don't think I can do it on my own. Enjoy your trip and your time away. Gerry is changing quickly as well. He just had the Botox shots in eyes today. Which now happens every two months instead of the original three months. Talk again soon

[springbank]

I used to give my late husband anything that would disolve reasonably easily (that means nothing that would remain in a chunk or block of food). Stewing steak if it is the best quality was a favourite but must be slowly cooked till it falls apart. Quiche with the pastry crusts removed. Banned were sausages, burgers, chops, pastry if crisp, etc. You just have to work out what will break down easily and what will stay solid. Watch how much food is put into mouth as PSP/CBD seems to make them unaware of when to stop, small amounts at a time.

[cabbagecottage]

I agree Spring bank it is almost obsessive isn't it . If I pit food in front of my husband his hand reaches out almost before I put the plate down ..

[Jane2212]

Yes, it was one of the early signs of PSP with my Mom. She found she couldn't chew meat well and thought it was a problem with her teeth or her jaw, but it was muscle weakness from PSP. Later on it was impossible for her to chew anything at all and in the last four or five years of it (she had it for 12 years) she had a soft diet. We had special straws with a one-way valve in for drinks because the ability to suck drinks in became a problem too. When swallowing became a real problem we did go for a PEG feed, having avoided it like the plague for ages .... but it was easy to set up and she got her nutrients and felt full, and put on 3 stone in a year which made her look bonny and good.

Jane.

[jimandsharynp in reply to Jane2212]

Jane, If you have a link for the one-way straws please post it or email it to me. Thanks, jimbo [e-mail]

[ManakGupta in reply to jimandsharynp]

i wish to have that link to please.

thanks

Dr. Manak Gupta

Email: [e-mail]

[Jane2212]

nrs-uk.co.uk/pat-saunders-o...

There you are, Jim. They are called the Pat Saunders' one-way straws. They were invaluable because Mom hadn't the strength to suck a drink all the way up a straw, even if we cut it in half. These helped immensely. We also used drinking mugs with a lid and spout on because her drinks were going down her clothing rather than in her mouth.

Thanks, Jane.

[marusela]

hi hello from Spain. my father(83 ) has PSP too, he was diagnosed last year...but i think he was ill for a long time ago but doctors said that was only a normal weakness, what a terrible mistake because they could had been diagnosed before, now its too late but almost he is in betters medicals hands by now, i take care of him...all symptoms that you tell here are the same for him....its terrible, yesteday he was eating cheese little bits of cheesse and start to cough and almost chokes...i was to help to spit all food , i scare when i saw blood in my fingers but , i can help him and he is alive, what a terrible disease....here in spain there are no help for organizations or community services only a diagnostic, to take him a hospice maybe can be a solution but doctors says that he will be more happy at home....i hope the end for him be fast and painless hugs for everyone , please be strong

[john_z]

Hi, Laroux.My father has Psp and he is on speech therapy, we believe it is helpful.There are exercises for the throat and mouth, some of them you can do at home every day as well.Our speech therapist suggested lately an Endoscopic Evaluation of Swallowing, it's a special examination about swallowing and it 'll help her to focus on specific exercises that my father needs.Wish you and your family the best, John.

[ManakGupta]

hi

my father still hasnt developed the chokin issues and eating problem and i wish it remains at bay for as long as its possible.

and i do agree that many countries dont have the supportive help which is required for such cases.

and one of the facts abt reaching to the food even before the plate is served is a typical feature which we could not understand earlier..we used to fight with dad for the sheer embarrasment we had to face when he started eating first even if guests were there and food served but everyone hadnt started eating..

he would help himself and not bother for others.

anyway that might help understand the caretakers understand the sufferers and not take them otherwise.

regards

Dr. Manak Gupta