Swallowing Progression

My name is Len and I am new to this so please bear with me. My wife is 86 and was PSP diagnosed approximately 8 years ago. She is now wheelchair bound, has a very soft and unclear speaking voice, has very bad sight from dry eyes. She has begun to have a problem with swallowing. Our youngest grandson, he's 37, is getting married in February and she wants so much to go to the wedding. It's a 300 mile trip. We have a wheelchair accessible van so transportation at the present time is not a problem. My question is "what is likely to be her situation in swallowing over the next three or four months." How rapidly does the swallowing problem progress normally?

Len

15 Replies

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  • hi len sorry to hear about your wife but i think its hard to say if it will get worse over the next few months or not from reading other peoples blogs and replies everyone seem s to be at a different stage what i mean is that someone might have had trouble in other areas of the body first \\ i myself had a few falls then the speech and then the swallowing which is not to good

    am a psp sufferer from 2004 i have had problems swallowing and a soft voice for years now it has not progressed or got any better maybe someone else on here can give you the answer i can only speak or write i should say how it has affected me but if she wants to go to the wedding

    i would take a gamble on it and take her especially if she really wants to go having psp is bad enough so i do not t think she would mind \\ little more discomfort for her\\ tell her the problem you are facing and could she stand the 300 mile trip good luck and best wishes len im sure you will come to the right decision peter jones queensland australia ps best wishes to your grandson on hes wedding

  • If you are in England a good help is to have Thick and Easy.It is completely tasteless but the thickness helps them to feel there is someting in their mouth and remember to swallow. I know my mum gets it free on prescription (she is 76) and her swallowing has only become worse with drinks over the course of a year from when it started. I was reluctant to 'ruin' her drinks with thickeners but she doesn't notice the difference but simply doesn't cough with it. As far as food is concerned she is now still on a moist diet and has been since May(2012) but occasionally when she has been ill she has to be fed her dinners until she gets her mobility and grip on cutlery back again. She has been fine with finger foods throughout I hope this helps, Dianne

  • hi len

    welcome to the site

    i have PSP dxd decemmber 2010 and am still here!

    i have had balanc eproblems for years then co- ordinaiton problems;wthen speech and swallowign problems

    i woudl agree wih pete rabove - plz go if uyou think youo cna do it now then in 3 months it will prob not be a lot worse- if so the owrst you woudl have to do woudld be to cancel

    plz excuse my dylsexic typign (!) one hand is stronge rthan the other

    lol JIll

    :-)

  • Hi Len, follow your heart, you didn't say how old you are? but if you feel you could both manage the trip Go! the swallowing could get worse but you can adjust to that and take precautions, asking for a special meal or taking your own and having it heated, don't miss out because of just the swallowing. Perhaps a stay over somewhere that caters For disabled, Talk to your PSP nurse or Gp, they can give you ideas for a easy trip, and perhaps someone could give you both a lift to the wedding so the pressure is off for you both. hope you make it and have a wonderful time.

  • Len, My wife has swallowing issues but they don't progress very quickly. I bought some bibs that are designed for adults with issues dealing with food. We use those at home but I don't see why you couldn't use them at the wedding. Maybe have your meal before the wedding meal so that she wouldn't have to eat solids at the wedding. If it's a buffet they may have soft foods on it that would be easier to swallow. Have you tried the product THICKIT? It is used to make liquids a bit more solid and easier to swallow. I'm going to post again with information on a fantastic book I found that deals with swallowing in every aspect. I learned a lot of the dos and don'ts from the book.

    Jimbo aka jimandsharynp

  • Len, the book on swallowing is:

    "SWALLOW SAFELY"

    How swallowing problems threaten the elderly and others.

    A caregiver's guide to recognition, treatment, and prevention.

    Authors: Roya Sayadi, Ph. D., CCC-SLP

    Joel Herskowitz, M.D.

    Good luck!

    Jimbo aka jimandsharynp

  • Thanks to all of you. You've lifted my spirits. Incidentally, I'm 89 and in good health except for spinal stenosis which has me using a walker but is not otherwise debilitating. I can still lift my bride of 65 years to transfer from wheelchair to regular chair or bed.

  • Good on you Len , You can give ten years both in age and marriage .

    I still do the heavy work for my husband but I wouldn't be able to manage withouth the use of a portable ceiling hoist . they are brilliant .

    It has taken its toll of course , the hardest thing I find is bending over when he is sat in the armchair . I am not so good bending my knees and getting back up. Hence I have to bend over . I am thinking of inventing a hydraulic system on his armchair.so that it would be easier for me to tend him .

  • good on you len keep,on keeping on your a champion best of luck for the wedding whether you decide to go or not peter jones queensland australia

  • hi len

    great!

    u r a positive person and plz go to the wedddign if you can1!

    lol JIll

    :-)

  • Dear Len,

    I am sorry to hear your wife is having swallowing problems. I work as a Speech and Language therapist and it is part of our role to assess the speech and swallowing needs of our clients (we are involved because it is the same muscles that we use for speech as we use for swallowing). I would advise you to speak to your GP and ask for a referral to a speech and language therapist so that they can assess your wife's swallowing ability. There are different ways of managing swallowing difficulties so it might be changing the textures of the food and drink she has to make it easier to swallow or it might just be thinking about positioning at mealtimes, most likely a combination of the two.

    It is a speech therapist who would assess whether your wife needs a thickening product for her drinks and there are a variety of different brands available. This product is not suitable for everyone so it really needs a professional assessment and is only available via a prescription.

    As the others have said it is hard to know how quickly things may progress, but if you make careful plans then I am sure you will both be able to attend the wedding and enjoy the day with your family.

    Hope this helps and good luck,

    Nicola

  • Thank you, Nicola. We are using thickeners. We haven't gone to pureed foods yet.

    You are all so kind.

    Len

  • my husband has the same problem with swallowing and coughing whilst drinking water. He is in a nursing home. I am not sure if too much is known or understood about the PSP disease and so it is by others experience that we learn. Thank you all for your imput it is very helpful.

  • Be sure they are thickening all of his liquids to at least nectar consistency. This is about all that can be done. I find that my wife does better if she uses a straw. Some contend that a straw is not the right thing to do but there is no doubt in my experience that Polly does better that way. Just know that you and I are doing the best that we can. And what works for one may not work for another but we keep trying.

    Len

  • I have recently come across a larger straw ,pay that I mean the opening is larger . I use it with spouted mug . push the straw through the spout ,it helps keep it steady . cut the straw to the suitable length . the narrower straw needs more effort on the suck this is more of a drink .

    Could be use for soups

    often times it's the actually swallow that is Johns problem it's control of tongue I think ..To exercise it I prompt him to sing which he can still do even not able to speak well .

    Whenever he gets stuck while talking I again prompt him to stop and say ABCD , it can be anything . It helps unfreeze and he can then carry on with what he wants to say .

    I use thick and easy for John . will read that book Jim .

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