PSP pains..: Hello all.. I am new to this... - PSP Association

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PSP pains..

Camabhishek profile image
8 Replies

Hello all.. I am new to this forum. My dad has PSP for the last 4 some odd years. He barely speaks and just keeps making "humm" sound all day long. Moreover he is a vegetarian.

We are seriously thinking about starting to give him eggs with milk as I guess that would give him the much needed energy. Today he has been complaining mostly about pain in the left arm which he makes it as stiff as a wooden log.

Any suggestion would be appreciated.

Thank you,

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Camabhishek profile image
Camabhishek
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8 Replies

So sorry to hear about your dad, and this reply probably wont help you much, but my late wife also had trouble with stiffness in her left arm and eventually she couldn't move it. She also had eating problems so I just used to try different things just to get her to eat something. Sorry not to be more optimistic about your dad.

AmandaF profile image
AmandaF

Hallo, there,

Eggs were something that my Mum could eat right to the end, despite deteriorating swallowing. Poached, scrambled, boiled, souffle, custard, ice cream! I can imagine that being vegetarian makes it additionally difficult to make sure your Dad is getting full nutrition because pulses, grains, nuts are not the easiest to swallow.

I used to make ice lollies with fruit juice and yoghourt - easy to consume. Also, you can make thick soups and liquidise them, including lentils and pearl barley.

Good luck and keep in touch.

Amanda.

NannaB profile image
NannaB

Most vegetarians have eggs, cheese and milk. Is he veggie or vegan? Your dad needs a balanced diet to keep his body as healthy as possible. Does your dad still eat cut up food or is it liquidised? Our sons and their families are all vegetarians so when they visit, we all are. I use a lot of quorn as it takes on the flavour of the sauce or gravy you use. Minced quorn is easy to eat and liquidises well. I cheat a lot and buy sauces that once I would make but there are so many different varieties now that food never needs to be boring any more. My husband eats a lot of eggs cooked in different ways. I add finely chopped mushrooms softened in coconut oil or olive oil to omelettes or scrambled eggs, or tinned tomatoes sieved, baked beans put through a potato ricer to remove husks, humous and not being veggie, corned beef. Other quorn products can be liquidized with veggie gravy, including sausages. Some people say they don't like quorn as it doesn't have any flavour but if it is prepared correctly and it is eaten as a separate food not being compared to meat, it is very palatable.

My husband is also very stiff. I massage his arms and get him to try and reach out to me but he finds it difficult.

I'm sorry you have had to join the site but welcome you and hope you find it as helpful as I and many others have found it.

Nanna B

formercarer profile image
formercarer

Hi,

I wouldn't introduce him to cows milk, if he has avoided it this far, it could cause him to produce mucus. Great nutrition is central to good energy & optimising his health though. Almond, rice and soy milks are all good in milk shakes. Banana is good for thickening milk shakes & lots of other things can be blended in too to get the calorie load up (including eggs if he will take them) Tofu can be blended into sweet or savoury dishes, or even into sauces. Co enzyme Q10 seemed to help my mum to be more awake for more of the time. Also, a small regular seated exercise routine will help him to remain as comfortable as possible. Best wishes to you both.

Amilazy profile image
Amilazy

Hi I agree with all above comments but it may be time to get referred to a dietician to check weight and nutrician needs they will also be able to help with food suggestions. You may need to get your SALT or GP to refer him.

Best wishes Tim

Finoni profile image
Finoni

If you think he will object to an egg on principle, but feel he should have them anyway, try adding a raw one to a smoothy. My husband still makes his own breakfast smoothy by using masses of dark leafy greens, avocado, bright fruits etc and will often add a raw egg or whey protein, plus nuts and good oils. It looks (and sometimes tastes!) unpalatable but is SO full of vitamins and anti-oxidants. I think it is one thing he can actively do to give himself optimal nutrition. The egg is invisible and tasteless in the smoothy. You do need a very good liquidizer to make it totally smooth. I am thankful he started this regime because it will

make it easy for me to feed him when he is no longer able to eat a normal diet. Good luck to you and your dad.

Patriciapmr profile image
Patriciapmr

Hello,

So sorry you have had to join this forum, but believe me it's a source of great knowledge and love from fellow carers and sufferers of PSP. It's the best thing you could have done and will certainly help you through these hard times!

My husband complains of pain in his arm, he says he can't lift it at all. I try to make him do light exercise with it, stretching as far as he can, that helps a little.

I agree with what everyone else has said and speak to a speech and language therapist, they will advise you on the best types of food to give him.

Good luck and keep posting, we are all hear to listen and help if we can!

Love....Pat xx

Check out CBD oil for the pain.

The hummm noise is because the valve that usually closes when you swallow is not working properly. Check out my post on swallowing. The excercises have worked for my dad and he has stopped trying to clear his throat constantly. He is early stages though. If you have any questions Plz feel free to message me.

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