PSP - can you escape the swallowing issues?

[journeyofjoy]

Someone mentioned that there are several people who do not develop swallowing issues? Is it possible to make it all the way through your life without developing these?

Thinking about the future and hoping for the best.

[honjen43]

Always think positively!

Having said that, don't think there is anything you can do to stop swallowing problems if they are going to occur!

Just be aware of what it means, and keep a close watch!

Hubby's difficulty came close to the end of his battle and caused pneumonia. I noticed he had a reluctance to eat and a difficulty dealing with large mouthfuls, be it liquid or solid. At the same time, he began finding it difficult to suck in through a straw. I think it was a co-ordination problem and he just seemed tired.

Managing liquids had also become more difficult and he was eating jelly, yoghurt, custard etc, and it was suggested that liquids were thickened. He didn't like this (either taste or feel) and still preferred his cup of tea, but less frequently. Keeping up fluids was becoming a problem too.

Eating and breathing are automatically coordinated when we do both and we do it naturally most of the time!

So lack of coordination may be indicated by more frequent coughing and choking.

I also noticed a gradual slowing in swallowing after mastication or taking in a mouthful of liquid. Making sure the mouth was empty before adding more always helped.

So feeding time tends to take longer.

I was aware there might be a problem before nursing staff picked it up as I was with him all the time. When medication was delivered, any pill was helped down with a teaspoon of yoghurt or apple sauce.

Eating is one of the enjoyments of life. Give your husband what he enjoys eating! He may find spicy foods taste good, or not! Sweet things I found were always enjoyed, sometimes before main course! I didn't make a fuss. And don't forget chocolate! That is always a delight, especially if you share!!

Big hug

Jen xxx

[journeyofjoy in reply to honjen43]

Jen, this is a lot of good information. Thank you. We went to a support group for PSP/CBD and of course everyone there was experiencing different symptoms. Something I found perplexing was that almost all the people there could walk but some were coughing and choking and had that fixed gaze that Parkinson's patients have. And some of them were traveling with their spouses, going on trips, even traveling outside the country. There is no way we could attempt going on a trip other than to the doctor and that is a feat in itself. The only place that has a suitable bathroom and bed is our home.

As far as food, Sandy has always liked sweets and much more so now. I try to limit them because I think he should be having healthier foods. He does have sweets every day. He usually enjoys salad with his meal but he finds lettuce difficult to eat (can't get it on a fork). Salad with everything chopped small seem to suit him. He really enjoys food, even more now than before - probably because he doesn't have much left in life to enjoy now.

After we left, he said "if they have PSP, then I don't think I have it." This darn disease is terrible and then insists on being puzzling as well. It's tough for my analytical mind.

[honjen43 in reply to journeyofjoy]

I found the scariest thing about having to face these rare diseases (like PSP & CBD) was not being able to find any information relevant to them. I could see my hubby slowly fading and failing in front of me, and I had no medical confirmation of how long we had left, or how the journey would look.

Hence my posts in general are basic and factual description which I hope will help folk like you and AnneandChris who must be feeling as "at sea" as I was. It also helps me use the knowledge I gained - and to move forward!

Big hugs

Jen xxx

[bazooka111 in reply to honjen43]

You are wealth of knowledge ... I appreciate you being on here, on a daily basis. Blessings

[racinlady in reply to journeyofjoy]

Your post brings back memories. My husband lost mobility long before he developed the cough and swallowing issues. He had trouble using a fork for lettuce very early too. I let him eat what he could and fed him his salad very early on. He never seemed to mind that. Like you, there was no way we could have tackled a trip. It just goes to show how different a path everyone takes. Still with the same end result, unfortunately.

Pat

[AnneandChris in reply to honjen43]

Jen, thank you for your helpful advice.

Chris is now on a very soft diet and sometimes I puree the food depending on its texture. I too have difficulty in getting fluids in as he doesn't particularly like the thickeners. He hates jelly, but perhaps I can try him on some with summer fruits as they are in season.

We have had a couple of aspirations and infections and two choking episodes, but that was on saliver not food.

Chris loves home cooking and his puddings, and this was one if his reasons for refusing a PEG.

So we keep on keeping on

Hugs

Anne

[amadis1 in reply to AnneandChris]

I am a PSP sufferer and i can relate to all the symptoms of not enjoying eating, swallowing and regular choking episodes

I can't open my mouth wide enough and eating steak is nigh on impossible My glahds seem to swell under my jaw.

I take thickening with all my drinks.

I have decided that the PEG is the best course of action so that I can maintain my body and reduce the risk associated with swallowing. I like jelly and i can get some satisfaction still by swallowing it. If you want to make the most of a terrible situation try to eliminate unnecessary problems - swallowing is in my opinion in the biggest threat.

I keep on thinking I'm giving myself a special treat by battling through a favourite meal for over an hour. PSP Doesn't do favours - treat it as an alien who has entered your body. I don't like the thickener but is important that it is added to all fluids. Robinsons have some. SQASHD which you can add a squeeze to water

Coming back to the PEG without it you have to prepare the meal and often it takes over an hour to eat

Amadis 1

[Dickenson2 in reply to honjen43]

John is on puréed foods and thickened liquids and does not seem to mind either. We were told by SALT not to give him jelly or ice cream because as soon as these enter his mouth they turn to liquid and he could choke x

[honjen43 in reply to Dickenson2]

I can understand that jelly and ice cream, once melted, may cause a problem.

My hubby did not have opportunity or time to consult a SALT team, so we played it all by ear.

Hugs

Jen xxx

[NannaB]

My husband never had chest infections or aspirational pneumonia and I think it helped by watching his food closely. I stopped giving him salads very early on as they have to be chewed and don’t melt in the mouth. He went onto mashed food as soon as he started coughing during meals and then to puréed. I puréed everything separately so he could still taste individual flavours. He had thickened drinks but things like drinking chocolate and packet cappuccinos which aren’t too bad thickened. He didn’t like thickened tea but was happy to drink alternatives. He also liked Rubicon fruit juice as it is naturally very thick and didn’t need much thickener. It’s all trial and error really. If it makes him cough, stop giving it to him or alter the texture. He opted for a PEG 10 months before he died by choosing not to be fed any more. He lived for 6 years after diagnosis. I once had to give him the Heimlich manoeuvre when he stole a chip from my grandson’s plate. This was just after my son had said I was mean for ordering an omelette for him. After scaring the life out of all of my family and the others in the restaurant my son apologised and said he would never interfere again.

Best wishes

XxxX

[Cuttercat in reply to NannaB]

I did the same. Early on we switched to puréed food. Never aspirated. But alas the swallowing issue is part and parcel.

Cuttercat

[NannaB in reply to Cuttercat]

Sadly it is XxxX

[Tippyleaf]

My husband had thickened fluids and a modified diet for the last 2 years of his life - he refused a PEG. He never had a chest infection or pneumonia.

As NannaB said lots of naturally thickened drinks don’t need thickener. We used milkshakes, fruit smoothies, cappuccino etc. My husband found normal tea unpalatable but found black or green tea was fine. Lots of trial and error.

For many years swallowing was unpredictable - one day he would cough on a food type and the next day eat it with ease. So take every day as it comes.

Love Tippy