Choking with psp.

[Jellybean219]

Hi only just joined this group and was hoping for a little information/ advise. My mum has psp and is now choking on everything she tries to eat and drink. My dad is her carer ( hes 80) and he doesn't know how to try and help her . It's a desperate situation and we know things are only going to get worse. If anybody is in the same situation any advice or information on what's to follow will be gratefully received, even if it's not good news. Thanks for reading.

[messier]

Have you got a speech and language therapist involved? Ask the GP if not. They can advise on different foods and how to feed him safely.

[Jellybean219 in reply to messier]

All they have said is cut the crust off bread. No help whatsoever 🤦🏻‍♀️

[David750]

Hi Jellybean219, I feel for your Dad, having faced this myself. If your Dad hasn't yet registered with the PSP Association, he should as they can offer significant help. (pspassociation.org.uk) Phone the Helpline. There are Zoom groups to share support, face to face groups in some areas of the country and a growing number of Link Volunteers who, if there is one in your area, can visit your Dad at home to give closer support. Link Volunteers have all cared for a loved one.

[David750 in reply to David750]

Swallowing difficulties can be overcome by softening foods through to liquidising - such as smoothies. I am saddened your SALT was of no help. When my wife became unable to swallow our usual meals, even cutting up small, I resorted to slow cooked stews. I had 14 repeated every fortnight all different in flavour. These she managed, then I had to mash them and then liquidise and finally liquidise a,second time when hot as this produced a significantly smoother food. This is such a complex subject that I can only just touch on it here. All my best wishes to you and your Dad.

[Jellybean219 in reply to David750]

Thank you.

[Jellybean219 in reply to David750]

Thank you David I will look into this.

[David750 in reply to Jellybean219]

Jellybean29, if you use chillies, you will need to drastically reduce or eliminate as liquidising intensifies the heat catching the throat. Chorizo the same but not so intense - trial and error.

[monkeylaura]

you need a referral to speech and language team. If you have already had an appointment then you need a further one.

Monitoring is necessary. My mum had psp and had to go onto a soft diet and thickeners had to be used for her liquids. I understand you may be at early stage but no matter this is so important. Also to help with speech and future communication.

[Sun-flowerwearer]

Hi

Swallowing difficulties are one of the main symptoms of PSP. Early on my husband lost the ability to chew and swallow anything that wasn’t mashed up and soft. Bread would be impossible as it stuck to his mouth. We cooked lots of mashed potatoes with cream and butter to make it very smooth and easy to slide down and added puréed mince or chicken or tuna. He loved sweet custard based puddings and jellies and rice pudding

I have hand fed my husband for the last 6 months with a spoon to ensure he takes small mouthfuls and swallows each one before offering the next. He has to have me help him drink from a sippy cup.

Recently he has been unable to cope with soft food so only drinking Ensures and still he coughs and chokes and wheezes. Lots of patience, calm environment and care required. It’s very stressful for both of us ss human nature is that we show our love through feeding so as a wife I feel anxiety that I’m letting him down as can’t seem to feed him without coughing and sputtering happening however careful I am.

[Jellybean219 in reply to Sun-flowerwearer]

Thank you so much for your reply. I will pass this on to my dad.

[Leosta]

I'm sorry that this awful disease has touched your family. You've had some good advice given and they are all right. Feeding someone with swallowing/choking issues is not easy. I'm concerned about your father. He's 80 and will be finding this really stressful. Can you or others in your family help him ? Voice your concerns to your GP and the SALT team. Do they really understand the problems here ?Sun-flowerwearer is right about bread, it sticks to the roof of the mouth. I had to mash/puree food for my husband. Try porridge, Weetabix soaked well in milk, mashed banana for breakfast.

Good luck and warm wishes x

[Jellybean219 in reply to Leosta]

Many thanks.

[Milocorn1]

Hi.

So sorry to hear that your Mum is struggling with her food and drinks, my Mum also has similar problems so I understand how very worrying it is.

The SALT team/specialist should be part of a multidisciplinary team of specialists who regularly engage with your Mum and most definitely should be assessing your Mum’s swallow and advising how best to safely manage her needs, recommending the best level of food (by texture) and drinks (by thickness) that they feel she can safely swallow as per the IDSSI (International Dysphasia Diet Standardisation Initiative) framework. Just as importantly, they should also continue to regularly monitor her in case there’s any changes to her food/drink swallow tolerance levels to ensure an updated SALT plan can be swiftly implemented at any given time.

Once the IDDSI levels are established the SALT team should be able to provide you with the relevant patient handouts (also available online) which provide easy to read info about the specific levels, testing methods, examples of foods to eat, food textures to avoid etc. Also, if required they can refer your Mum to the dietitian if she hasn’t been referred already and you feel it would be beneficial.

My experience with our SALT team has been positive so far. We originally had a referral to the dietician organised (as Mum had lost some weight which she has now regained) and we continue to have regular SALT scheduled meetings by telephone or face to face and also they respond quickly should I have any concerns. My mum has moved from a level 6 soft and bite sized diet to a level 5 minced and moist diet - so the monitoring is definitely important. We also had a cup provided (Kapitex Drink Rite) which only allows a specific flow of liquid per sip which I feel in my Mum’s case has helped her to continue to tolerate level 0, thin liquids, albeit with some encouragement to clear her throat throughout eating and drinking.

I hope that you can get the support you need.

Sending lots of love to you all. xx

[Jellybean219 in reply to Milocorn1]

Many thanks for your reply . I will contact the salt team myself and try to be present when they visit.

[wear1947]

Hi Jellybean, Messier's message is the first think you have to do. I also recommend to read the following presentation youtube.com/watch?v=nX_xwG-...(Not working as expected?)

Good looks, and Hugs

[Jellybean219]

That was very informative. Thank you.

[LittleOllie]

My mom was on level 5 - mashed and moist foods. She had a SLT assessment for swallowing. They will look at how your mom is eating and drinking too. We were told to take bread out of her diet as it can get stuck. She also had nutilius thickener for all fluids. You need to speak to your GP for an urgent referral to occupational health and speech and language teams.