Feeding.

[AutumnRiver]

The shock I am dealing with this morning is the realisation that I might now have to liquidise my husband's meal. He has always loved and enjoyed his food. Last night he choked and spluttered for a long time after eating some raw carrot. Is this the beginning of a downard slope?

[Dance1955]

Do you have a NutriBullet I used to liquidise all my husbands meals in that you can just add gravy or such what he likes

Cake can be just mashed with some cream custard or ice cream

Also you can purchase many home cooked puréed meals I live in Australia my husband lived a long time on puréed meals

Drinks can be thickened with a thickener you need to get that from a health nurse or you can buy it on line

Good luck with it all

Hugs

[AutumnRiver in reply to Dance1955]

Many thanks fro the suggestions. Will look into them.

[Willowden]

Hi, sorry to hear your husband is struggling. I remember mum’s first choking incident being very scary.

Obviously every person is different but for us there have been plenty of modifications made between the first choking incidents and moving on to a pureed diet. It’s been around 3 years so depending on where your husband is at there may be other things to try first. Do you have a Speech and Language therapist involved? Ours has been a great support, in the beginning such simple changes like wholemeal bread rather than white. Also having ‘easy meals’ for days when he might be more tired. As below, adding yogurt, cream or custard to desserts.

Good luck.

[Sun-flowerwearer]

Hi Autumn River

As Willowdean mentions it doesn’t necessarily mean you need to move to puréed food.

When my husband had his first non swallowing incident which scared us it was with bread .. he just couldn’t swallow it.

Raw carrot would be impossible for him. I mash potatoes with butter and mash up vegetables and add mashed up fish or chopped up chicken breast with lots of gravy .. so fish pies, very soft meats… shepherds pie but the mince has to be very minced

He likes doing pudding and custard and trifle etc

That’s a level 4 type diet according to speech and language so we are not pureering good yet

My husband was diagnosed in April too and 3 years since onset

Ask GP to refer you to speech and language team as they deal with food and drink

X

[AutumnRiver in reply to Sun-flowerwearer]

Thank you all. You are right, the path to pureed food might be different for him. Sun-flowerwearer my husband too started symptoms 3 years ago. I am very curious what the rate of decline is going to be like.

Have got a supportive Speech therapist.

[Sun-flowerwearer in reply to AutumnRiver]

Hi

The million dollar question! How far along ? and no one can tell us. My husband has been told he has probable PSP SL which is the strongest diagnosis they can make without autopsy. His type of PSP predominately showed up in speech and swallowing first. His eyes also didn’t move up and down and his facial muscles froze in a masked expression maybe 14 months ago. He can’t speak at all now! He could say yes and no and the odd sentence about 3 to 6 months ago and earlier it was very hard work but he could speak clearly but just short sentences. So communication is really difficult without voice and expression. He spells out words on a laminated sheet. He cannot read or write now either due to his eyesight and really weak hands and arms. On 30 April he had the swallowing change although it had been deteriorating for about 6 months before… just tiny changes. He has been on mashed diet ever since but I can see it worsening now. He has moments of food sitting in his mouth unable to be swallowed for minutes at a time. SALT team came out once in may after I rang GP but then discharged us. We have been referred again last week and now waiting to hear from them.

What symptoms dies your husband have?

We have lots of symptoms. I keep a diary so I can track changes to try and work out speed of disease

But it’s so hard to know if it’s bad or really bad or really really bad !

Xxx

[pmcdonough1]

My husband had PSP. I remember his first chocking incident on raw carrots. We went to steamed soft carrots or canned carrots. Instead of raw apples we used cooked apples drained well or sauce very thick. My husbands dietician recommended he have three Ensure drinks a day. At her suggestion I would add Ice Cream, often I would use Lactose free to prevent possible mucus. My husband enjoyed fried cod with the crispy bits removed. It was soft and easy to chew. I would get a Supreme Pizza and remove all the toppings and chop them up even finer with extra marinara sauce. He did well with ground beef enchiladas. Our goal was easy to chew, moist with a thick sauce that did not separate from the food. I gave him apple sauce and pudding cups every time I gave him pills. At meals I would include diced fruit cups with the liquid drained off and then poured onto a paper towel in a bowl to make sure there were no runny liquids he might aspirate. He loved waffles softened with butter and some real maple syrup. I also gave him Full Fat Greek Yogurt. When my husband started to have swallowing issues, his doctor prescribed Donepezil, his speech and his swallowing improved within a couple of days. The NIH has a paper on their website which states that patients with PSP benefit from up to 20mg of Donepezil. When my husband's swallowing became weaker again, his doctor increased his dose to 20 mg. His speech therapist was astonished at the improvement it made with his swallowing. Both times after the initial dose and when the doctor increased the dose, my husband woke up with eyes wide open as if a light was turned on in his brain. I also kept a small spiral notebook that I documented my husbands vitals, bowel and urine production as well as any pain. This helped me communicate with nurses and doctors so that my husband could get quick relief from any issues he was having. There are many here to help. I wish you the best, take joy in all the little victories.

[Kelmisty]

My Mum has PSP and CBD, recently starting to cough and choke on certain things so we are waiting for the SALT to come back.

She’s incredibly fussy with food and doesn’t like butter, margarine, full fat milk or any of the ensure drinks at all. She is a nightmare to get food for I am dreading the next step as I don’t know what I will be able to sort for her.

She’s refusing any moves to a carehome and lives in her own flat in extra care but they say she’s still got her mental capacity, so I have to fill in all the gaps around carers. It’s so difficult to think about adding another complicated element to arrange every week for her.

[SandyMae42 in reply to Kelmisty]

I don't like Ensure (or Boost) either. I have noticed some of the store brands taste much better. Won't bore you with which stores, since I'm in the USA and you probably have different stores. I sometimes mix vanilla Ensure with sparkling water. Protein shakes usually taste pretty good too. Also, Jini Patel Thompson has designed an elemental diet powder called Absorb Plus that has great reviews. Haven't personally tried that one, because it's a little pricey.

[Kelmisty in reply to SandyMae42]

My mum won’t drink the milkshake alternatives. So frustrating

[Zerachiel in reply to Kelmisty]

Hi, there are fruit juice versions

[Kelmisty in reply to Zerachiel]

Yeah she’s got those stones now and isn’t drinking them.

[Zerachiel]

Hi, excuse the copy and paste but a recent reply I made to someone else may be relevant to you, Hooe it helps.

"Hi, this is a link to an NHS food thickness guide. southtees.nhs.uk/services/a...

I would advise asking for a referral to a dietician, in the mean time you could look at fortifying foods, a quick guide is here malnutritiontaskforce.org.u...

Try using a small spoon to avoid cramming, ensure each spoonful is swallowed, avoid mixing consistencies in the mouth eg. Peas and gravy.

There are three main issues with PSP and swallowing, 1 the swallow itself is strong but making it happen is difficult, 2 the swallow is weak, both of these run the risk of aspiration. 3 the muscles controlling the mouth and tongue are not working well, this could mean not being able to manouver the food under the teeth to chew or to the back of the mouth to swallow."

[Purrlie]

Hello AutumnRiver,

Everything you, and others here, are describing is all too familiar. My husband's swallowing issues started with raw apple, but it took about 4 months before we had a couple of real choking episodes (salad the first time, pizza the second) and I started researching soft/pureed diet recommendations. I wish we (or our doctors) had known about Donepezil. But, as we all know, everyone develops different symptoms at different times and at a different rate. Zerachiel has summed up the swallow situation perfectly.

So many valuable suggestions and comments from folk who have already replied, and someone may have mentioned this already, but if your husband is taking medications in pill form, do check with the pharmacist to see if those are available in liquid form. That may save some delay and frustration in making the changeover if you find that even crushing pills (those that can be safely crushed as per pharmacist OK) cause issues with swallowing.

Sending you both a big hug, Purrlie.

[AutumnRiver in reply to Purrlie]

Thank you everybody for sharing. This is all new to me and it is good to be open about my own state of bewilderment and sadness as well.

[Bergenser]

We are still at a stage where "easy chew" food works well, but with occasional coughing and choking. The Speech and Language therapist has given my husband tongue exercises that help with speech but also with eating and drinking. The exercises (ideally done with a mirror, repeat each 5 times) are1) push you tongue out as far as possible, hold for a few seconds, and then retract

2) push your tongue out and curl it up towards your nose, hold for a few seconds, then retract

3) push you tongue out and down towards your chin, hold for a few seconds, then retract

4) move your tongue from side to side, touching the corners of your mouth

5) push your tongue into your right cheek, then into your left cheek

6) pretend you are licking an ice lolly (slowly)

It's good for a giggle

[AutumnRiver in reply to Bergenser]

Thank you Bergenser. Will try the exercises!