Drinking problems

My husband was diagnosed with PSP August 2017. He has deteriorated quite a lot. I can’t leave him, hold him when he walks. Needing to use wheelchair now in case we both fall.

The reason I write is to ask if anyone experiences when drinking squash it seems to catch his thought and comes out his nose when trying to get his breath. He goes all red in the head and passes out for a few seconds. I hit the middle of his shoulders and shake him shouting his name and he usually comes round

This time his arms were shaking and his fingers seemed white.

The salt team say I need to give him thickening to syrup solution. He takes this but does not seem to drink enough like normal squash and usually can drink squash ok. But this is happening more now.

I’m also worried with it being so hot whether he drinks enough.

It is so worrying when things starts to go a stage further.

He also has the staring non eye movement problem. His trying to say a conversation, he start to say a few words in a quiet voice but stops after about five words then pauses the repeats the last word over and over.

Jeanie70

[Marie_14]

I think you should cut the squash out!! Try water instead. Also you could maybe try using a straw. The SALT lady who came to my husband didn't like me using it but it worked and I know others have found the same.

There is also a drinking cup you can buy online which limits the amount of liquid which can be swallowed as this is a real problem for people. I know it's very difficult in this warm weather. My husband didn't like the thickener but managed it with water! You might want to try it to see how he gets on?

Marie x

[Hidden in reply to Marie_14]

Thank you for your advice

[hubetsy in reply to Marie_14]

Straw worked like a charm for us for years. We discovered this when I observed that using a water fountain, C. never choked. We were at the gym 5 days a week then for his water classes. Tipping his head down to get the water was the same way he used the straw. Sadly, those were the good old days, Now it's thickened to honey/pudding and often spooned and that's when he can swallow! : (

[Hidden]

Thank you for your advise

[NannaB]

Try Rubicon Mango drink. It was thick enough for my husband to drink without thickener. Water and squash diluted with water made him choke so I stopped giving him either quite early on. I made smoothies with fruit, adding a little water if they were too thick. My husband didn’t like thickener in his drink generally but did in drinking chocolate. I gave him instant cappuccino with a little thickener but for quite a while he could drink it without thickener as they are quite thick. He also used straws, various types of drinking mugs and I gave drink on a spoon before he eventually had a PEG fitted. For us I felt it was just seeing what worked and as my darling was never dehydrated or had aspirational pneumonia these suggestions worked for him. I hope you find what works for you and your husband.

Best wishes

XxxX

[Hidden in reply to NannaB]

Thanks NannaB, I just realised I have pineapple juice , I have forgotten that this is better. I get confused when so much is happening and I’m a bit out of my routine, we’ve had Hospital appointments for myself, car service, doctor arranging enquiries on gardener,s etc. There is always so much to fit in.

It’s the fact he is passing out more that worries me. Is this the gradual decline? Or fast decline? He did have aspirational pneumonia early on before the actual diagnoses. He was being treated for Parkinson’s at the time

[hubetsy in reply to NannaB]

My husband struggles mightily with swallowing issues. At times now, he just can't swallow at all, pockets his food (puree and honey/pudding thing drinks). At 10 PM tonight, I managed to finish feeding him supper because he wasn't able to swallow at all at 5 PM but when I tried again at 10, he cuold (??) He is opposed to a PEG and I've gotten conflicting opinions about them from professionals as well as PSP caregiver friends. My husband is down about 50 pounds or more from his pre PSP days. He can't speak and we are now doing hand squeezes for much of our communication. Walks 10 feet with help and a gait belt but mostly wheelchair. Sleeps about 14 hours out of the day. I don't feel like he's at death's door but he will be if he continues to eat and drink with such difficulty. I fear dehydration and work hard to make sure he gets fluids and healthy foods but don't want to pressure him to get a PEG.

[SmurfetteVeritas]

I now have thickened liquids. I have invested in a milk frother to mix the thickeners equally and allow 10% extra to ensure that the liquid goes down slowly. Took a lot of experimentation to get it right. I also use a blender to mix up water with same 10% extra and tefrigerate it for next few days.

Looks a bit strange and tastes no different, get a few odd comments which you learn to laugh off, but the way it is thickened helps. I can enjoy dulce gusto drink coffee!

I am waiting for a mini usb rechargeable blender which makes up 16 oz (approx 440ml metric) to see if this is a viable travel aid. It comes with a lid to put on top of juicing cup. I am going to states/canada/Iceland in couple months and don't intend to carry blender! Will give viability report.

I hope things improve for you.

[raincitygirl in reply to SmurfetteVeritas]

You are intrepid Smurfie!! i look forward to your travel reports!

Anne G.

[SmurfetteVeritas in reply to raincitygirl]

I wasn't brought up to accept you can't! I hope the rechargeable blender lives up to the advertising as I can enjoy as much as possible the life I used to have. Since being home from hospital, have used recuperating to experiment between sleeping and exhaustion. Think I'm getting stronger but with PSP you don't know what's around the corner.

[raincitygirl in reply to SmurfetteVeritas]

Where in Canada will you visit?

[SmurfetteVeritas in reply to raincitygirl]

Toronto, visiting friends, then nyc overnight, then upstate ny with friends, then Iceland for couple of days to break up flight home. Not looking forward to 8 1/2 hr flight to Toronto.

Bucket list!

[raincitygirl in reply to SmurfetteVeritas]

but what a great trip!! I'm too far from Toronto to suggest a meet up but I wish you a great travel experience. Of course it will be exhausting and occasionally maddening (I mean, air travel these days..right?) but it will be fabulous and when you get home and post pix for us (...you DO have to post pix for us!..) you'll get to really appreciate it

[Yvonneandgeorge]

George had carbonated water with organic cranberry juice, still coughs and choking, but is good for urine infection, he doesn’t seem to get them so

Often. He also

Likes a banana milkshake that I make him. Yvonne xxxx

[raincitygirl in reply to Yvonneandgeorge]

Yvonne, my hubby is coughing more & more - but no choking. What do you think causes all the coughing??

Thx.....

Anne G.

[Yvonneandgeorge in reply to raincitygirl]

Anne not sure what causes it, but I think it is part of the psp, sometimes we give cough medicine which helps and ask George to take deep breaths, the hateful psp xxxxxx

[Katiebow in reply to raincitygirl]

It seems that their airways don't close quickly enough when they swallow, allowing liquids and food to enter the lungs hence the cough. All about the messages from brain to throat not behaving themselves. Bens neurologist said that anything that should be automatic becomes no longer automatic and I think that sums it up.

Love Kate xx

[raincitygirl in reply to Katiebow]

Makes sense.....thx X

[Birdman34265 in reply to raincitygirl]

Hi Raincitygirl,my Kathy coughs even when not drinking,i think it's flem or saliva running down the throat. xx Peter and Kathy

[honjen43]

Hi Jeanie, when my husband was hospitalised and short of fluids, I was told to order jelly and ice cream. Jelly contributes to fluid intake. In my opinion it tastes much better than thickened fluids too! Besides who will turn up their nose at jelly and ice cream, anyway!

Sorry to hear he is having difficulty getting his words out. I have little experience of PSP, other than what I have learned here. My husband had CBD.

Sadly, I feel this speech difficulty may mean another brain circuit is failing. Check with him whether you can communicate through another means. Can he answer yes/no to questions? Would a picture board help? Can he recognise the written word? Keeping communication going for him, by whatever means, will be a great help to you both. Others use thumbs up/down, or hand squeezes - whatever works!

Hugs

Jen xxx

[Hidden in reply to honjen43]

Hi honjen43

My husband is quite good to have little discussions with me and indeed friends and relatives. It’s as if he’s nervous as when he realises we are listening and waiting patiently to him , it then when he starts to fail. We involve him in everything, it not that we ignore him but we may do a lot of the talking.

He does have better days and yesterday was a bad one

Thank you for your care

Jeanie70

[honjen43 in reply to Hidden]

Sounds more like a confidence thing or embarrassment!

Keep giving him hugs and tell him you understand. All you can do! Must be awful for all going thru what he is experiencing.

Hugs to both of you!

Jen xxx xxx

[AJK2001]

Hi Jeanie

I've also worried about my Mum and drinking enough in this hot weather, have been tempting her with berries cut up small so not too much chewing that tires her out as these have lots of water in them and are so tasty at present. Things like yoghurt, Muller rice, custard, mousses are also a good way of getting fluid in. I've also found she likes cold soup - pea & mint is really refreshing in this hot weather and when cold the consistency is a little thicker so easier to handle, some soups are almost a soft mousse consistency so better spoon fed than drunk.

Alison

[LuisRodicioRodicio]

Hi Jeanie 70!

By private internal mail I send our experiences with PSP in case you can find some help in the various symptoms and difficulties of this disease.

Best Regards and luck.

Luis.

[Katiebow]

My lifesaver was frozen smoothie, not the yoghurt type, usually mango and passion fruit which I thickened a little. I froze in snack size self sealing bags. When frozen I would break up a little and whizz in the blender to make a slush puppie type drink. I would then spoon feed it to him. Refreshing and easy to drink. Also home made ice lollies of the same. Great in this weather and Ben enjoyed them all year round.

Love Kate xxx

[Hidden in reply to Katiebow]

Hi Katiebow

I’ve never done smoothies. I’ll have to try this, thanks

Jeanie70

[Brenive]

I have sent you a private message .keep in contact..Brenda xxx