Swallowing problems

[fothergilla]

My Dad is almost immobile but so far he is able to swallow fine. When do most people experience swallowing problems?

[easterncedar]

Not everyone develops every symptom, and trouble with swallowing is one of the worst, so your father is lucky in that, at least. My guy, now 5 years post diagnosis is still eating regular meals, while one of our pals here had to have a PEG almost immediately, when he was still getting around, even going to the gym.

[fothergilla in reply to easterncedar]

Yes. It is very strange. I am thinking it is just random where the tau develops or doesn't develop in the brain? My Dad was golfing a year and a half ago- struggling but could walk a 3 par course all the same very slowing. Now, if he makes it 3 or 4 steps to his handi-bar we are glad. I wish he could see how he is fortunate in some ways, but he can't get passed how this has been unfair.

[easterncedar in reply to fothergilla]

Yes, I believe that the disease affects different parts of the brain in different people. We are all hoping for a cure, and there is encouraging research being done (see Christine47's recent post on it). Keeping my guy strong as possible as long as possible so there's less lost ground to recover is our plan. Good luck to you and your father and us all. Love, Ec

[LynnO]

My husband is about 7 years in and has swallowing issues occasionally, although they are becoming more frequent. Like easterncedar said, everyone's progression and symptoms are different. Hopefully he keeps his swallowing ability for as long as possible.

LynnO

[Marie_14]

Fothergilla, I have been told everyone is different. I assume that's right as people seem to have this for ages in a lot of cases. My husband has it but hasn't been properly diagnosed. He was told it was that or MSA but I know in my heart it's PSP. I want him back. Yet he can't walk, had lots of falls before then, then his swallow started to go along with his voice. It was drinks rather than food in his case. Yet yesterday I watched him eat and knew it wouldn't be long before that too became a problem. I ended up helping to feed him and was told off as apparently he is only like that when I am there! How I wish that was the case.

He only saw a Neurologist at the end of last year for the first time! I am sure there are other people who have different stories but that's how it has gone with us.

What a good daughter your Father has though? When times are bleak he must think that too?

Marie_14

[Heady in reply to Marie_14]

My husband's swallow has varied throughout his journey. Just after his stroke, he was coughing and choking. Then that eased. It always was worse when tired, especially for liquids. Over time, I have had to chop his food, feed him at times. Now, he is on pureed meals and thickened liquids. Most of the time, I have to feed him, but occassionally he gets stroppy and insists on feeding himself. Dog is always encouraging that! Hates me to feed him, if there is anyone else around, but is quite happy for them to do the job. Life at mealtimes is very stressful in this household unfortunately.

Lots of love

Heady

[fothergilla in reply to Heady]

Yes. I have noticed that too. My Dad needs help with eating, but his pride gets in the way. I notice he will chose not to eat when maybe some people are over to visit him. That's sad, but if he can hold on to a little pride, it is better for his moral.

[Marie_14 in reply to Heady]

Heady

What makes me mad is stupid people trying to tell me he only does it when I am there. He is doing it all the time but they don't sit with him so don't notice. I noticed yesterday that his tongue wasn't straight. Does that mean anything to anyone?

Marie_14

[Heady in reply to Marie_14]

S's tongue is no longer normal in shape. I think it's the sign of brain damage. He doesn't know how or what to do with it. Hence, although his actual swallow is not too bad, all his food had to be puréed, to make life easy for him. Adrenaline is a wonderful thing, when anyone else is here, or if he is in the nursing home, it's surprising what he can do. Don't take it personally, it's a compliment really, means he feels totally safe in the environment you are providing. What upsets me with that, is the professionals don't understand the effect they have on patients or why. They just think they are far superior to us mere Carers.

Lots of love

Heady

[fothergilla in reply to Marie_14]

I feel for you! I have a hard time dealing with the sharp words. His personality is a little like that anyway, so, even though I know it's his brain disorder, it's hard to take.

[Marie_14 in reply to fothergilla]

I get shocked to be honest as he gets angry at the drop of a hat. A few minutes before he will have been telling me how much he loves me. So the change from that to talking to me in such a sharp tone of voice takes me unawares. Silly of me I suppose but sometimes I have to go and shed a few years.

Marie_14

[fothergilla in reply to Marie_14]

Yep. I get upset too. My strategy for dealing with it is just to try and give him a nice goodbye, I will see you tomorrow. Harder when you live there I guess. A walk or some time out of the house. One funny thing, I made him a roast the other week and I asked him how it was and he said sh**ty. Sometimes he is just too ridiculous.

[abirke in reply to Marie_14]

You might want to get proper or a definitive diagnosis. If you suspect something else tell the dr...they can do just a few tests to distinguish what your husband has from other issues. You would not be the first caregiver to tell the Dr....what is the true diagnosis....As I often say, you are your husbands greatest advocate.....without your knowledge and experience the dr's don't have much more to go on. Tell FDr your concerns and that swallow study may be necessary etc. You know what your husband needs....get it! I wish you every confidence in hte world and even more I pray that you get a proper diagnosis that will help you figure what to do next. If you are a praying person , this is a good time to ask Him for guidance and comfort in a troubling time...God bless you as you both progress in whatever disorder your husband might have.

AVB

Thus saith the Lord , stand ye in the ways and see , and ask for the old paths where is the good way, and walk therein, and ye shall find rest for your souls. Jeremiah 6:16

He gives power to the faint, and to them that have no might, he increases strength. Isaiah 40:29

[Marie_14 in reply to abirke]

He has had the swallow test but that was about 3 months ago. He has gone down hill since then. One of the Carers in the Care Home said the other day that he is not the same man who went in for respite in August! She is right but realising that you would think they would watch him when he's eating and drinking?

A couple of nights ago I read the letter that the Neurologist sent to the doctor when he last saw him. It mentions MND too! It sounds like even he doesn't know what he has? I rang his secretary yesterday and said I was worried about my husband and would it be possible to talk to him. Any guesses what happened? Seriously looking at paying for another Neurologist to see him. Goodness knows what it would cost but feel desperate at times.

Marie_14 x

[abirke in reply to Marie_14]

MND? And it sounds like your conversation with the nurse was not all that fruitful....b went to 3 Drs. two of them neurologists. First neuro said , "You're just getting old" I was insistent he was not that old . and that he was having ministrokes.....a young friend/nurse of my daughters said it sounded like Parkinsons....so I read up on that and found this thing called PSP....my blood ran cold as I read exactly what Bruce was experiencing....The next Neuro we saw, I asked him if it was this issue....he did a downward gaze test and I think maybe his blood ran a little cold as he confirmed my question.....B was his 2d patient with this thing, the first was 20 or so years ago . Lately he has taken on another patient from down south Arkansas....we are in NW Arkansas...So that's our story in a nutshell....

I do hope you find a neurologist that will help you. The man we have now deals mainly with Parkinsons patients. Even though he is shocked at the quick decline of B, he does understand balance disorder and the things that are compromised due to PSP.

Good luck Marie,

AVB

[Marie_14 in reply to abirke]

AVB

She was his secretary so she is there to block people like us? I never got to talk to him and doubt she even passed the message on. They have no idea how desperate we are. Worse,they don't care?

Thanks for caring.

Marie _14 x

[doglington]

Chris enjoys his food, although I cut it in small pieces and avoid things like salad. He is perfectly comfortable with anyone helping him, fortunately.

Jean x

[abirke]

My husband diagnosed 2013 was put on PEG in Dec 2015 after several months of rapid swallow decline. He still goes to the gym (because I whine and cry for him to go) but is basically chair bound. He is healthy other than PSP.

AVB

PS there are no times or even a pattern of decline...It's individualized decline...the only similar is that it will happen...not a when...sorry

[Duffers]

My hubby coughs and chokes on smoothies, drinks and finely cut up food. Doesn't seem to be any sense or meaning to it, plus his mouth/jaw is closing making it difficult to get spoons in. I havent started thickeners yet but probably soon. I try to avoid anything with even the tiniest seed in as they catch and anything else has butter or custard on it. He also is an angel around others. Makes me laugh and swear at the same time but I'm not sure he's aware he's doing that. Pride I think. To actually answer your query, I think the first sign of decline was the loss of volume in his voice. But that's just my take on it. Good luck. Marie

[fothergilla in reply to Duffers]

Are smoothies good or bad for the ease of swallowing?

[Sawa in reply to Duffers]

My hubby was diagnosed almost 5 years ago. Started needing soft food and thickeners over a year ago as he was starting to choke quite a lot. We need to feed him all his meals and help him with his drinks too. Strangely we've stopped needing the thickeners in the last few months. In fact, he manages water through a straw now, which he definitely couldn't do a year ago. Only problem is he drinks and swallows too quickly and can't control that. So we have to pull the straw out of his mouth to help him stop.

His jaws are also slowly clamping shut. Can't get a spoon or fork in now. So we hold the food on a spoon just inside his mouth and push the food through the gap between his teeth with a fork a little bit at a time.

We give him scrambled eggs with some cut up sausage, tomato and sweet corn for breakfast. Smoothies through out the day. Pureed fruit in the afternoon and then soft food for dinner. He has lost an awful lot of weight but still seems to have a reasonable appetite, especially when it comes to frozen yoghurt after dinner!

[cabbagecottage in reply to Duffers]

U should use thickener . Try nutilis

[jillannf6]

i can choke and although my mobility is almost nil [im in a wheelchair] i go to tai chi once a week where i stand and walk more than the other 6 days of the week put together

lol jill

cxxxxx

[cabbagecottage in reply to jillannf6]

Creme caramels are very good

[jillannf6 in reply to cabbagecottage]

ill. Try them

Lol jijllll

Xxxxx

[ketchupman]

I'm sure it varies from person to person. My wife was probably in year 6 of the disease when she got her PEG due to poor swallowing. And almost 2 years later she passed due to aspiration pneumonia.

Ketchupman

[Duffers]

My hubby ger has a porridge smoothie with honey and milk for breakfast and a spinach, banana, yogurt and milk one for lunch. The brekkie one he drinks from the glass but the lunch one he has a large ish straw and does ok with that. Nothing with seeds or fibre go Into them because of choking, though he copes better at lunchtime than morn. Like I said, no sense or meaning to it.

Marie

[cabbagecottage]

Could you try creme caramel it's the only thing John manages. It's not too liquid , it's slips down but they still have the feeling of something in their mouth