My guy is still walking and eating independently, but I have noticed a fast decline in his vision which is making his eating truly challenging. I find him tapping on the plate as he is searching to find the next item on his plate to stab with his fork. I assist him by taking his fork and helping him locate the next bite of food. If you are in a similar PSP stage, you might want to try hand-held meals. It works for my guy. He doesn't feel like he is making a big mess and if we go to a restaurant (which happens about once a week), it is so much easier. This helps him have complete control of his food and he does not have trouble with having to find it on his plate or it dropping off his utensil. I make meals like burgers, quesadillas, pita wraps, sandwiches, tacos, burritos, grilled sandwiches, lettuce wraps, etc. I load them with protein (chicken, beef or fish) and fresh healthy veggies. I add fresh salsa because his ability to taste is almost gone, but for some reason salsa he says he can still taste (maybe it's the heat).
I am just glad my guy is still eating normal food. So far no trouble swallowing. Thank goodness but I know it's coming! Ugh!
Nikkie
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Hang in there. We are at the next stage but still finding soft foods. It seems as if crepes are popular again and there are two restaurants nearby. He loves going because he can eat them easily.
Funny that you say crepes because there is one restaurant that we go to and they serve crepes and that is what he always orders. Always. Maybe because they are soft and I didn't even realize it. Interesting.
Good for you and your husband. and good idea on the hand held food.....B liked pizza but that got way too hard with the stringy cheese. Infact it was kinda one minute he was choking the next he was tube fed! We never really had a transition.
Eating is one thing that still has not changed--not yet. The vision and balance is just awful and getting worse every day! It is so different for everyone. Then there is a good day (jump for joy) and then there is a terrible/sad day (no jumping at all)! Those two days can be back to back so you can never plan--unpredictable disease! Ugh! Then there is are sleep issues (going to a sleep doctor next month that focuses on neurology related diseases not pulmonary). I think if he continuously slept for at least 5-6 hours, it would make a huge difference. What do you all think? Does a good night sleep give your PSP loved one a better next day?
Ambien....for sleep...Yes I think it , sleep gives everyone a better day....By 4 he starts getting tired, unable to use what little mobility he has by 9 no mobility and his best mobility is after he awakens Without Ambien he sleep walks . He seems to be doing better in that area especially now that I stopped the diphenhyrdamine and Ambien together!
I also let B sleep as long as he wants in the morning...till about 10:30 11 am
Does your husband use anything to help his balance or gait? B tried a cane then we went to 4 footed can niether of which worked..he ended up falling because of them....then the walker now the wheelchair
sleep well and remember a good day and a not so good day evens out to just another day
Yes, the sleep walking is happening and so I spoke to nurse yesterday and she gave him Clonazepam(sp?) and I gave it to him last night. He had a good night and so did I because I wasn't waking up so often to help him. We will try and see how it works. He is so sensitive for meds so lets see what other side effects it causes. I will try Ambien if this doesn't work.
He is still an independent walker but we did by one of those walkers for neuro patients (the handles have brakes on them but they work opposite of how a bike break works). Does that make sense? For trips, I have started to load the wheel chair for long distance walking just so we move faster.
Yes My husband had one of those walkers... it was on loan from our Physical therapist.....bent it so up from falling with it, the guy had to take it back! Could not use it for anyone else...oops sorry! That was in the first days when B was more independent than smart and I was more ignorant than I am now...yikes! Anyway I am glad he is an independent walker, and I am sure for you and your guy this walker is doing the trick!
Wow I just helped dad (B) from his walker to the toilet.....he didn't know how ...He got out of his walker and turned and even backed up to the porcelain...but then just stood there...I finally figure out what he was saying...."I'm trying to sit down" He's NEVER done that before...forgotten how to sit down...he's fallen while sitting down but not this....
sorry I just had to tell you this experience....
Good luck with the Klonopin....and if it doesn't help him ...save it for yourself !!!! I use it when I am over anxious....I don'[t use it daily tho.
AVB Keith struggles to sit down now, his whole body goes rigid and won't bend, I almost have to force him down onto the loo, then he gets half way there and stands up again, then we have to start all over again! It takes so long and is very frustrating, I really don't know why I bother because nine out of ten times he misses the loo and I have to change him and mop the floor again!
Boy howdy does that sound like my house. Ok Pat, I know this is weird but I had to solve the pee on the floor syndrome....so I came up with an apparatus that still let him use the toilet...It's a combination of convene and a urinal....its an 18 inch (46cm) funnel! The high part of the funnel covers his penis while he urinates in the apparatus. Believe it or not this is not long enough. So I have about 12 in (30 cm) of tubing connected to end of funnel to secure it in the toilet. If he has his own bathroom, He can basically leave it in the toilet. However for us, we have one bathroom, which means he has to move it into the bowl from a basket that holds the apparatus. I clean it by using clorox and hot water and a scrub brush just for his "urinal" I found a glue-backed knob that I attached to the apparatus for easy holding and he can hook it to the basket when hes done......
We have not done this yet, but as he loses more abilities, I think he may transition well using it in a seated position, ...we will pee, i mean see!
Good luck with this or any other solution you and yours comes up with
If it's the same thing we have, it's a U-Step walker. My husband uses one when his balance is really bad. The only thing he has trouble with is sometimes his hands won't work, so he can't squeeze the handle to make the wheels roll. So I do it for him then. Still easier for him and better on my back! How is your husband's back doing? Has it improved any since his earlier procedure/surgery?
My husband has used the U-Step walker twice and it's just parked in the hall way most of the time. I guess he is not ready for that yet.
He had stem cell injections by StemGenex in April and he is still about the same with pain. I know his vision improved for a few weeks but now it seems like it is back to where it was before the injections. I have not lost hope because it has only been three months and they expect changes to occur any where from 6 month to over 12 months. Going to sit tight and HOPE and PRAY! Any improvement is welcomed and if we see it, we are going back for more stemcells.
Oh I know where your at with the meals(although F can no longer walk more than a few steps unaided) I chop/ mush etc and I serve in a dish with a spoon, not a plate, but still have to help with the last 1/3 of the meal. I try to do 'not chewy' foods, I find pasta good, but he does seem to manage'finger' food
But like you I think mash/purée round the next corner
Ben doing a lot of coughing and choking in hospital but to be honest I think I would if I had to eat that so called food. Not sure he will return to the point he was at before they had to replace his hip after a fall 3 weeks ago. Long may it last that your man is eating normal food and enjoying it. It's abhradcwatch to see the hem choking on their food,none of the few pleasures they have lef in their life.
He's just waiting for transfer to local cottage hospital for rehab. Had a call from his doctor yesterday to confirm he has osteoporosis (scan requested by Parkinson's Nurse ages ago and scan the day before we went to Bristol) this wonderful news on top of PSP will make me even more on edge. Hope you are both doing OK, thanks for the post Debbie.
It's great that your guy is still eating normal food.
That stage can go on for a long time.
Hand held food is a good tip.
At first we got some close up glasses made which helped with the lack of eye convergence using prisms ground in. The other thing which really helped was using pasta plates. I'm not sure if that is the proper term. Essentially they are dinner plate sized bowls. Finally I make sure that all of the food is cut up so that it fits onto a spoon. We also use polythene disposable aprons. The sort nurses wear.
Thanks Kevin for your response. I like the pasta bowl idea and the disposable apron. It is definitely time for the apron--gets a little messy but he loves his food. We joke about it by saying your losing your vision, your balance and your bladder but we are not losing our appetite! He just laughs!
Nikkie, enjoy this time. Go out to eat as much as possible! There will come a time (all too soon) where this will no longer be possible. Find any excuse whatsoever The problem with hand held down the road is portion control. They tend to take too big of bites and stuff their mouths. Sandwiches, burritos, wraps etc. are no longer possible for my husband to manage. He absolutely loved pizza. For some reason, bread and the lettuce in salads become challenging. My husband is in the mechanically chopped stage. In the hospital they made him eat pureed food which of course made him miserable as well. His food is one of the few pleasures he has left so I tend to indulge him in whatever he wants as long as it is chopped up well in bite size pieces. A swallow therapist once recommending raising his plate up to chest height. I put one of those folding,"breakfast in bed" trays on the table and it worked quite well for awhile. Also he has eating utensils they have padded grips that are sturdier and easier to maneuver. Whatever works. I think the stage you are in is especially challenging as it is not quite sinking in yet that their physical abilities are not the same. We were in the ER weekly because he refused to use a walker for the longest time. You know the expression, "Pride comes before the fall"? That's PSP.
Everyone is so different. My guy doesn't do the big bite thing at all, never did, but also can't easily hold onto food any more. He squeezes too tight and can't find his mouth sometimes, so cookies get crumbled and fall, and so on. He eats regular meals though, nothing thickened or pureed or cut fine. He just needs to be fed each bite. He doesn't choke that much except with liquid sometimes. He likes to eat, and it is something we can indulge. I am glad of that!
Hi nikkie my husband to is still walking and eating, he has glocoma, maculardegeneration if I spelled that right I do notice at dinner he drops his food a lot. Our neurologist told to buy these special forks spoons and knife with a bigger Handel I have not found them yet but I will buy them as soon as I see them.
Oxo makes the utensils with big handles; they are found in good kitchenware stores here in the US. The medical supply store charges a fortune for them, but they are not expensive elsewhere. Our OT also gave us some inches of soft foam tubing that you can use to fit around the handle of any of your own utensils, and that works well.
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He just laughs!
Eating issues
So thin
Medication
