I must admit that the last 48 hours caught me by total surprise. I always read the various posts and usually go to sleep at night in tears, but so thankful our journey is seemingly not as bad- yet.
Monday night John had been really tired so he went to bed around 7:00 p.m. I woke up in the middle of the night finding John half in and half out of bed. Evidently he had gotten up before and fell but managed to get back in bed. I never heard him. The second time is when he fell into bed - that's when I woke up. He said both time his legs just collapsed on him. All day he has been foggy and disconnected. Very tired - many little naps. We went outside this afternoon since Spring has finally arrived in Wisconsin ( almost 80 today :)!! Since he was out of sorts today, I suggested we just walk a few houses down and turn around. Mind you, we usually walk everyday for 45 minutes with a cane. He was tired, but we stopped to talk with our neighbors. On the way back, he just couldn't get his legs to work. Luckily, my neighbor helped us get in the house otherwise I don't know what I would do. Long story short, I eventually got him undressed and in bed. Is this what they refer to as "freezing"?
I tried calling the neurologist but all had gone home. NEVER thought of what the emergency protocol is. Finally got a hold of a nurse and she explained that I should call his primary Dr. / or 911 if severe.
So, we are in the process of getting a walker, but I'm guessing we may just bypass this for a wheelchair? Does the downward spiral happen this fast? I felt so totally alone and wasn't sure what to do. I can't carry him if he collapses on me.
We were going to go on one final big trip to Russia at the end of May (Viking Long Ship). I am now terrified to take him. It will break his heart if we do not go. My head is spinning - just not ready for him decline so rapidly.
Any suggestions going forward? Probably need to get some type of alarm so I don't sleep through one of his falls again. Feel so guilty - what If he really hurt himself and I didn't respond.
Thanks for listening. Alice
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Abrecheisen53
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Alice I am so sorry you have had such a bad time. PSP is very unpredictable and can turn an ordinary day upside down. That's why we say prepare for the worst before it happens. When it happens you are prepared for it because you have the equipment you need and care too. My husband lost the use of his legs overnight but it was due to pneumonia which of course is a complication of PSP. He never truly got well again afterwards.
Freezing is when someone is walking and then just stops and can't move forward. It will cease if you say 1,2,3 or left right left right. I used the last one on my husband and he suddenly started to walk again. The carers were amazed as they didn't know what to do. So you need to read up on this. In the US you have Cure PSP and here in the UK we have the PSP Association. Both will give you a really good idea of what to expect. However not everyone gets all the symptoms.
I hope you have got some help there. It sounds as though falling is going to be an issue for you both. Then a wheelchair will be needed.
My husband fell out of bed one night and scared both of us! Then later on he fell getting up to get to the commode and then tried to help himself up and fell again! At that stage I was scared of him going to the bathroom and I was right to be.
Don't worry about the holiday until you sort this issue out. There will be a lot of sadness and heartache along the way but happy times too. Let us know how you get on. He may just have an infection? Always check that first.
Marie - thank you! Freezing it was! Next time I will try the prompting - let's hope it helps. Yes, the nurse suggested that John might have an infection or even be dehydrated. Both distinct possibilities. Plan on calling the Dr. tomorrow - John appears to becoming back to me after this last nap. Craziness at it's best. Didn't realize I slept like the dead. After five kids my body must just shut down at night now that there are no more bottles to give. I think I'm going to see if I can find some type of sensor that will shock me awake if John gets out of bed.
Thank you for such great ideas, I'm just sorry that you became so wise at the expense of all the hands on learning with this disease.
Bed and chair alarms alert me when my husband would try to get out of bed. They are a great tool.
UTIs brought about significant weakness and confusion on two occasions. That was frightening until we realized what was going on.
We usually always try to keep C. walking (with gait belt and a lot of assistance). The transport wheelchair is used when he gets tired even in the house. This is getting more and more frequent. : (
I've pushed daily exercise. He does it most of the time easily but sometimes he needs extra time and encouragement. Caregivers help out on the three days they are here. Most are done on the bed on his back. The list of exercises have evolved but consist of bridge pose (a yoga asana), single leg lifts, knee to chest singles, stretches arms over head while pushing out with heels, double leg lifts. We started with two sets of 15 but have cut back to 10 reps. Sometimes only one set. Too many on certain days causes fatigue. We also have a pull up bar in the doorway (we now use our son's old bedroom!) He holds the bar and stands on toes. Was doing 25 to 30. At the banister along the hall stairwell, he does squats. They are not very deep and he has more and more trouble doing them. He also walks along holding the banister. up and back. These exercises are time consuming because he is VERY slow.
I have found that while assisting C. walking, I walk backward while he is holding my shoulders. I hold the gait belt at his side. When he freezes or just plain gives up, I have him do a modified squat. bends his knees while lowering his bottom. two or three of these gets him going again. It's amazing. The other thing we do is remind C. to walk heel toe and pick up his feet. I get sick of the sound of my own voice repeating the same thing over and over again. But, it works. I suspect if C. could still talk he would tell me to shut up. : D If only he could!
Hang in there A...53. I wouldn't wish this on anyone (well, maybe one or two --...) but, I have also found strength at depths I never imagined and the kindness of people, even strangers, can be sustaining.
Oh, how familiar this is! ;-/ I have been reading this site for 6 months, and while I deeply imagine/feel what people are going through and I intellectualize that it will happen to me and "here is how I can access all the good info in the historic posts"...when a 'downturn' actually happens...I'm still shocked!!
Yes, from my experience and what Marie and others are saying, the 'downturns' are a "jolt" rather than a smooth curve down. As much as we are warned, it still seems unreal when it happens. My only advice so far:
- get whatever equipment you can on as low-cost/cost-free or "loan" basis as possible whether he needs it yet or not - so that you have it if it is really needed
- just use the minimum equipment necessary at the time: if a walker will do, use that. Don't get him into a wheelchair before necessary as you'll want him to keep using his legs and keep building/using a bit of strength as long as he can
- Call any and every agency/charity/government for advice, source of equipment and aid to help you get "equipped". (lots depends on your country of course)
- Take a deep breath in the middle of all this and plan how YOU are going to take care of YOURSELF. Yes! - You think your husband is the centre of the universe, of course, but like the airlines tell us when we board a flight: "You can't save anyone else until you put YOUR O2 mask on". So...plan the time for a walk with the earbuds & good music in, a bath, a glass of wine or a coffee/tea with friend - whatever will move you - for a few minutes - back into that 'world of normal'. Be brutally rigorous with yourself to insist on time to restore, so you are at your best when you handle all that's coming your way.
Sleep, of course, if the most important and here's where I need to be held to account myself: I'm struggling, but I Have A Plan!...and I've put it in action and I WILL make the sleep situation better, because I WILL get myself and my husband through this as well as is possible!
(image of wind flowing through a superhero cape would be appropriate)
Alice, has John had physical therapy at Froedert ? They have a very good physical therapy department with therapists that specialize is neurological conditions . It could be very helpful in determining what type of equipment would work for John. If he could safely use a rolator type walker, they have a small seat if he needs it. In a pinch you could sit him down and wheel him.
I also found their knowledge and suggestions helpful to both Dan and I. They showed him safer ways to do things and had him practice so It would become natural to him. They helped me guide him through freezing etc.
Marie has made some great points. Could he be getting an infection ? This disease is so hard to second guess.
Do you have bars everywhere.? In Addition to the normal spots, we put one next to out bed,, a long stair rail in each hallway , an upright bar to pull on when entering the house . They gave him a feeling of security.
I’m sorry you have had such an awful couple days. I hope things get better quickly . I’m sending big hugs,
Thanks Karyn. Always so surprised as to just how kind everyone is on this site. I know you have your hands full and yet you still offer advise and encouragement. Yes, we presently are in PT @ Froedert. In fact, they just convinced John to use the walker and are waiting for the Dr. to write the script for one. We have another appointment tomorrow, so you know we will be covering the past 48!
I guess the biggest surprise was that I would contact his primary instead of the neurologist. Just assumed (they do say to never assume...) that they would have the latest and greatest info on John. Wrong! Hope I figure out the rules in time
Thanks for all the suggestions. Definitely going to check out respite care, hand bars and walkers tomorrow.
I agree regarding doctors. At this point I always call the neurologist ( a movement specialist.). Dan has not seen his primary care physician in over a year.
Unfortunately , I believe the nurse for Dr. Eichenseer is now familiar with Dans progression due to all of my calls. Most of my calls are regarding prescriptions for equipment , PT etc. Whenever I call worrying about fever etc, they reccommend I take him to a walk in clinic or the ER. It seems they are not understanding your concern that this is related to his neurological condition. Hopefully the physical therapist will be some help,
Hi, I am really sorry to hear this but it sounds very familiar - I had my mom and dad visit me when I moved to Europe - my dad started freezing in his steps a couple of days later only - a few days later, he would just sit down and collapse, he couldn't move a single step, we had no choice but to get him a wheelchair, it was heartbreaking.. my dad was a super active and outgoing person - unfortunately, he never regained the ability to walk as before again - plus he fell in my apartment s couple of times, backwards... he had trouble climbing escalators too, I never realized how bad it was till he got confused on the steps and fell on top of me, that was really traumatic - I am sorry but it's probably going to get tougher... I would agree to having some way to restrict him getting out of bed himself, maybe hospital bed type bars, if you don't have a hospital bed already, please see if you can get one - PSP patients jump up and try and walk all the time and may end up falling..
Is your husband on sinemet? That may help a bit...
I am not sure if it's such a good idea to travel abroad on a ship... Dementia patients get very agitated if their environment changes, anything new is not good, so a discussion with your neurologist and your husband's opinion would help here
Sorry to read your post and yes it is all familiar, I'm afraid.
For the freezing I found Chris responded to me singing a marching tune. I think this diverts them from the anxiety of not knowing how to move. I think its important to keep mobile and kept him moving, holding my hands for a long time. I would usually keep talking too.
When you are out you need to know you can manage, so a walker with a seat worked for us for a while. Then his steering was bad and he raced along in a sort of " slow fall " so I had to control it for him. A wheelchair gives you confidence - and he can walk and wheel it along as long as he feels he wants to.
I'm sure the holiday company can accommodate a wheelchair. Call them for advice.
Don't panic. You can cope. Its continual adjustments.
You are all amazing courageous people, I salute you. keep talking to each other. Love and prayers x
Investigate the dehydration or infection possibly. They could cause the weakness. To go from walking 45 minutes to a wheel chair would be a dramatic decline. He may recover this go round.
We live in the north of Spain. Rainy and wonderfully green.
In these 6 years of my wife´s PSP I have scheduled the winter and part of spring to spend in the south where those times offer a more benign climate and allow more outings, walks and entertainment.
Four years ago we went to Malta and these last three years we have come to Malaga.
Before each trip I am invaded by the responsibility and fear of a disaster happening but until now everything has gone reasonably well and the time we have spent in the south has been of quality.
With this I want to encourage you to take the step forward if you have only doubts. Bring a support person and an aluminum folding wheelchair with you, have plans "B" and ahead!
I send you by internal mail-personal experiences with my sick wife from 6 years ago, which I hope and wish will be useful.
I know every person progresses at different rates but I when read your post I had to go back in to notes on Dad and see what kind of timeline he had from onset of "foot freezing" to wheelchair for safety. He managed for about 5.5 months after he started complaining of his foot sticking to the floor to basically all big moves in a wheelchair. He could still stand with with help but no more walking.
Ron
My Dad was a faller but on top of that sometimes es he just couldn't move his legs or take weight on them, that usually was followed by an infection.
Dad had a walker and as time went on I used a wheelchair when we were going further than I thought he may manage or when he got tired.
You are going to have a memorable trip. A few things I found helpful when we travel are 1) a portable bed rail I found on Amazon. I could easily install and remove it. He uses it at home as well. 2) A gait belt. A must. 3) If he will wear them, condom catheter for during the day. Saves me from trying to find a restroom. I suggest you practice putting it on before the trip. I found it can be tricky esp. so it wont slip off. It stays on for about 4 hours. 4) travel john or, he uses Advantage Urinal system. So he doesn't need to get out of bed during the night. My husband does not have trouble with gait freezing, just getting his right leg to start moving. I have found that if I stimulate the nerves by scratching his leg or sciatic nerve or L4 or 5 on his lower back it "wakes up." 5) I carry a container of Thick-It or Thicken up in my bag. 6) My husband wears a "Bump Cap," which looks like an unobtrusive baseball cap but with an inner plastic shell. Has been a life saver several times. And something may happen, but you will find it amazing how total strangers will come out and help you.
Alice-I am in northern MN and would like to offer to you some of the equipment I used for caring for my mother who had PSP. I can be reached at 218-398-0034 if you'd like to share some thoughts and ideas. Kathy
I found that any time my husband had a sudden decline like yours just had, he would usually recover back to somewhat less than what he was able to do before. Then we would go along for awhile at this new level of ability until the next sudden decline and partial improvement. It's almost as if you're getting a little glimpse of the future before settling in to the new norm. It's doubtful that he would go from 45 min. walks to a wheelchair almost overnight. Of course everyone progresses differently so I don't think there is any certainty with PSP. At the very least, you should get a good sturdy walker and install grab bars and handrails in as many places as possible. Since he's having problems getting to and from the bathroom at night, you might also have him switch to using a urinal at the bedside. That worked for my husband for quite awhile. Also, don't beat yourself up over sleeping through a fall. You will never be able to prevent every fall. One more piece of advice; don't overspend on any of these fixes, because they only solve the current problem for a relatively short time, then you're on to the next fix. Just hang in there, you can do it!
My dad had this happen to him. One day he could shuffle along, even attempt Golf then in one afternoon his walking wasn’t there at all. Part of the problem was he was still on Parkinson meds. Once off these, and you have to get off slowly,he could still walk maybe 100 feet for awhile. He actually could always stand and take a few steps til just a few weeks before he passed. We never knew what to expect, but there were days that you could say he was doing better. Good luck. We are in Wisconsin too.
Alice, I pray you are still able to take your trip at the end of the month. What a special time it will be for you both. So far my dad’s PSP declines have been followed by months of plateau. I hope that is the case for you. Take a few weeks to get used to the new normal and hopefully you’ll be able to take your trip. Oh yeah and as far as the falling, my dads falls were loud enough to wake the dead. I think I kinda developed a pattern of light sleep like when you have a new baby you sort of “sleep with one eye opened.”
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