On the upside

Physio finally came on Friday!! On the downside they didn't give him any physio, when I'd just about got him to agree to a wheelchair they said we should go out for a walk!!! Arghhhh I'm sure that will put my blood pressure UP! I can't stand walking at a snails pace! Sorry to winge when I guess a lot of you would still like to be able to go out for a walk together, even at snails pace!!!

Heady hope you enjoyed respite

Thanks to you all



23 Replies

  • I'm the same. C can walk, holding on to me and with a cane. He tires quickly. Going slow is so tiring. Then he suddenly starts rushing and I am trying to keep up because he is actually going into a fall !! Its interesting !

    Jean x

  • Yes I call it the lawn mower walk...He pushes the walker way ahead of him ....like he is mowing the lawn up the hill....and then of course balance is an issue and down he goes......he still uses his walker, i'm just in front of it limiting speed...and constantly telling him, "Hands to hip and you won't slip"

    He only does it when I say it.....10,000 times haha


  • I often think people must think I'm mad. I'm reminding him all the time " hold the bannisters ", Lean forwards ", " bottom first " [getting in car !!] I get fed up myself but if I don't say it, he falls !!!

    Jean x

  • Do you find yourself ready to help others, especially the elderly get up or maneuver themselves....they don;t need my help its just a habit now...hahaha


  • Yes !! If anyone hovers whilst getting up I'm there balancing them ! Unwanted usually.

    Jean x

  • yes yes yes why do they do it!!!!!!

    love julie xx

  • Oh how i remember the start off slow and ending up at 90 miles an hour because his legs were giving out and he was heading for the custom made fall. Janexx

  • I know....My husband never walked fast even when not int the throes of PSP. So don't walk for your self think of it as therapy and it's all about him. Then go on your own dang power walk.

    They don't have a track at our gym but they have a longggg hall I make him walk....I sit in his wheel chair and "drive " him.......the falls aren't awful and even rare so I figure its better than it is worse...His neurologist is at the end of the hall if ever we need a dr!

    Let me give you a few helpful hints if he is still ambulatory.....

    When getting up from a seated position have him look down and lean slightly over as if to pick something up from the floor. This sets his core balance fwd a so he does not fall backward. and its just enough fwd that he doesnt fall that way either....I hope that makes sense. It is also good for sitting down so he does not go crashing bacwd in his seat...And like Bruce, Through the seat.....so many chairs! The PT told him to reach for his ankles as he is getting up and look down when he is sitting down.

    Quite frankly, I cannot remember anything else the man taught Bruce...Oh how to fall

    When he feels the fall, just drop....instead of falling over like a tree and well in our case through the window or toilet or of course the furniture....

    Now B's ability to solve the fall problem never worked for him.... but now he has me EVERYWHERE HE GOES, so not as big of issue as days of yore....

    B had the same experience with Occupational therapist and first speech path as you had with your PT....they refused because he would not respond positively ,ie get better!

    Second speech lady was wonderful.......but it was for swallow therapy.....so sometimes you gotta fight for it and sometimes you got to step aside and just do whats good for the man....and crap is there anyone out there just to give you some sympathy...cuz I so need to cry on someones shoulder...im just holding it in....no where to put it.......im gonna implode!


  • Oh I Soooooo need a shoulder to cry on too, you can cry on mine if I can cry on yours! There's hardly a day I don't cry, and I haven't found a shoulder yet!!! I had wondered if he don't want to go in wheelchair he could push me haha!!

    Thanks for the sitting standing advice, sounds good I'll try and get him to try it xx

  • the sitting standing advice really does work....now crying on this computer.....it works too but there is something about physical contact that is all yours....you know , not just a cursory hug; saying hi or bye....Maybe I need to get a stuffed animal ....still not human tho!


    ll get through this right... Max Lucado(?) has a book by that title talking about how life suckks and how Joseph the kid with the coat and ultimate 2d in command for Egypt got through it....It's a simple read. I liked it...but I still need a shoulder.....


  • A , Good get it out we can take it. Yes it's good for them to keep walking but it is also important to get them out and when you have a wheelchair, the world opens up to you. My husband resisted first the walker then the wheelchair. He took so many blows to the head. Lost count of trips to the hospital and stitches , concussions the whole works- it was awful. But the first time we went on an outing in the chair we had so much fun that he was ok with it. He used walkers side the house, chair out. A wide lifting belt helps to got a good hold oh him for lifting and using the walker. I found one online with big handles pretty inexpensive.

    Tell them you need the chair for transport. But try to get a combo one that he can push himself if he wants too. By the time I did he was too used to me pushing him around. Here in the states insurance will only cover one so we ended up paying out of pocket. Look up whirlwind mobility the rough rider is great, the company fantastic. It works well with wheelchair accessible vehicles. If he continues to fall he will lose confidence in walking and eventually the ability to as well. That usually happens eventually anyway but there are exceptions to everything with this disease no rhyme or reason to when and how symptoms occurr. I just know ( as awful as it sounds) once stopped using the loo ( became incontinent) and wore protective pads and pull-ups and started using a wheelchair life became more fun for both of us! He can sit threw a film, go out to dinner at local pubs, museums etc. I told him people associate walkers with being old but you could be handicapped and using a wheelchair at any age. His pride is everything to him so he liked that. People are so friendly and gracious to us as well everywhere we go. Also here we have a weighted walker that keeps you from falling backwards. It is usually prescribed for Parkinsions patients but works well for other disorders. We just did not get the laser feature that helps when PD patients freeze up. It is heavy but It does fold up for the car. It also only moves when you push on breaks/ handles which does takes getting used to. As breaks usually are used to slow or stop like on a bicycle. Therapist said this keeps them from lurching forward or going to fast. It is called a U Step walker. Was a lifesaver when he finally started using it. Would have saved him a lot of bad falls and injuries if I could have convinced him sooner. I have on here more than once to get these things before you really need them. Hard to do with insurance and red tape but worth the effort. I learned the hard way. Also I discussed it all beforehand with him all of this so he would at least be positive when he was evaluated for getting help. Hope some of this useful. Be good to yourself.

    Take care,Jayne

  • Thanks Jayne. Yah I remember the UStep it was on loan from the PT. It was nice , though B bent it up rendering it useless for the next patient! Laser feature doesnt work on our mates anyway ////they're horizon is much higher than the floor! You know, it's true getting them out is important, even if they're not walking.....WE have been stuck in the house and B really just sits there.....When I feeel well its the gym the library short drives to look at the sites and of course the grocery......but this last month has been the recliner and all points in between.....I'm getting better...and I need to just kick my self out of my depression......and thanks for the write I really enjoyed it!


  • Hope you are feeling better. Know it sounds Pollyannaish, but I have been writing things I am grateful for on cards and hanging them up where I can see them. I am also going to start exercising again. I have never gone this long without and it makes me feel achey, lethargic, and blue. I'm not a runner but I feel like just taking off- ha! Settled for a bike ride. Could not believe how much I hugged and puffed and my legs burned so badly( muscles not skin:)

    That I could hardly walk when I came home. Noticed my spirits were higher though. Hang in there much love. Jayne G

  • Thanks J. Come to find out I was actually sick! Could not breath....Could not stand for any length of time....No sinus, no fever no cough no nothing except occasional vomiting and COULD NOT BREATH !. Doctor said whatever you had , you have only the remnants but here take these anyway....helped me a bit....but just natural course of time healed me the most...and tried desperately to get out of my funk helped too....We are back at the gym...well, B is, I only go to accompany him...had to give up my membership...too expensive for two.....

    Good for you burnin your thighs and maybe calves as you wheeled around your on your bicycle! And I have a refrigerator door full of happy sayings and several books that are lifter uppers ......I can't do this on my own...need that higher power!

    Thank you for the write.....Even this has lifted me up!


  • :)

  • You sound a lot like my wife. We went through the same decisions together with almost the same equipment that your husband uses. Mary takes good care of me even though exercise and determination has put me back on my feet. She spends a lot of time reading in waiting rooms for me. She is my spouse and best friend. Sounds like you are the same to your husband. It was nice to read your story. My compliments to both of you for your teamwork. It is an inspiration, a positive note about the goodness that we all have inside of us.

  • It is so important to have a mate to hold on to. I am glad you guys have each other as well. My husband just got out of a 2 week stint in a rehabilitation facility and I am amazed at what he has recovered! Gave me a good boost of hope and perseverance. We were both starting to just give in there for awhile. We both have a little more spark for doing things and a lot more gratitude. I am definitely more patient with him now as well. Keep up the good work. Best to both of you. Hugs and continued perseverance! Jayne

  • Debbieann the slow pace and odd balance throws are frustrating but it is useful exercise for the PSP sufferer. I know it is frustrating but it is something that helps keep your partner mobile and fit.

    For the last year M's mobility has slowly got worse this time last year I was able to walk her a good 50 m on my hip holding her upright and doing a type of slow paso doble before transferring to the wheelchair. Over the year distance reduced to just around the house. Even this has now been lost since Mid Jan she lost ability to get going and often double stepped on same leg (usually left side) really throwing my back. Then the Physio and OT saw me moving M during a home visit and called a case conference GP, Nurses, care Agency, OT and Physio. They removed my Sara stedy saying it was putting us both at risk when I stood her up they insisted on double handed moves using hoists, besides my ceiling hoist I now have an Oxford midi, and whelk chairs/ commodes and increased visits to 4 times a day. This is a pain but I refuse to feed M in the lounge or bed so they help move her and once I have fed her move her back to lounge.

    I have been told if I do not follow instructions and continue to try and manoeuvre M on my own I could permanently hurt myself and so be unable to care for M. Catheter last Friday has meant less need to move M so not too frustrating waiting for Carers though still not convinced I cannot mobilise her on my own except since I stopped my back is less stiff and sore, so maybe they are right.

    Anyway sorry about the long homily, the main point is that I continued making M attempt to walk until now against OT advise I think it kept M more aware and less sleepy probably extending her time by a year. Since stopping her walk I note she is less awake even in the wheelchair on the prom. Best wishes if he is reluctant to walk set him a target a tree or lamp post and then allow him his wheelchair. Tim

  • B is still walking but I often am behind him holding on to his waist band. When I know he's steady enough, I'm in the front guiding him. But yah this time last year I don't believe he was using the walker as constantly as now. And I sure nuf' know I wasn't his constant companion.....So the progress is progressing.... The other day, I even made him a urinal out of an oil funnel and tubing.......I wish I had thought of this last year, it's amazing how well it works...I think maybe I did think of it but Bruce was not ready......oh well...we are here now ...I have my grandson right now. Wow it feels good to prepare a meal!!


  • Great idea the funnel and hose, will put it at back of mind for the time I need it hopefully many years time, although knowing my aim may be need it some days now.

    Have a good meal with children and grandson, I know what you mean about a proper meal.

    Best wishes to you and your Valentine (B)


  • Likewise, Tim happy VD...hahaha

  • Yes I know I've got to do it, I'd been hoping to start walking(weather permitting) for some excersise for myself, think I'll have to do two walks, one at his pace then one at my pace! They also said we should play games like chess or cards, to keep his mind alert but I think that will be even more of a challenge!!

    It's sounds horrifying, all the equipment needed, for lifting etc, even simple tasks must take a lot of planning, they says husband is doing well, but as you know you can see your other half declining all the time

    Hope the catheter continues to work out for M, and you get a good nights sleep

    Best wishes


  • Thanks Debbie.

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