do others freeze before falling?

my gp had not heard of the freesing of parkinsons and psp and htught i meant thtat my foott /ankle wsa v cold!!

ii tend 2 freeze/ stagge/ totter andm then throw myselff forwards

makign alot of noiisi wororyign the people down below and fringthening my cat!

plz let me know what uyou think

gp coould only suggesst using wheelchair inside- i have 1 f4m when i frractured my anklei

love jill

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  • Hi....my husband Frank tends to freeze before walking. I call it a " stuck foot "

    His body moves forwards but his foot/feet stay where they are until I " gently " try to persuade him to move them. This is why he usually falls forwards instead of backwards as expected with PSP. I used to think it was because he was top heavy....very broad shoulders but slim hips.....but he still does it even now he's lost well over 2st.

    He always has to have someone with him when walking so I don't know how you manage on your own. I have nothing but admiration for you.

    Take care & keep smiling.

    Love Hazel B xx

  • i agree with Hazel, you are really wonderful still managing as you do. My husband (also Frank) froze when he had to go through a doorway, and had to be persuaded and helped move forward. When he did fall, he uttered the most frightening noise.Please take great care of yourself, and i hope you get plenty of help with you imminent move.

    ? kay

  • Dear Jill

    Sorry to read about the latest hurdle PSP has put in your way.

    My wife suffered with the same problem .

    Like Hazel I used gentle persuasion and encouragement.

    We did try one thing with a modicum of success -- when you freeze, rather than trying to just move your foot to take a normal step, try to imagine that you are having to step over something, This encouraged Anne to move forward for some reason.

    Anne's mobility subsequently worsened and all her transfers are now in a glideabout chair that the carers and I pull her around in.

    With regard to your problem -- is your new flat wheelchair friendly so you could propel yourself about ? You can get narrower indoor wheel chairs.

    I would suggest you get an OT referral asap to discuss your problem -- a real big advantage of using a chair to glide about in is that you virtually eliminate the risk of falls and the injuries etc that go with them.

    Give me a ring if you want to chat about it

    Good luck

    Roger -- Southport

  • Dear Jill. Unfortunately I can't offer you any pratical advice but what you and others are describing sounds like a symptom called "gait-freezing" or "pure akinesia with gait-freezing". A neurologist should be familiar with these and could offer you more specific advice. Hope this helps, Zeshan

  • Mum freezes and/or staggers almost exactly as you describe above, and sometimes it makes it very difficult to walk with her and help her, as she pulls me off balance too.

    I'm in awe that you're still managing by yourself. Hope this helps.

    Idris

  • Hi Jill

    Isn't it utterly frustrating when a doctor doesn't know the facts about PSP or Parkinson's.This phenonmenon of 'freezing' happens a lot to suffers of both these conditions.My late husband Richard often 'froze' - especially when going though doorways - although as the illness progressed it did disappear.

    When he moved to a care centre and therefore had to have a new GP, I first asked his new doctor if he had heard of PSP. He admitted that although he had heard of it, he really didn't know much about it. I tactfully asked if he would like some information sent to him from the PSP Association.Luckily this GP was happy to co-operate and the next time Richard and I saw him he thanked me for arranging for the info he'd received. Maybe, Jill you could do the same for your GP?

    So many times when I took Richard for hospital appointments time and time again we came across doctors and nurses who knew nothing about this illness. It didn't exactly fill us with confidence knowing we knew more than they did. I got so used to reeling off the main symptoms of PSP in about three minutes flat,that it was almost like remembering a script.

    Good luck Jill and do take care of yourself.

    Love

    Maggie x

  • Hi Jill it is good to hear from you! My husband Dave has been sick since 2004 and he has been off balance since 2008. I have been pulling and pushing him for four years but have finally opted to put him in a wheelchair. We have had multiple injuries to my 5'9' 140 lbs frame and to my daughter who is 5'7" and weighs 125 lbs. Not very substantial frames for either of us to handle a 200 lb 6 foot man. Even our caregivers who are substantially larger are getting hurt It is finally time for a wheelchair in the house even though I never thought I would give in to it. I believe that you will be strong for at least 2 years and I pray that you will be strong forever!

  • Hi Jill,

    Mum used to freeze or 'get stuck' sometimes when she was more mobile. My sis who is a physio suggested that she stand and rock gently from side to side for a while and then move once the momentum had built up a little. It seemed to work. Gently does it though!

    Take care

    h

  • hi h

    the rocking wa s suggestedby a physio too

    btut i had fallen by the tiem i even thought what to do!

    i now try dn lfit my feet more hwen i walk heel down 1st otherwis ei totte ron my toes and fall

    and i hav eto think of the clock when turning 3 oclock nad 6 oclock esp turnign right

    but i am too quick when trhign t o get anotu my flat - everytguigb has speeded u p wih PSP and has become anxiety llled

    thansk for yoru ideas

    love jill

  • Hi Jill my Mum froze too but I used to walk behind her and gently bend her knee forward with my knee and she would move forward,but she felt safer in her wheelchair. See your OT see if he or she can help. My heart goes out to all of you who suffer from PSP. Lorra

  • Hello Jill - came across your post just now and hope this answer is not too late. I was diagnosed with PSP in August 2010 having been told i had PD since Sept 2008. I too have problems with feezing of gate and always fall forwards like you. My neuro-physio suggested that when i experienced such an episode my husband should put his foot out in front of me so I could step over it and amazingly it worked! We had been using this technique successfully for many months when I came across an article about a LASER CANE which projects a red laser line in front of the user so they can step over it. I have been using the laser cane for just over a month now and it is truly amazing - I am now able to move effortlessly from room to room whereas before I always got stuck for ages in the doorway and getting into lifts was a nighmare - but not any more! The cost was £170 which sounds a lot to invest but for me it has really made a diffference to my independance. I would be happy to let you have details of where I boiught it from should you be interested. Best wishes SueW xxxx

  • HI I tjhink i willl get a laser cane

    i inquired about the frames with a laser but they r more for PARKSINSONS and fo rpeople who falll backward

    thanks

    love

    jill and a ;-)

  • Hi

    I'm new to the group.My husband has PSP.He tends to fall backwards.He uses a walker in the house,but someone has to spot him everytime he gets up from his lift chair.When we go out of the house we use a wheelchair .He was diagnosed a year ago ,but his falls started in 2007.We were going to the VA and they told us that J had Korsakoff.That is a form of alcohol abuse.I knew there was something else going on with him.When J turned 65 he got Medicare and we got a private Dr that sent us to a neurologist ,who sent us to a neurologist for movement disorder.It took the doc about ten minutes to diagnose him with PSP.You are so right that most people haven't heard of PSP.J freezes when he first stands and going through door ways.J's right foot turns in and he started Botox about three months ago.Medicare only pays for Botox every three months.We're not sure if it helps.Has anyone had Botox for this?

  • I've been told I have pure akinesia gate freezing. I like you am falling about all over the place. I have broken my upper arm an d have hurt my back and had bruises all over. Luckily I have a husband who is my carer. I wake up in the morning and wonder what I'm going to fall on today. The only place I feel safe is when I go to bed! I find it so frustrating. I was told originally i had parkinsons disease as my writing was small and I was slow in movement but I have no tremor. This freezing really is a problem if only someone could find a cure.!

  • Hi Jill

    I find that try to put your heel down first when you walk helps!

  • hi camper and all

    i have been tryign a new thing su ggested by the physio -works up to a point

    if i count and go more slowly and always iwht my 4 wheel frame then when i freeze i stop count to 2 and start off again]

    i tend to freeze goign in and out of doorways /when i have ot stop /or turn around and fall in a split second throwing myself fwd

    but i really ahv eto concentrate on walkign if i carry even the smallest thign i tend ot falll etc

    and do nto want to hurt,myself much moe

    despite wearign knee pads i am covered in bruises and really need them 4 the elbows now

    love jill

    ps how do i do a smiley??

  • Hello jill - i tend to fall over if I am carrying the lightest of things - most times my husband is around to grab the items from me in the nick of time - but not always! I frrustrate him utterly when i forget to wear my knee pads and fall over and hurt my knees. I had a bad fall in the kitchen last week, in fact my first backwards fall which is rather worrying! I have always fallen forwards up to this point. I really hurt my lower back and especially my coccyx which is very painful this week. What a terribly frightnening thing this PSP is. Not having any warning of when a fall may happen is the worst. My most embarrasing fall to date was at the front entrance of a large supermarket - my sister in law was with me and she got the shock of her life! I also noted that of all the people in the area only one lady came over and asked if i was ok - the others probably thought I was drunk maybe!!??

  • hi ssue

    yes the unpredictabilityh fo the fallling iis v difficult to live iwh

    i have mhy knee pad son 24 /7 unless i am in the shower (really) and even when in bed htey r aroudn my ankles as it is so mucheasier to get up adn ge tto the bahtroom quickly

    And i have realsied via this v ood physio that i hav eto really think about my walkijng- somethign from havign leanrf to walk as a baby that we have done so naturally,

    but not any more

    i use my frame outside and people around hte town and iat hospital r good and tell me o tkake my time

    i am realising that i do want to keep as mobile as possibel and haveing a good arm to hang on to is as good as anything

    \my carer is really good at this and more so than my partner who winds me up at hte start fo a journey and makes ajkoe of my falling

    or by saying i will really have ot think of what holidays i can manage . meanign none at all i think!!

    love jill and a:-)

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