a poor few weeks for falling: i have been... - PSP Association

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a poor few weeks for falling

jillannf6 profile image
14 Replies

i have been falling much more than usual and really am startign2 fidn ti v diffficult to "get up ajdn carry on"

it MAY be the stress fo the house move ro it may be a worsening ot the PSP.

I am falllign a dozn tiems a day and more in my flat ndd sometimes when i am outside0- the freezing si getting worse

i have fallen against hte toilet roll holder in the batharoom adn hurt my irbs . then the next day my balance went again and i fell against a square box in hte barhroojm which hodls all the towels and bruised my ohter leg

THEN i fell twice yesterday fwd down a couple of stairs 2 the fir sttl anding an dthen repeated the exadt same thign - i missed a stair each time- i am iny wheelchair a the moment as the 2nd fall has affected my calf and i cannto stand and bear any weight on the leg

i HOPE to eb ok for XMAS and am really going to take e ti easy- i is so trustrating no tto be able to do htings for msyelf and i get v aggressvi eabout it

sorry this has been a negative blgo but i hav ebeen in tears towards the end of eahc day when the balance has got so much wprse

luv jillxxx

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jillannf6 profile image
jillannf6
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14 Replies
PAT0 profile image
PAT0

Hi Jill, I have read all your blogs and they have often been inspiring, I am so sorry that you are having a bad time at present. My ex husband, who at present is in a nursing home also had some horrendous falls this week, twice he fell through the wall in his room leaving two massive holes. I take him out for trips to visit family etc and I know that when he falls he gets very tearful afterwards, he too freezes, I found him standing in a corner of his room unable to move and he said he had been like that for about 10 mns, it upset me to think how long would he have been there if had not called. Keep smiling Jill I know it is easier said than done!

My thoughts are with you

PatO

jillannf6 profile image
jillannf6 in reply to PAT0

thanks pat

i am sitll tearfulf nto least becaus my ca t wen tmissign for w24 hours FRI NIGHTI ( he has neve rdone i tb4)nut hs back now noen thg wors efor wear

and i am a bit emotional anyway at he moment with xmas comign yp

but i am sitll here and can enjoy lookign out on to a fine day- all snow goen 4 now

i am asking for more care fm social servicies

love jill

kay1 profile image
kay1

You have been an inspiration to so many of us, and I am so sorry to hear of your more frequent falls, please get as much help as you can from Social Services and I hope there will be plenty of help for your move. Glad your can is home, night on the tiles? Take care

x

kay1 profile image
kay1

*cat* ;)

CateT profile image
CateT

Dear Jill,

I'm so sorry to hear that you are having a bad time. It must be so frightening falling like that and I can hear how difficult it is for you feeling that you need to rely on others to help. I guess just resting and giving yourself a break may help you to feel better. There are so many ups and downs with PSP. I am sure a better time is on the horizon.

And I echo what others on here say - you are so inspiring but it is ok to need help too.

Lots of love

Cathy

anniemay profile image
anniemay

Hi Jill, sorry to hear your falls are increasing, I can assure you stress makes falls increase! My husband has has psp for 8 years, and if he is stressed or distracted he falls a lot more often. Trouble is that the illness seems to result in only being able to concentrate on one action at a time, so if he is walking and something catches his eye, over he goes, same if he hears something while he's on the move. Knowing this, it is still hard to remember only to concentrate on what he is doing at that time - he can still do it all in his head, its just that the body doesn't follow! As you are on your own for long periods, I would suggest from our experience the following:

1. Get the physio to give you a simple series of exercises that you can do in bed morning and evening - its important to build up your muscle tone so that your legs still have the strength to carry you and your arms have the strength to pull you up when you fall!

2. Use a zimmer frame around the house and have plenty of grab handles in places where you need to turn.

3. In each room have things arranged so that you can use them without having to turn, eg. getting dressed, using the bathroom, preparing drinks etc. in the kitchen.

4. Think before you move - where can you hold on to, where can you stop and get your balance (leaning against a wall for instance) before you move off again.

5. Do get all the help you can - and tell them what they can do to make things easier for you because everybody has different needs.

Dont despair - after 8 years my husband still gets out and about quite often, enjoys his food, television, sudoku, and visits from friends and relatives.

Hoe this helps you a little and that you are feeling stronger,

best wishes,

Ann

jillannf6 profile image
jillannf6 in reply to anniemay

hi ann

thanks for your reply

i do appreciate the care you and everyone takes on the site

and i iam feegin a little better now

i saw a physio yesterday =( supposed to be a "falls clinic" for parkinsons at the hsopital) but we did not getv far apart from al the ususal details taken yet agaiin

and i shall see in th enew year hwo it may help.....

ove ejill

LesleyB profile image
LesleyB

Hi Jill

It has been a while since I have been on the forum so I was sorry to see you have been having such problems falling. I know how distressing this will be for you, but I also know you are a fighter and you will get through this difficult phase. Hang in there Jill and make sure you get as much help as possible. Glad to see you got your cat back, that will give you a lot of comfort.

Take care Jill

Lesley

dorothy-thompson profile image
dorothy-thompson

Hi Jill

So sorry to hear that you are falling more often and hurting yourself. When my husband falls, most of the time I seem to be in his way and I get hurt and its not very nice!

I also feel a bit humble, complaining about my husband when you show me the other side and give me a glimpse into what it is like to have this condition.

Glad you got your cat back, take care.

dorothy-thompson

judy1962 profile image
judy1962

Hi Jill, hang in there sweetie. I wish that I could come help you. I can't even imagine my poor husband trying to manage on his own with this awful disease. Can your PSP nurse send some aides to help you with daily activities that have become more difficult? I am praying for you and I wish you a very happy Christmas.

Love, Judy

IsraelZehavi profile image
IsraelZehavi

Hi

Im sorry to hear that you are faling so many times. do you wear any safety staf for you protection/ if not i recomended to you the following

1 helmet,of people of use for skeitbord

2 Back protection, go to web side of for bikers and lokk over there

3 elbow protectors, any sports store

4 underware hip protectors, go to hipsaver.com,the ones has telbon protector

Please as soon of get out the bed, put the protectors gear inmediatly you willfeel more safer.

Any questions feel free to call me at 650 906-8869 cell or email.

all the best Israel Zehavi

Fiona_McL profile image
Fiona_McL

Jill, you know how much we all care for you and worry about you; that's why we've all started to nag 'get more help', 'get the OT to give you grip handles and all sorts', 'talk to the social worker' etc etc :) You are such a star and we don't want to hurt yourself any more!

PSP is so horrible and you're doing an incredible job with it- but it's damn difficult and you don't need to do it on your own.

Have you been able to get to a support group locally? Would anyone there know key contacts in 'the system'- the folk who can actually do something? It's exhausting and stressful to have to think of everything for yourself. Maybe the local information worker for the Parkinson's Society may be able to help?

Do look after yourself and **get more help**

:)

Love

Fiona

jillannf6 profile image
jillannf6 in reply to Fiona_McL

hi fiona

thansk fo ryour advice = see earlier replies re social worker / physio etc

i knwo it will b difficult for you the 1st xmas without ur mum but hopefully your family will eb some consolation

and you can raise a glass to yoru mum and for me too

(red wine 4 me helps the constipation!! and chocoate too1!

love jill

xxx

jillannf6 profile image
jillannf6

hi all

thanks for all your comments and suggestions

i am seeign the social worker (4 jan) fora reassessment

am havinG my 1st physio appt tody (a cancellation) with the physio at the loca l hopsital arr by the PARKSINSONS NURSE

AND am tryign tor res t up b4 xmas and enjoy the GOOSE

LOVE

JILL

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