When to get a wheelchair?
Every day I am really struggling to move about the house and use up,so much energy just getting from one room to another,, not to mention how frustrating it all is. And today i nearly lost it in the supermarket, - I seemed to be in everybody's way, and completely froze for ages in the doorway, trying to get out!
Would it better to admit defeat, and get some wheels? And reserve my energy for outdoor walks, which so far are no problem, and cycling. It does seem so weird that these things are possible but I just cannot get myself moving indoors, and when I do manage to walk, in a few seconds I freeze again at a turning or doorway etc. Gets worse as day goes on, but today has been extra bad since midday.
This has definitely become an increasing problem over the last two or three months. Don't see much alternative, to save my sanity if nothing else. All advice gratefully received.
S.
I can relate to what you say , when you.get up in the morning bet you can walk for about 5mins then it all goes wrong , supermarkets and shopping malls are a no no as you will freeze people will just keep walking towards you and you canna function !!! If you do go shopping get a trolley and lean your elbows on it take the weight of your legs as much as possible only let the weight on your legs when you stop walking to pick something .its strange how we start to get worse as the day goes on .try a wheeled zimmer with brakes for shopping malls ? I don't know it's a shame you have all that leg power to go your bike but canna walk , I think we need to keep cycling for leg strength to stop us falling , I can relate to your every word for I am a carbon copy of you in every way doors ect . You take care my wee sunflower
I expect you have researched the various ways you can trick your brain to unfreezing your feet. This is a link to an innovative "aid" - not megabucks - to walking in the house based on the fact that the inventors uncle could walk upstairs but not across the room It comes about half way through the video.
Its probably too cheap to interest manufacturers. If I ever come back to this life it will be as a supplier of disability aids. Loads of expensive items languish unused.
Supa My wife uses a Homehelp trolley that has two trays and four wheels around the house. When we go out she has a Rolator that has four wheels a seat incase she gets tired and brakes. Both these aids are very good and a big help. have a look to see if they are suitable for you
How long have you had pd supa whats your On time every 4hr window. I take dog in morn for a walk when I'm on then use mobility scooter to get to fitness centre still on but try to use my on time more effectively then come home bite to eat take dog for walk again then rest.don't give up keep fighting try to plan your on and off days.don't over do it.and if you not getting a lot of on time have a word pd nurse
Thanks to everybody for all your responses. Lots of good ideas. And, you are all singing from the same hymn sheet - ie. keep using mental techniques etc. and find other ways to keep walking.
Suppose it is like the saying, "if you need to ask the price you can't afford it" in that if and when a wheelchair is essential I won't be asking the question. Think I had had a particularly bad day!
Ian - think I will go to supermarket at night, when fewer people. It is open 24 hours! Trolley is a help until I need to turn a corner, then I tend to freeze. If fewer people in shop should be able to make bigger sweeps around corners! Realise part of the extra stress was that they had moved all the goods around (grrrrrrrr) so I couldn't go straight to my regular purchases.
I know what I need - a big lollypop sign to stick in the trolley, saying
I WOULD LIKE TO GET OUT OF YOUR WAY BUT I CAN'T.
BLAME PARKINSONS NOT ME !
Eileenpatricia - yes, laser lights are helpful. But, not at that price. I use a laser pointer, like lecturers use to point to screens, costs only a few pounds and goes in ones pocket.
Really liked TED talk video -Thanks for that link. Not sure where to get an " illusion stair rug " from, but intend to draw up and try out a simple cardboard version.
Billywhizz - thanks for that. I certainly need a house-trolley of some sort as I can't carry anything and walk at same time.
Gus - I first noticed slightest movement hesitation 3 years ago, summer 2013. Took about 9 months to convince GP and get neurologist referral. Started Madopar April 2014, DAT scan confirmed diagnosis October 2014. Had actually had handwriting problems since 2011. Seems to have been very fast development to me, and huge increase in medication needed. Take Madopar 100/25 every 3 hours during day, with Entacapone, sometimes need it very 2.5 hours. If I go really off the next dose does not kick in properly. Use Madopar dispersible when needed too, usually 2 a day. Also a 100CR at bedtime and another one during the night as last only about 4 hours (stops restless legs).
Good reminder about heel walking. Thanks. Mindfulness is essential with PD !
When my Grandfather needed a few bits around his house we contacted our local Gp practice who sent out a occupational therapist to assess such things he needed around the house a trolley has been supplied so he can cook in the kitchen and then move a plate and cup around without spilling it all, they also lowered the freshholds so he didnt trip and to move with ease the wheels about.
When I'm out walking i sometimes listen to music via mp3 player a good tune bom bom bom lol is best to keep me moving at a pace.
Thanks S A. I had been wondering how one got an O T assessment, so now will ask at my surgery.
I have tried using both a metronome and music with a good beat indoors but not found it helps much. Think it is because there is no regular rhythm when moving around the house or kitchen, it is all start & stop. In contrast, I'm OK going upstairs, and if I say left right left right to myself near the top, usually am OK walking along the landing, which is the longest space in the house. If I don't concentrate on this rhythm though, I freeze at the top!
Yeah your right sea angler i went to gp .they came out and fitted a bed lever help me get out of bed.supa i am going on the new drug safinamide works like entacphone but only one tablet and less or none dyskinesa will let you know i thought you were on azilect as well
ot assessment was done at my house and I came home today and I have a handrail throughout the hoose and it's brilliant what a difference walking is easy now and it's really good especially in the bathroom and turning is so easy , tell you it's the way forward supa good luck , happy boy Ian xx
Yes I was on Azilect for about 3.months, but stopped taking this in February. During previous three weeks had been feeling increasingly nauseous in afternoons, and poor balance on turning and feeling generally very “swimmy” and unstable. Also overwhelming daytime sleepiness. Reduced dose by halving tablets over a week to none. After a few days more alert and less nauseous, completely gone in a couple of weeks. So can only assume was due to build up of Azilect.
One trick I may have already mentioned. When I am very off and have difficulty putting one foot in front of another, I turn around and walk backwards to my destination. It works well for me.
yes, a good technique. I walk backwards a lot in the kitchen. It is only about 3 paces across, so can't get any sort of rhythm going when trying to cook. Just have to make sure the dog is not there. He added the " out of the way" command to his vocabulary some time ago.
