Where are you sunflower ??
Wondering about you and how your getting on and edd as well ? I will wait eagerly for a reply hope all is okay with you as we are the closest I have seen in our problems with PD you sound a clone of myself
tooraloo Ian xx
Hi Ian
I am sorry not to have posted much.
I am really fed up at the moment. Every day I seem to topple over sideways indoors somehow, no major injuries, but keep on bruising my right arm or shoulder as I save myself. Have wheelchair, but trying not to use it all the time.
Supposed to be going to Staffordshire to my partners big family get together and his nieces wedding next week but getting rather stressed, keep wondering how I will cope. Two nights in hotel. And then travelling on to Lake District to see my best friend, five nights in another hotel. Taking Eddy with us. He will love seeing his doggy cousins again. Keep thinking I can't cancel as if I do I will never have the confidence to get away from home again.
Sorry for the moan.
I was so pleased to read on another thread that reason has prevailed and you've got your driving licence back. Is there is no complaint or compensation procedure as you lost your job?
Think the hot weather is heading your way! Summer cycling?
S
By the way. Ed is far too hot in his black winter coat. Although much has come out by the look of our carpets!
S
Aye aye supa
You go for it don't back down , but as you already know the more you stress about it the worse you will make it , plenty rest before you do things should help a wee bit . It's not easy going somewhere but I find I really don't care about people but I still freeze up a bit and can't get legs to go at all , but we get there in the end Christ sometimes I get so tired trying to walk somewhere I just sit down anywhere till i can try again , the toilet walk have to try and go early as if you get stuck and sliding my shoulder along the wall can be a long walk and get tired trying to get. There . But you can do this trip supa and am chuffed Edds going too !! Stay strong sunflower tooraloo
Ian xx. ( ps I am not fit to work anymore ) but am happy. !!
Ian, thank you so much for that.
It has really helped. You definitely are on the same walk as me!
As you say, I get so tired just trying to.walk and yes, early toilet trips are essential to give us time.
I will go, and it will be fine, especially when I see my friend.
Eddy sends you a big wag !
Many thanks.
S
Supa, My wife has balance Problems she has been using a trolley that has two trays to get around the house she's been using it for about six months now. She would fall without it.
Hayes aye Billy
we are all different balance is not a problem it's walking that beats me but there's none of it good eh , I feel Blesed I still have balance but if I put something in my hands to carry I can't walk , sometimes just can't walk aw am moaning ! I just trying to explain how different we all are good luck to you both Billy
ian sorry for butting in Billy
Supa,
I nearly didn't go to meet forum pals as my tremor sometimes gets the better of me, my right foot is turning outwards and the ball of my foot strikes the ground first. I easily topple over and get tired so easily.
Not a moan feast that's not my intention but just to say , I was so pleased I mustered some strength to go as not only were the parky folks supportive so were the so called "normal walkers" , you will be fine, enjoy yourself , you walk a bit slower but you are still a lovely lady. I find the tena lady advert quite true , have a look on google, search tena lady ad, links to advert, entitled very funny by Al Lex dated march 2013 for those occasions when the loo is a marathons distance away xx it is a comedy version and should cheer you up. xx
OMG! dont think I am suggesting this is a problem for you, but thought it was a good bit of girly humour xx
I read this post with interest last week and watched the video link especially the stairs part in the middle.
I thought I would try out the idea.
If my avatar is right, you can see a photo of my version of stairs to trick the brain. If the photo doesn't work, I'll keep trying.
This works for in the house. As yet, I haven't adapted the idea for general use.
My post above is referring to a post by EileenPatricia way back on the first page of this topic July 26th 2016
Aye aye Lin
i know a couple of PD lads that say they can use the lines on floor tiles and paving slabs to great effect to keep moving ? Maybe worth a try
tooraloo Lord o the highlands Ian
Hi Lin
good idea. What did you use to make your visual stairway?
S
Thanks everybody for your ideas.
i find that initially physical or visual aids help, but then in a few days they seem to stop working.
Really only mental imaging, eg. counting or estimating number of paces, etc works, but this js exhausting as it requires so much concentration, all day, every time i need to move.
S
Teehee
you live up to your name! Or down to it!
No offence taken.
Couldn't find the video you said, sooooo mamy on Tena pages, can you post a link?
S
Hi,
I am not good at technology but if you put tena lady ad (very funny) in you tube search, should bring it up, enjoy! Made me laugh! I have a tremor on my right side, I am right handed. It was cold one night and I couldn't insert my key into the keyhole to unlock the door, due to shaking so much. It was like an episode of the "golden shot" , unfortunately for me, the delay meant wash day was brought forward. I have a new door with a key like the old style car ignition keys, easier to hold and a much faster time for unlocking. Thankfully I can now open the door quickly, but refuse to succumb to elasticated waistbands just yet, if need be, I will just go out wearing a fur coat. (fake fur ) keep smiling, xx
Teehee
Found it! Good one.
S
Hi Supa,
Sorry, have you been waiting for my answer? So far, my home-made staircase works well for me.. We made it out of a roll of wall-paper and parcel tape. Therein lies the problem of course! It is big, bulky, cumbersome, difficult to manoeuvre and totally impractical being made of short-lasting materials! I also reckon you can only trick your brain for so long! Still, it is nice to know there is still a little brain power there!
There is a fortune to be made by any enterprising people who can design, manufacture and sell aids which make life more 'bearable'. That's not the right word but I can't think of another. What would you do to always be able to wear non 'nunty' clothes. 'NUNTY' is a Hull expression for shapeless, ill-fitting, old fashioned clothes
I’m not saying that I have ‘let myself go’ but putting pj’s on is getting earlier!
Any suggestions for places to look for stylish, easy to put on clobber would be gratefully accepted. Any help through the minefield of Tena lady, Always Discreet, etc. would be gladly received. Where can you get shoes which don’t fasten you to everything else with their Velcro fastenings? How do you put a bit of ‘slap’ on your face, without looking like Mr Pickles, the Clown? How do you put on nail varnish when you know you’ll freeze at every doorway at the manicurist’s and be suffering ‘off’ time all the way through your appointment.
Just think, these are minor, inconsequential problems! It hardly bears thinking of the really big ones.
Oh dear! I seem to have ‘gone off on one’! But it is only people like my fellow sufferers, who know what I am talking about!
Thanks for listening/reading.
Hi Fab girlies,
I have a tremor that increases with movement, make up application is difficult. I use chubby sticks from Clinique, they are easy to hold and there is a wide range of products available. Might be worth a try, I think its worth looking for mobile hairdressers ,etc so you can relax in your own home. x
I recently had a wobble in Hotters shoe store, surrounded by velcro straps and heavy ugly shoes I could feel the tears run down my cheeks. Dystonia cramped feet twisting and turning, one minute the shoe fits next it does not, if I was Cinderella what do I tell Prince Charming? they do fit but the glass in the slippers retain the heat and my feet swell up? They fit when I am not having a dystonia attack....as the prince who knows nothing about PD shakes his head and walks away.
Well these shoes the long trousers hide them but not good for dresses or skirts. But the hilarious part is when your feet cramp ,swell up and you pull off the velcro straps to re adjust in a quiet corner, HAVE YOU HEARD THE NOISE velcro makes when pulled apart! discreet not a chance, the whole room appears to be staring at me, its time for action.
Bottles of wine and a few slightly insane friends for an evening of" PIMP UP MY SHOES" , you can buy spray glitter, need glue to stick sparkly things on. Its a real fun "pick me up evening" of course in the morning they go into the Help the Aged charity bag.
There are deeper toe shoes, extra width fitting not so ugly shoes online have a browse, some have catalogues to post out. So I am going to send away for a few pairs to try, some of the huge shoes are VAT free so a bargain. www.widerfitshoes.co.uk is one of many JD Williams etc
I can manage zips as use one of those gadgets, buttons not so good so replace them with a huge hook and eye. The reason why I cannot do up my trousers is coconut oil, eating too much got carried away oily fish etc and now looking like a bloated mackerel !
Clothes are a problem no real answer and whilst a kaftan would be easy to wear not terribly trendy. Stick to pull over the head tops, lots of those about. Book a personal shopper and set them a challenge. Being a woman with PD is difficult. waffle, waffle ramble and more ramble. x