Can anyone offer any advice about living aids for someone with Parkinson's?

[Fakebook]

My dad divides his time living with my sister and me and he has Parkinson's. In the last year or so his mobility has taken a turn for the worse, but he has some good days and some bad days. The GP won't refer him to an occupational therapist because she thinks he is still quite able to do things easily, albeit slower. This is something we need to discuss with the GP when he gets back next month.

I want to buy some living aids that will make life easier for him.

One is a walking frame that will help him get up easily and get out of the car easily.
The other thing (and would like advice about) is this. It's a rope ladder hoist that he can pull himself up with in bed. His upper body strength is not that good, but when he gains momentum he can carry out any task easily. Would this rope ladder be ok for him to use? Or do you think it would be a hassle?

If anyone has any other props that he could use to get up and out of bed easily, could you please share?

TIA.

My Dad has this handle to help him get out of bed. He has just one handle but if your Dad is sleeping in a single bed, they do one with a handle both sides.

My Dad's was provided and fitted by the local Health Authority but maybe if your Dad hasn't been refered to an occupational therapist, he wouldn't be eligible. If not it's probably worth speaking to your local mobility shop as you don't have to pay the VAT on items such as this.

Other than that my Dad just has a walking stick. He's doing ok to say that he's had Parkinsons for over 5 years and has had both knees replaced in that time. I can see his health & mobility is getting gradually worse and he's afraid that he'll lose his driving licience when it's due for renewal in 18 months time

How long has your Dad had Parkinsons? Do you and your sister get any help?

You really need to ask for a referral to OT or local community rehab team (which will include OT, district nurse, physio, possibly podiatry, and any needed psychological services). I'm disabled (I've got a neuro disability not a million miles away from Parkinson's) and I have handles, an extra stair rail, shower step, stool in the kitchen etc to make my life easier. It's not really up to the GP to decide, the hospital should refer for rehab.

Also, has your dad been helped to apply for DLA, a blue badge etc? These can make a huge difference - I get high rate DLA mobility, which makes work and a social life possible as I'm no longer allowed to drive.

Hi Fake

I'm an OT You don't need the GP to refer to an OT you can request assessment from Social Services. Just make sure to emphasise difficulties during the request as its used as a screening tool.

I really wouldn't recommend the bed ladder, the handles as mentioned above are usually the best thing but there's quite a few on the market and the type of bed is quite important to making sure it's fitted safely. Obviously your Dads abilities will influence what is the best thing.

If you are planning to buy things anyway it may be worth getting an independent OT assessment? Many of us work in the statutory sector & privately and an equipment assessment wouldn't cost a fortune and could stop money being wasted on useless equipment! There is an online directory on the College of OT website.

My dad found that having his bed higher off the ground helpful.

Was on my phone earlier but here are some links that you may find useful;

Disability Living Foundation

Online mobility store with reasonable prices/delivery charges

Independent OT Directory

Info on accessing OT through NHS/Social Services

Thanks impatientone I can see stuff there that might help me!!

No problem, I will waive my fee for you weegie

we got the bed handle for my dad. The OT also sorted out getting sort of uplifts for the sofa so it sat much higher off the ground - far easier for him to get into and out of....we also shoved pillows under the sofa cushions - again to raise the level.

handrail up the stairs on both sides...

My dad liked gardening so got him a kneel stool with handles each side to help him get up off the ground - it could also be turned over into a stool.

Def get him an OT it was the only person who really was of any use to us!

and he'd listen to her.....

Thanks for the replies :)

Oldbeanbagz, my dad was diagnosed in 2005 but he had complained of stiff shoulders for 3 years before that. Thanks for the link to the handrail. Does your dad have problems moving his legs and turning over in bed too? I'd essentially like something he can turn over and out of bed with without using too much leg and upper body strength. I can see how an OT would help him now. My dad didnt renew his license last year because his reflexes are just too slow and it's dangerous now. It's sad seeing a man who used to drive us everywhere not being able to anymore. :(

Weegiemum, I've mentioned to my dad about getting a blue badge last time he was here back in November and he is now slowly coming around to the idea after initially being very against it. He's always been very independent and I think is very much in denial about needing help.

ImpatientOne, thanks for the links; they are very helpful. I'm on the phone right now so will look at the online shops a bit more closely on my laptop tonight. I was told by the GP that they'd have to organise an OT, but that's good I can do it myself. This is again something I'll have to discuss with him first and gently bring him around to the idea. Like I've said above, I think he'd be happy with anything that helps him turn over and get out of bed, in your experience is a handrail good for this?

Kingfisher, we've adapted a few things around the house too. We bought him a reclining chair that is made out of firm leather on which he uses cushions to make himself higher and he's quite comfortable sitting on that.

I think I might just buy him the walking frame to start with, as it also folds up so he can use it when getting out of the car too. A walking stick doesn't really work for him as he has a gait and ends up carrying it.

Yes bedaids (handle) can definitely help with turning in bed. Although little known about they are one of the most useful bits of kit we issue!

Friendly word of caution re raising furniture - usually better to raise from underneath rather than with extra cushions as that can negate benefit of armrests as a support when standing

Thanks ImpatientOne. I have ordered him a bed rail and will install it before he comes so he can't talk me out of buying it!

Good plan!

My mum had Parkinsons. See what you can get on loan from OT before buying loads of stuff which may/may not be suitable.

Useful things we had from the OT were: a powered in-bath chair which rose and sank,(it took some getting used to), a wheeled walking frame, a wheel chair, a commode

the Ot provided a trolley on wheels for carrying things as you walk - but she couldn't get on with it,

things I bought from an online disability store, which were useful - a sliding sheet for the bed so you can move them and help them get to the edge of the bed, bed legs (elephant feet)

also the OT suggested we put guidelines on the floor - duct tape on the carpet, paint outside, giving straight routes across a room, - this she found very helpful,
also you want to keep floor patterns to an unfussy minimum, plain surfaces help - there is lots on the web about it

and we replaced steps with ramps

things I bought which we didn't use: a lifting stirrup for the foot, a turntable for the car seat, a grabber

Thanks, onthelastleg, really helpful post. I didn't know about the floor pattern thing. That's really interesting and I will google it now.
Also the sliding sheet you talk about sounds like something we'd find really useful. On bad days I have to pull him up and out of bed.

I work as and OT assistant in the community and people self refer to our dept -dont need a gp refferal.

if you are raising a chair does it have castors on it? Elephant feet furniture raisers may help but the chair needs to be up against a wall in case of tipping. If you want a more permanent raise you could see if you have a local Age UK handy person scheme as they may be able to fix some wood underneath to make the raise more secure.
Asda sell mobility aids online as do Argos which may be cheaper.

Chocolatespiders, we have a reclining chair that tips forward at a press of a button, so aren't using things to raise furniture anymore. Thanks for the Argos suggestion. I hadn't ordered the walking frame, and I've found the exact same thing I wanted in Argos for 29.99. So I'm going to pick it up later. Didn't realise Argos have such a wide selection of mobility aids.

Argos have been great for us to suggest to people for the aids as local mobility shops local to us seem to be so over priced. If you have a Red cross near you they are a non profit making company and sell some bits. They also do reconditioned things like wheelchairs and they often have a medical loans attached to them where you could borrow equipment to try before you spend money out on it.

Boots also do very small items such as easi- reachers

There's some very useful advice on Parkinsons on a site called myageingparent.com

Thanks for that link royguts, I will look at it properly later when I'm on my laptop.

A word about wheelchairs.

If you are wheeling someone along at speed, do make sure they are strapped in with the safety belt. Otherwise, if the chair hits a bump in the pavement and jams, they will go sprawling and with no ability to throw arms out, it can get very nasty. I shudder to recall some of my trips with Mum along the riverwalk of the Seine, going at some speed...

Also, when getting out of cars and in a hurry, you have to make sure the feet are stuck in the footrests and the foot rests are slammed to. It's no use thinking, right, she's in a seat, let's move off and get the foot rests sorted on the pavement. Her feet will touch the ground, jam up the works and she'll go forward, maybe into the road.

Wheelchairs do need a bit of a cockpit drill or it's an accident waiting to happen.

I have bought a simple pedal exerciser of Amazon for £25, you sit in the chair and pedal, will see if that helps her. I used to walk her up the road with the wheeley Zimmer thing, I would pull and she would trot along. They didn't bother doing that at the care home so she lost the use of her legs.

Take a photo of this if you can manage it, you won't be accused charmingly by the hospital of fabricating tales of her disability when you say she's deterioated under their care.

Discourage use of slippers, they don't help with walking.

And make sure they're not on motilium, proscribed by our idiot doctor. It inhibits dopamine receptors, er, not great when Parkinson's does that all by itself. The doctor had her on it for... (brace yourselves) YEARS...