Adapting to life with Parkinson's


#1
The extent of your disability is related to how well adapted the environment is to your needs. This applies to everyone; for example, if your TV projected UV light it would be ill suited to the need we all have of seeing only in the visual part of the spectrum. Therefore, we all adapt our environment to our needs and buy TVs that generate visual light.

It is important to apply the way we adapt to everyday things to the challenges of Parkinson’s. I’ve made the following adaptations with the help of my Occupational Therapist:


Bathroom

I use an electric toothbrush.

I have a perching stool so I can sit and do my teeth.

I go to the barbers to have a shave.

I have a raised toilet seat to help me descend from my throne.

I use moist toilet paper to speed up wiping.

I have a bath chair so I can take rests when showering.

I use anti-dandruff shampoo to fight my dry skin.

Holding a sponge is challenging so I use a bath mitt.


Kitchen

I have a perching stool so I can sit and prepare meals.

I use a chopping board with a clamp to help me open bottles and jars.

When I can I buy ready-prepared and chopped vegetables and meat.

I use one-handed scissors.

I use light weight cutlery with big handles.

I wash up using rubber gloves with attached scrubbing pads.


Living room

I have my laptop on an adjustable table.

I find holding a book challenging so I use an eBook.


Maybe a fuller list could form part of the Parkinson's UK literature???

dr jonny

#2
Blimey, that is a lot of adaptations for someone who hasn't been diagnosed very long.
I have a few adaptations at work but none yet at home (oh yes, a chopping machine for chopping hard vegetables.)

At work I have

Dragon software
A roller - ball mouse I use in my left hand (I am right handed)
A dictaphone.
Also I am getting an I-pad with a portable printer that talk to each other via blue tooth (very excited about that one)

Do you have adaptations to your car?

Caroline.

#3
Hi Caroline

I gave up driving a month after my diagnosis - it simply wasn't safe for me to drive anymore. Nice adaptations at work! O, I forgot I'm moving to a bungalow in a few weeks.

My aim is to save as much energy as possible so I can do what I want to do alongside my Parkinson's

dr jonny

#4
So far I have not really needed to make any big adjustments.
The only thing I struggle with is when dining out, sometimes find it difficult to cut food, but on the suggestion of the OT I know ask for a steak knife, sometimes get funny looks but have never needed to explain.
I still work full time and as yet no adjustments.
Although I still drive, but would happily let husband do all the driving.

#5
Must admit I have been thinking along the Bungalow lines, unfortunately my husband thinks otherwise.
He says we can get one of those ugly stair lifts (over my dead body)

I am dreading the day I have to give up driving, the loss of independence would be overwhelming for me.

Caroline
x

#6
while agreeing generally with the principle of overcoming obstacles by adapting, its also too easy to avoid activity and reduce the exercise and movement involved in daily life. to go to the extreme, sitting in a comfy chair all day with a robot to do everything for us would be bad for our health. I am not suggesting Dr J is saying this, just pointing out the need to keep trying to do some things that are difficult.

#7
I agree turnip.

Just today we had the second visit from the speech therapist.

My OH can drink from a glass or mug but sometimes their posture is less than helpful to the process, stooped and head forward.Hence they tend to suck the liquid rather than drink it normally.

Her solution.................an adapted cup!!

That will do nothing to maintain or try to assume the correct posture or make as much use as possible of a stiff and inflexible arm but, rather pander to it, IMO.

If my OH CAN do something, even if it takes longer, and it always does, then they will continue to do it without aids or my assistance. They are well aware of my tough stance on this and know the reason why.

Therefore, after 15 years they are still relatively independent. Yes, symptoms are worse all round but if they had been mollycoddled, at every little hurdle, I dread to think where we would be now.

Cruel to be kind in the long run.

#8
So far I have bought an Electric Bed, which was the best thing i have bought in years.and I have some small sharp knives for the kitchen. I have found the bath lift any good for me. and I use a Sholley trolley when I go out rather than a walker.

At work my high inspection bench and chair have gone and a desk and chair have taken their place my machine has been adapted to turn out into a tub on the desk, and I get lots of help from my co workers. But I am strugling at the moment so will probably need to re asses in the next couple of weeks

#9
Good point turnip.

I guess its a delicate balance between challenging yourself and doing things with a little help. Adaptation isn't about doing nothing; its about enabling you to do something you otherwise wouldn't do or making that something easier. For example, every time I leave my flat I could spend 10 minutes tying my shoe laces or use slip on shoes and put the time and energy saved to a better purpose. The adaptation of using slip on shoes doesn't cause me to stay in my flat, it makes it easier to go out.

dr jonny

#10
Hi Benji,

Parkinsons is so varied that none of us know for sure where we might or might not have been with or without any particular approach to the disease. I don't disagree in any way with your basic principle but I find the words "pander to" and "mollycoddled" a bit harsh from someone who has not actually got PD. There's surely a happy medium between not leaping in everytime someone falters and flatly refusing help. Having said that I must admit to telling my poor old mum that I couldn't get the car up her short drive in order to get her to walk a bit

I write as someone who finds quite mystifying the lack of effort there seems to be upon dx to restore people (unless they are "younger" whatever that means in PD terms) to the level of function they might have had before dx by systemative physio intervention so they have a sporting chance at that point snd thereafter in resisting the insidious effects of PD. The NICE guidelines say PWP's should have access to physiotherapy - might not this be tried? I know things differ wherever you are. My service seemed puzzled as to why I had asked to see them on dx - prevention (or rather resistance) doesn't seem to loom large -so I got on with it myself.

Another thought, it is very easy for everything to be put down to PD. You don't mentions your wife's age but might not the posture be due to something else, say, osteoporosis - one in three women have this eventually.

I don't mean to seem judgemental as I do not know your circumstances. Perhaps you feel you are up against it having dealt with this disease for fifteen years as it is only now they are even accepting that exercise helps. I felt quite isolated when I was looking after my mum who lived ten years to the ripe old age of 99 after I was told she probably had only a few months to live. I was also subject to disapproval, threatened interference from social services when, as she wanted, I started to look into her living back at home with 24 h care after six months nursing home stay - interference but no help to speak of and downright misinformation. I was even accused of not wanting her to have the rehab. which I myself had requested through the GP, and which she had been assessed in hosptal as unsuitable for prior to discharge from hospital. Oh dear I seem to be wandering off the point somewhat.

As others have said there's no intrinsic value in struggling to do something
like doing up laces - we weren't born with shoes on - when you could be better off doing something else. I have gone in for toggles on my walking shoe and boot laces - the sort sports shoes have - as there's no point fighting the tremor excarcerbated by the cold when a quick pull and sqeeze of the toggle will do the trick. On the other hand, I have often been told that going up and downstairs is good exercise. If a stick will help you walk further and get more exercise then use a stick or two if necessary.

Best wishes to all

#11
the example i had in mind is my pick-up stick (a bit like park-keepers have) - it helps pick thing up, as you would expect, but if i used it all the time i would ens up not being able to pick things up without it. So i dont use it until i have to. No-one is going to gain anything by struggling with shoe-laces. Dr J's list is very interesting and in particular the kitchen stool is something i could do with.
in general i don't think fine-motor skills can be helped with practice but strength, stamina and especially suppleness can.

#12
Eileenpatricia,

When my husband asks me to get him, e.g. a glass of water, when he is perfectly able to do so himself, then NO, I do not fetch one. He may take a few minutes to unfreeze, a little longer to stop shaking but eventually he will get out of the chair, shuffle to the sink and do it himself. On a bad day this is the only excercise that he will get, pottering to and fro around the house.

Some days it takes him an hour to get dressed. If we are not going out then I leave him to it because he can do it, it just takes longer.If I start helping with dressing every day then that is how it will continue, well before the need is totally there and that is exactly what we are trying to postpone for as long as possible.

If I am out of the house then he would have to do it himself. What should I do? Stay in the house the whole time incase he needs something?? When I am out, he has his mobile and so do I and I am only ever out locally doing shopping, never many miles away, so I can get home quickly.

18 months ago he was in hospiatl for 3 weeks, quite a distance away from home, and underwent a very serious operation. I spent all day every day, and would have spent the nghts too if allowed, with him. He could do nothing for himself and I mean nothing, even the most basic things and yes, it was very like some of the situations I have read about recently in the press; lack of dignity and care, as well as messing up his medication....nightmare scenario which was taken further.

He was discharged and initially I still had to care for him totally. Gradually he began to, as he gained strength, start doing little things and making some progress towards the person he was before his hospital stay.He is not back to anything lke 100% of that, even on a good day, though there are many more bad days now.

So, if I had continued to care for him during the past 18 months as I did at that time, I doubt if he would be doing very much at all right now.

One of our daughters is a social worker, working with the elderly, and sometimes even she tells me that I do too much for him.

So, in order for him to retain his dignity & relative independence for as long as possible, that it our strategy. He certainly does not wish to be in the situation that he was in for 3 months, with me having to attend to his every need. When/if, that times comes then of course I won't let him sit there unfed, without water or undressed, but until then I won't pander or mollycoddle him, he knows that and knows the reason why and is quite happy that I am doing what is necessary for his benefit and mine. We caa stil have some quality of life togetheras a couple and not as carer and cared for.

Right now the sun is shiing, it's not as cold as it has been for the last few days and I have helped him to do up his coat, made sure he is wearing, hat, scarf and gloves and has his phone and he has gone for a very short shuffle up the road. My heart is in my mouth until he returns but I am not going with him when his medication is working for a short time.At least today he has been able to do this, it's the first time this week so, for that, I am grateful.

#13
Hi

I think this is a very individual thing. If you love someone, then you know them inside out and back to front, therefore will know how they will need to be supported

We are all different and will approach our disability in a way which suits us and our circumstances.

I don't think there is a right or wrong answer to this.

If my husband sees me struggling, he gives me a bit longer to achieve the task myself then offers to help. He never just takes over. But I have always been fiercely independent, someone else may need an entirely different approach.