This booklet is a collection of tips and hints that can make everyday life easier for people with Parkinson’s. They have been suggested by people with the condition, their carers, Parkinson’s UK staff and health and social care professionals.

While the majority deal with daily tasks, such as dressing or eating, there are also tips on travelling abroad, staying active and keeping a positive frame of mind.

 

Please note that all tips have been checked by an occupational therapist before publication. All views remain those of the contributors and any recommendations given are not a substitute for advice from your healthcare team.

Contents

Around the home

Getting dressed
In the bathroom
Eating and drinking
Home safety

Bedtime and sleep

 

Communication

 

Out and about

Keeping mobile
Shopping
Transport
Holidays

Good gadgets

 

Staying positive

 

Taking medication

 

Where to find more hints and tips

 

More information and support

Useful contacts

Around the home

Getting dressed

 

Talcum powder helps socks, vests and pants to glide on – it smells nice too!
Sheila, diagnosed in 2006

Bras are a particularly difficult item to put on. But there are some models available that have no fastenings and that are elastic enough for the wearer to step into and pull up into place.
Barbara, diagnosed in 2009

I used to have problems with socks – so much so that I’ve often gone without them, which causes an unpleasant rubbing when I wear shoes. But then I got some good socks made from bamboo fibre. They are very silky, so they slip on easily. I've been told they're widely available in the UK and don't cost too much.
Turnip, from our online forum

I’ve found that an easy way to put on my socks is to simply cut a 'V' in the top. This allows me to grip and pull them on.
Paul, diagnosed in 2001

In winter I struggle with putting on tights, but I’ve found that woollen leggings are a lot easier to put on, then I add a pair of socks. When wearing boots I can’t tell the difference.
Angel4u, from our online forum

You can avoid falls by always putting on your trousers starting from a sitting position, not from standing up.
Diana, diagnosed in 2004

I have difficulty putting on my trousers, especially trying to pull them up, fasten any buttons or pulling a zip. Now all I have to do is use braces. This helps me lift up the trousers very well.
Michael, diagnosed in 2007

I am a carer for my wife Fran and usually have to help her get dressed in the morning. But if she has a soak in a warm bath after a cup of tea and biscuit in bed in the morning, she can dress herself. We also found when we went on holiday and enjoyed a really warm climate, she got the same benefits.
Geoff, whose wife has Parkinson’s

Try skirts or trousers with an elasticated waist. They may not be as fashionable as the ones I used to wear, but they're easy to use and my independence comes first. Full skirts are a nuisance if you're getting in and out of a car or if you use a wheelchair. Shorter coats and trousers can be easier for wheelchair users.
Sally, diagnosed in 1990

I became a bit clumsy when doing up my shirt buttons, and I had to rely on someone to help me. So I didn't wear shirts for a long time. But then I bought a button hook. Now I wear a shirt on most days.
Terry, diagnosed in 2000

Recently I've started to buy blouses in a size or two bigger. I can slip them off without undoing the buttons, and a size or two doesn't look too big, especially if I use a belt to nip in the blouse at the waist.
Emswife, from our online forum

Try removing buttons from shirts and sewing on Velcro as a replacement. Then the shirt can be easily done up, but it looks as though it's buttoned. All of my dad's shirts were like this and you would never have noticed.
Alyson, posted on the Parkinson’s UK Facebook page

Some people may find that press studs a good alternative to Velcro, because Velcro can come undone under strain. Buttons stitched on with elastic can also help to make a shirt or blouse slip on easily, without undoing the buttons.
Phillipa Greenslade, Occupational Therapist at the Independent Living Centre, Exeter

Stretchy tops and dresses with V-necks are much easier to put on and take off – without pulling off my glasses or ripping out my hearing aid!
Djemm, from our online forum

Buy natural fabrics. Parkinson’s can make you sweat and cotton will absorb this.
Sheila, diagnosed in 2006

I've experienced some difficulty with ties, but on formal occasions I have been reluctant to go 'open necked'. So now I wear roll-necked tops. They're not quite as formal as a neck-tie, but they’re quite acceptable in non-casual environments, such as an office or a conference.
David, diagnosed in 2000

My husband had problems with ties and we solved it by buying clip-on ties (not bow ties). They are so easy to use, they just attach near the top button on the shirt and are as smart and fashionable as ordinary ties.
Doreen, whose husband has Parkinson’s

Large, easily grasped zipper-pulls make opening and closing trouser flies, jackets and coats less difficult.
Raydar47, from our online forum

If you have trouble getting hold of the little tab on a zipper, thread a piece of string through the hole in the tab to form a loop. Tie the ends together to form a loop and trim the ends to a discrete length. Now you have something to pull on.
From a Parkinson’s UK volunteer in south-west England

Before I was diagnosed with Parkinson's, my husband would claim I'd need an hour to get ready to go out for dinner or for a special occasion. Now I take two! Stress or pressure can make my tremor much worse, so I allow myself a little extra time. I can still use eyeliner, too, if I buy a wider, chunkier applicator with a felt tip. So ladies, take your time and be fabulous!
Cynthia, diagnosed in 2008

I wear a sturdy (but not too tight) rubber band around my right wrist, which I use to hold my folding walking stick in the folded position. This is now part of my daily dressing routine, so it’s always there when I need it.
Carole, diagnosed in 2008

I was having problems fastening my necklaces, so my solution was to look in charity shops for longer necklaces that I could pull over my head. For a few pounds, sometimes even less, I have found some really nice jewellery. This benefits both me and the charity shop I choose to visit, especially if something else in the shop catches my eye! Let's face it, we all like a bargain!
Jean, diagnosed in 2003

Having spent hours trying to fasten a necklace, I finally bought a pack of eight magnetic jewellery clasps (four 'silver' and four 'gold'). If I fix the magnets to each end of my necklaces, it’s so much easier to put them on. The magnets are quite powerful but can't cope with anything too heavy – so the crown jewels are out!
Jill, diagnosed in 2009

In the bathroom

 

I take the advice of occupational therapists, who recommend equipment and gadgets for use around the home. For example, a shower stool can make showering so much easier and safer. A perch stool is also useful for sitting at the bathroom sink.
Teresa, diagnosed in 2009

I decant shampoo, shower gel and other liquids into pump-action dispensers. When in the shower, I can then dispense the appropriate liquid using one hand only. This means my other hand is free to hold firmly on to my grab handle.
Person with Parkinson’s

This top tip is from a lady with Parkinson’s who found it difficult to hold up her skirt when using the loo. Her solution was to use two clothes pegs. She always carries them in her handbag and simply pegs her skirt up onto her top, out of the way.
Julie Ball, Parkinson’s UK Information and Support Worker

Early in the morning I usually need to urinate, but before taking my medication I am likely to freeze on the way to the toilet. This makes me anxious about staying away from home. The answer I've found is the 'Shewee', a funnel that allows a woman to urinate into a bottle while standing or sitting, so I can 'go' anywhere. This avoids the indignity of a commode or chamber pot, which are especially embarrassing if I’m visiting others. It takes a little practice, but I am delighted with the freedom from worry.
Jane, diagnosed in 2000

Being able to get to a lavatory on a drive out can be a problem. I came up with a solution for my husband by cutting off the top slightly of a one-litre plastic milk container. It has a handle on it already and is the shape of a urinal bottle, but a lot cheaper. After use, I cover it with a plastic bag and rubber band round the neck, and once home I empty and dispose of it. 
Beverly, whose husband has Parkinson’s

Eating and drinking

When dining either at home or out, always use or ask for a steak knife. It's much easier to cut food with one, whatever you're eating.
Teresa, diagnosed in 2009

A piece of plastic food-wrap over the top of a mug of liquid helps to stop it slopping while you're carrying it.
Mandy, diagnosed in 1996

We have a height-adjustable table on wheels that my dad uses for his meals. That way, if he’s frozen, he doesn't have to worry about getting to the dining table.
Jenny, whose dad has Parkinson's

My wife Rita had Parkinson's for about 13 years. For some while she had had great difficulty in passing food from her plate to her mouth. Having got the food on her fork or spoon she found it hard to get it to her mouth as she was unable to control her movements. The occupational therapist suggested we use a free-standing mirror. We put this on the table in front of Rita who adjusted it so that she could focus on her plate and mouth. She then was able to move food confidently up to her mouth.
Alan, whose wife had Parkinson’s

If, like me, you lose some of your breakfast cereal milk down your front, switch from a dessert spoon to a soup spoon. The spoon is rounded and deeper – no more spilt milk.
From a Parkinson’s UK volunteer in south-west England
If you sometimes have difficulty swallowing, a sip of iced water can encourage the swallowing reflex. On short visits away from home or in restaurants, you may feel more comfortable with asking for smaller portions rather than staying at the table long after everyone else has finished.
Diana, diagnosed in 2004

If tremor makes eating difficult, try swapping hands every couple of mouthfuls. My other tips are to use a plate with a rim around it, as children have, and take anything soup-like in a half-filled mug. The only 'special cutlery' I bought proved to be too heavy, so the lighter the better, especially if they have cushioned rounded handles.
MaryLlainwen, from our online forum

Small, calorific meals are better than large meals. Little and often is better because most people with Parkinson’s find eating tiring. It may also help to sit in a chair with arms to aid support and additional cushions may be required to make the person comfortable. Encourage the person to sit more straight, which helps both tremor and swallowing.
Cutiepie, from our online forum

We are all supposed to drink a lot of water and it’s easy not to bother because of the risks of knocking over a glass or sloshing it down your front when an involuntary movement takes over.

I keep a small bottle topped up with water and take it with me to whichever room I’m in. Keeping the lid on limits the damage if I knock it over and I can roughly measure how much water I drink in a day (which keeps the dreaded constipation at bay!).
ChrissieW, from our online forum

I find my electric can opener and wall-mounted jar and bottle opener invaluable. But my most useful item is a really good pair of scissors, which I use for opening blister packs of tablets or for trimming meat and bones from fish. They are much more manageable than using a knife.
Josie, diagnosed in 2007

We've found using a kettle with a swivel base, and separate oven gloves (with fingers) not mitts, extremely useful.
A carer, whose husband has Parkinson's

Home safety

Keep floors clear - no rugs or ornaments - especially where you use a battery wheelchair, as the wheels and balances tend to jut out and become tangled.
Judy, diagnosed in 1991 

My husband John has Parkinson's, but when he feels able he’s still very innovative with his DIY. He has problems with balance and was becoming nervous of passing the gap at the top of the stairs, especially to go to the bathroom at night. So he created a sturdy oak bar that runs across the gap. It can be removed when we want to go down the stairs. A large peg inserts into the end of the handrail to keep it in place.
It’s very well made, in the same finish as the banisters and hangs down out of the way when it’s not in use, so you can hardly see it! It is a wonderful help to him. John's occupational therapist was not aware of anything else that exists to 'fill the gap'!
Margaret, whose husband has Parkinson's

Bedtime and sleep

Almost from the start, I found that by far the most difficult Parkinson's thing I had to do was get into or out of bed – it’s difficult and exhausting. Then an occupational therapist gave me some bottom sheets with a central panel of stout satin, plus silky pyjamas. I now twirl like a top, from the getting-in side of the bed to the other.
Virginia, diagnosed in 2006

I kept falling out of bed, so my Parkinson’s nurse advised me to lie near the middle of the mattress and put something between me and the edge of the bed. She also told me to put something soft, such as a pillow, on the floor – a much softer landing than the CD player that I landed on before.
Barbara, diagnosed in 2009

A gentleman I know uses a head torch when he needs to get up at night, so that his hands are free to help him with balance.
Tracey Tucker, Parkinson’s UK Information and Support Worker

I have a traditional-style headboard with rails and large wooden knobs at each corner. My husband has screwed this firmly to the wall at the head of the bed. I find it a great support to turn myself over and to pull myself up. I also use it to help me get in and out of bed.
Josie, diagnosed in 2007

We recently bought a pair of 'touch' lamps to put on our bedside cabinets. They only need the lightest touch to create a gentle glow, a second touch gives a brighter light, and at a third touch there is enough light to read by. No more feeling for a switch in the dark, before being half-blinded by the bright light! I would recommend them to anyone. Ours were only around £15 for the pair from a high-street shop.
Marion, diagnosed in 1987

What about a cup of tea in bed before getting up for breakfast? Fortunately, I can still climb the stairs with the aid of the bannister. But having made the tea for my wife and myself, I can't safely carry two mugs in my left hand as I climb. You can buy a mug carrier from mobility shops, but I designed and made one for myself. It has a base, four sides and a carry handle in the middle. This has been a boon, as it is useful for carrying two mugs (or cups) in or around the house with no spills!
John, diagnosed in 2006

My husband had trouble with dribbling, which made the pillows uncomfortable as he slept. I made pillowcases for him with one side of towelling, and this solved the problem.
Brenda, whose husband had Parkinson’s


My tips on getting a good night’s sleep are:

• Get into a ‘winding down’ routine – for instance, switch off the TV or computer and read a book.
• If you feel a bit ‘prickly’, in your legs or sometimes all over, a glass of tonic water before bed can be helpful, as can a warm bath or shower.
• Make sure your bed is comfortable. I have a board under my half of the double bed, which gives it a bit more support. If your bed is too hard, put a spare duvet under the bedclothes to give more padding.
• A latex pillow might be more supportive than a feather one.
• Practise relaxation techniques using breathing, muscle tightening (for 10 seconds), then letting go, completely... so much so that you fall asleep.

Cecily, from our online forum

10 tips for getting out of bed, by Sheila, diagnosed in 2006

• Wake up slowly. Don’t try to move until you’re fully awake.
• Take your medication (prepare it the night before and leave it next to the bed, along with a glass of water). Allow it to work before you move.
• Loosen the bedclothes. It’s easier to move if you’re not fighting the duvet.
• Stretch all your limbs one by one. Don’t overstretch, take it slowly.
• Roll on to your side before you sit up, then swing your legs over the side of the bed and push yourself up into sitting.
• Allow your blood pressure to adjust. You may feel light-headed when you first sit up.
• Feel the floor. Make sure you are standing evenly on both feet before you lean forward to stand up.
• Stand up straight and tall, no slouching.
• Take a deep breath and adjust your posture.
• Walk steadily, avoiding trip hazards such as slippers and bedclothes.

 

 

Communication

Parkinson’s Alert card
One way to let people know you have Parkinson’s is by carrying one of our Parkinson’s alert cards. These free cards are small enough to slip into a wallet or purse, and can be used in case of emergencies or when having difficulties with movement or communication. There is one for people who are hard of hearing, too. See page 30 for details of how to order.

I met a gentleman in a clinic who lives in a care home. One of the workers had written in a report that they thought he was drunk - not knowing he had Parkinson's. With the assistance of his daughter he had a fleece made that is embroidered discreetly, on the front and the back, with the words 'I'm not drunk, I have Parkinson's'. Now he never needs to explain his condition.
Jenny, diagnosed in 2006

A member of our Parkinson's support group advised me to get a wireless doorbell unit for my mum. I gave her the unit and I could take the sound device around the house as I cooked and cleaned. Before, I was constantly running in and out or straining to hear the little brass bell that had got too heavy for her to lift. But with the doorbell unit I knew I could easily hear her if she needed me. It made caring a lot easier.
Marguarita, whose mum had Parkinson's

If you are going into hospital, respite care or on holiday, and can't communicate very well, have someone write down a list or keep a small book of how you like things done and in what order. This way your temporary carer will know your exact routine. Things such as where you want talc applying, cream for your heels but maybe not your whole feet, make-up, hairstyle, which skirt with which top and shoes. All these things will help keep frustration and stress to a minimum for all.
Julie, posted on the Parkinson’s UK Facebook page

If tremor causes a problem with writing, a weighted armband from a sports shop (really meant for training purposes) can help steady your hand. Just watch out for the side-effect of bigger muscles!
Diana, diagnosed in 2004

I use lined paper underneath plain writing paper, similar to that which children use in schools to keep their handwriting straight. I find it helps me with my writing, which often becomes smaller as I write across the page.
Sally, diagnosed in 1998

My wife has poor memory and had forgotten how to sign her name. Strategies such as dictating each letter had failed. Then a nurse suggested showing her an example of her signature, which we found on her NHS donor card. Within seconds, she had remembered how to do it!
Geoff, whose wife has Parkinson’s

When I’m ‘off’ I lose my voice or it’s reduced to a whisper. This makes communication difficult, excludes me from normal conversation and makes it hard to convey my feelings or needs to my carers. I try to do my breathing exercises, where I count in as I breathe in and out. It helps to get air through my larynx and enables some semblance of speech.
Judy, diagnosed in 1991

Playing dad’s favourite music encourages an impromptu sing-along (probably not great for the neighbours but fun for us!) to exercise his vocal chords. I also think his attendance at a day centre twice a week is invaluable in maintaining and enhancing his communication skills. He has to make that extra effort to make himself heard and understood with people who don’t know him as well as we do!
Liz, whose father has Parkinson’s

Slow down when speaking. Nobody will criticise you for speaking slowly and clearly. They will if you try to speak too quickly and garble your words.
Jim, whose wife has Parkinson’s

If offered speech therapy, take it up. I did Lee Silverman Voice Treatment [a programme designed for people with Parkinson’s] which is intensive and requires daily practice, but it does help a lot to preserve your ability to speak clearly.
Diana, diagnosed in 2004

I have basic requests or comments written in large print on pieces of paper. For example, ‘I would like a drink’, ‘I need the toilet’, ‘Can you help me with…?’ ‘I am not stupid or deaf when I lose my voice - please be patient’. Remember to keep the pieces of paper near your favourite chair or wherever you stay until you are mobile again.
Judy, diagnosed in 1991

I find that using the telephone with a tremor is often a problem, as I keep bashing my head with the handset! My solution is to get a hands-free speakerphone – look out for a good, business-quality item. You'll wonder how you managed without it.
David, diagnosed in 2000

If you've got a smart phone, there are some very good applications (apps) that transcribe your spoken word into text. You can use the text in an email, SMS, Facebook or Twitter.
D1v1d, from our online forum

BT has a free directory enquiries service for people who can't read or hold a phone book due to a medical condition or disability. You need to register, but after that it is free to call, and you won't be charged extra to be connected to a number.

To register, call 0800 587 0195 for an application form or go to www.bt.com/includingyou/includingyou. The form will need to be signed by a healthcare professional who knows you, such as your GP or nurse. You'll then receive a plastic card with a PIN number on it. Whenever you need a phone number, dial 195, give your PIN number and your enquiry will be answered.
Suzanne, diagnosed in 1999

Parkinson's phones and apps
EasyCall is a free mobile phone app (application) designed to make using a phone keypad on a smartphone a lot easier. Basically, it enables you to call a phone number using just one touch.
EasyCall can be downloaded for free onto any smartphone, through iTunes or Google Play. To find out how to do this, and to read more about how it works, go to www.parkinsons.org.uk/easycall
You can also get a smartphone that raises money for Parkinson's UK. To find out more visit www.parkinsons.org.uk/phonesforparkinsons
Rachel Backshall, Head of Business Development at Parkinson’s UK

If you don’t use a computer, then learn - there are usually free classes for beginners in most areas. This will enable you to enjoy activities you may no longer be mobile enough to travel to. For instance, I now rent DVDs from an internet club rather than go to the cinema, and play Scrabble on a computer rather than going to a club.
Linda, diagnosed in 2002

I use a voice system for my computer. It can be a little dumb in its responses sometimes, but once you get it trained, it’s very useful. I published a book using it.
David, diagnosed in 2000

If you use Windows 7 on your computer, it has a built-in speech recognition application. This allows you to dictate a long passage of text into your word processor. Buy a cheap microphone from a pound shop and try it out. Go to the control panel and click on the speech recognition icon to set up and turn on the system. It takes a bit of getting used to but is worth the effort.
Jeremy, diagnosed in 2006

I suffered with quite a bad tremor and when typing on my computer keyboard I would look at the screen and find multiple repeated letters. Built into Microsoft is a feature called ‘Filter Keys’, which does not allow multiple key presses within a changeable time interval (between 0.5 and 2 seconds) and overcomes this problem. I have my gap set to 0.5 seconds, so if I want to type a double letter, I need to leave that time gap between key presses. I can type normally if it is different letters. One slight drawback is that it operates on other keys, such as arrows or backspace, but I soon got used to it and find it of benefit to me. It can be turned on and off anyway if necessary.
Paul, diagnosed 2005

Write and read aloud every day, even if you have great difficulty with it. Keep a book or a diary to give incentive and keep a record of your progress, Buy a dictaphone, a poetry book or learn the words to a new song and sing it out loud. Use it or lose it.
Julie, posted on the Parkinson’s UK Facebook page

If you have difficulty holding a book or turning the pages, consider getting an e-book reader, such as the Amazon Kindle or the Sony Reader. They're also lighter to travel with, as they store a number of different books. Before committing yourself, try out a few different models to see which one is best for how well you can use your hands. Also, check that you can buy titles by your favourite authors, as not all books are available in a digital format.
David, diagnosed in 2007

I can't hold library books because of my tremor. My daughter searched the internet and came across a charity, Calibre (www.calibre.org.uk), which offers a free audio book library service for disabled people who are unable to read print or use printed books. The books come on CD and postage is free to receive and return disks. I play them on a portable CD player, so I can relax and listen to them in bed. There is no need for a book rest, which could shake or move with my body, and I can even relax and listen to them with the light off. There is plenty of choice and I love what I've received so far.
Enid, diagnosed in 2009

 

Out and about

Keeping mobile

I walk two miles each morning and, while walking, I toss a small stress-release ball from hand to hand, which completely removes any tremor in my hand. By doing part of my walk on gravel, I make sure that I’m not shuffling but lifting my feet and striking the ground heel first. If I fail to do this I can hear the gravelly sound that a shuffling foot would make on the gravel.
Kris, diagnosed in 2004

One of my symptoms is lack of balance, which affects my standing, moving and walking. I have recently found that a change of footwear has helped significantly to give improved gait and steadiness. I’ve changed from a standard shaped shoe with a heel and curved edges between the sole and upper, to flat 'skateboarder' type trainers. The 90-degree angle between the sole and sides gives firmer support.

This has given me much firmer footing and I now feel steadier and more confident both standing and moving. My balance is better and I am also a bit more trendy!
Ian, diagnosed in 2010

I'd like to share a good thing we've found for my husband, who often falls. We've tried lots of different walking aids, but as we live in the countryside and have no pavements around our home, we've always found the wheels to be too small.

Looking through a catalogue one day, I saw a walker with four large wheels, two at the back and two side-by-side at the front. It has a tubular steel body and is very stable. We've tested it on very uneven ground and it is lovely. I'd advise others to look for something similar. We now say: 'Have wheels, will travel!' It has turned our lives around, because my husband now gets more exercise.
Joan, whose husband has Parkinson's

 

Walking on slippery surfaces can be stressful and potentially dangerous. But last year my wonderfully resourceful husband Phil presented me with a plastic bag containing the remedy – pavement ice-spikes. Various manufacturers have produced a version of them. They’re relatively cheap, simple to put on over your shoes, and they work. I don't slip any more. I attach them to my shoes and when I come to an area where the snow is no longer a problem I stop and take them off. I'm not afraid of snow and ice now.
Beryl, diagnosed in 2005

The best £10 I have spent recently is on a pair of walking poles. I seem to be able to get into a rhythm more easily by concentrating on the left-right, left-right, of the poles, and trusting my legs to follow of their own accord. When I’m out walking with my friends I can keep up much better. And the poles are also good for slopes too as you can lengthen them to go downhill and shorten them to go uphill. I felt a bit of a prune using them to start with, but they are such a real help that I quickly forgot to feel silly!
Maureen, diagnosed in 2006

A tennis ball rolled under your foot back and forth can give great relief from pain in some instances and is a useful tool to carry around. You can use it to practise your dribbling skills, which helps balance, and you can gently kick the ball to get out of a freeze.
Purpleslipper, from our online forum

I sometimes have cramp problems in the early morning, when my medication level is low. I find that doing the stretch exercises that athletes do, earlier in the day, and especially when my medication is 'on', is very helpful.
Longtimer, from our online forum

A tip I find useful when my legs freeze, is to drop an item at my feet (such as a rolled up sock, or a pebble if I’m outside). All I have to do is kick it, and I’m off. When I’m out I often have a couple of little balls of tissues taped up in my pocket, ready to throw down. It may work for you.
Ron, diagnosed in 1999

I wear an inner sole in my shoe, which is designed to stop the toes clawing – it has made a world of difference. My GP referred me to orthotics, who made the innersole for me. It did take some weeks but it was well worth the wait. I also find stretching exercises really do help and lengthen the muscles, which become shortened due to lack of full use caused by Parkinson's.
Cutiepie, from our online forum

I find regular exercise keeps me active. I do about 100 revs on my exercise bike each day and in the summer I go lawn green bowling several times a week. To keep my mind active I run the bridge section of a club and I do the crosswords in the paper every day. This also helps my memory training.
Kris, diagnosed in 2004

Shopping

Before going out, make sure your most important items are easily accessible. This makes you look and feel as if you’re in control. Getting flustered and rummaging in a bag does not. I always keep tickets in my left pocket and money, medicines and tissues in the same part of my bag.
Diana, diagnosed in 2004

Plan shopping trips and journeys around the 'best times' for the person who has Parkinson's, and schedule in plenty of breaks to prevent stiffness and discomfort.
Liz, whose father has Parkinson's

I find a rucksack-style bag much easier to use, as it leaves both hands free while I'm out in public.
Josie, diagnosed in 2007

If you're shopping in a busy town or city and you find carrying purchases difficult, it's worth asking in-store if you can leave items to collect later, or if they offer a delivery service to disabled customers. If they don't, then ask, why not?
Teresa, diagnosed in 2009

I've had Parkinson's for 10 years and I've learned not to put myself under stress by thinking about what I'm about to do and making preparation for it.

If I'm shopping I take the purse which has the widest opening and I carry my cards in a pouch - trying to squeeze fingers into a tight purse or slide cards from a holder would take too long, hold up the queue and therefore put me under stress.

If there's an item I just can't pick up I politely ask for assistance. After all there's no shame to our condition, we just have it and hopefully make the most of our lives with it.
Celia, diagnosed in 2003

I find it easier for myself and people I meet to tell them I have Parkinson’s; it seems openness dispels stares and embarrassment. I tackled a security guard in a large store who was following me on a ‘bad day’. It transpired he thought I was drunk, a lengthy explanation of the effects of Parkinson’s was met with interest and hopefully more understanding.
Josie, diagnosed in 2007

Transport

Take extra care and always use handrails when getting on or off public transport.
John, diagnosed in 2006

When standing in a queue for the bus I help control my posture by adopting the ‘third’ ballet position – which just means drawing one heel of my foot into the arch of the other. Ridiculous as it is, it makes me stand erect and I also feel more confident.
Celia, diagnosed in 2003

A sturdy carrier or freezer bag provides friction-free assistance for sliding in and out of a car. It’s better than buying an expensive car-seat turntable, and works well for my mum who has osteoarthritis too.
Julie Ball, Parkinson’s UK Information and Support Worker

I'm not a very smooth walker so the bike is the way to get around for me. It's a folding bike and I've got wheels attached to the back rack which, when the bike is folded, allow me to push the bike like a trolley in the shops. I've had no problems at all in chemists, supermarkets or newsagents. I think people see stiff walking and are a bit more accommodating. I ignore the security guards who say 'no bikes permitted' - if they challenge, I'll ask them if they permit prams with kids.
D1v1d, from our online forum

As my condition has gradually deteriorated, somehow I have adapted or managed to overcome most problems, even riding a bike for short distances. The biggest problem was getting on and off the bike due to stiffness and balance, but I purchased a folding bike that has a very low threshold or cross-bar, similar to a ladies’ bike but much lower. It also has small wheels that make it easy to fit into the boot of a car.
Anthony, diagnosed in 1998

I can truthfully say that when I'm on my bike I feel totally free and ‘normal’! I use it to get to work and for shopping. In fact, I can carry much heavier loads in the panniers and front basket than I do when I'm on foot.

I do choose the time of day when I cycle, and avoid mornings around school-run time, and also late afternoons when traffic is that much heavier.

I have to dismount carefully as I have overbalanced a couple of times, and found myself slipping to the ground! So, ‘gently does it’, is my motto.
Lorna, from our online forum

For those who are less co-ordinated there are lots of different bikes that can be easier to use. The back of a tandem is one and recumbent bikes are another. Trikes are not as easy as they sound, going around corners is difficult for me.
Mandybike, from our online forum

Holidays

Consider taking a card to carry in your wallet that says you have Parkinson’s and lists medication times and doses, plus gives the name and phone number of your doctor at home. My husband has a homemade one, but you could use Parkinson's UK's medication card – see page 30 for details of how to order.
MarieL, from our online forum

If you're flying, carry your medication in your hand luggage and always take extra in case of delays. Take your prescription with you and make sure that your travel insurance company is aware that you have Parkinson's. You may also want to take a letter from your Parkinson's nurse, GP or specialist, explaining why you’re carrying the medication.
A carer, whose husband has Parkinson's

Think about taking a Parkinson’s Passport with you when you’re travelling. This useful document gives details of all your medical treatment, plus lists emergency contacts. The form can be filled in on the European Parkinson’s Disease Association website (www.epda.eu.com) and translated into four languages: English, Greek, Slovene and Spanish.
Timothy Moore, Parkinson’s UK helpline manager

My nephew was getting married in Jamaica, and I was concerned about the timing of taking my medication. Neither my Parkinson’s nurse nor my consultant had dealt with this problem before. I decided the best way forward was to contact the medication manufacturers. I was advised that on the plane to Jamaica I continue on British time, taking the tablets at the usual times. On arriving at my destination I would go to bed in due course, and whatever time I awoke the following morning I should use that as my new benchmark for rest of my trip.

I can only say that it worked OK for me and I didn't have any problems. On returning home I went back to the usual timings with a slight adjustment for a couple of days.

I always carry my tablets in my hand luggage and I always take extra in case there’s a hold up on the return journey.
Jean, diagnosed in 2002

I can’t cope with queuing at airports, walking to the plane and using the steps to board, so I follow this procedure:

• When I’ve booked a holiday online or through a travel agent I contact the airline and tell them I’ll need special support. Usually they don’t ask for written medical evidence, although I carry a letter from my doctor. They seem prepared to accept my verbal description of my limitations and the reasons for them.
• I check-in online and print off boarding cards. I always try to reserve seats near the front, and I never travel alone.
• We take our bags to the luggage drop off, where there will be a wheelchair and personal assistant waiting for us. I’ll be wheeled through security, passport control and into the departure lounge.
• When the plane starts to board I’ll be taken to the mobile lift and wheeled to the far side of the plane. I board by the door opposite the main passenger door, and we can then take our seats.
• At our destination we usually have to wait until other passengers have got off. Then the procedure is carried out in reverse, and we are safely delivered to where we need to go next, for instance, the bus depot or taxi rank.

Carol, diagnosed in 2008

Good gadgets

Thank goodness for the humble hot-water bottle! My main symptoms are tremor and muscle spasms, the latter affecting mainly the muscles in my bottom and lower back, which can no longer keep my body erect when I stand or move slowly.

As a lifelong sports enthusiast, I learnt long ago that the moderate application of heat to the lower back gave effective relief to most problems in that area. Heat pads sold in most pharmacies are excellent but expensive and not reusable. A hot-water bottle with a thermal cover is equally effective and can be reused hundreds of times.
Brian, diagnosed in 2009

Wear disposable gloves to help with tricky tasks, such as picking up small pills. They give you more grip. The gloves are also great for putting on tights, as the fabric won't rip so easily.
Doreen, diagnosed in 1986

I have a very strong tremor and I shake most when I'm in bed. I used to worry I was disturbing my wife, so I tried gripping two rubber balls. These had a good effect at reducing my shaking. But there was only one thing wrong – during the night, I was fumbling around trying to find out where the balls had gone to.

So I came up with two devices that help reduce the shaking. They are made up of two short pieces of pipe insulation, which I grip in each hand, and both have cable ties that act as a strap. It works for me, and they cost just pennies to make.
Gordon, diagnosed in 2008

I've found baby nail scissors invaluable. Cutting is no longer dangerous or awkward. I've found I can use them left or right handed, without the danger of cutting myself.
Sheila, diagnosed in 2007

When my physiotherapist loaned me a laser cane, my family couldn't believe the difference it made to my mobility. The stick has a laser that projects a red line on the floor. I place the stick in front of me and the idea is that I step over the line, therefore increasing my stride.

Until then I’d been afraid to go shopping, worried that I'd be in people's way when I shuffled or froze in the middle of the aisle. The cane made me walk more upright and reduced how often I froze in doorways and confined places. I looked to see if I could buy a stick, but was horrified by the cost. So I found a company who sold laser pens and I clipped one to my own stick, just below the handle. Now I have my own laser cane!
Terry, diagnosed in 2000

I've been living on my own since 2006. I manage most of the housework, but there was one job I had difficulty with: changing the duvet cover. Recently I found the solution – a cover with a zip around three sides. Now I have no more struggles.
Pamela, diagnosed in 2002

 

My husband was getting more and more immobile. He'd sit for long stretches during the day and evening, and then find it difficult to move when he had to. My solution was to set the timer on the cooker to go off every hour, when I then challenged him to walk as many circuits of the house as possible. Now he's been doing it for a while he's becoming more and more mobile and is reaping the rewards.
Janet, whose husband has Parkinson's

My sister-in-law's partner had an operation on his legs and had to use walking sticks. But when he was seated, every time he turned he would knock the sticks over. So I bought some heavy-duty Velcro strip and wrapped the hooked side around each stick, near the top. I then attached the other side to static points around the house – such as the bedside table, close to the sink and the toilet. The walking sticks attach to the pads and stay where they are, rather than falling down. This idea would work well for anyone with Parkinson’s who uses a walking stick.
Peter, diagnosed in 1993

My mother uses a wheelchair and found it difficult to keep a rug on her lap, as her feet are very fidgety with involuntary movements (dyskinesia). I’ve made covers for her to use, which attach to the armrests with Velcro, and so stay in place when her legs shake involuntarily. I’ve made them in fleece for winter and cotton for summer. They keep her warm and protect her modesty!
Mary, whose mum has Parkinson’s

Buy a wipe-clean whiteboard (available from stationers) and write up the month’s appointments or things to do. These can be wiped off ready for the next month. Put it in a prominent place – mine’s in the kitchen.

It’s also handy to buy a small whiteboard and fix it to the back of the hall door for anything you need to do, such as: make doctor’s appointment, post bill to tax man, ring sister, and so on. This should be written every day and ticked or wiped off when done.
Mairead, from our online forum

My husband had problems carrying anything up the stairs, as he needed both hands on the bannister to help him travel up. So we put a shopping bag on a long piece of string and hung it over the stairs. He puts the things he needs in the bag, walks up and then pulls on the string to bring it up to the top. The string is even long enough to walk the bag to the bedroom where he can empty it.
Doreen, whose husband has Parkinson's

I’m currently doing a large amount of sewing by hand. Unfortunately, during the evenings, I can nod off suddenly! Even for a minute or two means a possible parting of needle from thread and having to hunt for the needle. So, now I keep a large fridge magnet next to me to store the needle on. It can be safely at rest when not being used.
Sheila, diagnosed in 2007

I keep a canvas sack bag by the side of my chair. In it I keep my crossword book, knitting and newspaper for easy access.
Helen, diagnosed in 2000

Staying positive

Volunteering will help you focus on what you can achieve, rather than your limitations. Parkinson's UK local groups are always looking for committee volunteers and the roles available can be taken on by someone with limited mobility. If that's not for you, then your local volunteer centre or the 'Do it' website (www.do-it.org.uk) will have a variety of vacancies in your local area, and most charities are keen to attract volunteers with a disability.
Linda, diagnosed in 2002

Positive attitudes will always help you, negative attitudes won’t. What is your attitude right now? Is it curious, interested, excited, inspired, enthusiastic (positive)? Or doubtful, bored, depressed, sceptical, unhappy (negative)? You always have this choice, so choose a conscious and positive attitude at the start of every day.
Laurie, whose wife has Parkinson’s

I babysit my grandson, Alex, who is a toddler, at least a couple of times a week. It rejuvenates me no end.
Kris, diagnosed in 2004

Try to do something new despite the limitations that you may have – you could try learning a new skill or language. Doing something different can make life more interesting.
Karl, diagnosed in 2006

I often think of the song 'Always Look on the Bright Side of Life'. I know Parkinson's can be depressing, but sometimes laughing at yourself helps.
Raymond, posted on the Parkinson’s UK Facebook page

I like to see my friends and family, and keep busy. I don't think there is any other way to be. There is always hope for the future and I know progress is being made.
Sandra, diagnosed in 2007

I try to always remain positive and what helps me most is dancing. For the last three years I have danced to the music I enjoy for half an hour every day. It is excellent exercise, helps keep me flexible and balanced, and gives me a great buzz.

Having a regular positive regime helps me daily. When I wake up I do half an hour of exercises using stretches, weights and t’ai chi. I have a regular regime of daily activities: Monday I go singing, Tuesday it’s sequence dancing, Wednesday is tennis, Thursday is our own Parkinson’s dancing class, Friday it’s table tennis, and at weekends I enjoy family, grandchildren and friends.
Estelle, diagnosed in 2001

When I’m feeling down I find that meditation helps me a lot - it gives me great skills at just living in the moment and being in control of my thoughts (fear/anxiety etc) rather than them controlling me.
Fjw, from our online forum

I needed some tips on how to overcome the boredom of immobility, while my brain is still fully active. I found a solution in listening to audio books. It doesn't involve any movement by me, except operating the remote control, and I can get really engrossed in the story.
Judy, diagnosed in 1991

As time goes on, if you come up against obstacles that stop you keeping up your favourite activities, don't give up. Find a practical solution if you possibly can. I played bridge at a club every week, but I started finding it difficult to play the cards quickly. So, I bought a slotted wooden card rack and this really helps. Now I play cards every week at home with friends.
Diana, diagnosed in 2004

I find t’ai chi a very good way of keeping moving, it is gentle but you use all your muscles. The Nintendo Wii is a great help at home for balance and mobility at your own pace, but most of all PAM - positive attitude of mind - is essential to enjoy yourself .
Marie, diagnosed in 2009

Soon after I was diagnosed, my neurologist suggested a visit to a physiotherapist with expertise in treating people with Parkinson's. This was the beginning of a more positive attitude, as well as feeling more mobile. I had a programme of exercise planned and this was adapted when necessary.

I purchased a ‘physio ball’ (also known as a Swiss ball or fit ball) to exercise at home. I found this suited me – if I had to go out to a class on a winter evening, I would always have found excuses to stay at home!

I now exercise with this ball three times a week for about an hour, and my balance, posture and mobility continue to improve. I also walk regularly and can still manage ten miles – even uphill!

My tip for keeping a positive attitude is to remind myself, especially when the going gets tough: ‘one life – live it!’
Carole, diagnosed in 2006

My aim is to always have some activity in the future that I can look forward to, and so there is something of interest to put in my diary. It can be quite minor, such as meeting a friend or going to the library. Or it could be something more involved, such as a birthday, bank holiday or trip out.
Hugh, diagnosed in 2008

Make sure you have regular contact with people outside of the home. Parkinson’s UK local groups are an obvious choice, but there are many alternative clubs or societies. My wife and I take turns on a rota of stewards in our local church in order that it may remain open.
Jim, whose wife has Parkinson’s

Don’t be your own worst critic! Never ‘beat yourself up’ for what you can’t do but make the most of what you have. Boost your self-esteem by focusing on what you can and have achieved both in the past and present. And don’t stint on things that make life more comfortable – for example, buy a comfortable garden chair, and a few extra flowers for the garden if you would get pleasure from it.
Karl, diagnosed in 2006

An elderly friend of mine, whose dog had died, discovered that the local dog rescue would 'loan' him a mature dog, and even pay any vet's bills. In return he has a beautiful and faithful companion as long as he wants. He looks and feels ten years younger!
Wrinklygran, from our online forum

Five positive actions

• When you get dressed in the morning, imagine each piece of clothing is part of a suit of armour. Once dressed, go forth and have fun, make friends, make it happen.
• Set yourself a goal each day, and try to get out of your house. Why not invite your friends and go for a walk?
• Get a new hobby. For instance, making models (trains, boats, etc) will help with your finger movements.
• Write a list of what you are good at, and your successes.
• Mix with positive people, and do voluntary work.

 
Bob, diagnosed in 2003

Taking medication

Ask your local health centre if they have sample tablet or pill bottles available for free. They make great tablet boxes (they are small and fit in your pocket) and they are usually transparent, so you can see your tablets.
Peter, diagnosed in 1993

Do you find it a nuisance, forever opening your tablet packets at the wrong end? Then write an arrow at the correct end of the container. I find this simple, but useful, and it reduces tension at pill time.
Brian, diagnosed in 2002

As my husband’s carer, I always keep his medication in an ice-cream container with a list of what time the medication is given and what each drug is for and the dose. Whenever he has been admitted to hospital the staff have been grateful that the medication is with him, and most importantly, they know what time it should be administered.
Margaret, whose husband has Parkinson’s

My husband is very pleased with a parking timer bought off the internet for less than two pounds including postage. It’s a small gadget that can hang on a belt or keyring. The front opens to reveal buttons that set the time. A window shows the time you have set, and it counts down like a digital kitchen timer. When it gets to the end of the time it beeps.

My husband takes the medication when his timer beeps, and then he sets it again for the next time. In fact, as my husband is deaf I wear the timer, and dexterity is not a problem for me as it might be for a person with Parkinson’s. But the timer is so cheap that it’s worth getting one and trying it.
Hatknitter, from our online forum

When I was working full time, I set reminders up on my computer that displayed at the relevant times when to take my medication. This procedure ensured I always took my tablets with precision.

When I retired, I was not sitting at my computer all day, and because I was involved with other things I started missing times to take my tablets. I solved this problem by purchasing an electronic pill box.

This allows me to set up to eight alarms each day. A light display also comes on after the alarm has ended.
Jaycee, from our online forum

If you’re going out and need to take your medication with you, always take twice the amount. This means if you drop one of your tablets on the floor or down the sink, you always have a spare. Simple but worth doing.
Darryl, diagnosed in 2000

Before going to bed at night I make up all my meds for the next day in a partitioned pill dispenser with an alarm. If I'm away on holiday my pharmacist will pre-pack and supply an extra week in marked boxes, along with a GP's letter - I just need to give three weeks’ notice.
Peter, diagnosed in 2005

Parkinson’s UK’s Medication Card is small enough to keep in your bag when out and about. It has plenty of space to list multiple medications and timings. You can update it whenever you need to. See page 30 for details of how to order.
Jo, Resources Editor at Parkinson’s UK

Going into hospital? Then order our free Get It On Time washbag to help let hospital ward staff know that you need to take your medication on time. It comes with tips on preparing for a hospital stay, a medication record book, a card to put by the bed, and reminder slips to alert staff that you have Parkinson’s. See page 30 for details of how to order.

You can also get a variety of pill timers from our online shop: parkinsons.org.uk/shop
Stephen O’Brien, Parkinson’s UK helpline adviser
Where to find more hints and tips
If you would like more tips then try the following:

• Parkinson’s UK’s online forum is a lively site full of useful tips and hints. You can search for something specific or look under section headings, including ‘Daily life’, ‘Health and wellbeing’ and ‘Treatments’ to find what you want. Visit parkinsons.org.uk/forum

• The Parkinson – join Parkinson’s UK and receive this magazine four times a year. It has a regular tips page. Visit parkinsons.org.uk/join or call 020 7932 1344. 

 

• Call our free confidential helpline for general support and information. Call 0808 800 0303 (calls are free from UK landlines and most mobile networks) or email hello@parkinsons.org.uk. If your first language is not English there is also a telephone interpreting service covering more than 170 languages.

• Contact the peer support service to talk to a trained volunteer who has a similar experience of Parkinson’s to you. They can offer tips on ways of coping with Parkinson’s or caring for someone with the condition. Call 0808 800 0303 and ask to be matched with a volunteer.
  
• Local support groups are a great place to pick up useful hints and tips. To find a group near you call our helpline on 0808 800 0303 or visit parkinsons.org.uk/localgroups

 

More tips please!
If you have a hint or tip that makes living with Parkinson’s easier, we’d love to hear from you. The best tips will appear in future issues of The Parkinson, or in the next edition of this booklet!
Write to us at Resources and Diversity, Parkinson’s UK, 215 Vauxhall Bridge Road, London SW1V 1EJ. Or email us at publications@parkinsons.org.uk

 

More information and support

Information and support from Parkinson’s UK

Our helpline (0808 800 0303) can put you in touch with one of our local information and support workers, who provide one-to-one information and support to anyone affected by Parkinson’s. They can also provide links to local groups and services.

Our website has information about your local support team and how to contact them at parkinsons.org.uk/localtoyou

Parkinson’s nurses

Parkinson’s nurses provide expert advice and support to people with Parkinson’s and those who care for them. They can also make contact with other health and social care professionals to make sure your needs are met.

The role of the Parkinson’s nurse can vary. Each will offer different services, aiming to meet local needs. Some nurses are based in the community, whereas others are based in hospital settings. Many Parkinson’s nurses are independent prescribers. This means they can prescribe and make adjustments to medication, so someone with Parkinson’s doesn’t always need to see a specialist for changes to or queries about their Parkinson’s drugs.
Parkinson’s nurses may not be available in every area, but your GP or specialist can give you more details on local services.

You can find out more at parkinsons.org.uk/nurses

Useful contacts

Age UK

This national charity offers information and support for older people and also runs computer training courses.

Age UK England

www.ageuk.org.uk

Age Cymru

www.ageuk.org.uk/cymru

Age NI

www.ageuk.org.uk/northernireland

Age Scotland

theagedscotland.org.uk
www.ageuk.org.uk/scotland

British Association/College of Occupational Therapy

Information about occupational therapy and details on where to find a therapist near you. You can also download leaflets from the website.

www.cot.org.uk

 

Chartered Society of Physiotherapy

Information about physiotherapy and details on where to find a physiotherapist near you. Also has an online enquiry service.

www.csp.org.uk

 

Disabled Living Foundation

A charity giving impartial advice and information on daily living aids, including mobility equipment. It has a helpline, factsheets and an equipment demonstration centre where you can try items for free.

www.dlf.org.uk

Remap

This charity tailor-makes equipment to improve quality of life and independence for people with disabilities.

www.remap.org.uk

Remap Isle of Man

01624 825 903

Remap Scotland

www.remap-scotland.org

 

Thank you
Thank you very much to everyone who contributed to or reviewed this information sheet:

Annette Hand, Parkinson’s Disease Nurse Specialist, Jubilee Day Hospital, North Tyneside

Philippa Greenslade, Occupational Therapist, Independent Living Centre, Exeter

Thanks also to our information review group and other people affected by Parkinson’s who provided feedback.

How to order our resources

Download them from our website at parkinsons.org.uk/publications

We make every effort to make sure that our services provide up-to-date, unbiased and accurate information. We hope that this will add to any professional advice you have had and will help you to make any decisions you may face. Please do continue to talk to your health and social care team if you are worried about any aspect of living with Parkinson’s.

We’re the Parkinson’s support and research charity. Help us find a cure and improve life for everyone affected by Parkinson’s.

Can you help?
At Parkinson's UK, we are totally dependent on donations from individuals and organisations to fund the work that we do. There are many ways that you can help us to support people with Parkinson's. If you would like to get involved, please contact our Supporter Services team or visit our website at parkinsons.org.uk/support. Thank you.

 

Last updated February 2013.
© Parkinson’s UK, February 2013. Parkinson’s UK is the operating name of the Parkinson’s Disease Society of the United Kingdom. A charity registered in England and Wales (258197) and in Scotland (SC037554).