8. "An OAP at 18": Help

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8. "An OAP at 18": Help

"To aid, assist, support, succour, remedy or prevent". What better way to describe the word HELP, than these taken from my dictionary. This chapter tells of the help, both mental and physical, that I have had. I shall begin with what I consider to be the most important aids.

Physiotherapy

I have had physiotherapy for the last six years. Not much at first but over the years as the disease has progressed the amount of therapy has increased. When I am on one of my regular "holidays" in Astley Ainslie Hospital, I have physiotherapy every day. I also have an hour every morning in the hydrotherapy pool, exercises in a pool of very warm water. Kate, my physiotherapist and friend, showed Peter and me exercises that I could do at home. This has become increasingly difficult of late as the disease has got a much firmer hold on me, and so arrangements were made for me to attend the nearest hospital for hydrotherapy twice a week. This happens for about three months and then for the next three months a domiciliary physiotherapist calls at my home once a week to help me with my exercises.

I have met a few fellow sufferers who have never had physiotherapy or who have been told that it does not help. I know that everybody is different and that it is quite possible for it to help some and not others, but I would advise everyone to give it a try. You never know until you try. After suffering for sixteen years I can say, that I am much more mobile with therapy than without it. I know that if I miss even a couple of days, I become extremely stiff and sore and very immobile.

There are numerous exercises you can do to keep mobile, far too many for me to describe, but all it takes is a word or two to your doctor or a letter to the Parkinson's Disease Society (you will find the address at the back of the book). The society has produced some exercise sheets that have been approved by a physiotherapist.

Physiotherapy is a lifeline. I maybe more or less housebound and no longer able to do my own housework but I shall continue with it for as long as it keeps me from becoming a frozen vegetable.

Occupational Therapy

The role of the occupational therapist is to help and advise you on how to cope with the various problems and difficulties that arise as the disease makes it's way through your body. Over the past few years, the occupational therapist has done regular assessments of me performing day-to-day tasks. By doing this she can tell just how much difficulty I have in carrying out these tasks and to suggest various aids that would help me perform better.

There is a Disabled Living Centre at Astley Ainslie Hospital. This centre is a showroom with a difference. Not only does it house several types of electric wheelchairs and buggies, it also has on display every conceivable aid designed to make life easier. Anything from a potato-peeler to an electric hoist to lift you in and out of bed or the bath. There are also aids to help you dress and eat. I have tried things for pulling up socks or tights without much success; shoe horns, long and short, and elastic shoelaces. There are hooks for doing up buttons. An electric toothbrush makes cleaning my teeth much easier. I have cutlery with thick handles, allowing a better grip, a lightweight cup, a deep plate and rubber mats that prevent the plate from moving. Also very useful are electric scissors and scissors that you squeeze.

I have various gadgets for use in the kitchen. An electric knife, an electric tin opener, a kettle tipper (I prefer to use a jug kettle). I've tried several types of vegetable peelers but I find that you need at least one good hand, which I don't have. Objects for opening bottles and cans and handles for helping to turn the knobs on a cooker and turning door keys. There are bathroom aids. There are toilet seats that raise the height of the seat, some with handles and some without. There is a wide range of bath seats and bath rails and handles. In fact there is probably a device for every conceivable chore.

If the need for a wheelchair ever arose then these are the people your doctor would refer you to. At first, I was afraid to be seen in mine, but now my family take me everywhere in it. Either that or I would have to become a hermit.

Family

The best help of course comes from the family. If the family give you all the love and support you need, then it gives you a lot more confidence and incentive. I have always said that being a young mother has given me a greater incentive to fight the disease in order to share their lives and not to become a burden.

Psycologist

I have had several sessions with my psychologist. These sessions are extremely helpful when things are not going smoothly and I can't find a reason or a solution.

District Nurse

I have been offered the services of the District Nurse who would come in every morning to help me dress or bath me or wash my hair. At the moment I can manage myself, with great difficulty. Quite often I have to ask Peter or Stuart to assist but Stuart has just entered his teens and may soon get embarrassed having to pull up my knickers. So in future, when Peter is on an early shift, if I get stuck all I have to do is phone for the nurse and she will come and help me.

Chiropodist

My feet are now a mess due to the shape of my re-moulded feet, caused by bad walking. My toe nails are so deformed and hard they have become impossible to cut. The answer was for Dr Pentland to write a letter to the Chiropody Service. I now have a regular pedicure in the comfort of my home.

Dentist

I have recently been in- formed that the Dental Service now provides treatment in your home. I have not made use of this service as I get all my dental treatment at the hospital. I consider myself to be very lucky in that I am treated at a very good hospital by a very good doctor. I am made aware of and, indeed, offered all the help that I need.

Fashion

I have found quite a few problems with clothes, mainly due to my posture. It was not a major cause for concern in the early stages of the disease but has been a constant worry over the last couple of years. Because I stoop forward, quite badly at times, nothing ever hangs right. A skirt or dress always hangs down at calf length in the front and rises up at the back, often revealing a bit more than one would like. The offending garment makes things worse by clinging to my hips giving the impression that I have an extremely large rear end. How can this be rectified? Do I get a dress made with extra length on the back? Do I wear a dress and sit down all day? Neither of these. I try to correct my posture and hope that nobody notices. But there is another problem. Apart from a stoop, my right shoulder is lower than the left. This means that whatever I wear, a jumper, blouse or dress, it falls down over the shoulder, thus revealing my bra strap. It also looks as if one sleeve is longer than the other. How do I get round this? Have clothes made with a larger shoulder and have one sleeve made longer than the other? No. Once again I try to correct my posture. This involves a great deal of concentration, which is lost as soon as my attention is drawn elsewhere.

An example of this happened last year. When I'm not very mobile and have to use the wheelchair, the thought of dressing up and looking feminine fades away. Last year, after starting the Lithium, I felt like a new person. Peter and I were going to a Parkinson's Think Tank weekend so l decided to make an effort with my appearance. I bought two new dresses and had my hair done. I looked good and felt good and Peter told me so. But all through the evening and dinner I found that I was constantly pulling my dress up over my shoulder, and I felt that everyone was watching me. Peter told me that if I left it alone everything would be all right and that my constant fidgeting was attracting more attention. I had thought about pinning it but it would not be very practical.

Peter is always telling me to pull my jumper down. Because of the stoop jumpers and T-shirts are constantly rising up over my hips, usually ending up round my waist. This also makes my bottom look bigger than it is. I try looking in the mirror but my view is not the same as that of others. Of course it feels uncomfortable at times and is very annoying having to pull it down every five minutes. The ideal solution to this problem would be to incorporate some kind of weight into the hem or maybe fix velcro to all my clothes.

Every outfit looks so much better if you wear the right shoes. Problems arise when it is time to dress for that special occasion. The present footwear trend is high heels. I can no longer wear high heels so flat shoes are "in". I also have difficulty keeping slip- ons on my feet so the only choice is buckles or lace ups. Definitely not very flattering.

I have not been able to find anyone to help me with this increasing problem. Until now that is. I have just recently met a lady who is a clothing adviser to the disabled. After telling her about the difficulties that I have, she suggested that we get together with her designer and see what we can come up with. There is hope yet.

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