department, you should do so as soon as possible (see Chapter 4 for more information about making contact). If appropriate, she or he will also be able to recommend equipment especially suited to your needs. Some items are very simple, such as non-slip mats to hold mixing bowls, padded handles, high stools and trolleys.
Others are more expensive and he or she may suggest a visit to your nearest Disabled Living Centre to try various models before deciding what to buy (see Appendix 1 for the Disabled Living Centres Council’s address – they will give you details of your nearest centre).
Cooking can be a rewarding and enjoyable hobby as well as a practical necessity, so it is a good idea to try to maintain this interest.
My mother, aged 75, loves to have a ‘proper’ bath but slipped recently in the bath and has lost confidence.
I realize that we could have a shower fitted but is there any other solution to her problem?
One of the authors was once told that showers were all right for getting clean but if you wanted a deep, emotional experience, then a ‘proper’ bath was necessary! We think it is easy for professionals to underestimate the importance of baths as relaxation, especially for older people, so your question is an important one.
There are several lines of approach. You could try to help your mother feel more confident again by getting her to practise (with bare feet, of course, to prevent slipping) getting in and out of the bath while you are present. It can also help enormously if you, or someone else with whom she feels comfortable, can be around when she has a bath. There is also a wide range of appliances such as rails, mats and bath seats that might help, An occupational therapist could advise further. See Chapter 4 for details of how to make contact.
You could request help with bathing by asking for a community care assessment. See Chapter 4 for more information about these. Who provides bathing services depends on your local area.
In some places it will be social services and in others the Primary Care Trust. There is a question on bathing services in Chapter 4.
Another possibility is to see if there is a local nursing home which offers day care. Some of them have a variety of baths including ‘walk-in’ models, one of which might be especially suitable for your mother. Nearly all of these solutions might cost something depending on the arrangements in your local area and your mother’s income. Using the nursing home would almost certainly be the most expensive unless the social services department agreed to provide it as part of a community care package (see Chapter 4 for more details).
I have been told that good dental hygiene is important and I do try, but manipulating a toothbrush is now quite
difficult. Is there anything which would help?
You are right about good dental hygiene being important – a healthy mouth and strong teeth contribute to good appearance and good diet. A padded handle on your toothbrush might help and some people find an electric toothbrush very useful. As with any other activities which you find difficult or tiring, you should choose a time of the day when your medication is working reasonably well. Mouthwashes, or chewing gum between brushing, may also be helpful. Be sure to keep in regular touch with your dentist (see Chapter 4 if finding a suitable one causes any difficulties).
It is also worth noting that any tasks such as brushing teeth, shaving, drying hair, and so on (all of which require controlled hand and arm movements) may be easier and less tiring if you support your elbows on a dressing table or other flat surface. Your dentist or an occupational therapist might be able to advise further. See also the booklet Parkinson’s and Dental Health (B45).
The monthly discomfort of my period is made worse by the practical problems of my Parkinson’s. What advice can you offer?
This is a difficult question to answer because the information on how Parkinson’s affects younger women is limited. However, in
recent years the PDS Helpline has received quite a lot of anecdotal information from young women regarding gynaecological problems and their monthly cycle. There has been a study in the USA in which 75% of the women noted worsening of their symptoms before and during their period.
First you need to talk with your doctor to ensure that both your Parkinson’s and your periods are being managed as well as they can be. Some neurologists, working with a gynaecologist colleague, may alter the dosage of levodopa during menstruation.
If you can arrange your social diary to avoid very strenuous activity during this time it might avoid further frustration because, although you do not want Parkinson’s and menstruation to rule your life, you do want to enjoy any special events to the full. If you have Parkinson’s Disease Nurse Specialist, they might be able to advise you.
You can feel very isolated with this kind of problem because the number of younger women with Parkinson’s is relatively small, so you may like to consider joining the YAPP&RS (see Chapter 15 for more information). This is a special section of the Parkinson’s Disease Society for younger people, which enables you to exchange ideas with people who are likely to share some of your problems.
I have some gynaecological problems and I need to talk to someone about what can be done and how allowance can be made for the effects of my Parkinson’s – I have both
‘off’ times and fairly severe involuntary movements. Who could help me think things through?
As we said in the previous answer, the number of younger women with Parkinson’s is relatively small so there are hardly any people around with the sort of combined expertise that you need. There is some interest amongst Parkinson’s specialists in the effects of hormones on Parkinson’s and daily living skills but little documentation. One of the first things to do would be talk to your Parkinson’s consultant who might be able to suggest some strategies for dealing with your particular problems or have a gynaecologist colleague with whom he or she could work with to
try and resolve your problems. Other sources of possible help might be a Parkinson’s Disease Nurse Specialist, one of the nurses on the PDS Helpline or other women with Parkinson’s who are members of YAPP&Rs, the PDS’s special interest group for younger people with Parkinson’s, and who are experiencing similar problems.
You do not state what your gynaecological problems are and whether they will necessitate surgery. Generally speaking people with Parkinson’s can undergo general surgery but again, because gynaecological problems involve female hormones, and because these have an effect on people’s Parkinson’s, it requires careful management. It might be helpful if you kept a diary for the next month or two so that you have some pattern regarding your problems when you next see either consultant.
Dressing and undressing is such a hassle for people with Parkinson’s especially if they live alone like me. What sorts of clothes are best and where can I find a good selection?
Yes, dressing and undressing can be difficult, and suitable clothes can make an important contribution to easing the problem.
However, it is also important to choose a time when your tablets are working reasonably well and a place where you can be comfortable so that you can take your time. An occupational therapist should be able to advise further on aspects of dressing and clothes that might make it easier for you to manage.
Today’s casual clothes with their elasticated waistbands and baggy tops can be ideal for people with dressing problems, and have the added advantage that you can look like everyone else if you wish. Velcro, which is now used for fastenings on everything from waistbands to shoes, has been a great boon to people who have difficulty getting dressed.
The Parkinson’s Disease Society publishes an information sheet on Clothing (FS31) and there are also some special mail-order catalogue selections of clothes for people with dressing problems, including J D Williams & Company Ltd. The Disabled Living Foundation has several information sheets on dressing and
a book called All Dressed Up, which you might also find helpful.
Your nearest Disabled Living Centre may have a clothes alteration service or, alternatively, know of someone who can provide this service. (See Appendix 1 for contact details.)
On more general aspects of living alone with Parkinson’s, see the PDS information sheet, Living Alone (FS29).
My mother, who has had Parkinson’s for over 20 years, is beginning to have problems of urinary incontinence and is very distressed by it. What help is available?
Yes, this problem (which may or may not be related to her Parkinson’s) is often distressing, but there are things which can be done to help. First you should ask the doctor to examine your mother and identify the cause of the problem as there may be a specific treatment available. There should also be a specialist continence advice service in your mother’s local area. Continence advisers are skilled in advising about retraining the relevant muscles, in practical strategies to reduce the likelihood of accidents and in obtaining access to aids and/or laundry services if these become necessary. Your mother’s GP surgery should be able to advise you on what is available.
If your mother finds it difficult to talk to her GP about the problems she is having, many continence advisers accept self-referral so you don’t have to go through the GP first. The Continence Foundation can provide information on services available in your area. They also provide information, advice and support to people coping with continence problems and have a confidential telephone helpline where it is possible to discuss problems without giving names or feeling embarrassed. You might also find the PDS publication, Looking After Your Bladder and Bowels in Parkinsonism (B60) helpful.
Food, and the way we choose, prepare, present and control it, is a very important part of everyone’s life. It can be especially important for people with long-term medical conditions and this is certainly true for people with Parkinson’s. When we discussed attitudes in Chapter 5, we stressed the importance of helping yourself, of retaining interests and of feeling in control of your own life. A balanced approach to questions of eating and diet can contribute to all these aims.
Eating and diet
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