Although it is true that fatigue is a common and often under-estimated symptom of Parkinson’s, it is also important that your husband keeps as active and involved in things as possible. If he becomes more dependent on you than is necessary, he will tend to feel helpless and bored, will have fewer topics to talk about and may become more liable to depression. In addition you will become more tied to the house and less able to keep up your own activities and interests, so both of you will suffer. The PDS has an information sheet on Fatigue (FS72), which you might find helpful. We would also suggest that your husband discusses the tiredness with his doctor or Parkinson’s Disease Nurse Specialist who might be able to advise further. Tiredness can also sometimes be the symptom of other health problems, including depression, which is common in Parkinson’s, so it is important to check.
One possible solution is to encourage your husband to pace himself, doing things for himself at times when he is at his best and taking rests as necessary. If he rests too much during the day, his sleep at night may be affected, so creating another problem.
One of the big difficulties for relatives of people with Parkinson’s is knowing when to encourage them to do things for themselves and how to recognize the times when this is not possible. As abilities can vary from day to day – and even from hour to hour – this is not easy and requires great patience and sensitivity. Try to get other family members to understand how to keep this balance too. Don’t be too discouraged if you don’t always get it right. It is difficult and people don’t become saints just because they or their spouses develop Parkinson’s!
I’m a hyperactive, rather impatient person and I’m feeling really bad about the way I snap at my wife who has
Parkinson’s and is therefore slower than she used to be.
What can I do to make things easier for both of us?
Your question is a courageous and honest effort to face up to a difficult problem. As indicated in the answer to the previous
question, people who develop Parkinson’s, and their partners and families, do not stop being the people they were before. The challenge is to find a new way of living which takes account of all the elements in the new situation.
Perhaps the best way for you and your wife to start is to sit down together and acknowledge the problem and your sadness that you sometimes hurt each other. If you think her slowness has got worse recently, you could check with her GP or consultant whether any adjustment to her medication might help. Meanwhile you can try to identify the particular situations that you both find most frustrating and plan ways of avoiding or easing them. You may not realize, for example, that trying to hurry people with Parkinson’s can make them slower, not faster. Both of you need to allow plenty of time for the tasks you intend to tackle, so you have to accept the need for much more planning in your lives.
One person with Parkinson’s told us that this was, for him, the hardest thing to accept, so we are not suggesting that it is easy!
Having allowed enough time (and, where possible, having programmed activities for a part of the day when your wife is at her best), don’t stand around and watch while your wife gets dressed etc., unless she needs your active assistance – go and do something else!
An extension to this last point is that you both need to retain or acquire some enjoyable activities that you can pursue indepen-dently of each other. Then, when you are together, you may find that you are able to be more relaxed and patient. For information about longer breaks, see Chapter 13.
You might also get some benefit from meeting other carers and discovering that other people have similar feelings and problems.
Your local PDS branch will provide opportunities for you to meet other carers and there may also be a local carers support group or centre run by carers organizations such as Carers UK and Princess Royal Trust for Carers. See Appendix 1 for contact details.
We have a very happy marriage, perhaps partly because we’ve always had some individual as well as shared interests.
Now my husband has got Parkinson’s and I’m afraid I will resent having to give up my own ‘space’. Am I being selfish?
Your fears are very understandable and probably not selfish at all.
Most doctors and other professionals involved with people who have been recently diagnosed, stress the need for both parties to maintain their interests and independence and to live as normal a life as possible. Because Parkinson’s can be difficult to diagnose, some people have been through many months of anxiety and uncertainty by the time that they get the diagnosis and treatment can begin. This can mean that they have already withdrawn a bit from their activities and their partner has had to do the same.
However, once your husband has the correct treatment, you should both be able to pick up all or most of your earlier interests. As you suggest, such diversity can actually strengthen a marriage and it can certainly make any necessary adjustments which follow the onset of Parkinson’s easier to handle.
I don’t know how much longer I can cope. My husband was the dominant, decision-making partner in our marriage and we both liked it that way. Now he is quite disabled with Parkinson’s but the real problem is that we don’t seem to be able to adjust to our new roles – I feel over-whelmed and indecisive. He feels frustrated and angry.
Every marriage or relationship is unique and there are many different ways of sharing the roles and being happy. The problems arise, as you have discovered, when circumstances change and your particular solution no longer works. We can’t tell from your question whether you have felt able to sit down and talk these matters over with your husband. If you haven’t, that would be the place to start. Outside help – from a trusted friend, from the PDS, a carers organization such as Carers UK and Princess Royal Trust for Carers, or a counsellor working at Relate may also enable you both to explore whether the situation can be improved and, if so, how. See Appendix 1 for contact details.
I am 36, have recently been diagnosed as having
Parkinson’s and am beginning to understand some of the symptoms and also what can be done to help. The thing that worries me most is how it might affect my
relationship with my husband.
This is a very understandable concern and it is a good sign that you can put your anxieties into words. Perhaps you will be able to take the next step and talk it over with your husband – you will probably find that he has some anxieties about this too.
‘Relationships’ within marriage have many features including the way in which roles are shared as well as specific emotional and sexual aspects. Almost everything that happens to a couple can affect their emotional and sexual relationships, and there is no doubt that Parkinson’s can call for quite a lot of adjustments.
There are very close links between how people feel about themselves and how satisfied they feel with their marital/sexual relationships. Any illness or disability can affect our self-image and our most intimate relationships. However, it is also true that many people continue to have satisfactory marital and sexual relationships despite having Parkinson’s.
If it is the sexual aspects which cause you particular concern, The PDS booklet Sex and Intimate Relationships (B34) may be useful to you. It includes information on how Parkinson’s may affect sexual relationships as well as treatments that are available to help. From research undertaken into sexual relationships and Parkinson’s, stress, anxiety and depression seemed to be more important causes of problems than anything directly related to the Parkinson’s, and something can usually be done to help in such circumstances.
One important piece of advice offered by several people with Parkinson’s is to retain and treasure the small signs of affection and togetherness – touches, cuddles, kisses – which remind both the person with Parkinson’s and the carer that they are loveable and loved. If you do not already know about YAPP&RS, the special Parkinson’s Disease Society group for younger people like yourself, you can find information about it in Chapter 15. You might find it helpful to discuss some of your fears with others who are in a similar position. Your consultant or Parkinson’s Disease Nurse Specialist might also be able to help. See Appendix 1 for contact details.
Does Parkinson’s cause impotence? My husband has become impotent at the age of 39, four years after being diagnosed.
Parkinson’s can cause erectile dysfunction (the preferred term used by doctors to describe impotence) as can the stress and anxiety which are sometimes associated with it. Some drugs used for other conditions, including some of the new antidepressants, may also have this side effect. If your husband has not already sought help, you should talk to him about the problem and encourage him to do so. His GP or neurologist may be able to help by referring him to someone with special expertise in this field.
Emotional support and counselling may be enough but, if not, there are other options which can be tried. These include the much publicized drug Viagra (generic name sildenafil), Yohimbine tablets, a vacuum pump, and injection of a drug called papaverine
directly into the penis. The availability of these treatments on the NHS seems to vary depending on local arrangements, so it is important to explore what is available where you live. In the case of Viagra, Parkinson’s is included on the list of conditions that can cause erectile dysfunction and can be treated with this drug on the NHS.
Does Parkinson’s have any effect on fertility?
For obvious reasons, the number of people with Parkinson’s who are at the childbearing stage of life is very small, but we know of both men and women with Parkinson’s who have produced children after they have been diagnosed.