Women with MS outnumber men by about two to one. Men with the disease, therefore, can feel particularly isolated, writes MICHAEL KELLY.
MULTIPLE SCLEROSIS (MS) is one of the most prevalent diseases of the central nervous system and directly affects an estimated 2.5 million people worldwide including 7,000 people in the Republic.
The condition does not significantly reduce life expectancy, but it can have a devastating impact on quality of life with common symptoms including pain, deadening fatigue, and problems with sight, mobility and co-ordination.
For 47-year-old Pat Dwyer, the condition first manifested as a stiffness in his legs. Dwyer was an avid soccer and GAA player in his 20s and 30s and he initially put this problem down to wear and tear from the rigours of sport.
“It got to the stage that I was dragging my leg,” he explains, “and my wife Joan was getting on to me to get it checked out. She was saying, ‘there is something wrong with you, go to the doctor’.” An MRI scan in 2001 led to a diagnosis of primary progressive MS.
Women with MS outnumber men by up to two to one which can make it a particularly isolating disease for the men who have it. “All autoimmune diseases are more common with women and it is the same with MS,” says Prof Michael Hutchinson, consultant neurologist at St Vincent’s University Hospital, Dublin. “We don’t know exactly why this is the case though it could be to do with the effect of oestrogen on the immune system.”
Relapsing remitting MS is the most common form of the condition and is characterised by a recurring cycle of relapses and remissions. Primary progressive MS is characterised by progressive disability and it is slightly more common in men.
About 15 per cent of people with MS get primary progressive, according to Hutchinson, and it tends to develop later than relapsing remitting (typically when the patient is in their 40s). “Because it develops later, people can live relatively symptom free and have a normal life until it develops. They can make a career and have families and so on.”
MS is a very difficult condition for men to accept, according to consultant neurologist Prof Orla Hardiman. “They are more likely to be in a physically active job and even in this day and age, men are more likely to be the main breadwinner so there is a significant impact on earning capacity. MS has a very significant impact on both genders but in many cases it’s more problematic for men.”
According to Dwyer, whose legs have now deteriorated to the point where he relies on a wheelchair to get around, with the resulting loss of independence, “It is a constant downhill spiral.
“The legs are the big thing for me but there are hidden problems that come with MS too. Fatigue is a major issue, especially in the afternoon. I have bladder problems sometimes and I have to use a catheter occasionally. I valued my fitness when I was younger but I am limited now to some very light exercises. It’s frustrating when you realise you are not as strong as you were.”
One of the most difficult aspects of chronic illness for many men is the reaction of family and friends. “People do treat you differently. You become a patient. My youngest girl who is nine has never seen me any other way and she is accepting of it. My older two children and my wife saw me as I used to be so it’s more difficult for them.”
Dwyer is aware that his decision to put his symptoms down to a sports injury for so many years was a classic male reaction to the possibility of ill health.
“If I had gone to the doctor 10 years earlier, I think it might have made things worse to be honest. It might have stopped me from doing some of the things that I did in my 30s like travelling. Primary progressive MS is different, there is so little you can do about it. With relapsing remitting MS if you catch it early and get on treatment, you are potentially going to reduce the damage from the relapses.”
Hardiman says: “You can’t really miss MS. The first attack will usually trigger a referral so we don’t really have an issue with men under-reporting the condition the way you might with other illnesses. To be honest, that can be more of an issue with women because symptoms such as numbness and tingling in fingers are often put down to the effects of an epidural during pregnancy.”
There is no cure for MS but breakthrough drug therapies such as beta-inteferons and Tysabri can significantly modify the course of the disease – unfortunately these treatments are not prescribed for primary progressive MS.
“The drugs I am on I would call them Neanderthal drugs,” says Dwyer. “They are focussed on relieving pain, fatigue and stiffness.”
It is estimated that 50-75 per cent of those with MS use complementary and alternative therapies to help manage symptoms. Research has indicated that natural supplements (eg fish oils), magnetic-field and neural therapies, reflexology, massage and t’ai chi may be helpful for people with MS to enhance their sense of wellbeing. Men of course are notoriously reluctant to embrace such treatments but Dwyer believes they have their place alongside conventional medicines.
He has also found help and psychological comfort from support groups. “Initially I was very hesitant to attend support groups because I think I was in denial about my condition, but once I accepted it I could see that they would be a great help to me.”
Men with MS, he says, should not feel isolated because there are more women with the condition. “Believe me, when it comes to MS, women are treated just as badly by the system as men.”
Hardiman says, “I think that any chronic disability associated with physical decline is isolating.It will quickly uncover existing difficulties in a relationship and I am aware of couples who split up after the man was diagnosed with MS.
“When that happens it’s very difficult for men because their social network is typically not as well developed.”
Unemployment and the resulting loss of income, status and identity is a devastating side effect for men with MS. More than 70 per cent of people diagnosed with the condition are unemployed and Dwyer (a civil servant) had to stop working in 2003 at the age of just 43.
“They weren’t in a position to facilitate me working from home and it was just becoming too difficult to get to work. It got to the stage where it was taking me an hour to get myself ready in the morning.”
True to his generally optimistic form, however, Dwyer counts himself lucky with regard to income. “I am on a pension and my wife is a teacher so we don’t do too badly. We are very, very lucky. I know a lot of people with MS where they have no income at all.
“I do some writing now which won’t ever earn me a fortune but I don’t know what I would have done without it. I have written three books on the subject of MS which has kept me going. It would be very bleak if you had nothing to do. My advice to people with MS is to get a hobby.”
A particular problem for men with the condition is in the whole area of sexual health. MS-related nerve damage in the parts of the brain and spinal cord that are involved in sexual arousal and response can impact sexual function.
Approximately 70 per cent of men with MS experience erectile problems and up to 50 per cent experience problems with ejaculation.
“Difficulties with erection and ejaculation can have a huge impact on intimacy and sexuality which can be a huge strain for relationships,” says Hardiman. “It is important to emphasise that these problems and indeed bladder dysfunction can be addressed and treated. The first step is to recognise them as a problem. We still see men with these issues who are embarrassed but they shouldn’t be.”
Despite the debilitating nature of his illness and the impact that it has had on his life, Dwyer remains upbeat. “I try as much as possible to have a positive outlook and to remember how lucky I am. If I can maintain it at the level it’s at and not let it go downhill too much, that would be great.
“I am at the stage where I have acceptance, without resignation.”
- The MS Ireland helpline (1850 233233) offers confidential advice and information on living with MS. www.ms-society.ie.
- All proceeds from the sale of Pat Dwyer's latest book Above Ground and Breathinggo directly to MS groups. Contact Balcony Books in Tullamore, Co Offaly on 057 9327471