Patient Story – Michael

My name is Michael, I am 63 years old and live in Malton in North Yorkshire with my partner who has more recently also become my carer. In the earlier part of my working life I had a variety of jobs but in my mid-thirties began a career in nature conservation working initially as a park ranger and then as a field ecologist and biodiversity officer. I led a very active life, regularly cycle touring, hiking and swimming. I was also a musician and have had a lifetime interest in the arts and culture. I retired from work in 2018 on the grounds of ill health.

In my early thirties I was diagnosed with myotonic dystrophy. This is a genetically inherited condition which causes the nerve endings which go into the muscles to die back. The ultimate consequence of this is that the muscles fail to function properly and eventually begin to waste away. However, it was about fifteen years after diagnosis before symptoms of the condition began to manifest themselves. Therefore, I led a normal life until I was about fifty years old. Since that time my physical capabilities have been slowly but inexorably diminished and this includes reduced heart and lung function.

The reduced lung function meant I began experiencing breathlessness even as a result of basic body movements. I was also having difficulty sleeping because my lungs were not drawing in enough oxygen or expelling the carbon dioxide sufficiently. This meant I was sleeping very fitfully, regularly waking up during the night and not getting enough good quality sleep. The result of this was that during the daytime I would regularly ‘nod off’ (even during conversations) and I never really felt energized.

At this point it was suggested to me that it would be beneficial to use a home mechanical ventilator (HMV) to help me sleep better during the night. Initially, I was resistant as I have an abhorrence of anything covering my face and felt that the wearing of a mask would be a major obstacle for me. Indeed, the wearing of the full mask proved difficult but I tried the mask which simply covers my mouth and presses against the underside of my nose. To get accustomed to the wearing of this mask I tried it during the day whilst sitting in an armchair. At the first time of trying, I fell asleep within ten minutes and slept for three hours.

After a repeat of this trial, I was encouraged despite my apprehensions, to try the device for a whole night in bed. Once again, I fell asleep very quickly and slept for four hours. I awoke only briefly and then slept for another four hours. This was the best night’s sleep I had experienced for over a year. It was not just the amount of time I was asleep but the sleep felt deep and I awoke in the morning feeling more refreshed than I had for a very long time.

I now sleep every night for about nine hours and no longer fall asleep during the day. I feel more alert mentally and more engaged with the world. Whilst using HMV has had no real effect on my physical capabilities it has restored my mental vigour and I am able to watch documentaries and films and read books without falling asleep. I can now pursue my goal of life-long learning and follow my interests which has meant a vast improvement in my mental well-being.

My advice to anyone being offered this treatment is to try it despite what reservations they may have. Take time to get accustomed to wearing the mask before you go for a full ‘try-out’. Some people seem to be concerned about the noise of the machine affecting their ability to sleep. In my experience, the machine is virtually silent and the only noise I hear is my breathing. I have found this strangely reassuring as, thanks to the machine, it is regular and rhythmic and I believe, one of the factors which helps me get to sleep so quickly once I am in bed. It is not over-stating the case to say that my life has been transformed since I began using the HMV machine six months ago.