I submit this letter to mark MND Awareness Week, from Sunday 20 to Saturday 27 June 2010.
My name is David Yates; I am a retired medical GP. I have advanced motor neurone disease (MND). I cannot speak and I am totally dependent on others to stay alive. Retrospectively, my MND started in March 2004. I had problems with bilateral ankle swelling over the summer of 2006, a known consequence of MND. I then developed atrial fibrillation and right heart failure—complete with flaky, unhealthy skin, from head to my now-purple legs and feet—as a consequence of progressive MND. (I had no cardiac predisposing factors whatsoever.) I have required medication since then, which has greatly restricted my life.
I totally accept and respect the advice from my neurologist—of international repute in the MND field—was statistically and practically correct, when he reassured me that there was no hurry to introduce Bilevel Inspiratory Positive Air Pressure (BiPAP) overnight respirator. However, I regret that I did not heed the advice of the respiratory physician to do so. BiPAP inflates my lungs, then allows them to deflate. The use of BiPAP—especially overnight—rests the diaphragm, by enabling breathing to occur without effort. Studies show that those who use it have an improved quality of life.
My medical opinion is that BiPAP should be introduced earlier. The neurologist told me: “You may be interested to know that a study is ongoing to determine whether institution of BiPAP earlier improves outcome in terms of survival, not just quality of life. Traditionally BiPAP is introduced when FVC falls to 50% of the predicted value but this study will compare survival and QOL in people started at 85% with those started at 50%. Your own experience suggests that we may be waiting too long.”
Presuming you are not claustrophobic, overnight wearing of the mask is not without problems, especially with the eventual loss of facial muscle bulk and fat. If you have problems with a standard mask, try the Fisher & Paykel FORMA FlexiFit Full Face one.
Choking is one of the first symptoms that MND people will experience. It is very uncomfortable—complete with a feeling of impending doom—but rarely dangerous. The laryngeal reflexes are so exaggerated, that any food or sputum is vigorously expelled, to avoid entry into the lungs. Eventually, people with MND will need nutrition by drip via PEG (Percutaneous Endoscopic Gastrostotomy, a tube endoscopically inserted through the abdominal wall, into the stomach).
I've coped with not eating, by modifying one of the central foundations of Alcoholics Anonymous; that oral food is not good for me. This enables me to enjoy watching Rick Stein etc, by focussing on the place of food—and its variations—in different cultures and not the food itself. I can't feel hungry if I can't actually proceed to eat a juicy steak, or delicious Asian or Middle Eastern meal.
I'm interested to hear at firstname.lastname@example.org if other people with MND also don't feel hungry or thirsty. For all those potential helpers out there, please remember that the full-time family carer might be alone. They have to do the jobs that the person with MND once did, plus their own jobs—around the house and property—plus actually care for the patient, while finding time, to address their own needs.
Even after some years with MND, it is still difficult to accept that I can't physically help at all. Any external help is always gratefully appreciated. About 15% of people with MND develop significant impaired cognition. Intact cognition enables us to "see" and "hear" a word, yet it's unintelligible, when we try to speak.
People with MND consider it very demeaning to be addressed in the third person, through a carer. Please speak to them as if there's nothing wrong and they'll respond in some way. People with MND might also have Bulbar Palsy (BP), with loss of control of emotions. Don't be embarrassed if they do cry or laugh. Ignore an episode and it will quickly pass.
This is a list of suggestions for people with MND:
- Try to retain good humour and a positive attitude as much as possible and set goals. While a scientifically proven cure is currently not available, you never know when the treatment breakthrough will occur. The dilemma arises when you become concerned about the emotional and physical effects—on your family—of 24/7 care, in order to keep you alive. Resolution is usually reached, with the family’s reassurance that they can do it and if it's still a great pleasure for you to wake each morning, to see your loved ones.
- Maintain sensible passive stretching exercises, to prevent contracture and deformities. Remember that there is decreasing joint protection of the joint by the muscles, as MND progresses, so don't overdo the stretching.
- If you use a computer, maintain a master record of common things repeated to others in emails, to save duplication of typing.
- Remember, many adjustments can be made to your mobility chair, including memory cushions, to improve your comfort.
I hope that I have given you an objective insight into the lives of people—and their families—who are affected by MND.
Retired Medical GP
Whitianga (formerly Hastings)