Why I Fear The Doctor More Than The Disease

I have great regard for most doctors. Many are willing to go above and beyond the call of duty, work way too hard and are not good at taking their own advice for their own welfare. Despite that genuine regard I can honestly say I now fear the doctor more than the disease.

I have worked for and with families living with Huntington’s Disease (HD) for over 20 years. I now feel obliged to write some of what may be useful to them. Outsiders seem to want black and white sound bites despite the fact that a long term and complex disorder deserves more time and thought. I have decided to give myself the next year to write up the reasons why families protect themselves by avoiding doctors. This is important now as the research money is spent writing what the doctor knows. What if the doctor just knows 5% because they rarely meet patients? Who describes the other 95% of the reality and ability of people with Huntington's Disease. I have set up this website so that you can email me the questions you want asked and the answers you want questioned. I ask that HD families work to let scientists know that, in the words of Einstein, not everything that can be counted counts and not everything that counts can be counted.

What little is written about HD is often outdated and mostly irrelevant to the modern family. Families are forced to bypass the expectation of the doctor and often have to help them rather than the other way around. Others are not willing to play that game and just avoid hospitals and doctors because it tends to be a difficult and pointless experience.

HD is usually triggered in middle age by a defective gene. It can change mood, memory and/or movement. Mood and memory changes can be most difficult for families yet science seems preoccupied with movement. Every emotion can show more in someone with a movement disorder. This is often misread. They can look flustered. Some people (usually the nasty sort who harried them) call their discomfort a behavioural problem. That can be cured by education and understanding. Outbursts, in my experience, are usually a burst of self defense.

This site gives you a short introduction to the idea so you can add what you think is required to reduce the misunderstandings. The dedication is intended to remind us that this is not an us versus them situation. The sound bites are for those who are unwilling or unable to give the time required to understand this complex disorder. The job specification highlights the skills required by those dismissed as unemployed. They are gainfully employed and should, in my view, be allowed to train for and take pride in their job. The table is the short version of what families have reported to me. Let me know if you think it reflects the truth or if you have anything else to add. The glossary of non medical terms can tell a lot about humour and other useful coping strategies.

There are a million and one reasons why now is not the best time for me to produce this document (whatever it turns out to be) but all are outweighed by the possibility that something I have learned can help even one patient who is now misdiagnosed, mistreated, misrepresented or misunderstood. I feel more obliged than entitled to write it but I trust the reader to decide if it is worthwhile.

I invite people with the disease and those at risk to send me their views. I can meet them if they are unable to get their point across by email. There are other forums for the carer, the doctor and others.

Let me know what you think needs to be known about Huntington's Disease.

Thanks for your interest,