Dedicated to all those who have gone before us. Let their memory remind us that none of us are here for long. We may as well pull together and make the best of it.

My advice, for what it is worth, is the same for the patient, the carer, the doctor or anyone else. Live every day as if it could be your last. Treat everyone, including yourself, with respect and tolerance. Play to your strengths. Allow for your own limitations and the limitations of others. This is easier if you take care of your health so your body is fit for the adventure. Always have a plan B as those who are fixed on plan A feel the most loss when change occurs.

People with HD (pHD) have proved to me that quality of life has nothing to do with length of life, material wealth or physical ability. They are living-it-large despite illness or maybe because of it. They develop the emotional muscle to deal with the ups and downs of life.

They now need to be protected from those who over medicalize and needlessly medicate emotions for financial gain.

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