Henry's interview
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How did all start?
My symptoms started with slurred speech and inability to chew and swallow.
Do you already have a diagnosis? How long did it take you to get it?
Yes, I was fortunate to have a GP that was familiar with the disease. She picked up on it in my second visit after the onset of symptoms
For what medical specialties have you been treated? What has been the most useful specialty for your?
I see a Neurologist for this disease
What has been the most useful thing for you so far?
I combination of medications prescribed by my Neurologist
What have been your biggest difficulties?
Chewing, swallowing, loss of muscle tone and chronic fatigue
How has your social and family environment reacted? Have your social or family relationships changed?
My family and friends who know me well have been very supportive. At least for the first few months, I was not able to do much socially
What things have you stopped doing?
I hav not stopped anything, but am limited by my stamina to do anything physical
What do you think about the future?
With help from my Neurologist and family, I plan to continue a fairly normal life with limitations of fatigue and my own stamina.
So far, which years have been the best years in your life? What have you done during them?
I am continuing to travel, play golf and garden. I won’t even attempt anything strenuous
What would you like to do if you didn’t have your condition?
More of the same
If you had to describe your life in a sentence, what would it be?
It has been an adventure
Finally, what advice would you give to a person in a similar situation?
Find a good medical team and stay in contact and above all, do not be afraid to ask questions and let them know if something is not right.
