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Messages - Mike d

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Hello, I live on the East Coast of Essex and I am retired and would like to be involved someway in the Awareness month. I am not the most outgoing of personalities, but would like to be involved in this as it directly affects me.
       Kind Regards,
                           Mike Day

Introduce yourself / Hello
« on: January 02, 2018, 09:10:17 PM »
My name is Mike and I have had ET in my hands for the last 20 years plus. I am 67 years old and in reasonably good health apart from the tremor. Back in the mid 90's I saw a Professor Finlay at the Romford Hospital who at the time was quite a leading figure in the treatment of tremors. I was prescribed Primadone which I commenced at a quarter tablet and subsequently increased the strength. Although it did marginally reduce my tremor I stopped taking it because the side effects made me feel so spaced out and I needed to work. Propranolol seemed to do nothing for the tremor but again made me feel very light headed and sleepy and again I stopped taking them.
  In 2015 during a routine visit to my GP I brought up the subject of my tremor and was referred to a Neurologist at Colchester Hospital and was again recommended to take Primadone or Propranolol. When I explained the effects they had on me, I was told it was them or nothing.
  The tremor is now deteriorating to the effect that I cannot with confidence go out alone, my wife having to carry drinks etc. to a table and cutting and eating food is now becoming a chore.
  I approached my GP about the Ultrasonic treatment that was done at the London Hospital, but 9 months on and I am still waiting for an acknowledgement. The thought of invasive surgery leaves me very cold!
  In the grand scheme of things, having shaky hands seems a very small issue but the frustration when trying to do simple day to day tasks is immense.
  As you may gather I am having a bad day.

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