Wife of Coventry Parkinson's sufferer shares her heartache in a letter to the NHS - Continued

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  the NHS
  Eamonn’s wife, Carol, wrote this heartfelt letter to the Coventry and Rugby Clinical Commissioning Group over her husband’s case:
  
  

  

  
  
  
  

  “Our lives with Parkinson’s Disease is gradually getting worse and Duodopa was a beacon in the darkness. To be refused funding is inhuman.
  My husband, Eamonn, is in bed between 9 and 10pm every night because his medication stops working.
  His sleep pattern is disturbed. He needs to pass water several times a night and as he cannot get out of bed, I am required to assist, which disturbs my night’s sleep also.
  When he needs to use the toilet, I have to physically pull him from his bed, put him in a wheelchair, push him along the landing to the bathroom, assist where necessary, then take him back to bed. This is a mammoth task and is taking its toll on both of us.
  His first medication is at 5am after I dress him. Once on the move, Eamonn manages to go downstairs for his breakfast, which I have prepared the night before.
  I can then usually manage 3 hours undisturbed sleep.
  Eamonn was a very active person pre-Parkinson’s – playing squash, badminton, swimming daily and cycling.
  He was always very fit. Being unable to participate in any of these pastimes has made a great change to his life.
  As a family we had caravan holidays, trips abroad and walking and rambling holidays in the country was a big favourite.
  We now manage short shopping trips where Eamonn always has to use a four-wheel walker or a mobility scooter.
  We have had holidays in special accommodation, with disabled facilities for a few days at a time. But evenings out are a thing of the past.
  Balance is a great worry as Eamonn falls constantly which has resulted in needing an A&E visit and treatment on more than one occasion.
  It was due to this problem that DBS was ruled out and Apomorphine did not work.
  With the possibility of a new drug, Duodopa, there was hope of change and out lives possibly having some normality returned.
  Where do we go from here?"
  
  
  05:45, 23 February 2015
• By Antonia http://health.einnews.com/article/251319996/VzlNnORM32ufhWRp