[Avril]

Husband was diagnosed in December , though we had already guessed that it was Parkinson’s . He’s had CLL (Leukaemia) for nine years which has been well under control for last 3 years with Ibrutinib .  Our problem is when he gets new symptoms we don’t know if we are dealing with the leukaemia or the Parkinson’s.  The Parkinson drugs have been a bit hit and miss having tried patches and Rasagiline tablets which left him very spaced out and “muzzy headed”. He’s now on Sinemet but we haven’t seen much improvement, maybe we just are not giving the treatments long enough to work?.

After being so lucky with the Ibrutinib I think we were expecting the Parkinson drugs to also be “wonder drugs” and are both disappointed with the back up help from the Parkinson nurse, it’s been a case of us finding alternative treatments and asking if we can try them! My daughter suggested this forum so we don’t feel so alone and unsupported.