Thank You

I wanted to say thank you to everyone who thoughtfully sent me a message. The warmth and support I felt in receiving so many touching messages truly lifted my spirits. I appreciate you all taking the time to write and was deeply touched by the flood of uplifting words of encouragement.

I am sitting here this morning, hooked up to my i.v. treatment for Gaucher disease. It's surprising how chilly one can feel having cold fluids running through one's veins whilst trying to sit still for an hour and a half. It's a shame the medication can't be warmed up a little before administering it, but that would destroy the delicate enzyme contained in the medicine. I awoke this morning, my body stiff and rigid from the night, almost unable to get out of bed, I painfully got dressed and ready for the nurse to arrive. Once the early morning rigidity has declined a little, ridiculously I find it impossible to sit still. It's swings and roundabouts - there is no happy medium. Parkinson's makes me want to get up from my seat and yet Gaucher bone pains, dictate me to sit still. I just can't win.

I'm often asked, which disease is worse? I would have to say on a daily basis, Parkinson's wins hands down for it never ceases, and keeps up a constant battery of unpleasant irritating symptoms that can drive one to distraction. Although Gaucher disease is kept pretty much in check now that "enzyme replacement therapy" is available, when chronic bone pain kicks in, resulting in an AVN (Avascular Necrosis), meaning oxygen is not reaching a joint, quite often a hip, the bone begins to literally die. Unless you have experienced this chronic unbearable pain that can last from a couple of days up till a few weeks, it is hard to imagine, for the pain is like no other and makes childbirth feel like a walk in the park.