Reaching Week 22

Since last Sunday's post, some of you have kindly been in touch about my seriously delayed injections. (PLEASE SKIP THIS if you are not following this saga. And frankly this does seem very personal in light of Covid19's global repercussions). Ever since 1987 when my dystonia disease was diagnosed,and I was included in the first clinical trials at the National Neurological Hospital for injecting botulinum straight into the offending neck muscles, my life has been marked by injections every 12 weeks. This pattern has sent me plodding regularly into clinics in London, Chicago and Cambridge.  My annual diary has been scheduled accordingly.

What happens if I have missed by a week or two?  I'm in trouble! By the twelfth week I have often felt the beginnings of pain and tautness in my neck with restricted movement.  However, my Cambridge consultant has been experimenting. As I have grown older (she noticed that!) she is lengthening the time between injections from 12 weeks to 16 weeks.  This has happened now three times and though there was some loss of movement, and I certainly needed injections at 16 weeks, we both rejoice at successfully going longer.

But, alas, my consultant became ill at the beginning of March with the clinic cancelled until further notice!  16 weeks had already seemed a stretch....next week I will enter Week 22. Yet. it has been an extraordinary time of waiting because my expected deterioration has not happened to any degree.  I was expecting much pain with twisting by now!  It's down to much prayer support and perhaps a coincidental Parkinson drug the sleep clinic has put me onto.  Maybe one of God's incidences! I cannot explain it but I am so grateful and, of course, I am hoping the clinic will reopen very soon.  Praying friends please keep on adding me to your long lists.