So when you’re in, you’re in, and being in requires a lot of paperwork and another diary in our ever manic household to sync and run! We were invited along to our first clinical trial appointment for more bloods and details of the trial schedule. It is very clear why this trial has to be with early to mid stage HD patients: the schedule is a very tight programme of blood tests, MRI scans and lumber punctures, all before we even get to the first lot of dosing.
During this first bit my hubby had to have an MRI completed in a different city. It was quite nostalgic for us to go back there as I had lived there during my university years; it was lovely to remember those nights of being young and completely free. The first MRI took around x4 attempts for my hubby to get right, his constant uncontrolled movements made it almost impossible for him to stay still. Usually they are quite subtle mostly but the MRIs require precision and stillness and he found this rather difficult; either way he made it through this bit and the next bit was the dosing!
So the trial is what they call double blind. Out of the 4 participants on this phase 3 have ‘the real stuff’ and 1 has the placebo, neither the participant nor the medical team know if they have the real stuff or the placebo..
75% chance of the good stuff though, good odds right??
I guess my hubby and I really do not know what to expect long or short term from this. We have had plenty of conversations with the research nurse Sarah who works for enrol, whom I have to say out of all of them I have become particularly fond of. She is a very experienced straight talking nurse who is in the midst of retiring and her frank ways are something which I appreciate greatly. My favourite conversations are the ones where she honestly tells me "now this is not a cure, your consultant is not Jesus" and rightly so. The grounding of expectations is so critical as we are still living and continue to live under the veil of precautionary hope.
During July, the first dose of either ‘the real stuff or placebo’ went in via lumber puncture; it required a 24 hr observation of bloods and neuro testing... and then we wait.
If I am honest at this point I’m not sure I’m expecting change until after all the doses, but then we really don’t know so many things, the only thing we have to cling on to is the hope.
However, slowly just so slowly in the blink of an eye, so gently you could almost miss it, like catching a gentle breeze on a warm summer's day, I thought I noted change. It was not immediate and at first I wasn’t sure I was just wishing it to be so, but there in front of us we had witnessed change. At first it was energy that was beginning to come back. Chronic fatigue has been the absolute factor which has knocked my loving energetic husband off his feet. I would say at the 2 weeks post dose mark, this has been a noted improved factor and his speech is definitely clearer. Those movements now that have been feeding my anxiety have softened and maybe just maybe I begin to start to believe in the possibility that we are actually on ‘the real stuff’ AND maybe just maybe it might be working. Now I'm sure you're thinking am I just wishing/ wanting this? However, over the last 4 weeks I have realised that I am not. One clear example: post treatment my hubby has been back for his MRI and the lady who scanned him who did the last scan noted that it was so difficult to get the scan last time, this time x4 scans completed straight away, less movement noted. Today my husband got up and walked to work approx a mile, worked all day and walked home!!! His friends have commented that his speech is also clearer and I have to say I quite agree - even my neighbour has noticed!!
Surely it can’t just be me, hoping and wishing and praying?!?! It’s been a very different and bizarre experience for me. You see, my mother dying of secondary MS in my twenties, my work (nursing patients with long term conditions) life has shown me time and time again, the best chance and hope we can all muster up out of all of this is in the small moments of a good day or a good conversation before slipping back into the black abyss of a spiralling life with little hope or regard for those supporting or on looking. This is particularly true of a Huntington’s diagnosis as the outlook is of such bleak hope and circumstance. For the first time in my life it’s as if the clouds are beginning to part and a beautiful beam of light, freed of this burden, has started to shine through. My mother always spoke of hope as guide, a start of newer happier beginnings and right now I’m beginning to believe in that little beam of light.
This post is dedicated to all of those HD patients, families and carers and the most wonderful teams of healthcare professionals who dedicate their lives for us. We are so truly thankful.
Surely it can’t just be me, hoping and wishing and praying?!?! It’s been a very different and bizarre experience for me. You see, my mother dying of secondary MS in my twenties, my work (nursing patients with long term conditions) life has shown me time and time again, the best chance and hope we can all muster up out of all of this is in the small moments of a good day or a good conversation before slipping back into the black abyss of a spiralling life with little hope or regard for those supporting or on looking. This is particularly true of a Huntington’s diagnosis as the outlook is of such bleak hope and circumstance. For the first time in my life it’s as if the clouds are beginning to part and a beautiful beam of light, freed of this burden, has started to shine through. My mother always spoke of hope as guide, a start of newer happier beginnings and right now I’m beginning to believe in that little beam of light.
This post is dedicated to all of those HD patients, families and carers and the most wonderful teams of healthcare professionals who dedicate their lives for us. We are so truly thankful.
