So Mr W wasn't keen on feeling so sedated. We tried varying other medications but it became clear that it was the trial drug that was having this side effect. When Mr W couldn't find the energy to get up and get some lunch we both decided something had to give..so he stopped taking the trial drug.
Gradually he began to come back to life. By the end of the week he actually left the house. Two weeks after stopping taking the med's he was pretty much back to normal. Or, HD normal.
Last week we went up to London for him to get checked over...to make sure there were no ill effects from the medication. Whenever we go up to London my tummy goes haywire. I have always been a jittery tummy kind of person and I guess going to London forces me acknowledge that Mr W is not well (the rest of the time I like to pretend he just walks a bit funny). Anyway, we dropped the children off at my parents..as soon as we get to the end of their road I get that urgent kind of need the toilet feeling. So I drive quickly to the station. I inform Mr W how I am feeling (he is used to me oversharing!) and that as soon as we get to the station I need the toilet. We buy our tickets and I plan my emergency route to the toilet. Mr W decides that now is a great time to check out the times of the trains. In exasperation I fling his ticket at him and make a run for it. He then proceeds to shout to me, as I am running away, that 'If I do my poo in the next five minutes we can catch the 8.52' . I run red faced down the platform....
Later, feeling much more comfortable, we arrive at UCL. Now, I hate hospitals and fortunately the trial is being undertaken at the research facility behind the hospital. I do however have to walk through the reception area of the hospital. I try not to breath (germs!) or look (ill people) as I rush through. As soon as we get to the Research Centre I relax. The team there are so lovely. Really relaxed (but professional) and most importantly they treat Mr W like a normal person who just happens to have HD. A plus in my book and sadly this can be rare. Now, like others, I have done my bit of NHS bashing. There are aspects I hate about it. The jobsworth, the poor management, the grunting receptionist and the doctors who are so far up their own arses that they have lost all ability to communicate with patients. But the team at Queens Square are amazing and I seriously do not know where we would be without them. They have totally made the Clinical Trial an enjoyable experience for both of us.
So the good news is that Mr W has no detrimental effects from taking the drug. We have not delayed the trial at all, as I was worried we had. This side effect is useful information for the trial. No one else as yet has reported this side effect..which is good news for the HD Community. Just because Mr W had this side effect it does not mean that the drug will have that effect in others. Part of this trial is assessing the optimum dosage. Perhaps Mr W was on a high dose. It is also felt, that as he seemed to be unique in this side effect, that perhaps it was interacting with other meds he is taking. So, all in all the hope for this drug is still there. Other good news is that they have recruited to this trial really quickly. This is good news if the drug works as the sooner its completed the sooner it becomes available.
So, life as we knew it, resumes in our household. The other exciting news is that Mr W, being a blue badge holder is exempt from the hose pipe ban. So, for a nominal fee I can rent him out to water your garden!
