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Trials are good for you - and for everyone else too!

By John Spencer

Following my wife’s diagnosis of the early onset of Alzheimer’s Disease, and coming to terms with the fact that there was no cure but only a progression of the disease, we looked online to see what research drug companies were doing and if there were any trials taking place that might help with her loss of memory, our own anxiety and in finding a cure or treatment to benefit others. The Southampton University website led us to the Memory Assessment and Research Centre (MARC) who had an answer straight away. They were recruiting for a trial and asked if we would like to come along for preliminary discussions to assess possible suitability to take part in the study trial. Cups of tea or coffee in a comfortable waiting area were available and the atmosphere was relaxed with staff to hand if there were any worries.

From the first telephone call we were treated with compassion, understanding and given every support in making the decision of what we wanted to do next. Standard diagnostic tests confirmed my wife’s Alzheimer’s Disease and there was a vacancy on a study trial using ‘Alzhemed’ (Tamiprosac) that would enable her to continue taking ‘Aricept’ that she had been prescribed by the Royal Bournemouth Hospital. We were given an open time scale over which to reflect, consider, to raise questions or to have further discussions with MARC on whether or not to proceed with a trial. It was emphasised that agreeing to take part also gave the right to withdraw at any time with their continuing support.

Our acceptance, once made, was cathartic! Doing something positive to perhaps help others lifted our spirits through those early stages of awakening, to the reality of Alzheimer’s disease, and did much to restore our strength to move on in life. My wife became very much her old self for a time and we went on to enjoy some good years together.

The study, a double blind trial, initially involved monthly visits over a three month period, to assess my wife’s suitability for the trial and then the monitoring of her condition and wellbeing for a further period of three months after commencing the medication, either a placebo or ‘Alzhemed’, in the form of a daily tablet. These visits to clinic were then extended to 3 monthly intervals with a hot telephone line if there should be any concerns. The tablets came in clearly marked date and time packs sufficient to last until the next clinic appointment. The study trial lasted eighteen months before termination, by the FDA of America, because an earlier study in America had not met the expectations of the drug company. The study protocol, adhered to by MARC, then assured those taking part of a safe withdrawal from the trial. We were naturally disappointed but not knowing whether my wife received the placebo or ‘Alzhemed’ one can only speculate as to the possible efficacy of the medication in slowing the disease.

Throughout the study the MARC clinic and staff were reassuring and hospitable with all consultations and memory tests carried out in private rooms. Some sessions my wife and I were seen separately and at these times she would return to me calm and relaxed and had clearly been treated with every consideration while answering the test questions.

Inspired by my wife’s positive attitude throughout her illness and the ease with which MARC enabled her to fulfil a wish to help others, to feel valuable and to know that her misfortune should not go in vain, I resolved to volunteer for a study trial sometime in the future. During august, 2012, I began a trial into ‘The effect of stress in people with mild memory problems’ (lay title) that involved 4 six monthly memory tests, together with blood samples and saliva samples and finished in March 2014. The staff I met were very friendly, encouraging and supportive. If we are to find solutions to different illnesses we need to do the research to find the way through. Just look at the progress we have made in recent years in Cancer treatment and with other diseases. Raising money is one approach, but the research is what finds the answers and for that we need volunteers. During this period I became widowed and I was so glad to have something positive in my life to think about. It takes only as much time as you wish to give to be involved in a trial so why not give it a go? I am looking for my next opportunity!