In her latest blog post, Carla gives us an update on Bob’s latest adventures as a PSP research participant.
Belated New Year Greetings all, and hope you had a great Christmas.
Just thought we’d update you on Bobs latest part of his journey as a ‘lab rat’ for the NIMROD study. As you know taking part in the research programmes has been very important to Bob and on 16th December we journeyed to Cambridge for the last and final stage of Bobs input into the study.
Considering that it was approximately 10 weeks prior that we undertook the first journey to Cambridge things have changed a little… For stage 1 Bob was able to walk (with guidance and all be it very slowly) but no longer can he manage these types of journeys and distance and therefore we needed to use his wheelchair.
Yet again the most stressful undertaking of this experience was not the scans and giving blood but the use of ‘Network Rail’ … it is so sad that this much needed service for many is so hit and miss!! Highly dependent upon the individual staff member and why is wheel chair space is so limited? And WHY does it need to be alongside the rather ‘sweet’ toilets? !!!
Although it was a very long day, once we reached Cambridge, all the staff members were great: polite, helpful and welcoming. Bob was very tired by the end of the final scan which was 90 minutes in duration but a smile soon returned to his face , when he met Patri.
Patri had asked that we wait after the scan so she could say ‘thank you’ for taking part and get to meet another person taking part in the study. For those of you that haven’t had the chance to meet this passionate researcher , when you get the chance you will understand. Patri’s passion for the NIMROD study is amazing …her energy and commitment and explanations in broken English (Patri is Spanish) really cement the thoughts that taking part is really the right thing to do .
Tiredness did result in Bob having a little challenge with is coat… but the hug and kiss from Patri made things ‘all better’.
Again Network Rail challenges caused the most difficulty: connection assistance on the return journey failed, leaving us at the mercy of some very helpful travellers, who lifted Bob off the train in his chair. Sadly this resulted in damage to the chair making the final stages of the journey home a little more challenging.
So if this was a football match it would read something like NIMROD 1 NETWORK RAIL 0
Next challenge …..getting Bob registered as sight impaired and accessing the support available with that (at the time of writing we have had confirmation of acceptance… assessments and home visits to come).