Continuing my Journey, I went to my GP and explained, we talked about what had been happening and she decided to send me for some blood tests, one of which was to check my Thyroid function and to back a week later.
When I went back my blood and Thyroid were OK, she asked about any problems in the last week . Then my GP did a Mini Mental State Exam, which I scored lower than expected and she decided to refer me to a Neurologist and asked me to keep a diary.
In September, I went to see my Neurologist at the Hallamshire Hospital. She asked me about what had been happening and I explained that it wasn’t normal for me. I showed her my diary, it had started out being written pretty much daily but as time went on I began to forget to do it. I then had a series of cognitive tests and questionnaires.
The Neurologist said she was leaning towards Alzheimer’s and Frontotemporal Dementia but I would need further testing to confirm.
November brought an MRI scan and a follow up appointment with the news that there were changes and appointments for a SPECT Scan and to see a NeuroPsychologist.
In January I had 4 appointments with the NeuroPsychologist, the first three being a battery of tests over 90 minutes each time and the 4th being a discussion of the results showing Early Onset Alzheimer’s and possible Frontotemporal Dementia (FTD). It was explained that I would have a further series of tests next year to confirm the FTD diagnosis.
In February I had the SPECT Scan which confirmed Early Onset Alzheimer’s and FTD but I would still need the Neuropsychologist testing to confirm FTD next year.
On 24th March 2017, my wife and I went to see my Neurologist. I had the diagnosis of Alzheimer’s and Frontotemporal Dementia, a couple of leaflets, some information about research and she suggested I put my affairs in order.
As we walked out of her room I felt like I walked off a cliff into a deep dark hole.
After so much time and technology invested in giving you a diagnosis, Howard, it is heartbreaking to imagine how it must have felt leaving that room. It’s a shocking situation and it needs to change.
It’s a sad situation, my Neurologist has tried to introduce post-diagnosis support but the local CCG cuts the funding, I think it’s referred to as prescribed disengagement.