…23rd March 2013
I have a call from the nurse at the memory clinic, but she starts with the fact that I live out of the area and they will refer me to somewhere nearer. This is a bit of a shock as both SP and Prof L were ok with the fact of where I am, especially as they messed up so badly by forgetting me for two years before arranging for the scans and assessments needed. I feel both upset and angry, not only have I run out of medication, she has not yet found out whether they can supply lactose free. She gave me a response that the pharmacy had to contact the manufacturers to find out the ingredients. I told her that there is a good website that lists all the UK manufacturers of generic medication and that Rivastigmene hard capsule, is the only one that does not have lactose as a filler.
She was also supposed to get me the paperwork for donating my brain for research. This may not be important to her but it is very important to me. I have now become ‘throw away’, a name on a record file that is ‘out of area’ and therefore not budgeted for, passing the cost to a different health authority. I fear moving hospitals, another set of doctors, and nurses and buildings, and departments.
I have been told not to continue with the Rivastigmene patches, (cholinesterase inhibitor). I only have one patch left anyway. Now what, will my memory decline worse than before? All of the instructions and information states not to stop medication, they indicate that the fog may come back with vengeance.
The last patch – today I took off yesterday’s patch, put it back in the packet, and handed the box with it and the unused one to Mr Hs to burn. The patches must be burned or handed to a pharmacy to dispose of. I will not miss the itching of the patches which have given me a bad reaction to them. At Hydrotherapy this week, the therapist asked me if I had been paintballing due to being covered in angry red marks the size of a two pence piece. Hopefully these will now stop itching and will fade in time.