March 2014 and my life was about to change! 48 years old and diagnosed with early Alzheimer’s Disease. I had a feeling something was up, my short-term memory is much to be desired and various other tell-tale signs which I feel are just not right. I have days where I forget easy words and have to think up other words to complete a sentence, which I do not feel is picked up by anyone as yet. I sometimes forget a person’s name for a brief period, a person that I have known for a really long time….it’s like the name has vanished! The other sign is that sometimes a person who I know, for a few seconds I do not even recognise, seriously do not have a clue who they are! Because I have had temporal lobe epilepsy for many years I assumed it was related to that. My Granny on my father’s side had Alzhymer’s so far gone that she did not even recognise my Father in the end.
A memory in my young adult life, that will remain with me forever, was going to visit Granny in frail-care at her old age home and my Father coming out of the home crying. She did not have a clue who he was!
So off I went to a Neurologist (Natanja Naude) and after several tests, MRI blah, blah, blah was told that I am in the early stages of Alzheimer’s and should start taking Donacept immediately, do brain exercises every day …. do my best to delay the inevitable. Was shocked to actually hear it was true, but kept it together as my mother was with me and really did not want to upset her. Well as it turned out I did try and be strong but once I went over it in my head it did not sound so good! We always joke and call it “Old timer’s disease”…. well didn’t sound so funny now! I kept thinking well it’s not cancer, not a death sentence, it’s ok, I’ll be ok! I kept it together for about two hours, and it turned out my Mom was the strong one anyway.
I had a number of tests which I clearly battled through on the memory side. The EEG showed the epilepsy is under control but here’s the kick. The MRI shows my memory part of the brain is much smaller than it should be for someone my age, and Alzheimer’s is on it’s way. I felt the need to collapse in a ball but “I am strong” so I just dropped Mom off and then went to fetch Lee at my sister Jeanine’s house. Lee was coming home from boarding school after six weeks away. Lee my precious “baby girl”.
I stopped outside Jeanine’s house and phoned Jan who kept phoning me to see how it went, and I ignored the calls as I could not tell him. So I thought “I’m OK, I’m fine” and phoned him. Heard his voice …..and that was me. Floodgates opened, tried to get it out and of course my loving caring husband said “It’ll be ok, we’ll work it out together, we’ll fight it!”
So I finish the call and feel better and go in to see my beautiful Lulu. I see my sister and feel anxious and teary, but keep it together. Kiss my niece, nephew and sweet baby girl hello…. feel a tightening in my chest. We laugh, chat and joke. Lee gets her stuff and my Jeanine asks how it went, and oh crap…tears and me again. She is such a special part of my life and I know she feels my pain. We weep together and when Lee comes down we leave. Lee knows something is wrong and I tell her, my baby girl is shocked and hangs on to me all night.
I have read copious amounts of info on the disease and find that most of it is for the care-givers. I therefore decided to write a blog through my journey so that some sort of idea can be given as to what I feel, and how it affects my life, and maybe then those who have also been diagnosed early on in life have an idea of where it will take them. Mostly I write it for ME, in case I need to remember…. and also for my children to read one day to know how blessed I am in my life and hoping that they too will appreciate all the blessings they have along the way.