Expert Q&A: Rare dementias - Tues 3 March, 3-4pm
Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.
You can either post your question >here< or email them to us at firstname.lastname@example.org and we'll be happy to ask them on your behalf.
Hi Benny.Thanks for your support and advise but also thanks for starting this thread Officer I have never been able to express the way I feel until reading your post and the replies it attracted. Afte alot of thinking over the weekend I feel like I am getting closer to sharing my concerns just dont know who that might be with at this stage, but I am toying with the idea of printing my posts and replies to show the doc as well. It seems to be the most overwhelming thing to tell anybody all that needs to be said, and then the anxiety starts and takes over and thats the end of that until next time so thanx TP'ers, think I'm almost there!!!
Hi Office I was diagnosed with Alzheimer’s but after two PET brain scans was diagnosed with fronto-temporal-dementia and I can recognize all the problems your facing, my employers wanted me out It took months of meetings with my employers, my O.T , Unison, and the County Occupational Health department , but because dementia was covered under the D,D,A the couldn’t make me redundant ok I admit it was a long hard battle but I carried on working for eight years and only retired then because I was 65 unfortunately if the word dementia is attached to you medical records the stigma is you have a mental illness and the dictionary say’s Mental Illness - informal insaneThe slow initial progress of my front temporal dementia before diagnosis had changed my character to the degree that it cost me my employment, and my family. Nobody recognized the changes for what they they were. I now realize that the changes affecting me had totally changed me in all ways from unable to take verbal instruction to becoming sexually aggressive. Decision making switched itself on, and off at will. This had a huge effect as this capability was very important in my then employment. In my relationship, well after many years of a good marriage I threw it away by becoming aggressive, angry, basically a bad egg.
These changes were so slow both my employers, and my spouse could not in any realize what was going on. And in the end I was left on my own as I was no longer fit for service, and no longer fit to be a family member.
It took a very good friend from my past who could see the changes better because of the time lapse between seeing me. She got the ball rolling, and within three months I had a mri scan, and a diagnosis. The rest is history. The point I am trying to put across is that nobody put the changes to a condition, but to me going off the rails. Nobody thought the changes in my makeup had a history behind them.My employers thought I had lost the plot, and my spouse just thought I had gone off the rails. I may have reasons, but no excuses for my actions, but nobody thought that the changes in my caricature had a reason. My employers of 22 years forced me out, and my marriage of 15 years was blown away.
The point is that nobody understood what was going on, and I just did not care. Only now can I reform my life only because of all the help I have received from the medics, and the Alzheimer,s Society. These conditions need to be made general Knowledge. This would make for an earlier diagnosis, but a better understanding by the rest of the world that would keep families together,and may a place in the world for us all.