
Originally Posted by
Maidinkent58
Hi all, I was diagnosed with MND September 21st 2018, after 20 months of a living hell. In 2016 I noticed a very weak left arm, which then lead to nocturnal muscle cramps in both calf muscles for around a year, that was unbelievable agony which always left me in tears of despair. Then came the falls, SEVENTEEN in all, many injuries as a result, along with total embarrassment, loss of pride, freedom & independence !! I manage somehow to remain positive 90% of the time, the other 10% is filled with frustration, disappointment, floods of tears, wanting to go to sleep & not wake up, anger at why this ghastly disease came to me. I have always enjoyed my freedom & independence, & travelling the world with my husband, but I never had any intentions of my husband being my carer. At the moment I am still mobile (albeit slowly) with the aid of my walking frame, & I can still speak, also slowly. I have had to dismiss all of my life's hobbies, I can no longer write, which I have always loved, I can no longer use scissors so crafting has had to be left, & cooking which has always been a passion is definitely a no no. I occupy myself daily by typing (also slowly) my memoirs on the computer. The day after diagnosis I documented all instructions for end of life care & beyond, also made a will, & Power of Attorney, just in case I DID lose my voice. I left no stone unturned, even contacting funeral directors. I guess it helped me cope with diagnosis, & of these were essential topics to be covered. I'm glad I did because my family will not have to 'wonder' or 'worry' what I wanted, it is documented for all to see.