Jenn

New here and trying to understand this lingo . Sound like a good time but wanted to educated a little about these events. Insight appreciated

So happy to find this website, Thank you for the ones that put this together, This is a club NO ONE wants to be in. With that being said no one can relate to you other then a widow or widower , i met Michael in 1997 and we got married June , 29 , 2001. We were that couple that you wouldn't pair us up in a room but when you got to know us , we were perfect for each other. Truly a fierce couple that madly loved each other. We married knowing that Michael had a 50/50 chance of having the SCA1 gene , his Dad died from at the age of 57. Basically the cerebellum ( back of the brain) does not function and the cells died in that part of the brain it doesn't grow . One of the many things about Michael that I love and miss ,miss zest for life. Michael was a true athlete, cyclist , hiker , outsider adventurer, skydiver , swimming ,runner . He respected his body and used it like a well oiled machine. We rolled the dice and had a hell of a ride, the onset of SCA1 ( spinocerebellar )ataxia is early 30's . Michael finally had the DNA test and bingo he had the gene . It shook us for a few weeks and we said F*#% it lets live it up , we tried for 10 years to get pregnant . What a blessing in 2011 our Zoe was born . We truly feel that Zoe will be healthy and so blessed to live 10 year to the fullest as a couple. And able to the bes parents and team for our daughter . Watching your best friend slowly loose his freedom and needing to use a cane at 40 and no longer be able to work or drive . Michael did take care of our Zoe from birth to the age of 3 while I worked 60+hours to make ends meet . As Zoe was getting more independent , Michael was getting more dependent on myself as his caretaker . With being " young and married " we did not qualify for help in the home , insurance denied denied , denied . March 15,2018 the wheels came off the bus . Before this date Michael was home and able to function , feed himself and get around with a walker. He had a mania episode from one of his medications that he was one for years, 3 months of hospital and acute rehab , Michael finally came home 6/27/19 . At this point his pneumonia sand swallowing was such a concern , he was a 1: 1. At this point , needed to be assisted for everything , and could not be left alone. Thank goodness I am teachers and had the summer off to care for him . Still no help at home , VNA a few days a week, luckily . My sister paid for Zoe to go camp so she didn't have to watch her Dad decline quickly . 3 ambulance trips to the hospital, the pneumonia was never truly clearing and abrasions were getting worse , was our summer. Sept 1 I brought him into MGH he could stand the ride in finally . Thinking a g tube surgery, but 2 days later on life support for 5 days to help clear the pnueamonia and give his body rest . 10 hours breathing on his own , I got the call he was dying and he prob wouldn't' make it for 30 more minutes. Michael lasted 6 days , in that time Zoe had a birthday , I didn't want him to die on her birthday . Michael didn't either, He died on the 17th @ 12:05 am while I was holding his hand. I never left his side I those 6 days , his heart was so strong , he just turned 46 a month before , heart breaking to watch his fear and to let go . We have NO regrets and feel so lucky to have those feelings and moments I cherish . We both miss him terribly , 6 month and it's starting to feel final .