A conflict of ideas on FB in the past few days has shocked me back into some activity.
I must admit that all my time in the past few months has been family orientated and a lack of enthusiasm to any thing else. I have had the opportunity to be a full time grand father – something that Jill would have done anything for, to spend time with her grand children and see them grow as I have done. Riley my eldest (5) mentions his Grandma and we have little talks about what she would think about his swimming , playing hockey and reading. He remembers little things – riding on the foot pads of her wheel chair . Lucas (3) was just born and Jill got to hold him . I still show him Jill’s photo and I say this is Grandma – he now says the image on my iPad is Grandma. She would love to be here and see them in their Football gear – she would have said they should be Melbourne ( AFL) not Essendon.
Seeing a song by Josh Groban “To where you are”on U Tube made me think more about what I have lost It had been posted on MSA Australia & NewZealand FB page by a friend from UK who lost her husband 12 months ago
I also found Jill’s jewellery which I had hidden 3 years ago – well hidden I don’t even remember putting them where I found them. I wanted to get the family to share them rather than sit in a hidden location – Jill always wanted them to be used . I have been very upset at not remembering where they were – even contemplating going to the police to report there disappearance. That would have been embarrassing when they actually turned up. My neighbour and family keep saying they will turn up – stop worrying.
When Jill died I thought there was couple of things I would like to do to keep her memory alive for me and the family – to help others suffering from the is horrible disease. We had set up a gym ( Jillsgym) in our garage and my thought was to donate the equipment to other MSA patients – the problem was to relocate the equipment into a space big enough to handle it. I had built a large carport to handle the car and caravan – leaving the garage free. It is still used ,my neighbour uses it regularly and her husband is about to have a knee replacement so it will be quite busy . Jill would have been annoyed that I was not using it more .
I would like to write a book on Jills journey through MSA – fortunately I wrote in this blog regularly so I have the information but probably lack the expertise. I know there were some things that I was not allowed to write about as Jill thought they were to personnel or embarrassing. Jill always ( as a teacher) checked what I had written for spelling and grammar.
I am now at the point I would like to establish “JILLSGYM” as a MSA awareness and Fundraising entity. I am not sure how this can be done. I feel it is important that Australia be given the opportunity to donate to an actual MSA fund not some thing where we are under the umbrella of another organisation – there fore not knowing where your donation will end up.
I am heading north to Hervey Bay Queensland for some warmth with my family and while away will visit a few MSA patients I haven’t seen for a couple of years.
See you soon on the net
What can I say, what an amazing story. So sorry to read about your beautiful wife Jill, she certainly sounds like an incredible woman. The support of your family is a direct reflection of the kind of marriage you and your wife had, I commend you.
I will keep this short as I’m am not sure when you will read it. My wonderful husband Bill was diagnosed with MSA August 09. He is incredibly brave and an inspiration to all that know him, we have had no contact with anyone else with this disease, Bill is a very private person and I have supported his wishes.
Just lately I have felt the urge to reach out to someone that would understand our situation. I would be keen to hear if you know of anyone here on the Sunshine Coast with MSA. Bill has been bed ridden for over 3 & 1/2yrs now, he is unable to move or speak, he communicates with his eyes and he has the most beautiful smile, it melts my heart every time.
Look forward to hearing from you.