This message really resonates with me. Life is an adventure that changes all the time in so many ways. For me ALS/MND has been an ever changing shit show. A constant disappointment , no hope, no promise of tomorrow just the ever present loss of capability. Each day happens with hoops to jump through to get by and all the things I take and do to try and maintain my muscles. I now have carers 7 days a week. They do everything I can’t . I would have no life without them.

I am still sewing but not great at the photo taking part anymore. I will try to get some.

Heading into the Christmas period makes me reflect on what has changed. I don’t walk anymore. I need a hoist for transfers. I spend my day in a comfortable wheelchair that I can’t straighten my legs in, because the company doesn’t have the rights to the program .

It is disgusting that this is not a universal program for all wheelchair users.

My quality of life is dependent upon the care I get and the NDIS responding in reasonable time to my requests for items to meet my needs.

Another thing that I am finding hard , is people when they are talking to me grab my controller on the wheelchair. This is very scary if they touch and it’s on who knows what may happen. If it’s off and they lean on it and break it then I am stranded. It is so annoying, it’s like because I can’t get close they need to lean in , I am not deaf just disabled.

I hope you are doing all you can to live life to the fullest.

Take Care

Sue 🙂