Hi Cathy. Welcome to our forum although I am sorry to hear about your friend and her brother. You landed in a good spot- we have lots of members with MND and lots of caregivers and quite a few friends like yourself who want to learn and help. Glad you decided to join us. Cindy
Hi CindyM. Thankyou so much for your welcoming post. I was very nervous about joining a support group. While I am glad that there are more people out there that understand the devastating effects MND has on sufferers, families, caregivers and friends alike. I am saddened and humbled to know that so many poeple are suffering at all.
In my experience losing one dear family friend that was only 33 yrs and a father of 2 was enough sadness for us all. But now to find that my best friend has now also been diagnosed it is too much to bare. The whole family is like another part of my family.
Then you have the added feelings of what am I complaining for. The effect this all has on me is minimal compared to those more directly involved. I love them all though and cant stand that we have to watch this take hold again.
Thankyou again CindyM I think I may have come to the right place.
Thanks Al, I have been gradually getting through some more posts. Having 3 children limits my time on here somewhat. There are so many people on here. While I am comforted by the fact that other people know what my friend and her family and close friends are going through I am also truly saddened that this cruel disease is affecting so many peoples lives. Having lost my friends brother also another dear loved one of mine and my families to MND after a short time but long battle of 15 months I am really scared that this time it will take its toll on their parents and Garrys children.(Their parents are like another set of parents to me and Julee is like a big sister and her Brother and I had an un requited love for one another in our teen years.) It really would be great to find someone on the outside to talk to as I feel as though I would be burdenning anyone actually suffering from the disease with quiet insignificant worries compared to what they themselves are facing. I guess to be honest this is also how I feel when I see my friend. Its like "hey yeah I am really sad and scared but what have I got to worry about in comparison to Julee facing this head on." I want to be everything I can be to her and for her and not add to her worries.
Well it sounds like you're doing a fine job so far for her. Just being a friend and not abandoning her as some friends might do, either from fear or just not knowing to say to her. Feel free to ask what you want to know. Someone will answer. Maybe a patient or caregiver or a friend. Answers are free here.