MS SHG--Initials that I have used now for 9 years and still have to explain to others--Multiple Sclerosis Self-Help Group. I understand why not too many know what MS SHG means. Until you need us you probably skip over anything about a SHG but two times a month we have meetings in Shiawassee County here in Michigan-the first and third Tuesday of each month.
These days bring me face to face with MS. I am the co-leader of this group and plan the meetings because the other co-leader has been having a rough time for the last 2 years. I enjoy this task most weeks but this is one of those weeks that I am having a tough time with the agenda--what to share? what to have for a discussion topic? will I do what I feel is a great agenda only to have others need something different than what I have planned? if I decide not to do an agenda with a topic will we just sit and stare at each other (yes, that has happened but not too often). Decisions, decisions, decisions and MS has messed with the part of my brain that used to make decisions. grrrr...
What really brings me face to face with MS is visiting a friend who used to be at all our meetings, she is our youngest member, she is always smiling and positive even tho MS has hit her with a low blow!! She is 34 years old and has been in a "nursing home" for the past 4 yrs.
She cannot walk, she is tube fed, she has no control of bladder or bowels, she cannot use her hands because of tremors and spasticity, she does not carry on a conversation, but most times will answer questions with yes, no or I don't know. You may know many people with MS but you will probably not know about people like my friend, Catina!!
She used to run track, cross country. Even after dx'd with MS she was an honorary track and cross country coach for our local high school teams! That was before MS hit her with this low blow.
I know Catina might be helped by some future research development but now is now! Catina loves country music and still sings along when she hears a song she recognizes! She knows the words better than this old country music lover!
When I visit her today I have it set up for her to be in her wheelchair (which she can only be in 1 hour a day because of her tendency towards bed sores). I will be able to take her for a walk around the facility and all the others will say hi to her, smile, and she will say hi back and smile!! And if we are lucky enough we will be able to go outside in the garden for one of her few outdoor walks! Weather looks promising for that!!
As you walk, talk and eat with friends and family today please say a prayer for my friend Catina! And all those suffering with this horrendous disease! Some of us, like me, have invisible symptoms that can be helped somewhat with meds, therapy and FAMILY and FRIENDS. But when someone with MS talks to you about MS please listen. Their fatigue, confusion, pain are all real and unless you have MS you really can't understand but you can help, whether it is just by listening or helping them with some tasks that may be difficult for them.
Thanks for reading this! I guess I just needed to get it out!
I have a great life, family, friends and am very thankful!