marieandian

Last week I started taking rizulole. I have all most lost my voice and I miss it more than I thought I would. Walking is hard now but I'm in good spirits. My 3.. grandchildren keep me going and I'm eternally grateful to have them. They're aged 4 2 and a 1 year old. Yesterday was a bad day but today's been brilliant. In anything life has it's ups and downs .So far I've been lucky in that I still have my sense of humour.I hope you all have a peaceful happy New year.

Well waiting for my second emg results. Walking is getting very difficult due to the heaviness in my legs. Groin pain is not helping. My speech now is unintelligible which has led to some funny and frustrating situations. I went in my local kfc ( I know I shouldnt) thinking I can do this. How hard is it to say twister meal. Well I got the Twister wrap after pointing to the board and nothing else. I find if i eat slowly and keep the food at the front of my teeth i can eat it, though it takes a while, in the mean time i can watch all the people hurrying past the window and wonder what problems are they dealing with . I'm not alone. . I got my Mobility scooter my family are discussing what to decorate it with ie raccoon tails flame stickers and the like. My best friend has one so we are going to hit the town together. I hope you are all keeping well. Ill come back when I know my emg results. God bless.

Hi Marie Laurie, I'm glad you feel you can start talking about what's happening to you here. It must be hard to keep it all inside. I find it hard to share with others my feelings about what's happening with my husband who has ALS but this forum has been an emotional life saver for me. I don't often post what we are going through but just reading what others share helps me feel less alone and that we're not the only ones going through these struggles. Kate