I think you will find a lot of help here and answers to many of the questions you may have. Glad and sad to see you here. This is one of the greatest group of people I have every had the pleasure of getting to know, I describe this site as the greatest club in the world to belong to and the worst. It's a shame it took ALS to bring us together.
If you have any questions or need to vent, whatever jump right in. You can also use the search link above to see if anything you are interested in has been discussed.
My sister has been telling me about this forum. I've finally managed to register and just having read only a few posts, I can see this is indeed a very caring community.
My mother has motor neuron disease. It is affecting only her speech and ability to swallow. We are grateful that her limbs are very strong and her mobility has been unaffected, and we pray that it stays this way. She is and always has been a very high energy person.
Nevertheless this condition is devastating. She was on her own until three months ago, when I decided to move in with her. The stress of not knowing how she was doing became intolerable. My sister and I were no longer satisfied with just a phone call, due to our mother's extreme difficulty in communicating by speech ... hence the telephone which she always loved has become useless to her. The telephone has always been her lifeline, an instrument by which she can have a social life, especially in winter when she is housebound. She is 75 and does not drive nor does she use the computer (and even if she did, none of her friends do either). I became convinced at one point that if I did not move in with her, she would simply die of loneliness just from lack of human contact.
I'm very glad I made this decision, but I desperately miss the joy of simply having a conversation with her, or just sharing a meal without stressing about her ability to swallow.
Thank you both for the warm welcome I know that this can be a devistating time I am here if you ever need an ear.. john and I know when life changes so fast and drastic it is a lonely world. But you need to thinkpositive all the time (its not an easy road for anyone) but positive thinking will keep you going
Hi John Welcome. Has anyone mentioned to you about Dynavox? They make a laptop typewriter that speaks what you type into it. Your mom's Occupational Therapist might be able to hook you up with one. Depending where you live (US or Canada) ALS Society or ALSA might have some in the loan closet so that she wouldn't have to buy one. Doesn't cost anything to ask. Take care. AL.