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May 12, 2003
:D hi I just recently joined this website, my younger brother (39) was diagnosed with ALS this past year. He is deterating so fast, in one year he has no use of any of his limbs, he can move his head and neck only, he is confined to an electric wheelchair all day for his comfort, he is choking constantly on his food, I was his caregiver for the past five months, but he recently moved to his own apartment with a live in caregiver. We have lost touch :cry: he seems to want to die alone only with few people around him I am very confused and sad and feel very useless. From at one time careing for his needs night and day to now not seeing him at all is very confusing and I feel so sad. I have to respect his choices but sometimes feel angry at the way things are. I am going to see him this week and perhaps for the last time give him a hug and kiss him goodbye. I wish to work for the ALS society to somehow feel included in this very cruel disease. I will contact our local chapter to see how I may be of service. thanks and good luck to all the PALS out there and their families.
Welcome Joy

Hi Joy and welcome. I am a PALS and all our situations are different however I did find my first year the most crushing. The mental challenges are more than the physical. Do check with other care givers (CALS) to see how they handled it but I remember wanting to be alone. Seems funny that we are so upset about dying we at first try to hasten it. I also take anti-depressants which I at first refused. Keep in touch.

CHRIS thanks much for your reply, I called my brother to see if my daughter and I could visit but he refused, saying he had a bad couple of days and that he would get someone to contact me soon. He is this way with our mom aged 70 she is upset that she cannot be there for him in his time of need. I guess he has the right to call the shots, but I cannot help feel that we are being shut out I know his body has failed him and his speech is very slurred maybe he has no dignity left and is wanting to live his life out without us near to see his pain. I know he knows how much we love him and are willing to do anything to support him and maybe thats all the comfort I can find right now. I hate what this disease has robbed him of he used to be a black belt, a body builder and a lead singer in a group, his life has changed so much I wish I could take some pain away from him.
He has refused all help from our ALS clinic and caregivers who are lined up with mattresses and assisted devices for him but he has given up. I wish to say that if anyone has this pain to face that you have the dignity and strength my little brother has and to allow those who love you to help out they need to as much as you need to know its available to you.
-a concerned and loving big sister xo
No right or wrong

Hello Joy,
Don't give up hope. I will say some Hail Marys and combined with what you are probably already saying maybe he will be able to open up to you again. Get him connected and he will meet former Rock starts, country stars, black belts etc. As a matter of fact I have been involved in everything from teaching people how to handle customers with disabilities to counter terrorism and Army bomb school. We were all something else before we became nobodies. We can come back and do! I would never interfere with someones right to decide their own fate and the idea of an uncertain end scares me however I have learned to stay away from those little areas of my brain and only look at today. I am not a good Catholic but that is one of the little areas of my brain I do not stay away from when I am alone and it keeps the bad shitte away.
All the Best

New member to the forum

Hi, my name is Mike and I'm from Toronto. My 72 year grandmother was rushed to the hospital last December not breathing. Today, she is in a continual pallative care center, where she lives with ALS, as many of you are living with or through as well. Before the incident came to that ambulance called night, my grandmother lost considerable weight, was droopy, and constantly coughing. No doctors could pick up her symptoms, where it wasn't until the Dr. Cashman of Sunnybrook diagnosed my grandmother with ALS two months into her stay, which was at St MIkes Hospital at the time. It was very hard on me the first months due to SARS, and not being able to see her for 1 MONTH AND A HALF, as I was accustomed to visiting her nearly every day after school. The center now is a great place, and very hospitable, but as it is with ALS, you can not be treated for it. ALS has taken hold right now of her externalities like fingers and toes, but has hit her lungs the hardest. Her mind is still sharp however, and writes notes to us if we are unable to understand her due to the trach pipe and the such. This message is only a condensed explanation of experiencing a loved one affected with ALS, but feels good to express some of feelings since ALS is such a misunderstood disease. I intend to become part of the society in the near future, for I now realize what many people go through. It is a disease that is more common than we think, but the most difficult to see in its pre-formative stages. Take care everyone, and I will keep all those who are experiencing ALS in some way in my prayers.
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