Old 08-28-2006, 05:05 AM #1 (permalink)
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Cool Mom and ALS..

Mom isn't doing to good these days, She's starting to get really tired of this disease.. She faught long and hard, but believe she is setting the tone.. She's in alot of pain now as in her legs..and her feet are starting to swell.. she's down to 2 fingers working.. She broke my heart last week, when I was hugging her after a visit.. when she told me that even hugging is becoming hard to do.. She still smiles.. but it's not like a year ago... I got her a walker and she is finding it hard to do that. I need to get her a wheel chair now.. When she told me lastnight that there'a ice cream store a block away that is close, but far enough away where she can't get to it. Probaly alot here is probaly wondering what I am writing here, I am just expressing myself.. Sorry folks..
Mike
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Old 08-28-2006, 06:18 AM #2 (permalink)
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Mike,

My heart goes out to you, I know how you feel. My husband is very ill. His progression at first was slow but it is no longer slow. He has lost most of the ablility to use his fingers and his arms are very weak. Like your mom he says the same thing to me sometimes, it is hard to keep fighting when you feel like you are up against a brick wall. I have to try harder now to keep the hope alive in him. I wish I knew the right words to say to comfort you in your pain. It hurts, this illness hurts. As the days go by the more frightened I become. Fear has become the norm now. We hold each other tighter every day and we hold on to the hope that a cure will be found. Mike don't give up.

Sandy.
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Old 08-28-2006, 09:56 AM #3 (permalink)
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Cool

Hi Sandy..
It's very hard..and we have to stay strong for our loved ones.. I just wish everyday I could do more for her, so she does not feel this strain in her life.. And when she tells me yesterday was a better day.. So today when it seems so horrible to her.. tomorrow will be worse.. When I tell others that, they have a hard time relating to it.. We all need to stay together here, talk about it.. and keep the hope alive for our loved ones..
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Old 08-28-2006, 05:12 PM #4 (permalink)
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You are right Mike we all do need each other here. The people here are so kind and caring, I would be lost without this site. Thank you to all here.

Sandy.
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Old 08-29-2006, 04:52 AM #5 (permalink)
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Yes Sandy.. I came here last September.. and reading articles by other people such as yourself.. Helps relating to the problems that arise with my Mom.. I thank everyone here also..
Mike
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Old 08-29-2006, 04:32 PM #6 (permalink)
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hi mike and sandy and everyone...

i also love having this site to turn to for a little emotional boost. my aunt is not quite as progressed as your mother or your husband but i feel like i can anticipate what's in store through what you describe. it's so scary. i would imagine that the best thing you can offer to each of them is companionship. to not feel alone in dealing with this ugly disease is probably the best thing they can receive from you. you probably don't have to say or do anything. just be there and not let them feel alone in their fear. ugh, i pray for you and your loved ones and that you can find some happiness along the way as you deal with this disease. don't you find yourselves just totally shocked at what's happening and wondering why? even though it does no good, sometimes you just have to wonder WHY. and HOW? let's stick together and spread our support to each other...

love nicole
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Old 08-29-2006, 05:49 PM #7 (permalink)
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nicole,

You are right, I have asked myself why a million times. I have a wonderful, kind, caring husband and I ask over and over again why. Where did this disease come from. No family history of this, I do not understand. I will always ask myself this question.

Being there for a loved one is the most important thing of all. I will walk this walk with my loved one. We will fall down together and we will pick ourselves up and when one of us falls and unable to get up, then the other will do the lifting. Never will it be a burden. I am frightened too. I know that I cannot cure the one I love but I can be there to make sure we share laughter, we share tears, we share life together and in our hearts we know that we are going to fight this illness all the way and never give up hope.

Sandy.
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Old 09-04-2006, 06:58 AM #8 (permalink)
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WOW! My heart goes out to all of you!

I was my husband's main caregiver for 3 years while he LIVED with ALS.

But again, the key is to LIVE with ALS. I know how hard that sounds, but you have the choice to let it get you down, or fight it head on.

My suggestions are to get your loved ones out of the house as much as you can. Go to the mall, the park, the lake, the airport, playgrounds, the zoo, whatever. Just allow them to sit and watch. Use painkillers if they help.

They will come home tired & sore, but rejuvenated with wonderful thoughts, and together you have built precious memories. That is what will keep you going later on, and keep them alive in your hearts for eternity.

Manual wheelchairs are not expensive. Electric wheelchairs are expensive, but there are lots of used ones available on the net. Patients value their independence as well as their dignity. I always kept a bag hanging on the wheelchair, and it contained bibs, water bottles, towels, and a urine bottle. I used a urine bottle in many public places with a small blanket over my husband's lap. He was fine with that. I also learned to go into many men's washrooms, and people accepted that. In fact, some people offered to help if they could. It was fine. I just did what God asked me to do.

Remember, keep normality and dignity as much as you can. Be the hands and legs for your loved ones when necessary, but their voice and their thoughts are theirs. Even do some silly & humorous things if you feel motivated.


Venting is great. We hear you.

My husband got to the point where any physical contact was painful for him. However, he never complained. While he was still at home, I had lots of company come in to visit him. He was very worldly and enthusiastic. Once he was in the hospital, he entertained the nurses, and they loved him. They still talk about him, his courage, and his stories.

I know I am a Pollyanna, but it keeps me going, and it made my husband's last few years much more enjoyable. I would recommend watching Pollyanna to everyone, and also Patch Adams. Be risky. Be creative. Be happy. Be strong. Build memories.

Best of luck! Vent all you want, but also share your stories of some of the positive activities that you have 'created' with your loved ones.

Pat

ps: One more thing. I bought 50-60 DVD's from the cheap bins at WalMart, and watched them in the hospital with my husband. He often slept through them, but he wanted me by his side at all times. I was so happy to be there with him, and for him.

God knows how much I love him and miss him.
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