How does it compare

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georgia

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I know when it is us what ever it is is BAD. Being new and have not seen or know anyone with ALS and when you tell others they look at you like what is so bad you look fine. When it progresses I am assuming most do not last long or are housebound. There are quadpargic, autism, crippling arthritis and care of the elderly all require care. What am I looking at that is so different. Reading the stats of 2 to 5 which I know can be longer some think well it will over soon. Today is one of those days that I feel over whelmed as the CALS at the future.
 

CindyM

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Hi Georgia - I'm new too, and still in pretty good health. I think when we get a DX and start going to support groups it will fall into place a little more. You can read about what is going to happen, of course, but understanding is not the same as knowing. And you are right that things get overwhelming. There is a lot to learn, a lot to decide, and a lot to worry about.

Best take things one day at a time and do what we can, while we can. You did the right thing by reaching out. Cindy
 

CBowman

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I know how you feel. I have had symptoms since 9/25/06 and now am in a wheelchair full time. I was diagnosed on 2/15/07 with ALS. My progression has been fast. My coworkers have put ramps in my backyard so I could leave the house. I am in the process of getting a handicap van.

Today was a bad day, my fiance and I were going to a brunch. I typically wheel the wheelchair to the car, grab the door and slide into the seat of the car (fiance drives). Today, I didnt make the seat of the car, I fell to the ground and could not get up. Three neighbors had to help me back to the wheelchair, needless to say we didn't make brunch. I need to get a hoyer lift and quickly. I am just venting now, but it was a bad day. I think the setbacks hurt more mentally than they do physically.

Feeling your pain
Chad:-(
 

quadbliss

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Hi Georgia and CBowman,

One thing I have found helpful is not to dwell on the negative. Think about your current and impending circumstances just long enough to form a plan. Then move on to something that makes you happy. The best method is to think of the things you are grateful for. Try to cultivate the feelings that accompany these positive thoughts. It is difficult at first, but eventually it becomes habit. The Universe will respond to your positive thoughts and gratitude and bring about more positive experiences and circumstances for which to be grateful. But be careful, the opposite is also true. This is a law of nature. just like Gravity. :smile:

Mike
 

georgia

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With the diagnosed 2/27/07 I guess with 5 days I am still between shock and denial maybe it is something else but deep down I know it isn't 2 yrs of testing and I was there at the EMG. and exam. Some people have no warning and life changes. I have time to say goodbye but today it is hard to know where to put my feelings. The caring for isn't there yet only the unknown.
 

quadbliss

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Hi Georgia,

You will have to go through a grieving period, but as you emerge from that, with the right outlook, you will see the world in a different way. It can be brighter and more meaningful. You may also see that you have much more than just enough time to say goodbye. You have a second chance to experience your own existence from a whole new enchanting perspective.

In the mean time, you have this amazing collection of people who come together for the beautiful purpose of listening to your hard times and providing support and answers. We have all been there. :smile:

Mike
 
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CindyM

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Mike - well spoken, as usual, and as usual you leaved us some thoughtful material to digest!

Georgia - Mike is right, give yourself time to grieve, especially as reality sets in. But making a plan and moving on is the best.

Chad - I am so sorry you fell. Hope you didn't hurt anything other than your self esteem when you were bouncing on the ground in front of the neighbors! Glad they came to your rescue! Cindy
 

Al

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Hey Chad. I know how you feel. You must be a little smaller than me. I fell just before Christmas and it took 4 guys to get me back up to stand at the walker. I'm getting a power chair this week so as you can surmise I've gone downhill a bit since Dec. but on the good side I'll now be able to go uphill to my neighbors house which I haven't been able to do since I had to quit using the riding lawnmower but that's a different story that's in a different post. Try to look for the good things as Mike says.
AL.
 

CindyM

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Hey Al-just becase it is a power chair don't zip around in it too fast. Unless, that is, you put snow threads on the wheels! :lol: Cindy
 

Al

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Hi Cindy. This thing will do 7.5 miles per hour. I had it going so fast in the hospital I could feel the breeze in my hair wich is a good trick if you've seen the pictures of me. LOL.
It was the hair in my ears moving. Darn stuff grows wild everywhere except on your head. LOL.
AL.
 

CindyM

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Sounds like fun, Al. Sorry that your condition took a down-turn, though. Cindy
 

hboyajian

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The last time I heard my dad laugh was when he was getting fitted for his wheel chair and we were joking around about where he could go, and that he shouldn't try to drive it on the freeway.
 
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