Old 01-09-2018, 01:09 PM #1 (permalink)
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Diagnosed: 08/2016
Interest: I have been diagnosed with ALS.
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Join Date: 2018
City: Tayport
State: Fife
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Diagnosed: 08/2016
Interest: I have been diagnosed with ALS.
Posts: 4
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Default Hi

Was diagnosed in August 16 and went from someone who was fit and healthy, went to the gym and even done a half marathon in 2014 to someone who sits in a powerchair, paralzed and can only use head controls. I hate ALS with a vengeance and it robbed me of living and my 9 month old son of a mama. I only exist now. Sorry for the doom and gloom
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Old 01-09-2018, 03:05 PM #2 (permalink)
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City: Southern Oregon
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Default Re: Hi

Sorry to have to welcome you here, but you’ll find lots of support from folks facing similar situations. Rant away and feel free to ask questions.
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Old 01-09-2018, 05:29 PM #3 (permalink)
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Interest: I have been diagnosed with another Motor Neuron Disease.
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Default Re: Hi

Sorry to welcome you here.

You will find many of us used to live pretty active lifestyles.

I hiked, backpacked, climbed rocks and mountains, and was an avid road and mountain cyclist as well as a dedicated skier. I enjoyed doing just about anything possible in the outdoors.

I still explore the outdoors from my wheelchair and participate in the adaptive ski program at our local ski area.

So, welcome! You will find many wonderful folks here. I marvel at how much helpful advice and support I have received here.

Steve
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Old 01-09-2018, 07:03 PM #4 (permalink)
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Default Re: Hi

I'm so sorry you have this diagnosis.

I was also an athlete and very much miss my running and all the different sports that took up much of my leisure time.

Nothing I have lost can compare to your having a young child and going through this horror. Please feel free to post, vent, SCREAM, or do whatever you need.

We are all here to help.
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Old 01-10-2018, 05:57 AM #5 (permalink)
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Default Re: Hi

I used to be a "semi-pro" triathlete. Was married less than 6 months before my diagnosis. I feel at times that I have ruined my wives life. When I am feeling that way she comes up beside me and tells me that as much as she hates this disease, she would not trade being with me for anything. So I work as hard as I can at controlling what I can. I cant control that my legs, arms, hand, core and breathing muscles no longer function, but I can control my expressions of love to her. I try not to show her my sadness, or anger, but only that she means the world to me.

There are a lot of kids out there with a "healthy" mom, that abuse them, that don't care for them, that don't support them, that seek their own selfish ends rather than their child's best. The choice we have to make is to let this disease define who we are as it takes away our physical abilities or for us to define who we are by using whatever mental and physical strength that we have to love those around us.
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Thanks from
BobbyRayC (01-10-2018)
Old 01-10-2018, 08:47 AM #6 (permalink)
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Default Re: Hi

Welcome to the club! The forum is a great place to learn your not alone. We all rant from time to time it good for us to let it out.

See most of us were very active also and have figured out to still do what we can,
E.g. my equivalent to class VI kayaking is now successfully getting a shower with no calamity,now that’s excellence

No doubt this nightmare sucks but if ya want we er here for ya. Postoften
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Old 01-10-2018, 11:23 AM #7 (permalink)
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Default Re: Hi

Just a quick "hi".
Stick around. The people here are all kinds of awesome!

Angie
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