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Old 08-22-2014, 10:19 PM   #1
cwf
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Tough... ALS Bucket List...challenge

Howdy!
This is 'off topic' for sure... so... here goes.

I care a great deal about y'all... so, here is fair notice...

This thread may be a downer to some.. Do not read the following unless you are prepared....

Has anyone seen this phenomenon where people pour ice over themselves? Why?
Homepage - ALS Association

It is because people I know and love are fighting this evil disease...

It looks like it is very likely in my future...and may already be exposing it's ugly symptoms.

ALS... "Lou Gherig's Disease"... has no cure except death... and it is brutally cruel and slow... there is NO cure... there is NO cure....

My youngest sisters' symptoms were diagnosed about 3 years ago as 'progressive bulbar palsy". Today, she is unable to speak, write or communicate in any kind of meaningful way....much more...and none of it is good.

Other siblings have unidentifiable 'symptoms'... much like how our sister started....

You can search the specifics... but it is horrific...

So.... what can someone do? Pour some ice over your noggin? Sounds pretty good in this Texas, Dog-days of summer...

While I still can... let me say "thanks" for reading...
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Old 08-22-2014, 10:45 PM   #2
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:-(

Saying I'm sorry to hear this sounds awfully flat - but it's true.

The ice bucket challenge is having a significant impact. Over the same period last year, they've raise almost $10m compared to $1.4m in the same period last year.

Still a drop in the ocean.

It may be the cruelest disease we know...

Many of our friends did the bucket AND donated. We opted for the donations instead but certainly hope these funds make their way toward helping you and your family directly.
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Old 08-22-2014, 11:04 PM   #3
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Quote:
Originally Posted by SteveSueMac View Post
:-(

Saying I'm sorry to hear this sounds awfully flat - but it's true.
..... We opted for the donations instead but certainly hope these funds make their way toward helping you and your family directly.
Thank you !!! Not 'flat'... not at all... Keep the faith... Let's make each day the best we can... love the best we can... Keep the faith!
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Old 08-22-2014, 11:18 PM   #4
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I am sorry for you, your sister, and the rest of your family.

There aren't words that will suffice in a situation like this but I offer my prayers.
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Old 08-23-2014, 05:44 AM   #5
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How dreadful, Channing.

I'm so sorry for this illness affecting your family.

This is the off topic forum, so write whenever you like about what you are dealing with.

There are supporters here, and anyone who doesn't want to read it doesn't have to.

I will.

Wishing you and your family comfort and strength,


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Old 08-23-2014, 08:54 PM   #6
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Channing, I am so very sorry to hear this. It is a dreadful disease, that is certain! My ex-sister-in-law passed after being diagnosed 6-7 months earlier.

Strangely, in 2007 I choked on food, couldn't swallow solid food for three months, and at one point when doctors weren't doing anything we went to a different ER hoping to get help. (I'd been told by the original ER doctor I had three cysts on the left lobe and two on the right lobe of my thyroid which could be stopping the food from going down.) The ER doctor at the second hospital called our family doctor who told him that the cysts weren't the problem, and he took his word for it. He then told us that I could have ALS and what I needed to do was to go home and pray that I didn't have it because it is the most horrendous death possible! We just looked at each other and cried.

Fortunately for me, a friend recommended an ENT Surgeon to us and upon seeing my scan immediately said the left lobe needed to be removed surgically because one of the cysts looked as tho it could be cancerous. He said one cyst was the size of the end of his thumb including the thumb nail and he looked down my throat and saw where it had been rubbing against the opposite side of my throat. So, my family doctor who said the cysts weren't a problem and refused to refer me to a surgeon didn't know what he was talking about. I lost 30 lbs. in the first 30 days and continued losing because I couldn't eat and was allergic to eggs and milk -- almost all supplements are based on eggs/milk. The day after the surgery I ate for the first time in three months.

I am recounting all this to say, I feel some of your pain; I almost knew first-hand what it is like, and at the time I was told that it, there is no way to explain how that feels. I will pray for you and your family.

Deb
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Old 08-23-2014, 10:04 PM   #7
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My mother In law died of ALS in 2009 after being diagnosed in her 70s. It is indeed a devastating disease and I remain in awe of the amazing strength and grace that she displayed right to the very end. The dollars raised by the challenge are so important because it's so hard to get people interested in a disease that has no miracles to talk about on a telethon. What you will find with ALS are some incredibly courageous people and their very strong families. If you have taken the challenge or donated, thank you for caring.
Dana


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Old 08-23-2014, 10:37 PM   #8
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Channing

Sorry to hear this news, fellow Airstream friend.

We will be thinking about you and you will be in our prayers.

Thank you for posting here. That is what this forum is all about. Thanks for the education also. I never knew that ALS was so ruthless and moved so quickly.

Stay strong and work on that bucket list.

Dan
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Old 08-23-2014, 11:31 PM   #9
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Channing,
I'm really sorry! It's in my family too. A first cousin diagnosed last year.
Best wishes and prayers are on the way!
Stay positive!
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Old 02-07-2015, 04:18 PM   #10
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To all,
Before 10AM this morning my sister Jeanne passed into God's loving arms.. May God have mercy on her tender soul. All I ask is to keep her in your prayers...

Remember... God loves us !!!

Thanks to all for your support and prayers!
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Old 02-07-2015, 04:48 PM   #11
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Gods blessings to your family. Prayers sent your way. Very wicked disease.
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