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8/27/2014

2 Comments

 
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I am sorry that I have been gone so long. The diet I started was way too difficult. I decided that if I had to eat that way, I would rather die. So in a way, the diet cured me. It made me realize that my life is not that bad.

It is like banging your head against a wall. You do it because it feels so good when you stop!

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Many of you have already heard about the Ice Bucket Challenge because it is all over Facebook.  Some of you may have already taken the challenge. Some of you may be preparing to take the challenge. There may be some of you who do not even know what I am talking about.

On July 29th, a baseball player from Boston with ALS challenged some friends to dump a bucket of ice water on their heads to make people aware of Lou Gehrig's disease and donate money to the ALS Association. It has now gone viral and the ALS Association has received a lot of donations. 

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You may ask, “Why should I do this ice bucket challenge?  This is stupid, how is dumping ice water on my head going to help ALS?”- These are questions a lot of people have.

I want to answer them from a perspective of a person suffering from ALS.

Those are actually good questions. I would have asked those too if I didn’t know what I know today. First of all, ALS is a little known disease. Only a few thousand people in this country suffer from it. The cause is unknown, there is no treatment, and the patient will eventually lose all control of his muscles until he suffocates to death. In other words a real buzz kill! 

No one wants to talk about it and the drug companies don’t find it profitable to develop a cure for so few people. Said differently, I and my other friends with ALS are not worth saving. I know that is a harsh statement however it is the truth. By the way, I do not fault the drug companies for their position, it makes financial sense. 


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For the first time, ALS has a front seat.  It is capturing the attention of many people.  It is all the rage on social media and even celebrities are getting in on the action in a big way. All this is raising awareness for this secret disease. So every time a bucket of ice water gets dumped, many people are made aware of ALS, and it delights me and my fellow ALS community.

Let me explain the metaphor of the ice bucket challenge. Getting a bucket of ice dumped on your head is shocking, much like getting a diagnosis of ALS is shocking. Your future is washed away and ice water is poured on your dreams. You are suddenly and painfully made aware of a deadly disease: ALS 


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I want to tell you about a little secret no one wants to talk about … every ALS patient at one time or another thinks about suicide.  With no cure in sight, no real funding for a cure, the death march heading to a gas chamber continues.  Ending your life is a welcome friend. Enter The ALS Ice Bucket Challenge.  When I see this it gives me hope. Almost like someone said, “Stop! I’m here for you, you are important and I care about you!”

Hope! Something I can hang on to. The future is looking brighter and a cure might be around the corner!



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There is an immediate need. Families are burdened with taking care of the person who has ALS. Often this is a 24 hour requirement with no help from Medicare, insurance, or government programs.  The entire responsibility falls on the family. Our SW Washington chapter of the ALS association is providing 6 hours per week of free care for families with ALS.  Although this is not enough it is a welcome relief.

Remember every bucket of ice you dump may literally save a life!

If you donate, please consider donating to the following: Link


Hope deferred makes the heart sick, but a longing fulfilled is a tree of life. 
Proverbs 13:12

2 Comments
Susan Finn
8/29/2014 01:30:38 pm

Did the challenge this evening for you and for Judy Roland. Keep on sharing your story! The more you teach, the more we want to learn and keep pushing for a better way. Prayers on your behalf.

Reply
Sally Seng
10/18/2014 07:14:20 pm

Hello Akhil,

How are you doing? I wanted to check with you to see how the
Deanna Protocol is going are you experiencing improvement?

Also I changed cell phone carriers and in the process of my contacts being ported over your number was lost. I would like to have it so that we can text.

Jennifer and I would love to come and pray with you.

Just provide a day and time tht work best for you.

Praying for you and your family

Sally Seng
360-487-9843 cell

Reply



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    The video is Akhil's journey with ALS.  Painful to see but the faith his family shows is uplifting.
    ​
    God continues to show his love for us through his people.  Thank you to everyone who has reached out to us, prayed for us, visited Akhil, brought us a meal and served us however God led you to serve.  Continue to follow those urgings from God in serving those who are struggling.

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    Akhil and Laura Jhaveri

    Applying the skills they've learned in over 20 years of marriage, this couple faces the challenges of ALS together. MND or motor neuron disease is deadly with no known cure.  The Jhaveri family has to endure this battle and show the world God's love!

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