Me and ALS
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May 13th, 2013

5/13/2013

17 Comments

 
“Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.”
- Lao Tzu
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I have had a difficult time recently.  I was walking in the garage, got dizzy and fell backwards, hitting my head on the concrete floor. 

I thought I just had a bump on my head until Jordan, my youngest started to scream!  Laura called 911 and I “enjoyed” my first ambulance ride.  I got four staples and was released with a clean bill of health. 

The following week I had my breathing checked and found out my lung capacity has gone from 90% to 54% in just a few months. 

My doctor wants to do all sorts of things before I degrade further:  Surgically insert a feeding tube, put me on a breathing device and have an in-home physical therapist work with me.


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All in all, a couple of bad weeks.  I was feeling pretty down, seeing the end quickly approaching when I was reminded of a truth:  What we focus on grows.

I could focus on my problems or focus on my solution:  Christ

Shifting my attention to the good made me feel a lot better.

I could have been badly hurt when I fell, I didn’t.

I have options with my breathing.

Most importantly, I am surrounded by people who love me.

 

To that end, we made a video showing how much effort it takes to meet my daily needs.  If you saw the last video “Beautiful” it is obvious that my body continues to decline.  Nonetheless, I keep strong because of my family.  

Stay strong and focus on good.
17 Comments
pam hough
5/13/2013 10:11:57 am

I pray for you and Laura daily... your faith takes my breath away! Live you and your family.

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Jason Christensen
5/13/2013 10:47:34 am

Akhil you and your family are truly an inspiration to me and so many others God bless you and your family. You are all greatly admired and loved by so many.

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Mark Mary
5/13/2013 12:53:34 pm

Thanks to all of you for sharing your love and compassion for each other through this journey. It gives me hope and encouragement to keep my faith for God and my Family a number 1 and number 2 priority. Thanks again for sharing!!!

Mark Mary

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Linda Allen
5/13/2013 02:10:06 pm

What a beautiful video. And what a beautiful family you have. Y'all are helping so many people you don't even know. Love to you all. May God keep you in his loving arms.
Linda

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Kent McMahan
5/13/2013 03:06:01 pm

That is a beautiful video! Your wonderful smiles truly demonstrate the love you have for each other. Your positive attitudes and faith in God are an inspiration to me. Is it ok if I share the video?

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Akhil
5/14/2013 07:04:20 am

You are free to share this link with anyone who may benefit.

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Deb Leahy
5/13/2013 11:40:28 pm

You continue to display your love for one another with such grace. Although the video gives an idea of how difficult your lives are, no one can know how it really is unless they have lived it. This is love in its fullest sense of sacrifice, your smiles a reflection of the power of God strengthening you for each day's needs. Blessings.

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Patty Watkinson
5/14/2013 04:12:42 am

Amazing video and I love the end ... I pray for God's Grace to sustain you all every day. Each of you is Special and you are a wonderful example of a strong and sacrificially loving family ...

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Akhil
5/14/2013 07:06:55 am

I thought I would share my latest Blog which has a video attached.

Having a progressive takes a daily toll and the video may shock you; but you get to see where I am today. It’s not pretty, but here it is…

You may share this link with others who are struggling.
Also, share this video with care givers.
We not alone in the struggle.

I have learned that I can’t choose my circumstance; but I can choose my outlook!

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Tammy Nettinga
5/14/2013 07:16:48 am

Amazing....I am continually moved and inspired by you all. The love, commitment and faith that is present in your family is an absolute testament of what God and Family truly mean. What a gift you have shared with all of us...I thank you for this. Prayers and blessings to you all.

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Nancy
5/14/2013 02:21:14 pm

Your courage and strength that comes from above makes me smile.

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Patricia
5/16/2013 11:26:25 pm

Your family is an incredible inspiration and a blessing to so many, Akhil. Even in the midst of this struggle, your face continues to glow with the Holy Spirit! Thank you for sharing your lives with us.

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Dixie
5/23/2013 09:31:01 pm

My love, prayers and thoughts to you, Akhil. As I was reading your blog I was thinking about a young friend who has turned his life over to atheism. He said yesterday on his Facebook that faith is just being gullible. I see you post and think faith, love and hope no matter the outcome. In the end for us all, love is all we will see. We have a few promises, all of us whether we believe in God or not. We a promised that God still loves and cares for us. He stands at the gate hoping to see us dragging our disillusionedselves back home. And he promises that we WILL have troubles in this life. Those two promises go hand in hand, don't they?

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Susan Jones
6/3/2013 10:21:18 am

You never cease to amaze me...all of you! Your love shines so true and your love for Christ is so apparent and real! You can't fake either of these. It took me over an hour to stop crying after I watched the video. I was so mixed with sadness that you have to go through this, but, even though I couldn't hear either one of you in the video, I knew when you smiled and laughed one of you was saying something kind of off the wall and I found my self giggling just like old times. You have not lost your sense of humor Laura and Akhil and you shame me sometimes. I had to turn away when I saw Corrine giving you a shot Akhil. I give her credit to be able to do that....and to you for being able to take it! I love you guys so much and when I should be doing all I can to give you strength, you are strengthening me. I may not comment on all your posts, but please know I read them faithfully and pray constantly for a complete recovery Akhil. I'm still believing!!!

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Mylissa Boyd
6/18/2013 01:40:42 am

Akhil, I love your smile it reminds me to take a deep breath and remember to smile and enjoy something out of every moment. You are blessed with a beautiful and loving family. You can tell how much you all truly care for one another. I'm touched and inspired by your video's, pictures and stories. Your family has made a possitive difference in my life. I've shared your story with others who are struggling, because your faith and devotion can teach us all something. Thank you for sharing. I'm praying for you, Laura and your beautiful and talented daughters.

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Michelle Gay
6/28/2013 11:54:43 pm

I think your story is beautiful and encouraging. My partner was diagnosed a month ago and I don't know how to give him encouragement. He is depressed and can't focus. I try to be positive for him, but it's exhausting. I understand his anger and hopelessness. He does not believe in God, but maybe through this trial, he will come to learn about God and all of God's goodness and love. If you have anything encouraging that I could say to him, I would appreciate it. I want him to get up and live life while he can still enjoy it.

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Akhil link
6/30/2013 02:59:48 am

Michelle,
Thank you for your comment. I understand what your partner is feeling!! ALS is a giant. Fighting a giant all alone is beyond exhausting - it is impossible!!

Here are some thoughts for both of you:
1. God is the ONLY person who gives me strength. He is there always. Without Him I too would be depressed. (Sometimes EVEN with Him I get depressed, but those episodes are brief)
2. You need an army to fight a giant! Gather a select few supporters to join you in the fight. These are positive and loving friends.
3, Shed people from your lives that are negative or even feed the "doom and gloom" ALS conjures. These people may appear to help but they will tear you down.
4. Your life has changed, accept it and move on! Stop lamenting the life you wanted, make the most of what life you have.
5. Time to do The most important things you have on your bucket list! Go to .San Fran to see the Golden Gate Bridge. Whatever, just do it. Recal the last couple iPod days of a memorable vacation. Remember making the most of those last precious moments? It is the same for you now! You still have the ability to do things, don't waste time thinking of could've been. Instead imagine what you want and make it happen!
6. Help. Be a light in someone's life. It is hard to feel sorry for oneself while being selfless.

Most important thought: It is all a choice. Sadness or happiness, angger or joy. You get to choose.

Choose well.

Your life depends on it!!

Akhil

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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.

    Picture

    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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