Wednesday, August 20, 2014

Something I Find Hard To Talk About


The Ice Bucket Challenge has been all over the news recently
raising awareness for ALS or Lou Gehrig's disease.  ALS stands for amyotrophic lateral sclerosis which is a progressive neurodegenerative disease that affects your nerve cells in the brain and spinal cord.  It is a fatal disease, even though ALS doesn't affect the heart or the digestive system.


It makes me happy to know that more awareness of this fairly rare disease is being made known by the Ice Bucket Challenge and a lot of money has been pouring in for research. 


As of now, there is no known cure or anything to keep an ALS patient from dying.  It is a death sentence when once the diagnosis is handed out.  There are a few who manage to live many years with this disease, but most only live from 2-5 years.

Twenty percent more men get the disease than women.  And only
5-10 percent is of the hereditary strain.


This is the horrible, devastating disease that took the lives of my grandfather, my mother and both my brothers.  None of them lived beyond 2 years once their diagnosis was made.  My brothers lived less than a year.

 
My point in writing this in my post today is not to garner sympathy.  It is a way for me to try to help overcome my own fears.

  
I've never been able to speak about it very much.  Even after all these years.  It's been 16 years since I lost my younger brother.  

I have touched on it a time or two in my posts and I must say that it is easier to write about it than to talk about it.  Even now, tears are rolling down my face when I remember how my loved ones died. 

It was horrible to see them the way they ended up and knowing that
you were helpless and nothing could be done to help them.  I don't know that the pain or the fear of something like this ever totally goes away.  I hope that some day soon I'll be able to speak about it more, even with my children, without those cold, icy fingers of fear grabbing my heart.


Please join me in prayer that a cure will be found for ALS as well as for many other horrible diseases that so many suffer from.
 
Finally, kudos to all who are accepting the Bucket Challenge!  I read today that our previous president, GWBush, took the challenge and he in turn has challenged Bill Clinton.  Do you think he will accept the challenge?


Happy Wednesday to you!
xo Cheryl

37 comments:

  1. I hope he does and then challeges you know who for I can't think of a better person to have a bucket of ice water over his head. My sis told me yesterday that some of the nurses are nominating a few difficult, obnoxious docs. Sort of a reverse of Romans 12:20.

    It is very difficult to have something hereditary going on in the family and it is beyond difficult to watch as loved ones suffer. Love to you...I hope that it gets easier to talk about with your family. Talking is good.

    Chris Rosati is so inspiring. I have never seen such spirit, courage, and positive attitude.

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  2. I am so very sorry. I am glad that you are finally able to write about it. I hope by talking and writing and not holding the pain all inside, it will bring you some measure of healing. I cannot even begin to imagine what you have gone through and still are going through. Cheryl, I think none of us ever had a clue to what you have been suffering. Many blessings to you, my friend...

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  3. Cheyl, So sorry about your family. It is even heartbreaking to read about it. I wish there could be cures found for many diseases. The ice bucket challenge at least is bring mor attention to the disease and possibly more funds for research . Blessings to you dear friend, xoxo, Susie

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  4. Cheryl......I thank you for sharing this post and for sharing from your heart. I have seen the bucket challenges all over FB, but I didn't take the time to read what it was all about. I know that you must have thoughts running through your head, often......but thankfully, we have a God that can take away any Fear. I'm putting your name in my prayer box. Sorry for your losses, but hopefully through all of this awareness....funds can be raised and a cure will be found. hugs to you!

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  5. Cheryl I am so sorry. The fear must feel overwhelming at times. I think it helps to write our fears down on paper or like you have done here. It helps to get them out of our head. I will pray for a cure and for others who fight, I do it every night when I say my rosary. I think Clinton.. will NOT do it. Hugs to you Cheryl.

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  6. My heart is hurting just reading this and I don't even know what words to say. I have read and heard of this disease and i can't begin to imagine how you feel after watching your family through this disease. i pray now Gods protection and that he fill you with peace... thanks for sharing this with us, and i hope just writing the words will give you a little release...now each time I see the ice bucket it will mean more to me

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  7. Hi Cheryl,

    So very sorry to hear about the loss of your loved ones. I'm glad that you were able to express your feelings here in the comfort zone that is your blog, where you have many, many kind friends who care about your health and happiness. I will say a prayer tonight; be well, my friend.

    Hugs,
    Poppy

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  8. What a heavy load you've had to bear. I do pray that your story, coupled with all the recent Ice Bucket Challenge visibility, will bring about some better science, long-term care and understanding. I'm pretty sure Bill Clinton will accept the challenge. Thanks for speaking out. Fondly, the other Cheryl

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  9. Oh my! I'm so sorry that members of your family have suffered with ALS! I have a good friend slowly dying of it now. She used to be a nurse so she knows full well what her outcome will be. Yes, I think Clinton will take the challenge.

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  10. Nothing wrong with admitting that you are afraid. I'd be afraid too. But thank God He tells us that His love casts out all fear! Thank you for sharing this. I will be praying for you!

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  11. i am glad they are raising money with this public challenge. i am sorry for your painful family suffering. overwhelming for one family to face so much.

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  12. Dear Cheryl,
    I am sorry for the loses that you have suffered at the hands of this terrible disease.
    May the research progress and help those that suffer with ALS. Wouldn't it be wonderful to eradicate ALS completely?!!

    {{hugs}}

    Kerin

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  13. Cheryl, I am so sorry to hear of yours and your family's loss and pain over the years. It must be very scary for you. This horrible disease certainly warrants your fear and you are brave for writing about it. May the attention this is getting and the funds raised be put to the most beneficial use over the next months and years to find an answer for all who are suffering. You are not alone. May all be blessed with hope and faith and most of all, an end for this disease.

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  14. We are here whenever you want to share. Please remember that we care about you.
    Brenda

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  15. Oh Cheryl, I can't even imagine how this must be for you. I am so sorry for your losses. I hope that you find some comfort is sharing your story here in the blogging community. I think there is a tremendous amount of caring and support to be found here.
    I have been encouraged to see the great response to the ice bucket challenge on FB. I hope that the funds will go far in finding a cure for this awful disease.
    Gentle hugs being sent your way.

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  16. I feel sad that you have had such losses with this disease. I can't even imagine the pain of watching a love one have this disease. Being a nurse I know what it is like to care for these patients and is so devastating. This is such a worthy case and I will be praying about this one. I have a fear of Alzheimer's since my Dad had that and now I have a cousin with it that is only 66 years old; so I am super paranoid. Blessings and hugs for you!

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  17. I am so sorry about your bothers, your mom and your grandfather. My family's and my prayers are with you and your family. I hope that one day there will be a cure.
    I know that it must have taken a lot of courage for you to write. I hope that you feel a little lighter after writing. Venting is good. Please remember that we are here for each other.

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  18. I am glad that the Ice Bucket Challenge is raising awareness of this horrid disease. I am sorry for your loss and the heartbreak you have endured losing those you love.

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  19. Cheryl, I don't have this disease in my family history, but I've always feared it. I am praying big time for a cure and to keep you safe from it. I'm so sorry for all that the disease has robbed from you. Its time for a cure!

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  20. I think it is amazing to see all the challenges and hear about the millions of dollars being raised. I am so sorry for the loss of your grandfather, mother and brothers. I can't even imagine the pain or the fear that you have endured. I hope that a cure can be found soon.

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  21. OH Cheryl, I didn't know. SO sorry.... That is such a horrible disease. The first time I heard of it was when I was watching some soap opera (don't remember which one) --and one of the characters in real life had that disease... He kept working ---and many of the viewers learned a lot about the disease from him.

    Also, this week I heard that one of the Tennessee Titans ex-football players (who played from 2010-12) has ALS... He's so young and I feel so sorry for him...

    Our local TV station participated in the Ice Bucket Challenge.. EVERY single one of their news people did it for us to see.... What a great way to encourage others to participate...

    YES---it is a horrible disease, and for those (like you) who have had loved ones with it, it is unbelievably terrible to go through. I hope there will finally be more research on this horrible disease.

    God Bless You, Cheryl.
    Hugs,
    Betsy

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  22. Cheryl, I am very sorry that this disease has touched you in such a personal way. I lost a very dear friend to ALS over two years ago and it was heartbreaking. Heartbreaking for me...and for her loved ones, but not for my friend. Her faith was strong and she was amazing. She continued to honor the Lord to the very end. How often she would encourage me when I'd go for a visit. I miss her greatly, but would not wish her back for she is with the Lord, whole and healed.

    It's a hard world, isn't it? Hugs to you...

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  23. I am so sorry to hear that ALS has invaded your family so many times. I had a very good friend that had it, she died within a year, she was a nurse and wouldn't allow a feeding tube or any heroic measures. The person is in there but their body fails them so miserably.
    Yes I saw that Laura got her husband with the water...I suspect that Bill better come through.
    A cure would be awesome! :)

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  24. Cheryl, I am so sorry you had to learn about this disease in such a personal way. No wonder you have fears.

    I am betting Bill C. will accept the challenge.

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  25. Holding your hand with my heart.

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  26. So sorry your family has lost loved ones to this disease. The challenge has made me more aware.

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  27. Oh Cheryl, I can sure grasp the emotions you must feel considering that this has touched you in such a huge way. Be brave, dear woman. This is my prayer for you....You have seen and been through so much.
    Thank you so much for sharing your heart.
    Blessing-Kimberly

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  28. What a horrible disease ALS is! I lost a cousin to it a few years ago, and I can't imagine seeing so many close family members pass this way! MY heart goes out to you, Cheryl. I will keep your family in my prayers and hope that there will be a cure for ALS one day. I do think the ice bucket challenge trend has been a wonderful way to raise money for that cause and raise awareness to this terrible disease. ((( HUGS)))

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  29. I think the challenge has made everyone aware of the disease now! That is a good thing. But I am so sorry for the losses you have had to endure. I am so sad for you and your family . It is a heavy heart here when I think of you. Please know that you will be in my prayers. I hope this challenge will help.

    Susannah

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  30. I am so sorry to hear how ALS has affected your family.. I am glad money is being raised with these buckets challenges.. I hope a cure is found soon.. I will keep you in my thoughts and prayers..

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  31. This is a horrible disease and one that I for one,know very little about thanks for sharing how it has impacted your life.

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  32. I'm so sorry. No wonder you are afraid. Give your fears to the Lord.

    hugs and prayers.

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  33. I remember you writing about this way back. I'm so very sorry you lost so many loved ones.
    hugs,
    Marie

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  34. I'm late getting here so I don't know if you'll see this, but my heart goes out to you to have (had to) experience this horrible disease over and over. We have a close family friend who died from this about two years ago. It was fast, mean, and aggressive. It was horrible. I love that the challenge has put it in the spot light for once.

    (And I saw the GWB video. It was cute. I'll bet Clinton does it. Neither of those two men take themselves so seriously that they are "above" such things. I can say that objectively since I voted for one of them but not the other. Grin.)

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  35. Oh Cheryl, I can't even imagine how hard that must've been. It is a horrible disease and I hope a cure comes soon!

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  36. Beautiful post . . . speaking from your personal, private place of ALS in family members makes it sacred.
    Kudos to whoever started the Ice bucket challenge . . .

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  37. Aww Cheryl, I am so very sorry your family has had to suffer so many battles with this terrible disease. How awful for you and your family to go through the helplessness.
    I am just amazed at how much this simple challenge has sparked so much attention and money towards a cure for this too often unknown disease. We most all know of Lou Gehrig and his tragic ending. Thankfully this latest challenge has put ALS on everyone's target list. That is quite hopeful.

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