Wednesday, January 6, 2010

A New Chapter

Yesterday started a new chapter in my life.  This chapter is not one that any of us want in our book of life but it is now in my book and I'm going to write it with a positive outlook and hope.

My husband got a diagnosis yesterday of ALS, better known as Lou Gehrig's disease.  There is no cure at this time.  There is one FDA approved medication that has shown to slow the disease progression in some patients and hubby started on that medication today.

I really didn't know whether to post this or not but it's a big part of my life now.  Although I haven't personally met any of my blogland friends, I do feel like I have gotten to know so many of you through my blog and I felt like my friends should know.

Thanks for listening.

Jane

73 comments:

  1. Jane,
    I am soo sorry about his diagnosis! I am here for you as you have been for me. I am unsure of the details of ALS, but I will go google it now and learn more. I will pray for you both and I'm serious when I say I am here for you.
    Love,
    Michelle

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  2. Sweet Jane,
    Please know that my prayers and well wishes are going out to you and your husband straight away! Although we have never met face to face I would like to think we can all be of support to you one way or another. Whether you need a shoulder to lean on, an ear to whisper to or someone to raise you up in prayer we will all be here for you!

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  3. Jane, I am so, so sorry to hear this news. I will (and have already) pray for each one of you as you face this head on! I will pray that this medication will have a positive effect on this disease!

    If there is ever anything at all that I can do, please just let me know.

    Lou Cinda xoxo

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  4. Wow!!! Not the kind of news anyone wants to hear. Especially for you and your hubby. I'm so sorry to hear that you will both have to go through this trial. I'll keep the both of you in my prayers. I too don't know much about ALS, but I will be googling it as well. Take care & just know that you will be in our thoughts and prayers.
    Kim

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  5. Oh Wow that is a scary thing to digest. I am sure you are both in a stage of shock and puzzlement. Where do you go from here, I to like your other readers do not know a lot about this diagnosis, but I will get informed. I think it is good that you shared this with us we do care for each other. Any time you need someone I'm here. Hugs & Kisses, Diane

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  6. I just can't imagine how you must be feeling right now. I'm so, so sorry. My heart goes out to your husband and to you as you learn to deal with the new normal in your life.

    You will both be in my prayers. Hugs, Marla

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  7. Jane,
    Hang in there. I'll be thinking good, healthy thoughts for you and your husband.

    Carolyn

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  8. My dear Jane, I'm sorry for this news. I got chills as I read your post because I can't even imagine how devastating this news must have been for you both. I pray that God will hold you in his warm, loving hands and provide you and and your husband with comfort. I pray that you will be able to adapt to whatever change will be necessary brought about by this terrible disease. I further pray that your husband will experience the miracle of a cure. God provide you with peace and strength, Jane! Do keep us posted, if you are able.

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  9. Jane I am so sorry to hear this news. We are all here for you and we can take anything you want to say and are here to hear about the good days and the not so good days. We lost a good friend to ALS three years ago. He took part in several drug trials through Duke University here in NC. I hope the medication your husband started on is helpful to him. Will say many prayers for you all and hope your blogging continues to be a positive outlet for you!

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  10. Oh Jane, I'm so sorry to hear of your husband's diagnosis. I am familiar with ALS and have often donate to the ALS association in hopes of a cure being found.

    My husband's aunt Gaby died from ALS many years ago. I'm sure there have been advances in the treatment since then but as you said, no cure yet. I do so hope the new medicine will slow down the progression. Have faith, be strong and live every moment to the fullest. My heart and prayers are with you and your husband.
    Hugs,
    Dawn

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  11. I am so sorry and my happy and healing thoughts are with you and your husband. I am a firm believer in the theory that once you know your enemy, you can defeat them. ALS is now our enemy and we will do our best to kick it's butt!

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  12. Jane, I am sure the news was devastating but remember they are making gains in treating ALS.
    My prayers and well wishes are with you and your husband.

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  13. Jane~~~

    What a lot to take in at once. Of course you & your family are in my thoughts and prayers. I don't know you very well, but you seem like a very positive person and that is a healthy way to deal with all things.

    I will be here for you.

    xoxo
    Janie

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  14. Wow Jane, I am so so sorry that this is a road you and your husband will now walk down. I can not say that I know how you're feeling, but 15 years ago my hubby was severely injured at work and I will never never forget the doctors taking me into a private room and giving me every scary detail. It was all really more than I could take it. I'm so glad that you decided to share this with us so that we can be here to support you and lift you up in prayers. I've been taking care of my hubby for all these years, please feel free to get in touch if you need a shoulder or to vent or anything. I remember feeling so alone, please know you're not! I'll be praying bunches for you and your husband.

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  15. Hi Jane, I'm so sorry to hear the news about your hubby. You both will be in my prayers. We serve an awesome God, a healing God. A God that can heal your hubby. My mom was given 6 months to live after a diagnosis of a disease that only 1 in so many people get. Her tissues were hardening around her organs. That was 10 years ago. She's alive and strong! Her doctors called it a miracle.
    Blessings,
    Michelle

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  16. i am so sorry to hear about your news. please know that you and your husband are in my prayers.

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  17. Horrible news, Jane. I'm so sorry. I know the prognosis used to be awful, only 3 years to live after diagnosis, but now, I think it's much better than that. I love your attitude. I believe a good attitude and a heap of faith will do wonders. God bless you both as you deal with this terrible disease.

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  18. Mamie - I'm so sorry. Ive taken care of several people with this disease. I have a friend whose husband had this disease and I was able to help take care of him too. She has a blog and though she doesn't update often, I know she would be willing to answer any questions you may have. Her blog address is:
    http://dancelikenobodyswatching-shelly.blogspot.com/
    You'll be in my prayers.

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  19. Jane, I am so sorry to hear of your news. I can't imagine all of the thoughts racing through your mind at this time. I wish you and your family all the best as you deal with this. And sometimes it may not be possible to stay positive, so feel free to vent some as well...it's all part of the process. You're in my thoughts!

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  20. Jane,
    I'm so sorry to hear about this devastating news...please know that I will be praying for you and your husband every day. I am here for you...so please just let me know what I can do for you and I will.

    Blessings,
    Linda

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  21. I too will keep your husband and you in my prayers.Prayer is a powerful thing.

    XO*Tricia

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  22. Oh Jane, I'm so sorry. Please know that I like everyone is here for you and will keep the both of you in our thoughts and prayers.

    Blessings my friend,
    Gail
    XO XO

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  23. I'm sorry to hear this, Jane! As with everyone else, you, your family and your hubby will be in my thoughts and prayers. I went to Web MD before commenting because I have heard of ALS, but didn't know much about it. I am assuming they are sure about this diagnosis. Please know that you have a supportive network here. No, many of us never meet, but I would do anything I could to help you.

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  24. This new chapter doesn't sound fun...but all of us in blogland are here for you anytime, for prayers or just someone to vent at. I will keep you both in my prayers

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  25. Jane...ditto, ditto, ditto....you have some wonderful friends who have left very sincere messages. Your news brought tears to my eyes and I will also be here for a shoulder to lean on. You and your family will be in my prayers, too. Always remember: God never hands you more than you can handle. Stay positive, friend!

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  26. Jane,
    Oh my prayers are with you even as I type. I am honored to be part of your blog family. I will keep you and your husband in my prayers, send lots of virtual hugs and support you any way I can from here. Dee Dee

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  27. So sorry to hear this news Jane.
    I do not know much about this illness but will look it up and read about it.
    Maybe the blog will help to sort your feelings and fears around this and you are bound to feel the support from everyone who shares this with you.
    Good wishes and prayers for you and your husband,
    Kathleen

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  28. Dear Jane - I am sure this is a shock for you. I am so sorry you both have to deal with this, but I am glad you decided to post about it, so that I can pray for you and your husband. I don't really know much about ALS. I hope you will be comforted by everyone here, and will keep us informed as you feel led to.
    Mary Lou

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  29. Jane,
    I am so sorry about this uncertain time in your life. I do appreciate that you shared it. We are all family and we need to be able to support you during good times and bad. You and your family will be in my thoughts and prayers.
    Sending Love & Blessings,
    Cindy

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  30. Jane my heart goes out to you. I am so sorry for your news. My prayers are with you.

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  31. Jane, my prayers are with you and your family. May God lay His healing hands upon your husband and give you all strength beyond measure. God Bless, Theresa

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  32. I'm so sorry to hear this Jane. I know it is something you both are going through, so please let your husband know that there are tons of people praying for him right now.

    I know you'll find a way to get through this, even if it's only one day at a time. Just know that you have a lot of friends to turn to if and when you need us. We're here, and we'll listen, and we'll care and pray for you.

    All my best. I'm praying for your family. Polly

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  33. What can you say when you receive news like this? Please know that you and your family are in my prayers and you have someone here cheering you and your husband and your family on.

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  34. Yes, you have one more family praying for you, one more shoulder to cry on... I am so sorry for you and for your husband.
    I'm honored you thought we were important enough to you for you to share this news.
    You know you can always vent to us! This is one of the wonderful things about Blogland~ We are all here to support one another and encourage one another! Good luck to both of you~ You will be thought of and prayed for often.

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  35. I will be thinking good thoughts and wishing good wishes for you and your husband. My best to you both.

    Janet

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  36. Dear Jane:
    I'm a person who looks for a glass half-full, so I first went from your message here to learn more about the disease. I've alwsys heard the name, but really didn't know much about it. I went to Google and typed in "Lou Gehrig's Disease" and found a wealth of information. The thing I thought might give you a ray of sunshine is what I'm quoting here from the ALS Association site: "Importantly, there are significant devices and therapies that can manage the symptoms of ALS that help people maintain as much independence as possible and prolong survival. It is important to remember that ALS is a quite variable disease; no two people will have the same journey or experiences. There are medically documented cases of people in whom ALS ‘burns out,’ stops progressing or progresses at a very slow rate. No matter what your individual course or situation may be, The ALS Association and your medical team are here to help."
    I'll say my prayers that your answers are somewhere within this paragraph. You're not alone, my friend.
    Love,
    Donna

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  37. I got a scary diagnosis a few years ago and yes it is a frightening new chapter. Be strong my new friend, you have so many shoulders to lean on. Be strong.

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  38. Our thoughts and prayers are with you, your sweet husband and your family.

    Your blog friends are here by your side.

    Alisha

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  39. Dear Jane,

    My BF's husband was diagnosed several years ago with ALS. It is frightening I know. You and your family will stay in my prayers. Prayers are very powerful and can do so much. I know that first hand.

    One of the links on my blog is for the ALS association. They are amazing and can offer a wealth of information, support, just about anything you need. Please visit them.

    You are loved.

    big hugs,
    Barb

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  40. Jane,

    I will send good thoughts and prayers for you and your husband. As an RN and a psychologist who deals with health issues, I know some of the challenges you will face. I hope you and your husband can find strength and joy in each other as you begin this chapter of your life.

    Please do reach out when you need a friend or shoulder.

    Brenda

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  41. Jane, my thoughts are with you and your husband. This is really horrible news and must be pretty terrifying for you.

    Remember, though, that you're not alone. You clearly have lots of friends in the real world and in the blogosphere and we're all here to support you and to listen.

    Take care of yourselves,

    Richard

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  42. Oh Jane, this is heartbreaking news and my thoughts and prayers are with you and your husband as you face this journey. Know that you have many friends and will be able to share what ever you need. ((( Judi )))

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  43. Dear Jane, my prayers are with you & your husband and family. I am whispering your names to Jesus right now. From a faithful lurker, Sally

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  44. My prayers and my heart goes out to you and your husband.

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  45. You are a brave and loving wife!
    We all want to support you and your family in the best way we can. If you find that writting about it helps in any way, we will listen and give you support.
    I hope you feel all the prayers that are being said in your behalf.
    Bless you.

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  46. Dearest Jane-

    Just remember this.

    You.Are.Not.Alone.

    One day at a time my friend,

    Laura

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  47. i am so very sorry to hear this, jane...there are no perfectly fitting words for friends on a journey like you've started. except that we care. thank you for sharing, and only the best to you and your husband...

    mary

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  48. Jane I am so sorry to hear of your news. I will keep you and your husband in my prayers.

    {hugs} Jill

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  49. Bless your family as you start on this difficult journey. I'm praying for you.

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  50. Jane, I am the one who also lost a husband to this terrible disease. I know what thoughts are running around in your heads. The news from the neurologist and doctors was shocking to say the least. This leaves the ride home very quiet, tearful, what next thoughts?, why? what are we to do?, pain, sadness, heartbreak, how does this happen to someone who is so good?, so many other questions and thoughts. I have found a few places that have helped me through all of this when I was going through it and if you have any questions, concerns, or want to vent, even though I do not know you, I am here to listen and maybe help you in some way. God be with you at this time.
    Shelly

    http://www.medicinenet.com/amyotrophic_lateral_sclerosis/article.htm

    http://www.ojrd.com/content/4/1/3

    http://www.alsa.org/als/

    There are several places that can help. Sometimes medically also.

    PALS-PATIENTS WITH ALS
    CALS-CAREGIVER OF SOMEONE WITH ALS

    http://bosburn.com/

    http://kensjourney.com/first.html

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  51. I'm sure you need a hug right now and I'm sending an ever so big one to you tonight. Your positive attitude will get through this and though your path in life has taken a new direction, I know you will see your way clear.
    You know that we all care and want to help you anyway we can.
    love to you my friend.

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  52. I'm so sorry. Praying for you and your family.

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  53. I'm sure this was hard to share, and I too will be praying. In fact, I've started a prayer journal this year for prayers specifically for my blogging friends, and this is the first request. I'm sure others are doing the same thing. I wish I could give you a hug.
    Blessings,
    Marcia

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  54. Jane I recently became a fan of your blog. I am sorry to hear about your husband. You know your loyal blog readers and friends will have you in their prayers. Stay strong and just know we are holding you up.

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  55. Jane,

    I am so sorry to hear of your husband's diagnosis. I will pray for your family as you go into this difficult time. Take comfort in knowing that I and lots of others here care for you!

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  56. What can I say that has not been said, just to let you know, you have one more person sending up prayers for you and your family.

    Hugs,
    Melissa

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  57. Oh Jane, I'm so sorry to hear about your husband's diagnosis. I pray that your family will draw your strength from the Lord and that your husband will respond well to the medication. Blessing to all of you.

    Jocelyn
    http://justalittlesouthernhospitality.blogspot.com/

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  58. Jane, nothing hurts more than seeing a loved one become ill. But remember you are strong, and you and your family will get through this.

    Blessings to you all,
    Diane

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  59. Jane, my prayers are with you and your husband and the rest of your family...please hang in there, because you have lots of love and support. Wendy

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  60. Sweet Jane,
    This is a terrible diagnosis and will be a trial for you both. My husband has recently been ill..and his condition is ongoing and fairly often can become life threatening. I share this with you only because I wanted you to know,I understand the pain, the dread at the Dr's news. Hold tight to each other..the power of love and prayer is mighty. We've learned to live with my husbands condition as well as we can..and we carry on from that point. Know that you will both be in my prayers..God bless you both and may He hold you close in love and comfort. Blessings and if you need someone to listen,I am here.. if I can help in any way,I am here.

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  61. Jane...Just now got around to reading this. I will pray. And thank you for sharing. Somehow, letting others know, helps.

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  62. Sorry to hear about your husband's diagnosis, but it doesn't have to be terminal! Get on patientslikeme.com, and drop by my site for some useful links, alsbytes.com. God bless!

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  63. What an amazing outlook so early on. Good luck to your husband and you. I wish I had something to say to help you out!

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  64. Jane, you and your husband are in my prayers. " By his stripes we are healed." I stand firmly on his word. The effectual fervent prayer of a righteous man availeth much. I know this to be true. You are in my prayers.

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  65. Oh my gosh Jane, I popped over for a visit and just saw the news about your husband. I am so sorry that the two of you are going through this!!! I can't even imagine how you are both feeling right now. I will keep you and your husband in my prayers. Please let me know if there is anything that I can do for you. I wish I lived closer so that I could be there for you in person!

    Blessings and Hugs,
    Karen

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  66. Jane, this is such heartbreaking news, a tough blow. I know that you will have many questions and it will be overwhelming at times. The road ahead is going to be tough, but you have a lot of wonderful people out here in Blogland and I know that I will be here for you at any time for any reason. Life is our journey and on the way our laughter and tears and loves are the blueprints we leave on the hearts of those we love.....
    You and you husband are in my thoughts and prayers!
    Hugs,
    Margaret B

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  67. Dear Jane, Your husband, your family and you will be added to our prayers. Know that I am here to listen if ever you need an ear. Stay strong...{hugs} Stephanie

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  68. I just happened upon this blog (redecorating itch) and came across this post. My heartfelt sympathies with you -- a co-worker is dealing with this same thing and the road (as you know) is hard. She would also say there are unexpected blessings along the way. I will be thinking of you and sending good thoughts your way.

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  69. Sending many prayers to you and your family...

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  70. I was just blog browsing and came upon your blog. I know you are going through a frightning experience, but it must be a source of strength to read so many heartfelt comments. May God bless you and your family. All of your readers will keep good thoughts, and prayers coming your way.

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  71. Jane,
    I'm so sorry to hear about your husband's diagnosis and thank you for sharing it with us. I know what you mean...you start to really feel connected to your blog community, even though you don't "know" them. We're her for you!

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  72. Said a prayer for you just now.

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  73. I am so sorry to hear about your husband. My thoughts are with you. xo Joan

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Thanks for stopping by. I really enjoy reading all of your comments!