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Thread: UPDATE: see post #15: More bad personal news on the Alzheimer's front

  1. #1

    UPDATE: see post #15: More bad personal news on the Alzheimer's front

    Johnson & Johnson announced today that they are discontinuing the clinical trial of the Alzheimers med my mom has been taking which was in phase 3 of development. She had been part of this clinical trial for almost 4 years now in her battle with Alzheimers Disease.

    The silver lining is that the way science tends to work is the elimination of everything that isn't the answer until you're finally left with whatever the answer is, and this trial will have been a part of that process.

    I'm not all that interested in silver linings tonight, though. As my dad said so well, tomorrow we will rejoin the fight, but tonight our family is weeping....

    "Always be ready to make your defense to anyone who demands from you an accounting for the hope that is in you; yet do it with gentleness and reverence." 1 Peter 3:15-16 (NRSV)

  2. #2
    pray for me ;)
    ColoREDo's Avatar
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    Tough news Luth. Dreadful disease that will hopefully be conquered soon. Best wishes to your family with this fight.
    Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us.Bill Watterson, cartoonist, "Calvin and Hobbes"

  3. #3
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    Quote Originally Posted by LutheranHusker View Post
    Johnson & Johnson announced today that they are discontinuing the clinical trial of the Alzheimers med my mom has been taking which was in phase 3 of development. She had been part of this clinical trial for almost 4 years now in her battle with Alzheimers Disease.

    The silver lining is that the way science tends to work is the elimination of everything that isn't the answer until you're finally left with whatever the answer is, and this trial will have been a part of that process.

    I'm not all that interested in silver linings tonight, though. As my dad said so well, tomorrow we will rejoin the fight, but tonight our family is weeping....
    ...very sorry to hear. Prayers are with you, Luth.
    “If it is not right do not do it; if it is not true do not say it.” Marcus Aurelius

  4. #4
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    Tough Disease. My Grandma lived with it for about 8 years before she passed, it's a hard to see someone go through it from the early stages all the way through the most severe stages. Since my grandma's passing, I make sure that the Alzheimer's Association is my primary donation each year http://www.alz.org/.

    My thoughts and prayers are with you, Luth!

  5. #5
    Quote Originally Posted by BigRed Mosquito View Post
    Tough Disease. My Grandma lived with it for about 8 years before she passed, it's a hard to see someone go through it from the early stages all the way through the most severe stages. Since my grandma's passing, I make sure that the Alzheimer's Association is my primary donation each year http://www.alz.org/.

    My thoughts and prayers are with you, Luth!
    Thanks--my mom was diagnosed when she was 54 and still working as a nurse for the Eastern Nebraska Office on Aging, referring clients to many of the same services she now needs to use herself. She's 61 now. The Alzheimer's Association is a wonderful organization and has been a tremendous support for my whole family, particularly my dad.

    "Always be ready to make your defense to anyone who demands from you an accounting for the hope that is in you; yet do it with gentleness and reverence." 1 Peter 3:15-16 (NRSV)

  6. #6
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    Quote Originally Posted by LutheranHusker View Post
    Thanks--my mom was diagnosed when she was 54 and still working as a nurse for the Eastern Nebraska Office on Aging, referring clients to many of the same services she now needs to use herself. She's 61 now. The Alzheimer's Association is a wonderful organization and has been a tremendous support for my whole family, particularly my dad.
    Luth, thoughts and prayers are with your mom, you and your whole family. Additionally prayers for the scientists working on treatments/cures for this ugly disease. Since I'll be turning 58 myself in about six weeks, your mom's situation definitely hits home with me.

  7. #7
    Luth, I know that you all had placed strong hope in this clinical trial. As Winston Churchill said in one of my favorite quotes of his "Never, never, never, never give up." We have that saying in Ryan's room. The long version is even better:

    Never, ever, ever, ever, ever, ever, ever, give up. Never give up. Never give up. Never give up."


    "The pessimist sees the problems in every opportunity. Whereas the optimist sees the opportunity in every problem"
    "Never give in, never give in, never; never; never; never - in nothing, great or small, large or petty - never give in except to convictions of honor and good sense"
    http://www.neverevergiveup.com/
    "The distinctive mark of the Christian, today more than ever, must be love for the poor, the weak, the suffering." Pope John Paul II


  8. #8
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    Breaks my heart, Luth, you and your family are definitely in the thoughts and prayers of mine. And yes, what Winston said.

  9. #9
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    Lost my Mom to it 2 years ago. We watched her slip away for almost 20 long years. Many prayers your way, my friend.
    I used to have superpowers.....but my therapist took them away...

  10. #10
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    Luth,

    Lost my father eight years ago after his eight to nine year struggle with Alzheimers. One of the many lessons I learned that I will pass on to you here, though it sounds like you may be well aware of it, is that it is just as important for the children of the Alzheimers patient to care for the spouse of the patient as it is to help care for the patient. My mother almost died herself trying to care for my father. My two brothers and I almost had to physically force her to give up her being his only caregiver and allow his care to be shared with professionals in facilities that could provide the level of care necessary. And even if your mother is not to that point yet, and hopefully never will be, it is never too early to make sure you are well aware of your father's health through all of this, too.

    My thoughts are with you and your parents. Godspeed.
    "Those mothers would rather see the country go down in flames than let the times change."

    -- Samuel L. Jackson

  11. #11
    Thanks all. Your thoughts, prayers, and support have meant the world to me these last number of years.

    Cardinal, your point about caregiver health is so important, and is a piece that often is forgotten. Just last week, my mom began going to an adult day care facility 3 times a week for 4 hours at a time--that sort of respite (or just the chance to take care of things around the house without having to worry about what my mom's up to) is huge for my dad. My sister and I have been talking about this for some time--my dad does SO much for my mom, and as the disease progresses, it's only going to get more labor intensive. This last year especially have seen a lot of changes in her, and the more changes come, the faster it goes.

    I'm thankful though, because with the first step my dad has taken with having part-time care for my mom, it will make it that much easier when the time comes (probably not too horribly far from now) where she will need more intensive, skilled care. Not easier emotionally, but easier to accept the help and understand that he's not abandoning her, but is being the best husband he can be.

    My dad and I are about as far apart on most issues as two people can be, but he's my freakin' hero.

    "Always be ready to make your defense to anyone who demands from you an accounting for the hope that is in you; yet do it with gentleness and reverence." 1 Peter 3:15-16 (NRSV)

  12. #12
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    I'm at a loss for words..hang in there and never give up hope.....God be with your mother and your family....
    Notre Dame only had one Rudy but Nebraska gets a new crop of Rudys every season

  13. #13
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    Quote Originally Posted by LutheranHusker View Post
    Thanks all. Your thoughts, prayers, and support have meant the world to me these last number of years.

    Cardinal, your point about caregiver health is so important, and is a piece that often is forgotten. Just last week, my mom began going to an adult day care facility 3 times a week for 4 hours at a time--that sort of respite (or just the chance to take care of things around the house without having to worry about what my mom's up to) is huge for my dad. My sister and I have been talking about this for some time--my dad does SO much for my mom, and as the disease progresses, it's only going to get more labor intensive. This last year especially have seen a lot of changes in her, and the more changes come, the faster it goes.

    I'm thankful though, because with the first step my dad has taken with having part-time care for my mom, it will make it that much easier when the time comes (probably not too horribly far from now) where she will need more intensive, skilled care. Not easier emotionally, but easier to accept the help and understand that he's not abandoning her, but is being the best husband he can be.

    My dad and I are about as far apart on most issues as two people can be, but he's my freakin' hero.
    Well, I'd say one issue you're obviously in complete agreement about is the marriage vows - "for better or worse, in sickness and in health, until death do us part." Good for your dad - and good that he's started getting the help that he so strongly needs to cope and make sure his needs are seen to also.

  14. #14
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    Sorry to hear the news. My families prayers are with your family.

  15. #15
    Wow...never thought things would move this fast. It's become apparent that my mom needs to be in skilled care very soon, and this morning I accompanied my dad as we met with folks at two different possible places (while my mom was at her half-day daycare). The first had a memory care unit but it was an assisted living unit, not skilled care--very quickly, I discovered that my dad's already been providing more care than what they would. The people we talked to were surprised that my mom was still at home. The second place was a skilled care unit, based on a relatively new cottage concept...while it was pretty apparent that's what my mom needed, it didn't stop us from crying in each other's arms on the sidewalk outside after the visit was done.

    It's the right thing for her, it's the right thing for him, but man does it suck.

    And while I'm convinced that this could never ever EVER be any part of a loving God's plan, I'm even more convinced that God is walking beside us, crying with us, and promising us that there is nothing in heaven or on earth that will ever separate us from God's love or cause God to leave our side. I know we are not alone, and more importantly that my mom is not alone.

    If you know the tune "Finlandia," this hymn is sung to that tune:

    WHEN MEMORY FADES
    When mem’ry fades, and recognition falters,
    when eyes we love grow dim, and minds confused,
    speak to our souls of love that never alters;
    speak to our hearts, by pain and fear abused.
    O God of life and healing peace, empow’r us
    with patient courage, by your grace infused.

    As frailness grows, and youthful strengths diminish,
    in weary arms which worked their earnest fill,
    your aging servants labor now to finish
    their earthly tasks, as fits your mercy’s will.
    We grieve their waning, yet rejoice, believing,
    your arms, unwearied, shall uphold us still.

    Within your Spirit, goodness lives unfading.
    The past and future mingle into one.
    All joys remain, unshadowed light pervading.
    No valued deed will ever be undone.
    Your mind enfolds all finite acts and off’rings.
    Held in your heart, our deathless life is won.

    "Always be ready to make your defense to anyone who demands from you an accounting for the hope that is in you; yet do it with gentleness and reverence." 1 Peter 3:15-16 (NRSV)







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