You cannot tell the content from the title

They no longer come in and couch their findings from your last trail of tests. They don’t say we have bad news and good news. They come in, stoicly dressed in professional whites, and flip past the latest tests, recommendations of the other physicians on your team and, with a hair flick, dismiss them with a sigh. “No, I do not believe you have Lewy Body rather than Picks.” Check. “But,” I stumble out, “Dr. A said it could account for the poor sleep and bad dreams, even the frightening dreams.” “Whatever,” she responds. “BUT I say a bit louder, those nightmares, hallucinations get so bad I can’t sleep for up to 72 hours.” Again, a flick of her hair, a dismissal over her glasses. “No.”

It really is just to define her belief in my stories, or his testing that offers a treatment. “No. We are not going there.” But insomnia for 3 days & nights? “No, that is not where I am going.”

She flips thru the PET scan, the MRI and tells us nothing. Mumbles, “This is not good. Not good at all!!” and excuses herself from our room. There I am with daughters Beth & Andrea, and she removes herself from us to consult. “Not good, not good at all!,” she reports. WHAT THE HELL IS NOT GOOD??!! I think you not only display symptoms of Parkinson’s but ALS, you know ALS?” We nod, “Lou Gehrig’s Disease”. Yes. Swiftly she begins writing a note to schedule yet again one more series of tests.

“Does that mean I will die with my body and muscles and mind deteriorating?” “I don’t know,” she says, “but it would explain your ongoing weakeing of your limbs, breathing harder.” It may be you will just take on the same odd tremble you have from Parkinson’s … anyway I cannot tell you more until we get the tests.”

The tests will be done in 2 weeks. She cannot see me until the end of January.

A year ago, when she told my family about FTD, she said 3 things: Typically you will have 2-8 years to live; contact a hospice; and while you are still congnizant find a home to move to. It took us 2 months to hear back from her after the tests had been taken. Every day that I woke up I said thank you.

Now, right after my 1 year anniversary, she puts me out 6 months to find out what is happening in my brain. Will I live like Lou Gehrig, in a wheelchair, air tube in my throat?

I make this appeal to all physicians of terminal patients: don’t lose precious time. It may be the best we will ever have waiting for you to vaction, take classes. By the time you get back to us, we may no longer recogonize anyone. My IQ drops periliously each year. My cognitive recognition is only 14% from nothing.

It may not be much, but it is all I have. Would it be better for you, AFTD, and all those who study this disease/dementia to just have us go quietly into that good night, than face us, helpless and without hope?

I am in the autumn of my life. I am resolved I won’t see spring. And you are largely responsible for that attitude.

I hope you find peace in the crushing of hope you leave behind each one of our visits…

Papa, Papa… I just don’t know any more.

Butterfly FullCycle 600w2

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10 comments

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  1. Unclearly, or clearly I am moving into another stage of this disease. And I do understand that of all the challenges to medical science, FTD, seems to taunt the greatest scientists and doctors. But it is inhumane to hold the information the family needs, knowing each unattended second sends the sufferer further and further away from all they love.

    I pray that the new findings of the NFL and FTD will remove us from the category of “Salem Witches”. I wish someone had studied the ability of communications from when first diagnosed to when we stop. And what make us turn into ourselves?

    My guess is all the time the physicians think they have to come back with a perky answer, or write a new paper. Don’t they know we are “dying to have the information they scurry about with.” And I know should we pass, it would be just so much easier. But…not for those whom we love.

    Blessings, Vicki. Pray for us all.

    1. I feel your distress, Vicki, and wish I had a magic wand to make everything good again – better than ever in fact. I share your frustration and add my bewilderment at the ways these doctors have been treating you, and those you love. Whatever the causes for their apparent lack of compassion and understanding, the toll they take on you and and your loved ones is cruel and unjustifiable. And we know there are so many experiences like yours.

      At so many stages of your disease(s), you’ve had a need and expectation for answers and information from the medical “experts” who should be on your side. Especially now, in the midst of important new test results, you deserve the most compassionate care from everyone on your team.

      Another dark cloud is passing over you these days, hiding the sun as Fall begins. But bright colors will soon be filling the landscape as the leaves put on their brilliant display. But this is a moment of solitude, a time to search for Papa’s voice and presence. And my thoughts and prayers are with you every day and night.

      My Dad was a doctor, and even though in his specialty he rarely had patients who were terminally ill, he always struck me as a compassionate doctor. He conveyed a genuine sense of caring about and for his patients, and he know most of them by name.

      We need to pray that the scales fall from the eyes of many medical experts and physicians so they see and empathize with the patient whose life is ending and is in need of hope and care.

      Blessings to you, Vicki. I’m praying for all of us.

      • Bill Merriman on October 5, 2010 at 4:43 pm
      • Reply

      Vicki,

      Fran told me about your recent diagnosis. I have had ALS for 13 years. Before the diagnosis I had signs of it about three years before. I think I know what you are going through. When I told my daughters, via phone, we cried for about 30 minutes before we got under control. It was a good cry for it was a cleansing experience..

      I have written a great deal about these last 12 years with hope to write a book. I am willing to share some of them with you.

      I call ALS a designer illness. It is not the same for everyone of us. Don’t you believe everything you read about or hear about ALS. It may, or may not, be the same for you.

      I am one of the lucky PALS (Persons with ALS), I hope you are also!

      Bill (Willis) Merriman

        • Vicki on October 11, 2010 at 12:52 pm

        Bill, I think I confused you with Phil, but the point is still the same. A strand of hope can make all the difference.

        How have you coped? Not mentally jumping ahead to the inevitable?

        I worry when I will be taken from my home and put into a home (I prefer ‘house’) to handle my care as I melt into my future self.

        I will re-read this over and over again. And will send to my cousin. I like taking the road named “Hope…” It beckons to me.

        Blessings, Vicki
        Papa? Are you listening to us?

  2. I don’t know who you are, Vicki, (laughing because it must have prompted me as the reply – and that’s good. A nice change from shock & tears.)

    I will take your blessings and wrap them around me like a coccoon or grandma’s quilt, to replace the arms that cannot be here to hold me – hold all of us, in this foreign territory. You are in my prayers. Each tear is a prayer for all of us and our families.

    My courage is wavering right now, and fear is all around me. One would think God would have me look sexy in my last days, wouldn’t you?? I’ve met many people in good bodies with very little upstairs, lol. But whatever cross I’ve chosen to carry, it’s the whole 9 yards.

    Love, Vicki
    Papa, we need a hug

  3. Papa hears you, Vicki, and is hugging you right now.

  4. Vicki, I love the song that Jim posted – knowing that Papa loves you as you are, with a love that takes away fear and uncertainty and is always there, every second of every minute, even when you don’t feel it. I can’t understand how those who are supposedly “caregivers” can appear so insensitive.

    Once again I wished we lived closer together so we could share a Timmy’s and a donut.. well, it can be a virtual coffee and donut for now!

    Praying for you every day,
    Judy

    • Paul Chernoff on October 4, 2010 at 12:47 pm
    • Reply

    Being a patient requires a lot of patience. When my wife had her bicycle accident. It took some time to notice that problems were developing, the emergency room doctor never told us that the major damage after a TBI can offer weeks after the accident. Then seeing one doctor who refers us to a neurpsych, waiting for that appointment, then making an appointment for the testing, and then waiting another month for the results of the test (though I was told that she should stop driving the day of the test, she did that poorly). Then a year after the accident she wasn’t improving which then led to more doctors and more waiting and eventually to the FTD dx.

    Why so long? I think the biggest problem is not enough qualified doctors and too many patients. The top doctors have to balance seeing patients with doing research.

    And the frustration of the doctors imply not knowing. Even on easier to diagnose and treat conditions such as congestive heart failure (been there with my father) different doctors will prescribe very different medications.

    And not all doctors are good communicators. Neurologists have a poor reputation.

    What I would love to see is the doctor being able to hand us to a Social Worker familiar with our challenges to help us take the steps we need to make while waiting for the medical people to do their thing. Unfortunately what the help doctors can provide is limited, the help from a Social Worker familiar with FTD could be invaluable.

    1. Paul, just you responding has given me hope. I’m still cranky with God. Does that happen to you as well??

      My cousin was recently diagnosed with ALS, having lost her father & brothers to this wretched disease. I am grateful to Fran for contacting you. I like the acronym – PALS – so hopeful and optimistic! I will forward to her.

      Love to you and Fran, and please, please stay in contact with me, OK?

      Blessings, Vicki

    • Fran on October 4, 2010 at 8:30 pm
    • Reply

    Vic,
    My cousin Bill has Lou Gehrig’s. Docs are sometimes idiots. Bill has lived double what the docs told him he would live. He follows a special regimen of nutrition. His email address is hatfrdcasa@aol.com if you would like to contact him. I prayed for you today and everyday. God isn’t done with you yet young lady! Fran

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