I Read the News Today, Oh Boy, Oh Boy, Oh Boy!

     Did you see the article in today's paper? On the TV news? On the Internet?
     It should have been, as far as I'm concerned, a banner headline story on page 1, the Libya news notwithstanding. It ranks right up there as one of the most exciting news stories I have ever read.
     "Researchers Say They've Found Common Cause of All Types of ALS," says the headline in HealthDay News. "Northwest Study Unveils Clues to  Cause of ALS," says the Chicago Tribune. "Mutations in UBQLN2 cause dominant X-linked juvenile and adult-onset ALS and ALS/dementia," reads the headline, with far more technical detail but way less zing, in Nature, the International Journal of Science.
     Any news about ALS research is cause for attention. Any news about positive developments is cause for celebration – and this news is confetti, fireworks, candles-on-the-cake celebration material, indeed.  This news could change the whole game plan for ALS study. It could – and I can barely bring myself to write this – lead to a cure.
     A research team at Northwestern University's Feinberg School of Medicine, led by pioneering ALS researcher Dr. Teepu Siddique,  has discovered a single biological process that links all forms of ALS:  a flawed protein recycling system in brain and spinal cord nerves. Without efficient recycling of the protein building blocks, neurons become severely damaged because they can't repair or maintain themselves. This causes the nervous system to slowly lose its ability to carry signals to voluntary muscles, depriving the ALS patient of  the ability to move, talk, swallow and breathe.
     "This is the first time we could connect it (ALS) to a clear-cut biomedical mechanism," Dr. Siddique said in a press release. "It has really made the direction we have to take very clear and sharp. We can now test for drugs that would regulate this protein pathway or optimize it, so it functions as it should in a normal state."
     In a normal state – doesn't that sound wonderful?  Wouldn't it be awesome, in the true sense of the word, if that were achievable? Doesn't it shine a real light of hope on this dreadful, deadly disease?
    For the first time, researchers understand what happens at the cellular level to cause ALS. When you discover what goes wrong, says a researcher at the National Institute of Neurological Disorders and Stroke, only then can you design drugs to make it right.
    So start designing. Immediately. Without delay. Right now. 
    Please…
   
   
      

The Mother-Daughter Talk

     What am I going to do about Mother?
     She has suffered a series of small strokes, leading to aphasia and dementia. Years of severe rheumatoid arthritis have left her unable to walk. Although she recognizes us, family members, friends and caregivers, she lives largely in her own little world.

Mom w/ great-granddaughter, 1996

     It's mostly a happy world.  She is cheerful and friendly.  She loves all the staff at the nursing home where she lives – and they all love her.
     But Mom's world is often several steps removed from reality.  It's never clear if she really understands what you're saying to her.  Her attention span is incredibly short. She doesn't understand and cannot follow directions.  She no longer knows what her call button is for. She falls because she forgets she can't walk and tries to get out of bed by herself.  And while she is mostly happy, she sometimes gets frustrated, agitated and distressed.
     And she doesn't know I have ALS.
     That's not because of any of her problems. It's because of my problem – I haven't told her yet.
     I don't know how. I don't even know whether.... Right after my diagnosis, we decided (myself, my husband and Mom's caregivers) not to tell her right away. My symptoms weren't too obvious, and we wanted to avoid upsetting her.
     She would have been upset, that's certain.  She has already lost one daughter – my sister died in a car crash 15 years ago,  and it nearly destroyed Mom. She said she couldn't imagine anything worse, or more unnatural, than for a parent to outlive a child.   So how can I tell her that she might now  outlive one more?
     I have to. I can no longer hide the fact that there is something physically wrong with me. I can no longer pretend that she doesn't deserve to know. I can no longer ignore the way this pretending is taking a toll on me. I know I have to tell her – I just don't know how.
     I don't know how she'll react. Will she get distraught and agitated and tearful? Possibly. Will my words just roll by unrecognized, their import unabsorbed? Probably. Will some last little bit of my "real" mother appear to hold me and comfort me and share our sorrow?  No.
      That probably explains my reluctance better than anything else. I want the comfort only a mother can provide. I wanted her to pat my hand and say " There, there" and wipe my tears. I want my "real" mother back.
      And I want the real me back, too.

On the Downward Road

     I recently took a turn for the worse, seemingly sudden, difficult and disturbing. It was partly physical, largely emotional, a one-two punch that laid me low. My rose-colored glasses broke into pieces, left behind in Maine, New Hampshire, New York. My post-vacation euphoria burst like a bubble, dumping me deep into depression.
     Luckily, it was not a permanent deep depression, not even terribly long-lived. Bt while it lasted it was piercing, painful, and devastating, for both me and my husband. And the physical changes remain, taxing us both.
     It seems that I lost so much, so very quickly.  I lost so much strength. I lost so much dexterity. Things that I could do on vacation I can longer do.  Help I didn't need on vacation I now need – desperately and constantly.
     I can't wash my hair: Scott has to help every time. I can't dress myself at all: Scott has to do it. I can't pull up my blankets: Scott has to rouse himself from sleep to get me to bed. I can't control my hands well enough to eat more than a few bites: Scott has to feed me. I can no longer pour a glass of milk or get the crackers out of the cupboard or find a slice of cheese in the fridge: Scott has to get them for me. I am no longer steady on my feet: Scott has to help me into my brace every time we go out. And if we're going to cover any amount of ground I get winded and weak: Scott has to push me in a wheelchair.  I'm not driving: Scott has to do it all.
     So there's the problem, physical and emotional all together. I'm doing less, my husband is doing more, and though he handles everything with kindness, love and good grace, I know it wears on him. He has health and pain issues of his own.
     So sometimes I feel hopelessly guilty. I feel like a burden. I feel useless. And when Scott assures me I'm none of those things, I somehow feel even worse.  There lies depression.
    And here's another problem. Sometimes I try to pull myself up out of the pit by thinking of things I can do, things I would like to do. I can still observe. I can still enjoy fun things happening around me. I still like to go places and enjoy events.  But these are not things easy or enjoyable for Scott, because of his pain.
     Then I flip the emotional coin and get selfish.  Suck it up, I scream in my head – I'm the one dying here.  There lies anger.
    Then selfishness and guilt unite, and I'm left with depression again.
     But as I said earlier in this blog, the deep depression was not long-lasting.  We are not always trapped by my needs and my guilt – far from it .  We enjoy each other's company so much.  We laugh and joke and talk seriously and work as a team. But sometimes things just heat up and boil over into frustration, hopelessness, resentment, hurt.
    That's not us, though. That's this damned disease.
    Oh, how I hate it.

Lost and Found in New England

I just had the most wonderful vacation – wonderful because of the time spent with family and friends, wonderful because of the beautiful scenery, wonderful despite all the challenges and problems.

That it was probably my last major excursion – definitely my last time traveling alone – made it very special and particularly memorable. That it was a bucket-list bonding trip with daughter Kay moved it beyond special, beyond memorable, to pretty darned near perfect.

Now, "perfect" when traveling with ALS is far different than "perfect" under other situations. With ALS, it means help from strangers at airports and on airplanes. It means carefully and successfully choosing foods that can be eaten with gimpy hands. It means easy walks instead of stimulating hikes. It means packing a ton of assistive accoutrements, like fat-handled silverware, a suction-cup shower safety bar, a portable raised toilet seat, leg braces, easy-on, easy-off clothing.

Above all, it means Kay.

I would not have taken this trip without her. It was her idea, months and months ago, to take a road trip to Maine: I would fly out to Western New York, where she lives, we'd jump in her car, and off we'd go. I could not have taken this trip without her. Besides being the world's best traveling buddy (oh, we do love the same things!), she was a kind, comforting, good-spirited companion and helper.

Even when I got us lost. Even when this damned disease made me short-tempered. Even when I was incapable, needy, and more than a little trying.  She took everything in stride, making it seem like the most natural thing in the world to wash my hair, help me on stairs, get me dressed, feed me when my hands gave out.

But this trip was not about my infirmities, and it certainly wasn't about turning my daughter into a home health care aide. It was about finding a new and special rapport with each other – which we did. It was about sharing a bond of love – which we did. It was about finding fun – which we did with gusto.

We found my friend Cynthia and her colorful New Hampshire house, complete with in-the-trees sleeping porch and Napa Valley kitchen. We found "Antique Alley" and crafts cooperatives. We found great restaurants. We found towns full of history, scenery, and… shopping! We found some very strange lodging (do not, repeat not, believe all the pictures you see on Internet travel sites). We found spectacular sunsets. We found lobster – steamed, boiled, broiled, whole, in pieces, in sauces, soups, rolls, on pasta, on salads: any way it can be eaten, we ate it – and I give a hearty thank you to those restaurants that served nice big chunks of lobster… out of the shell.

We found Acadia National Park, a place of true beauty and, despite its busy-ness, serenity. We found the free (and green!) shuttle buses that take you nearly anywhere in the Mount Desert Island portion of the park. We found the little boat that takes you to islands and inlets, a lighthouse and an osprey nest (and with great people to help me in and out). We found Jordan Pond, Mount Cadillac, and the famous Acadia pink rocks that look just like the ones I painted from imagination months and months ago. We found that I rate a free National Parks pass for the handicapped – now there's an ALS silver lining. We found that we could have spent several more days, even weeks, exploring this lovely park.

We found Saratoga Springs NY and the opening day of horse racing – on the hottest, most humid day of the year. We found ourselves wearing our fancy hats anyway. A bucket list is a bucket list.

And I found wonderful, valuable, important time on either end of the road trip to spend with my delightful grandchildren and my very special in-laws. Not enough time, true, but wonderful, valuable, and important nonetheless.

So that's what was found. What was lost? One pair sunglasses. One stick-on grab bar. $27 at the track. More of my strength. More of my dexterity.  A whole lot of my personal inhibitions. Some of my fears. Some of my plans for the future. Some of my bucket list goals – a few because now they've been fulfilled, a few because I know that at this stage of the ALS game they never will.

Some of the "lost's "are inconsequential. Some make me sad. Some make me proud. All are trivial when compared with what I found on this trip: adventure, beauty, memories, hope… and love.