New Year's Resolutions – in October?

            As I commemorate the start of a new year, it seems a good time to look at the past year and launch some resolutions.

            A new year? Resolutions? Really?

            Really. For me, anyway. Today is my birthday, and I celebrate making it through a difficult year, one full of the challenges and problems of ALS: I have lost dexterity and abilities and independence; I have felt nearly unbearable depression; I have railed at the unfairness of it all; I have put a heavy burden of care onto my husband’s shoulders. But I have made it through, and have found elusive but very real cause for celebration: the knowledge that I can face dire challenges and adapt and overcome; the wonderful, invaluable support of husband and family and true friends; the companionship and understanding of other pALS; the hedonistic luxury of having someone wash my hair every day.

            The coming year, I'm afraid, may bring fewer reasons to celebrate and more reasons to rail. There are, after all, reasons why ALS is called "degenerative" and "progressive." But there are also reasons to look for the best while acknowledging the possibility of the worst. That is pretty much, I think, what New Year’s resolutions are for – and why my resolutions are taking form as an examination and re-evaluation of my Bucket List. The bucket is still pretty full, but it's time to apply some ruthless practicality to the contents.

            1 – See all my grandchildren. Two vacations, one to New York and one to Minnesota, fulfilled this wish. I was able to spend invaluable time (too little, but invaluable) with all the wonderful grands. I discussed college plans with the oldest. I watched the first wobbly venture on skates of the youngest. I chatted and read and played games and looked at pictures and took pictures with all of them. And I wept bitter buckets, knowing I will not get to see them grow up. I hope they will remember me, and know that I always, always love them.

            2 – Travel. This item on my bucket list needs lots of editing, but it still is a resolution.

                        2 A – Europe and points beyond. I would love to visit London, to see Paris. I have wanted, for years and years, to spend time in Italy. Turkey, India, New Zealand… So many places call me – and I won't go. Long-distance travel has become just too difficult and too tiring, both for me and for Scott. So we cross this off the list, and watch lots of Rick Steves on PBS.

                        2B – See an Alaska glacier. Another no-go, I'm afraid, for reasons mentioned above. Oh, I know that lots of large luxury liners have excellent handicapped accommodations – but a large liner is not what I want. I want a small ship cruise that gets up close and personal with the land, the animals, the people… and the glaciers. But small ship cruises, both the ship and the activities, are far too adventurous for a couple of old gimps. Good-bye, glaciers.

                        2C – Local trips and mini-vacations. I know that any kind of travel is hard for Scott, even a day trip to the City. But I am so terribly loath to give up the wonders and beauty of in-your-own-back-yard visits. I want to see the wildflowers at Anza Borrego. I want to eat oysters at Tomales Bay. I want to spend Christmas somewhere that isn't home and doesn't carry so many memories. I think we can do this – at least on occasion.

            3 – Get my tomato book published. The book is done, the submission material is written, and one try has already been made – and I have the rejection letter to prove it. Now what I need is better research, tighter formatting, and lots of big envelopes. Get off your duff, Peggy, and do it!

            4 – Have an art show of my ALS paintings. As with the tomato book, this is a project partially done and left hanging. I have researched Bay Area galleries and obtained submission guidelines, I've taken photographs and written descriptions,  I've written my proposal letter and artsy CV. It's now time – or past time – to stop planning and start doing. (I really want to do this show as an ALS fundraiser, donating part of my share of sales – and hopefully part of the gallery's, too – to research organizations and the ALSA. If anyone out there knows an extremely altruistic gallery owner in the San Francisco area, please tell me!)

            5 – Volunteer. I would love to do something productive to help the local chapter of the ALSA. I have offered my assistance a few times, with no response. I guess it's time to get a little more emphatic.

            6 – Go to events. I'm not ready to be completely housebound, not quite yet. A baseball game. A football game. The opera. A play. Museums. Parks. Hokey little local festivals. Who is up to going with me? Scott? Debra? Anyone?

            7 – Adapt to my limitations. This is going to be a biggie, in more ways than one.

            It's going to take a big change of attitude. I'm going to need a wheelchair, probably sooner rather than later. And not just a little fold up portable model, but a big Momma super deluxe SUV of a wheelchair with all the bells and whistles that a person with ALS needs. Admitting that need is going to be difficult, making the adjustment, physical and psychological, from walking to wheelchair-bound will be hard. Wheelchair-using friends say a power chair is liberating and gives you great independence… But I just can't see it that way, not yet.

             It's going to be big financially: while Medicare will probably cover the expense of the wheelchair, it's up to us to pay for the bathroom remodel, the bedroom remodel, the ramps, the handicap van – and everything else that will come up.

            It's going to make a big impact on our personal lives. I will need more and more help from Scott, and, as things get worse, from a professional home health aide. I will eventually need a full-time caregiver, so there goes our privacy. There, too, goes a lot of our money. And there go a lot of items on this resolution/bucket list: if I haven't done them but the time I get to this point, they ain't gonna get done.

            8 – Make my final plans. The will is done, so we can check that off. My end care decisions are all written out and understood by my doctors, husband and family – and, I think, by me. I know what I want done after I'm gone, and so does Scott. All I have left to do is write my own obituaries and worry, ceaselessly and ardently, about my wonderful husband and what he will do when I die.

            9 – Live and die on my own terms, as much as is humanly possible. I will keep running until the final tackle.

            10 – Realize that I am not alone. I will accept, with gratitude, help and support from any quarter. I will try to give support whenever and however I can. I will remember that these resolutions are not only mine, but belong too to my family and friends and, most of all, my husband, whose wishes , needs, limits and aspirations are as close to me as my own.

Been There, Done That, Proudly Wear the T-shirt

Something surprising happened on my recent trip to Minnesota: I joined an ALS walk!

This was supposed to be purely a be-with-the-family vacation, a bucket list visit with the kids and grandkids – and it was, wonderfully so. But, thanks to a hot tip, it also included an opportunity to enjoy a beautiful day lakeside with the family while supporting the organization nearest and dearest to my heart, the ALS Association.

Granted, this wasn't the "nearest" chapter, home-town speaking nor the "nearest" event, ditto. That, the Golden West ALSA bike ride in Napa, was taking place without me there to cheer on the riders. Bummer. So when I heard that the Minneapolis ALS walk was to happen during my visit, I jumped at the chance to join in – well, as much as I can jump, anyway, and as much as I can join.

We (three generations in two cars, along with diaper bag, tote bag, camera bag, jackets, snacks, and a wheelchair for me, which ended up toting the aforementioned bags, jackets, snacks, etc.) arrived at Lake Harriet, a beautiful municipal Park and a favorite for joggers, cyclists, and dog walkers, about an hour before the walk was to begin. And the place was packed! There were pavilions set up by walking teams, live music in the band shell, tents for registration, donations, T-shirts and refreshments, and hundreds and hundreds and hundreds of walkers. This was a really big event. When the signal was given to start the walk, it took nearly a half hour for everyone to pass through the balloon arch.

There were teams walking in honor of friends with ALS, past and present, "pALS" in wheelchairs or on the hoof, old folks, little kids, school sports teams, babies in strollers, and dogs, dogs, dogs. (I think it must have been a rule that only purebreds were allowed: I have never seen so many gorgeous dogs of so many breeds in one place outside a dog show. And all were "Minnesota nice.")

Grandma's support group

And there was me. Not all the way around the lake, mind you – even with my leg brace, I'm a bit too weak and wobbly for that. Not for me the full 3 mile route: more like 300 yards. But I was there, in full support, and so was my family, rallying around their gimpy grandma and the organization that helps her.

(Although I think the kids were more interested in the lake minnows, the balloons, the free string cheese, and all those dogs…)

The walk was a success on so many levels. There was great participation. There were lots of supporters to cheer on the walkers. Even the weather cooperated with beautiful autumn sunshine. And I actually got to be part of an ALS event.

Oh, and by the way, the walk raised $300,000. Ba-da-bing!

PS – Thanks for the tip, Nancy.

Saved by the Brush

            In the midst of my gloom-and-doom, deep blue cloudy depression, one lovely surprise shines through like a bright yellow chunk of sunshine. I can still paint!

            It had been months since I had tried to even lift up a brush. With the ever-increasing weakness in my hands and arms, I was truly afraid to try.  What if I couldn't do it? What if I tried and failed? What if I discovered that one of the abilities that most defines me had been stolen by ALS?

            Well, I could, and I did and didn't, and it hadn't. I am still, mentally and physically, a painter

            Ever since my ALS diagnosis, my painting style and technique have progressively changed, and this new change is perhaps the greatest. I'm still doing semi--abstracted, quasi-Fauvist self-portraits, still using bright colors. But now my brushstrokes are broader, brushes are bigger, colors are blended directly on the canvas, and technical subtlety has gone right out the window. The paintings are still recognizably mine, and they are still a sharp poke in the eye of ALS.

            I now rely on my studio aide – also known as my husband – to position my canvas on the easel (at a much lower height since I can't raise my arms) and lay out my paints (I can't unscrew a cap or squeeze a tube) and wash my brushes (can't do that either). But I figure if atelier assistance is good enough for the Old Masters, it's good enough for me.

            I do have trouble with a lot of other aspects of painting, although by and large I have figured out work-arounds and alternatives. It's hard for me to grip the brushes, so I take hold with my left hand while gripping the brush between my right forearm and thigh, making a decided mess on my pants. It is difficult for me to control the brush strokes, so I experimented until I found that backhand is best – extremely awkward, but best. I am making a lot more of what could be called mistakes, but I don't call them that: instead, they are new interpretations of shape and form. Or some such…

            I know that before too terribly long my hand and arm weakness will preclude even this adapted style of painting and I will have to find some sort of new technique. Maybe it will be the "My Left Foot" approach. Maybe I'll lay the canvas down flat and finger paint. Maybe I'll be a new incarnation of Helen Frankenthaler, pouring on the paint and letting it make its own decisions. Or perhaps I'll get wired up to one of those high-tech visual communication devices that let you draw using just eye movements (amazing but true!).

            And I also know that someday I will not be creating art at all, and a part of me, and important part of me, will be gone.

            But until then I'll keep painting as much as I can, changing – as I change other things in my life – to meet the challenges of ALS. Painting is a release and a therapy and the visual declaration that, no matter what, I am still me. It saves me in more ways than I can say.

Losing the Pieces

I was asked once to describe ALS, and the best I could come up with was this: a continuing series of losses.

You lose strength. You lose dexterity. You lose capability. You lose independence. You lose privacy. You lose, one at a time, little pieces of yourself.

Most of these losses happen gradually, relatively slowly, letting you make changes and adjustments and retain function. You use aids, like fat-handled silverware and zipper pulls and Velcro shoes. You change how you do things: a simpler hairstyle, simpler clothing, painting in big broad strokes –with your left hand.  You need a little more help than normal, and you gladly accept it. You carry on.

Until you can't. All of a sudden, it seems, the aids don't work, the changes are ineffective, and "a little more help" becomes a lot of help – all the time.  All of a sudden, it seems, the hands that were stiff and awkward but, with new tools and processes, functional… are useless. All of a sudden, it seems, the legs that were weak and wobbly but, with orthotics, functional… are useless. All of a sudden, it seems, the voice that was becoming quieter and weaker but was still intelligible… is gone.

And more, and more, and more.

The one good thing – and were really reaching for a silver lining here – is that these "all-of-a-suddens"  don't happen all at once, all over your body. Going away one part at a time is dreadful enough.

As I approach the one-year anniversary of my ALS diagnosis, I am dealing with both graduals and "suddens."  My symptoms first appeared in my right hand, then spread up my right arm. At first I lost fine motor skills, will then gross skills, then the arm was, for all intents and purposes, gone. But I still had my left hand – until it started weakening and stiffening, along with the arm, until now they too have nearly lost functionality.

So the things that I could do while on vacation earlier this summer, just a couple of months ago, I can't do at all: no walking all around town or all through the park; no feeding myself; no dressing myself; no pulling up my own blankets. One day I could put on my own pants, then – hey presto! – I couldn't. One day I had enough strength to get an apple out of the refrigerator, then – poof! – I didn't.  One day my hands and arms were mine, then… they weren't.

Now I face gradual losses in my legs. My right leg wants to buckle and collapse, my right foot wants to drag and threatens to trip me. With a brace-like orthotic, my foot is more stable, but overall strength is disappearing. And on top of that, my left leg has now decided to flag.

How long will they still work? How long can I still walk? When will gradual again change to sudden? I don't know.

And what part of me will be next to go? Don't know that either. I just know that something will.

Because ALS is a continuing series of losses.

And how damned depressing is that?

Telling Mom

I finally told Mother – who obviously understands a lot more than I gave her credit for.

She cried. I cried. My husband cried.

So now she knows. And I feel like shit.

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.