Before and After

A Supporter in California writes. . .

2009-09-07T20:19:00.002-05:00

Here's how I came to learn of you and your organization: Last October, I finished a workout at the gym and noticed that my calves were twitching. I shirked it off to a new diet regimen I was embarking on, and thought nothing of it. But the twitching didn't stop. Other parts of my body started twitching, and I began to get a little worried. A quick search on Google described the possibilities, which included ALS. I spoke with a physician friend, who suggested I increase my magnesium and potassium, which I did. No change.

I tried cutting out alcohol and caffeine. No change. The twitching continued, and I started to get a little more worried. I made an appointment with a neurologist... blood tests, MRI's, physical exam - and was told if I didn't develop weakness within 6 months of the start of the twitching, the chances that it was ALS were minute.

And so I watched and waited, scared out of my mind that one day I might get out of bed and feel a little weaker than I did the day before. Any slight hitch in my step I feared might be the beginning of foot-drop.

I spent hours online looking at ALS websites, blogs, message boards, etc. looking for information. I was terrified to learn of others whose ALS started with similar symptoms to mine. I had no idea what a horrible disease ALS is (I don't think many people know), and how quickly it moves. I was horrified. One web link led to another, and eventually I learned of your son, Eric Fox, Jim Reimer, and Josh Thompson. I knew nothing of what PALS went through before this, and wept as I learned how it devastates people and their families. Cancer seems like a cake walk compared to ALS. Then I watched the 60 Minutes interview that Ben referenced in his blog, and was sickened by what I saw. That guy is sailing around on the world's largest yacht with the profits made, in part, from disallowing access to a drug that helped your son and could help others. Disgusting.

More than six months have passed, and I've not developed any appreciable weakness, so my neurologist has cleared me of ALS. Diagnosis: Benign Fasciculation Syndrome. I'm very happy for that diagnosis, as I can live with twitching muscles. I'm also very appreciative that those months of fear and uncertainty gave me a chance to learn more about ALS and those that suffer from it.

While I was waiting for a diagnosis, I learned that some PALS, like Ben, benefited from Iplex, and I took some comfort in the fact that at least Iplex was available if I were diagnosed. Now I hear that Insmed recently announced that they'll not provide Iplex to new patients, and only have enough stockpiled for two years for those currently taking it. What is wrong with these people?!? This potential lifeline for PALS is gone and I'm absolutely sick for those that had hoped to get it and now can't.

Are there plans for another Team Iplex march or movement to make Iplex available again? I'd be happy to help, if I can. What happens when the two year supply of the drug is gone? Something about that stinks of corruption. I'm glad to learn that at least some progress is being made on the stem cell front.

Road Trips

2009-08-18T21:53:00.001-05:00

I started talking about taking a road trip in our convertible last spring. I thought it would be a good way to say goodbye to our red roadster since we’d decided to pare down to one car and economize. We rarely both need the car at the same time. The Solara is bright red and kind of flashy, while the Prius is clearly the more practical vehicle, even if it is a somber gray. Time to buckle down and face the fact that we’re not teenagers anymore.

We planned to drive east, swing up to Michigan for a day, across to Massachusetts, down to New Jersey, up to Connecticut, down to New York, over just a little to Virginia Beach and end up in North Carolina. As the trip grew from two to three weeks, I realized we’d planned the kind of trip Ben would have created, saying no big deal, what’s another 400 miles north or south. When he was well, he’d throw a bag in the trunk and take off to see a friend, camp in the mountains, ski down a hill. Those last few years, he traveled more by car, plane and train than most manage in 50 years. Maybe I wanted to have a taste of what he enjoyed so much.

We spent a few days with friends we've known forever and then a few more watching our grown up grandchildren swim and play tennis. Those last few days before we headed home were filled with toddler grandchildren's giggles and sloppy kisses. In between, stopping points coincided with ALS patients, many of whom are taking Iplex. We talked about how they were doing and what effects they’d noticed. Mostly we soaked up the sun, shared a meal and spent time relaxing together. Connected by a heartless disease and yet, there we were, enjoying our friendship, sharing a joke, talking about politics and sports. An unexpected but most appreciated blessing.

And then one sunny afternoon, driving along the beach, we both said, “let’s keep the convertible.” Maybe it’s a wish to recapture what’s been lost or to avoid looking straight into the future. All I know is those three weeks were just what we needed.

FOOD FOR THOUGHT

2009-07-19T10:07:00.002-05:00

Merlin Stone in her wonderful book, When God was a Woman, writes about the barbarians coming down from the mountains and inflicting brutality on what was once a peaceful, loving, egalitarian community. To me, ALS is one of those barbarians, inflicting destruction on the entire household, but especially on the family dining experience. Recipes, menus, food preferences are all up for grabs as whole new techniques and information must be learned anew.

Food consumes the days of patients. Those caring for them have to learn whole new routines, menus, preferences and techniques. Recipes that once focused on taste, preparation and presentation are no longer useful. Nutritional values based on lowering calories for weight loss need to be replaced by those that contain high caloric counts to foster weight gain. Emphasis shifts to texture with just the right consistency to avoid choking or sticking to the roof of the mouth or weighing too heavily on the tongue. Taste still matters because if the meal isn’t enjoyable, what’s the point?

I once tried to make an Italian meal with soy cheese instead of ricotta, thinking this would be a treat. Instead, the entire dish turned into a glutinous mass that was neither tasty nor edible. I cut fruit into pieces so small I could hardly skewer them onto a fork and still chewing was a challenge. Small grains of hamburger or rice can sometimes cause choking. Soup can be too thin and watery. Even water, a health necessity, can be challenging whereas tomato juice easier to swallow. Dairy increases phlegm making soy or rice milk products preferable. Six small meals a day can help keep weight on and are less exhausting making preparation and clean-up a fairly constant occurrence. Since thick liquids are easier to swallow than thin ones, it’s helpful to put everything possible into a shake – protein powder, fruits, veges, soy ice cream – an all in one caloric extravaganza that’s delicious.

Dinner conversation, once a pleasurable part of the dining experience, is a distraction an ALS patient cannot afford. It takes excessive concentration to chew and swallow leaving no room to listen to what someone is saying at the same time, let alone commenting. Any distraction can provoke choking so silence becomes the best option.

Wanting others to avoid traveling these same paths, I thought it might be a good idea to share some information. Some of this is on the web site under Self Help, but I hope you’ll participate in this opportunity to share recipes, ideas and thoughts about food preparation.

Hope to hear from you,
Barb

When Things Fall Apart

2009-07-07T15:11:00.001-05:00

I wonder how many moms, like myself, find it difficult to push ALS out of their minds so they can enjoy a day with their grandchildren or celebrate a child’s birthday fully and in peace. I can tell you truly, Ben wanted us to resume our lives, to stop focusing so much energy on him, to be a parent to his siblings and enjoy our grandchildren. But that sense of urgency at our backs was ever present. We had to move quickly to discover the answer that had to exist on this planet somewhere. Time and energy spent elsewhere was precious time lost. It was like a race with no finish line.

I don’t think it’s possible, once ALS strikes, to return to any sense of normalcy experienced in the past. Rather, we all need to move forward into a new sense of existence that includes ALS and all the encumbrances that it brings. There is no returning to what was, only embracing what is.

I particularly like Pema Chodron’s book, When things Fall Apart for its vision and philosophy, a gift our daughter Sarah gave me when the black hole had half swallowed me. It’s a book to be read slowly, a few pages at a time. Pema’s message is simple, the implementation of it more complicated. Let everything, the good, the bad, the bitter, the sweet, pass through you. What does that mean? You have to read the book and listen to her CD’s to gain insight into her belief system. But it’s worth the time. Because as much as we hope for good health, security, peace, love and charity, life is filled with shock, pain, disappointment, fear and adversity. The form and texture may change for each of us, but no one escapes.

ALS has settled into a niche between my heart and my fourth rib. I expect it will remain there for the duration. I’ve become intertwined with patients and their families in a way I never thought possible. I understand their grief and their hope on a level too deep to measure. The work for ALS WORLDWIDE keeps me energized and fulfilled in a way I never imagined possible and has become a transformative life experience.

2009-06-03T17:42:00.000-05:00

SHARING LIVES

For as long as I can remember, I've measured events in terms of before and after. As in before my first child was born, after my marriage, before Matt left for college, after the first grandchild was born. I can vaguely remember life before Ben's diagnosis, when a crisis meant a broken leg, a failed test, a lost marriage. I chalk it up to my sense of innocence or my childlike belief that bad things don't happen to good people, despite the title of Harold Kushner's book. They do. The question is not how to avoid treacherous events, but rather what to do if and when they inflict themselves into our lives.

I believe talking about the issues each of us confront in the face of ALS can be helpful. The given here is that we are each caring for or grieving the loss of someone we love to ALS. The question is how do we take care of ourselves, our children, our parents in the face of such overwhelming angst. How do we make time for our own lives, fulfill our dreams, maintain relationships and not collapse under the weight of the oppressive truths we face each day.

I invite you to participate in Before and After, here to give voice to your concerns. Write a story, perhaps, about how you cope each day. Ask a question that other readers might be able to answer. Share an insight you’ve uncovered. Together we can find some answers, share concerns and seek support - all of which, in the end, is all we can do. Your comments, questions, thoughts, attitudes, ideas, suggestions – all are welcome and appreciated here.

Sign up so that when new postings are made, you'll be notified. Together we can lighten the weight and lift our spirits.

I hope to hear from you soon.
Barbara