September 9, 2010

Beth’s Gift

Posted in "You're the Inspiration" at 9:21 am by jensalsjourney

Please read this amazing article about a wonderful woman from our ALS community.

July 4, 2010

“You’ve got to ask yourself one question: ‘Do I feel lucky?'”

Posted in ALS Awareness at 2:46 pm by jensalsjourney

July 4, 1939

Fans, for the past two weeks you have been reading about the bad break I got. Yet today I consider myself the luckiest man on the face of this earth. I have been in ballparks for seventeen years and have never received anything but kindness and encouragement from you fans.

Look at these grand men. Which of you wouldn’t consider it the highlight of his career just to associate with them for even one day? Sure, I’m lucky. Who wouldn’t consider it an honor to have known Jacob Ruppert? Also, the builder of baseball’s greatest empire, Ed Barrow? To have spent six years with that wonderful little fellow, Miller Huggins? Then to have spent the next nine years with that outstanding leader, that smart student of psychology, the best manager in baseball today, Joe McCarthy? Sure, I’m lucky.

When the New York Giants, a team you would give your right arm to beat, and vice versa, sends you a gift – that’s something. When everybody down to the groundskeepers and those boys in white coats remember you with trophies – that’s something. When you have a wonderful mother-in-law who takes sides with you in squabbles with her own daughter – that’s something. When you have a father and a mother who work all their lives so you can have an education and build your body – it’s a blessing. When you have a wife who has been a tower of strength and shown more courage than you dreamed existed – that’s the finest I know.

So I close in saying that I may have had a tough break, but I have an awful lot to live for.

June 30, 2010

Play Ball!

Posted in ALS Awareness at 10:38 am by jensalsjourney

This July 4th will mark the anniversary of Lou Gehrig’s famous “luckiest man” speech. Amazingly, 71 years later doctors still don’t understand what causes ALS. There is still no cure and no treatment. People, that just blows!!

Once again this year, Major League Baseball is stepping up to the plate and you can help. Visit this website and pledge an amount for every hit your favorite team gets on July 4. Then root for your team, because the more hits the more money will be raised to kill this beast that has destroyed so many lives.

What could be more American on Independence Day than baseball? Personally I will be cheering for the Amazin’ Mets to get a bazillion hits. Hope you will join me!

June 28, 2010

It’s Good to Be the Queen

Posted in Various Reasons ALS Sucks at 1:35 pm by jensalsjourney

I need to stop thinking of having a total stranger giving me a shower as a humiliating episode and start pretending I’m some sort of ancient queen who has minions attending to my every need.

What happened was my husband had been waking up every day with a pain in his side which turned out to be chronic appendicitis. Solution: appendectomy, a fairly routine laproscopic procedure with one unfortunate side effect: while recovering he would be unable to lift anything heavy for a week. That would be me.

All I can say is thank goodness for the whole referral to hospice episode, which resulted in a month of home physical therapy visits and the acquisition of a hoyer lift, a sort of combination crane/hammock thingie for lifting decrepit people like myself and moving them from point A to point B. Anyway, because of this I had the number of a good home health agency. Did I mention home care isn’t covered by health insurance? Apparently bathing and going to the bathroom aren’t considered medically necessary. Don’t get me started.

Let us draw a veil over the intimate details of the last few days. Suffice it to say that so far it hasn’t been as awful as I feared. On the plus side I’ve had a manicure and pedicure, and the morning aide did my hair in a cute new way. I can’t wait for it to be over, but I need to keep reminding myself: Chris needs the rest, and royalty used to get waited on like this all the time. And I’m worth it!

June 2, 2010

I Thank the Lord There’s People Out There Like You

Posted in ALS Awareness at 6:44 pm by jensalsjourney

So my brothers formed a team for the Walk to Defeat ALS in New York City. They’d done it last year on short notice and raised about $2,000, so this year they set a goal of $5,000, which to me seemed like a heck of a lot of money. But I wanted to help, so I made a page on the Walk’s website and sent an email to a few friends and neighbors, hoping to raise a few hundred bucks. I got my first donation within an hour. I raised $500 the first day.

As the total edged upward each day, what touched me was where the support came from: at first neighbors and close friends, but then people I’d known in high school. Sorority sisters I hadn’t seen in 25 years. People from my husband’s office. A friend of my brother’s who I’d never even met raised over $1,500. Then my mother reached out, and here were neighbors from my hometown, teachers from my high school, cartoonists who’d known my dad. Meanwhile, my brothers, sisters-in-law and friends were all hard at work raising money too. My friend Tricia in particular was born to do this stuff. (She also deserves special credit for calling all over Long Island looking for an accessible hotel room, but that’s a subject for another rant.) In the end we raised over $13,500.

Best of all was coming back to the city I love so much. It was a beautiful day and my family and friends were with me to walk along the Hudson River from the Village to 55th Street. (I couldn’t believe how much the West Side had changed since the bad old 80s!) I was filled with happiness to be in New York and to know that I wasn’t alone. There were thousands of people at the walk and we were all there because we want to beat this disease. And behind each of us there were dozens of people who gave donations or words of support. I don’t know how to say thank you for such a gift. I am the luckiest person on the face of the earth.

This is my favorite song about New York City.

May 20, 2010

This is Your Big Debut

Posted in ALS Awareness at 11:50 am by jensalsjourney

While we were in New York we were interviewed by the local NBC news (thanks Trish and Sharon!). I felt like a big goofball but the kids were SO excited to be on TV!

Click here to see the video.

May 17, 2010

Read It and Weep

Posted in Medical Updates at 3:14 pm by jensalsjourney

Well the word is in and my drug trial was a bust. The drug was found to be safe, but ineffective. Oh well, so much for that! On the plus side, that’s six fewer pills I have to take every day, and no more of that drugged out feeling in the afternoon. Still no word on whether I was on the placebo. The news release is here.

I’ll be back soon with good news and pictures from the ALS walk.

May 1, 2010

May is ALS Awareness Month

Posted in ALS Awareness at 6:06 pm by jensalsjourney

May is ALS Awareness Month. Probably the only people who are aware of this, though, are people whose lives are already affected by the disease.

ALS is not like other diseases that get lots of publicity (and dollars), because it is relatively rare. Not only that, but most people with ALS don’t live all that long, so it’s hard to maintain a critical mass of support. Everyone has heard of cancer and MS and even Parkinson’s disease. Many people don’t have any idea what ALS is. And yet I can’t think of many other conditions that cause more suffering and anguish.

I try to stay positive. I share my story, not because I want sympathy or pity, but so that others will learn about ALS and support research that will help doctors understand what causes this disease and find a way to help us live longer. I really believe the answer is out there, maybe not too far in the future. It may be too late for people who have ALS today. But the more we raise awareness now, the sooner the breakthrough will come.

April 24, 2010

What’s Up Doc?

Posted in ALS Awareness at 10:06 pm by jensalsjourney

Here’s a promo video for the Packard Center for ALS Research at Johns Hopkins, featuring my doctor there, Jeffrey Rothstein.

April 20, 2010

The Flip Side

Posted in Random Observations at 3:31 pm by jensalsjourney

I feel like my last post was sort of a downer, so I decided it would only be fair to acknowledge that being sick does have its benefits. Here’s a list of good things about having ALS:

1. Sit around all day but no one can accuse me of being lazy.

2. Finally have the pretty nails I’ve wanted all my life, as since I barely use my hands my nails don’t break and my polish doesn’t chip.

3. Get all the good parking spots (when they’re available, that is — remind me to go off on a tirade about this in a future post).

4. Never have to be the designated driver.

5. No more diets — doctor’s orders!

6. Don’t have to clean the house or do laundry.

7. No guilt about not volunteering to do stuff for PTA.

8. Haven’t seen my basement in 18 months so don’t care if it’s messy.

9. Waited on hand and foot.

10. Can run people over if they are walking too slow; just like I always wanted to do in Penn Station back in the day.

11. The fatter you are the longer you live (I stole that one).

The best part of course is all the well wishes, prayers and good vibes from everyone around me, near and far. I’m humbled by how many hands have reached out to help me and how many people are cheering me on. I read somewhere that people with ALS who have a positive attitude and lots of support tend to do better than average. I’m going for it. Thanks everybody!

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