Bill turns 49 1/2

In January 2005, in the midst of building a ramp for the house, getting Bill ready for his wheelchair and who even remembers what else, our friend Connie asked, "Bill will be 50 this year, right?"  Indeed, his odometer would turn to 50 in October.  Always up for a party, Connie suggested we start planning!

A couple of weeks passed and it became pretty clear that Bill's ALS was progressing much faster than any of us were prepared for.  I called Connie and suggested that we hold off on the planning.  Based on his progression...it didn't look like we'd have a guest of honor for this bash and I didn't want to put anyone through a lot of trouble or heartache.  She said she'd get back to me!

Within a matter of days Connie had decided that waiting was not an option.  She delivered the new plan.  We would we quickly organize and still throw the party to celebrate Bill's 49 1/2 birthday!  I told you....she's a party girl!!  She and her husband Eric organized all of the details.  Bill and I had just 2 assignments.  Put together the favors and show up to enjoy some snacks, cake and the good wishes of friends and family.

Every picture tells a story!  This one tells of an amazing group of friends, who quickly organized before ALS could snatch their friend, to celebrate a milestone birthday - 6 months early!  Bill is smack in the center grinning, and Connie is in the lower right corner, with the bright, beautiful smile in the black, floral dress. I've told them personally, but this tells the world how grateful I am for the friendship I enjoy with Connie and Eric.  I will ALWAYS appreciate their thoughtful, unselfish gesture. 

Oh...and the party favors?  A CD of Bill's favorite songs.  No small task for a 15 year DJ'ing veteran!  Volume I was such a hit, he immediately received requests for Volume II.  But that...is another story!

Here's the playlist...You'll probably scratch your head and determine that my husband's taste in music ran to the extremely eclectic.  And you would be so right!!  Enjoy...and let me know what's playing on your iPod!

1. Fox Fanfare
2. Beach Boys - 409
3. Disney - A Pirates Life
4. Eagles - Hotel California (w/acoustic intro)
5. Free - It's All Right
6. 3 Stooges - Hello (sound clip)
7. Jump in the Saddle - Curly Shuffle
8. Los Lobos - Mustang Sally, Slow Your Mustang Down
9. Michael Franks - Inside You
10. Star Wars Quote - "I find your lack of faith disturbing" (sound clip)
11. Ray Charles - America the Beautiful
12. Santana - Samba Para Ti
13. Sara Evans - Suds in the Bucket
14. Animal House Quote - "Fat, Drunk and Stupid is no way to go through life son" (sound clip)
15. Shelly West - Jose Cuervo
16. Southern Comfort - Liquored Up, Lacquered Down
17. Steppenwolf - Born to be Wild
18. THX Movie Opening Theme
19. Vivaldi - Concerto in D Minor, Allegro
20. Toby Keith - Courtesy of the Red, White, and Blue
21. War - Low Rider (remix)
22. Tracy Byrd - The Truth About Men
23. AD/DC - Back in Black
24. Backdraft Sound Track - Fahrenheit 451
25. Braveheart Sound Track - Amazing Grace

Patients with Pluck!

From the Yahoo Education dictionary, I found the following definition for the word "pluck"

"Resourceful courage and daring in the face of difficulties; spirit."

And PLUCKY would be the best one-word description for 3 ALS patients, each far too young to have this shitty disease, whom I have come to admire and consider as personal heros.  They have truly taken the lemons life has handed them, added some salt and tequila (the 100% Agave GOOD stuff!) and done shots!  While they are still around to read these words, I offer the following tributes.

Carla Zilbersmith is a singer, actress, mom and a hell of a funny woman!  She lives her life out loud and ALS is just one of the many facets of this extraordinary woman.  Read Carla Muses regularly for a funny, irreverant and emotionally engaging look at her life, which just happens to include ALS.  I often wish that our paths had crossed when Bill was still alive.  I can only imagine their friendship and possible collaboration.  Maybe....in heaven!?  Her latest post "A Cripple Danced at a Gay Cowboy Wedding" is not to be missed.

Jason Picetti is young, smart, a self proclaimed nerd/former math teacher and writes the blog Adventures of ALS Boy.  Jason teamed up with Carla and was photographed, wheelchair and all, surrounded by a bevy of very sexy looking young women.  All in the name of raising awarenss for ALS.  "We're Bringing Sexy Back" is his account of the recent photography session.  Jason, like Carla writes from the heart.  "Last Call" is just one of a hundred+ gifts of insight that will allow his baby girl Emma to know the dad that will be taken from her too soon.  His wife Fehmeen is gracious and shares Jason's ability to look at the funnier side of life. 

Last, but certainly not least is Sarah Ezekial who has made it her life's work to raise ire and eyebrows, as well as awareness for ALS or MND (Motor Neuron Disease) as it is known in the UK.  Sarahville is one of my new favorites for a variety of reasons....but mostly because, like Carla and Jason, Sarah doesn't flinch.  She tells it like it is and isn't afraid to shake up the status quo.  Please take the time to read "MND is..." including the embedded link to "Is my pain really too shocking for television?".  The advert (in America we say commercial, but advert is so much cooler!) "Sarah's Story" is brave, direct and has created a lot of conversation...proving once again that one person can indeed make a difference.

Who are your ALS heros?  Cheers!

http://www.flickr.com/photos/sheeprus/ / CC BY-NC-ND 2.0

Developing YOUR Story - a few tips/tricks

My best friend got married this past Sunday and as her coordinator, I have been consumed with ALL things wedding related.  It was a GORGEOUS wedding, perfect in every way.  So....now I'm back to the real world and realize that a month has passed without a new entry to Defeat ALS.  My how time flies!

In the past, on a number of different occasions, I've mentioned "telling your story".  Generally it's been in the context of advocacy and involvement with changing public policy.  I believe you need to be able to tell your story, in a concise and compelling way so that you can inform and educate, whenever the opportunity presents itself.  With ALS, this is particularly difficult, but critical, since few people know much beyond how to spell ALS.  Each time I talk about developing a story, I get a blank look or the question "how do I do that?"  It's hard to tell someone else how to write their story....I don't have the same perspective, experience or voice.  And besides....it's not my story to tell!

A few months ago, a childhood friend referred on of her friends to me for support, following the loss of her father to ALS.  Today's post is my response, which includes my thoughts on how to develop and tell your story.  I hope you find it helpful as you document YOUR story.

Dear Denise...

It's taken me a couple of days to think about your question and to (hopefully! answer in a thoughtful way.  I'm thinking that the true goodness of Facebook is that we don't actually need to know each other - we can be brought together by a mutual friend.  Because we share a very special bond - I'm pleased to "meet" you!  First I'm so very sad that you lost your father to this s^%&ty disease.  While there is never a "good" time to lose someone you love, I'm sure that losing him just before you delivered your daughter was especially difficult.  I can't imagine that pregnancy hormones and the joy of a new baby mix very well with grief.  Thank you for your kind words regarding my husband.  This is an especially difficult time of the year for me, so I truly appreciate your thoughtfulness.

Congratulations on making the decision to participate in the Idaho Walk to Defeat ALS.  I found the walks a good way to channel my grief - I had something to focus on besides a broken heart.  The walks are also a good way to organize friends who want to help you.  Unfortunately I'm going to agree with your friends and tell you that telling your story is the best way to educate people about the disease and to work through your own grief.  You don't really have to go into anything long or drawn out.  the good news is that the story will get better and your delivery will get easier over time.  Interestingly, this was one of the Twitter messages in my inbox this very morning!

"@schwerdtfeger:  Speaking: Don't look for grandiose stories.  Tell stories about YOUR life.  The audience will connect with the emotions you describe."

Your ultimate goal is to educate people about the disease, share your experience, talk about what the ALS Association does to help people with the disease and then ask them to help you honor your father by supporting the good work done by the association.  I believe your focus on raising money to find a cure will ultimately help you speak.  Here are a couple of points to consider as you craft your own story.

When I share my story, I will generally start by asking someone if they are familiar with ALS.  Depending on the answer, I might add, "You may have heard it called Lou Gehrig's disease."  90% of people will recognize it then.  Lately I've added that we just celebrated the 70th (yes 70 years!) anniversary of the famous speech give by Lou when he retired from the Yankees in 1939 because he was too weak to play ball.  You may have heard the speech.  I call it the "luckiest man speech" and there are lots of versions out on YouTube or the Lou Gehrig Wikipedia page.  Major League Baseball did a pretty big push earlier this month, so folks may have seen some of the stories and advertising.

I talk briefly about the statistics.  In the US, 16 people will get an ALS diagnosis today and 16 others will die from ALS.  One person every 90 minutes.  Less than 10% of the cases are geneticly transmitted and veterans returning home from mid-East conflict duty are twice as likely as the general population to receive an ALS diagnosos.  ALS is truly non-discriminatory.  It strikes young (17), old (83) and everyone in between.  My husband was 49 years old when he was diagnosed.  Whenever somebody asks me "why?" to any of these questions, I am hones and say I don't know.  Scientists are working on it, but there's been little, significant progress.  And I'm getting pretty impatient!

Then I move into helping people understand the disease.  I recently came across a wonderful analogy that people "get" right away.  Talk about "...being on the beach with sand for miles around.  We've all seen the dads who allow their children to use their plastic pails and shovels to bury them in the sand.  When the children finish the project they are generally happy with their work and the dad looks indulgent.  You see the dad's head sticking out of the sand, he's fully aware of what has happened/is happening, but cannot move anything.  He cannot even get out of the sand by himself".  Then you can say...."imagine what that might feel like."  And then let that sit in the air for a couple of seconds.  Then you can quietly say, "that's what it was like for my dad."  I promise you, people will have a new understanding of ALS!

You can then share a quick story of what it was like for you as a caregiver and how hard it is for you that you lost your dad before he could even hold his first grandchild.  Your daughter will grow up with stories about her grandfather, but won't have his knee to climb up onto to share a story.  Carry tissues for a while, this part will be hard, but it really helps people connect with you and your loss.  Take a deep breath and settle yourself.

I would then talk about the walk and why you are asking for money, especially in these tough financial times.  I find that talking about honoring my husband's memory works pretty well.  I also talk about the support groups and regional care managers funded by the association.  If your dad benefited directly from the services offered by the chapter, PLEASE SHARE this information.  Talking about the good work done and how you/your family personally benefited, makes it real!  I will sometimes talk about how expensive the disease is, especially in the late stages, often running $225K annually for equipment and full-time skilled care.

Finally, I come back to Lou Gehrig.  I ask people to think about the diseases that have discovered, in the past 70 year...like AIDS, Breast and many other types of Cancer, Parkinson's, MS, Swine Flu and more.  In our lifetime, researchers and scientists have been able to find what causes these diseases, created tests for early detection, have found therapies to help patients manage symptoms and to extend life and/or live relatively normal lives.  None of this has happened for ALS.

I then ask them to walk with me or to go to the website and sponsor me.  I talk about the walk and joining Bill's Brigade.  If they can't walk, I ask for sponsorship.  I've taken checks for $25, $50 (and more!), but lately I am asking people to think about a regular monthly pledge of $10.  It's only $2.50 per week, less than a fancy coffee drink at Starbucks, but it really means a lot to the chapter to support their work.  Most people can find $10 a month in their budget and not miss anything important in their household.  But $120 annually to the chapter is significant!

I can also tell you that this is a very effective way to craft an email campaign.  Go to the Walk website, register a team to honor your dad, and then us the email tools provided by the chapter to send "your story" out to all of your friends/family via email.  When I use this method, I thank them for their support and ask them to pass the email on to their friends and family. SOMEONE else has been impacted by the disease and will want to help you out!

I sure hope this helps!!  You are in my thoughts and prayers and I appreciate your trust in reaching out to me.  Please give my best to Brenda.

Kathie

ALS patients are not babies...

I've become a fan of Carla Zilbersmith.  Which actually kind of sucks for me because I didn't know her before ALS and would have really liked to.  My loss.  My only consolation is that I am able to read her blog, admire her joie d'vivre and truly appreciate the tremendous effort that goes into each of her narratives. Her recent post, Big Baby on Carla Muses had me laughing AND crying as I recalled some of the caregiver/patient moments I experienced with Bill.  My post today is from the opposite end of the continuum.

For the record, we did not have babies, we had a three year stint as legal guardians for three 16 - 19 year olds.  My skills were just as limited and impatient as Carla described, so you can only imagine the conversations between the two control freaks living in our house!  To Carla's point, it is painfully frustrating (even without factoring in the potential humiliation) to be an adult who is no longer capable of operating independently.  It is all too easy to treat an ALS patient or an elderly relative as if they are a small child, even when we are fully conscious of the fact that they have learned full well how to dress, bathe, drive, and more.  Please repeat after me:

It is not ok to treat an ALS patient like a baby, not even when or if they are acting like one.  ~William Neil Lichtig

Each and every day some bit of independence is stolen from these loved ones, and deposited into the hands of a well intentioned caregiver.  And it happens of necessity, not because you and the patient came to some sort of mutually agreed to arrangement! 

Take a minute to reflect on what it might be like if the circumstances were reversed.  Would you be a "good" patient?  Would you trust and allow your spouse, child, parent to be your caregiver?  How would you negotiate the boundaries and know when to speak up or shut up? 

Think about it.  When you are rushed, it is much easier and certainly more efficient to put the shoes and socks onto a pokey toddler who is learning to dress on their own.  However, we cheat them of the opportunity to learn independence. It's natural to yell "hurry up" when someone is dawdling. After all, there are place to go and people to see and we're on a schedule.  In the same way, it's easier and much faster to do everything for the ALS patient you are caring for, ultimately shortening the dwindling thread of their independence and cheating you of some much needed respite!  I am not for one minute suggesting that you allow anyone, child or adult, do anything that is dangerous or will result in serious injury.  But I am suggesting that it is in your best interest to slow down and work to encourage/retain independence for as long as possible. 

I consider myself pretty fortunate that Bill was able to adjust quickly to his circumstances and remind me ever so gently (...not!) of what he was still capable of doing.  He could no longer manage the wash, but he could handle the dryer.  He couldn't carry groceries with his hands/arms, but if I could hang the bags onto the handles of his wheelchair or the boxes of soda onto his lap tray, he could zoom up the ramp into the house while I secured the van and he would keep me entertained as I put things away.  He could still carry his share of the load, and sometimes all of it!  

I learned to make myself scarce but stay within earshot so that I could protect myself from the heartache of watching my husband struggle to button his shirt, brush his teeth, walk any distance or any one of a hundred other little tasks.  I learned to tell him he had to do the best he could while I took care of something else.  And I learned to ASK him first, to see if he really needed my help to complete a task.  We learned to build more and more time into the schedule to accomodate his needs and capabilities.  And just as the world doesn't stop spinning when the kid goes out in mis-matched socks because everyone was rushed, it didn't stop when it took us an hour and a half to complete the grocery shopping instead of  45 minutes!

Caregiving is a full-time gig.  It's demanding and generally exhausting work.  Change is not easy. Work together and do not willingly make this job any tougher, any sooner, than you have to.  It would be great to hear how you manage this delicate dance.

Calendar Girls (and Guys!) for ALS

Carla Zilbersmith is extraordinary. And...she has a great idea!  I am posting this to help her find the 11 patients she is looking for!  Please contact Carla directly if you are game to join her!

TO FELLOW ALS PATIENTS:

My name is Carla Zilbersmith and I was diagnosed with ALS in December of 2007. I have been thinking about something I would like to do to both raise awareness and raise funds for ALS research but I need the help of 11 other bold people with ALS.

I would like to create a cheesecake calendar using ALS patients as models. I’ve seen calendars like this to raise money for cancer but they have always used friends and family members instead of the actual people living with the disease. I don’t know about you, but I don’t like to be marginalized because of the fact that I’m in a wheelchair or that I slur my speech a little. I feel like I’m the same person inside and I am forever looking for ways to remind people of that fact.

Here’s what will happen: If you’re even remotely interested in participating in this project, you will email me at carlazilbersmith@yahoo.com with your questions as well as any concerns that you might have. I will arrange for a photographer or photographers to take our pictures and wrangle someone to help with hair, make-up, and clothing (Obviously, men won’t need make-up and bald people won’t need hair styling). The photo shoot should take no more than 2 hours of your time including make-up. None of the pictures will involve nudity but they will be provocative. You don’t have to consider yourself “hot” to participate and ideally people at all stages of the disease from not even needing a cane to using a ventilator will be part of this. I want to show the world that we are more than a disease. I have been in the entertainment business for over 20 years and I know what I’m doing, so you can trust me when I say I promise you will not be embarrassed by the picture we choose and you will not have any pictures taken that you aren’t comfortable with.

I will find a printer and a graphic artist to donate their time to creating the calendar, which ideally should be ready by Thanksgiving so absolutely everyone can buy several as Christmas/Hanukah/Kwaanza presents.

I hope you will consider being a part of this project. We won’t raise millions of dollars but we will cause a stir, make some money, and let people know that we are alive and kicking until we’re dead. Thanks for your consideration.

Carla Zilbersmith