Wednesday, November 18, 2009

Angels Among Us...continued

So…hospice is a little tricky, psychologically. Timing is everything! When you turn to hospice, you are admitting that the end of your physical life is somewhat imminent and that you do not want to take any extraordinary measures to extend it. You are going to die. Soon. And you are ok (more or less) with the next steps. Not a decision to be considered lightly!


Bill and I were clear with each other that we weren’t ready to give up hope. But, to “understand our options”, we filled our hospice prescription about a month later. As we suspected, we were a bit premature. But, it turns out, there is a step you can take that extends some, but not all of the benefits of hospice. It’s called Palliative Care – think hospice lite. Our experience was brief but positive. I would highly recommend that anyone facing a potentially life threatening illness investigate the services offered by palliative care practitioners in your community.

Our stay in palliative care lasted about a month…until our next clinic visit. By then it was clear that Bill’s ALS had a plan of its own and didn’t really care about our need to get comfortable with the stages of the disease. The palliative care nurse recommended that we contact hospice. It turned out to be the best decision of our lives.

Because it’s scary to admit that death is inevitable, and potentially close at hand, it’s hard to bring hospice into the picture. Typically, the hospice team is brought in during the last stages of the patient’s life, allowing them to die outside of the clinical environment of a hospital, affording comfort and dignity. We filled our prescription and received a perspective on what hospice COULD be.

If the hospice caregivers are brought into the family early on, they have a chance to get to know the patient, the family and gently walk everyone through the process. Not that their job is especially fun, but it isn’t meaningful for them if they are just around to help medicate a patient. They will do it, but optimally, there are lots of resources available which can make the journey much easier for the patient and for the primary caregivers. For example,
  • Chaplains can address spiritual needs.
  • Social workers can bring in community resources.
  • Nurses and medical professionals can baseline vitals and have the difficult end of life discussions at a pace that seems comfortable and respectful.

And so it was with us. A care team was assigned to us. Jolene was the case nurse and a perfect fit for Bill. She respected him, listened to his wishes, was his advocate when I disagreed with a particular course of action and in general got to know him as a whole person. Not just a patient with symptoms to be managed. I loved her, because I could use her as an ally as needed! Jolene handled any major medical issues and made sure I was trained to handle the day to day issues. In the early days, a team of aides came twice a week to help with bathing and personal care. As we progressed, they came more often, giving me an hour of respite and Bill a clean shave and a smiling disposition. Showers will do that! Emmy was always his favorite. Hospice programs vary, so do your homework to find a good fit. I know of an ALS patient and his wife who received regular massages in their home as part of their hospice services!

I’m not certain why someone chooses to pursue a career in hospice. It may be that hospice chooses them. No matter! I am eternally grateful for these special angels among us. Thanks to them, the passage from this life is easier, and the resulting “good death” can indeed be celebrated.
Also posted to Fashionable Giving

Tuesday, November 17, 2009

Angels Among Us

When we are born, we come into the world amid much celebration and joy. When we die, why isn’t it the same?

Full disclosure at the beginning. Some may find the next few posts uncomfortable to read, because we don’t generally discuss death and dying in this culture. I hope you will stay with me as I share part of my personal story and thoughts on a model for a good death as I recognize the many angels who have chosen a career in hospice, during National Hospice month.

In my lifetime, pets, grandparents, friends, in-laws, my dad and my husband have died. For my dad and my brother in law, a gunshot wound and a motorcycle accident ended their lives almost instantly, mercifully. For those of us left behind, the process of processing their death was painful. We have all been very philosophical, saying “at least he didn’t suffer”. But it still hurts some 20+ years later when I want to run something by my dad and have to grapple with the quantum physics/time-space continuum involved in that conversation. Needless to say, I’m snapped quickly back to the present moment! We have the conversation; I just have to listen a little more closely for the answer!

Since pets have chronologically shorter lifespan, we are generally prepared for them to die in our lifetime. I completely agree that the grieving process is intense, but philosophically, humans tend to be more prepared for a pet death. For my pets, I have been grateful for the caring counsel of a marvelous team of veterinarians!

For everyone else I’ve lost, hospice staff and volunteers have often been involved, at least to some degree. In the cases where hospice was involved, they were generally brought in at the last few days/weeks of life, primarily to help manage pain and offer some comfort to the survivors. And I will never be able to sufficiently express my gratitude for their marvelous work!

When we received Bill’s ALS diagnosis, we did a lot of soul searching. We suddenly found ourselves facing a lot of questions about death and dying. And….facing a question neither of us planned to discuss at only 23 years into our relationship. I’m not sure when we planned to have the conversation exactly, but I promise you, it wasn’t then! And from a now experienced vantage point, questions like “How do you feel about death?”, “What is quality of life for you?”, “Do you want to be buried or cremated or something else?”, “ What kind of funeral would you like to have?” need to be brought up sooner than later. Yikes!

As I write, I am so grateful for the counsel of Dr. Will North, one of the finest human beings I have ever met, and a darned good neurologist! During one of our early visits, with Will, Bill needed to know the particulars of what the last few hours and minutes of his life might be like. Not an especially surprising curiosity from a guy who had spent a most of his career in rescue situations and had seen his share of death. Me….I started to squirm and look for the exit route, knowing full well there is no escape, either from ALS or this particular conversation. Damn!

With his characteristic candor and amazing bedside manner, Dr. North walked us through what the final days and hours would likely bring for Bill. Turns out that the ONLY kind thing about ALS is that in most cases, it allows the patient a very peaceful passing and I can report that is what happened for us. Once Dr. North had satisfied all of Bill’s technical questions, he broached the subject of hospice and wrote out a prescription, with the understanding that we could “fill” it whenever we were ready. I remember our walk back to the car and ride home as exceptionally quiet as we each processed this new information.

I don’t remember who finally broke the silence but it was as if each of us was waiting for the other and finally couldn’t stand it anymore! We agreed that we were too early for hospice – Bill was still walking at this point – but we agreed that when the time came, we wanted hospice involved.

To be continued….

Also posted to Fashionable Giving

Wednesday, October 28, 2009

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 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 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

Saturday, October 24, 2009

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. 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!

Tuesday, October 20, 2009

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. 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'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 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.


Saturday, September 19, 2009

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.

Wednesday, September 16, 2009

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!

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 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

Tuesday, September 15, 2009

More comforting words....

A few weeks ago I posted Comforting Words and shared the letter Bill wrote to me just before he died.  The feedback/comments I received were wonderful and heartwarming....thank you!  A few days ago, my mom sent the following, to be added to my "wonderful collection of quotes".  I don't think she anticipated how much comfort it would bring me.

As you might imagine, with ALS a constant presence, Bill and I talked a lot about death and the process of dying.  Not in a morbid or fatalistic way, but more from a perspective of curiosity and observation.  We became avid students and both agreed that whether you believe in creation or evolution, the body is quite an amazing vehicle!  My mom attended the memorial services of a friend of ours who died recently, not from ALS (thank goodness!), but rather in the way I hope to go...natural causes.  Hilarie was well into her 90's and had lived a very full and productive life. She was sassy and good natured, right to the end, so I find this quote is especially fitting.   
In coming to the realization that his life was coming to an end, Edward Madison Cameron shared these words with his aging body:

“When you can go no further, I shall leave you and be free… When we separate I shall continue to exist. A Power greater than you and I started us on our journey. Your journey is approaching its end and you are aware of it. My journey has merely begun and I know it because I have never felt more alive. Our separation is, therefore, not one of sadness, but of joy. You are weary and want to stop. I am longing to alight from this slowing vehicle and go on without you.”
To my dad, Bill, Hilarie, and the many friends and family members who are no longer with me physically, I toast your spirit and offer a prayer of gratitude for the many gifts of love and life you've left behind.

Friday, September 4, 2009

Dignity, Self Sufficiency and Safety...PRICELESS!

Earlier this week I posted Why does fundraising for ALS matter...really? I received some feedback that the story got lost in all of the gadget photos. So I decided to separate them. I just adore technology!!!

Dignity, Self Sufficiency and Safety may be priceless, but they DO come at a cost. That's where each and every donor hero comes in! are (or can be!) a Donor Hero. And trust me...that too is priceless! Please understand that ANY donation, no matter the size is put to good use by any number of organizations serving patients and families with ALS, such as Augies Quest, ALSTDI, ALS of Michigan, or the ALS Recovery Fund. Bill and I were blessed to be associated with the ALS Association Greater Bay Area Chapter. But there are many others - use GoodSearch or Google to find an organization near you. BTW, GoodSearch is a great way to donate "passively" to the organization of your choice! 

Here are a few of the zillions of ways your donations and fundraising efforts can help a family living with ALS:

A $25 donation allows a patient DIGNITY and SELF SUFFICIENCY.

Built up utensils, straw holder, scoop plate and a grip cup allow an adult to feed themselves

A Button/zipper pull and a key turner allow independent dressing and access to the home

A $50 donation purchases SAFETY...Bathroom grab bars and a shower chair retain independence and safety around the toilet and shower. A Gait Belt allows a caregiver to safely transfer a patient from bed to chair and back, protecting their back and retaining safe control of the patient.

  • $1 per day Provides speech amplifiers for those whose voices are now too faint to be heard. or Helps a family transport their loved one to a clinic visit. or Offers an hour of a Chapter Care Manager’s expertise.

  • ALSTDI estimates that it takes $100 to fund 1 minute (60 seconds!) of ALS specific research. Remember we still don’t know what causes ALS which means we cannot begin to find a cure for ALS.

  • A $500 donation allows an ALS specialized Regional Care Manager to do their job for 1 week. Every day, our Care Managers assist patients by recommending community resources for financial/emotional support, securing appointments for power wheelchairs, providing recommendations for in-home care, recommending speech devices, reviewing physical therapy techniques, checking in on a patient who lives independently, delivering educational presentations to a wide variety of audiences, coordinating equipment loans/transfers between patients and vendors, and so much more.

  • $1000 supports specialized care at an ALS certified clinic, where patients see a battery of specifically trained medical professionals – Neurologist, nurse, occupational therapist, respiratory therapist, speech pathologist, physical therapist, social worker, augmentative communication specialist, and physical therapist. Consider that these costs are not always covered by insurance!

  • $2000 supports the MDA's Durable Medical Equipment program - specifically the grants for motorized wheelchairs, enhancing mobility and independence

How have you been supported by an ALS organization?  Please give a shout out to the heros that help make each day a tiny bit better. Thank you in advance for your generosity. Together, we can make a difference. But it WILL take all of us. 

Calm in the midst of a storm.

I have often joked, "pick your own natural disaster and call it home".  Me...I live in earthquake country.  It's crazy I know, but a small price to pay to be within 4 hours of any kind of weather I want, exquisite dining and culture, the Golden Gate Bridge and a short drive to some of the best wines in the world!  For you, it may be floods, hurricanes, searing heat, sub-zero cold, tornados, or humidity (that acts like MiracleGro® to blood-sucking mosquitos!), but we all brave the elements, wherever we live. 

Because there is generally no warning before an earthquake, there are measures I have taken to be prepared for when the "big one" hits. I check my supplies at least once a year, but for the most part, I don't have to think much about it, because I can physically go to that spot whenever I am feeling anxious, touch the supplies/check my list and ground myself with a measure of confidence. In addition to regular fire drills (stop, drop and roll), evacuation drills (remain calm and move quickly to the designated area) and earthquake drills (drop, cover and hold on), I know that if the time ever comes, I can go my spot, take a deep breath and remind myself that whatever else happens, at my core, I have the basics covered, I've practiced and I'll be ok. 

Friends who know me well, know that I am a great believer in the natural order of the universe.  Everything happens for a reason.  There are no accidents.  Most of the angst in the world results mostly from our own perception of words, circumstances or specific situations.  Life and its experiences (good and bad) come at us thick and fast.  We just catch our breath and we're on to the next "adventure".  For me, it's not what happens, it's how I handle or react to what happens, that ultimately makes the difference in whether an event bends me, breaks me or catapults me forward into something infinitely better.  My reaction ultimately determines my resiliance and perception of the event. 

And...I can hear you all loud and clear!  "Hey Kath...wouldn't is be just ducky if there was an emotional disaster preparedness kit?"  A great question and there is!  Today's post from the DailyOM - one of my favorite websites - reminds me of exactly why I subscribe to their daily newsletter to help me stock my psychic supply box with everything I could possibly need to weather life's storms.

This site is an online fountain of inspiration and practical tools to help each reader find his/her own center in the midst of the crazy, fun, chaos we call life.  Their tagline is "Nurturing Mind Body and Spirit" and for me that is exactly what they deliver.  Day in and day out the writers at DailyOM deliver a thoughtful and positive message, complete with practical suggestions, that reminds me of the emergency/disaster preparedness kit I have for the times when Mother Nature gets fussy.

Today's message is literally about taking a deep breath in the midst of all of the swirling and noise to touch base with our inner source, as a way to safely anchor myself to the universe and remember that I have everything I need to weather any (perceived!) threats to my emotional stability.  I also subscribe to their daily horoscope and am frequently amazed at just how targeted the message for the day is?!  I am regularly reminded that it is in my best interests to listen to and value the thoughts and opinions of others, and patience is a virture for which I will always strive!  Some days I'm quite sure there's a secret satellite webcam following me so the writers will know EXACTLY what message I need to heed!! 

So how about you?  What do you do to keep your balance when the inevitable storms hit?  Please share your stories here.  In the meantime, "Cool Runnings" Peace be the Journey!

Monday, August 31, 2009

Why does fundraising for ALS matter....really?

For the next ten minutes, I’d like to have you “unplug”, read and absorb the following words. After reading the next few paragraphs, please close your eyes and really paint this picture in your mind. Ready?

You and your family have decided to enjoy a beautiful, sunny day at the local beach. You pack your picnic basket and enjoy the drive. You have laughed watching your children dig a rather large hole in the wet sand. You think to yourself, this was a great idea…it’s so good to get out, enjoy the sun and watch their joyful play!! After much pleading, coaxing and cajoling, you agree to be buried in their sandy pit. Before long, one child has been working at your feet. They are now covered with wet sand and you can’t get away. In the meantime, another child has been dumping buckets of wet sand onto your left arm, and pretty soon, you can wave to your spouse with your right arm and shout out that you are having fun. The children see progress and several other children join in so they can quicken their pace! Pretty soon, your left arm is buried and they are making good progress covering your legs, hips, waist, chest and finally your shoulders. Now…only your head is visible.

You know exactly what is happening, and it is quickly apparent that you are at the full and complete mercy of your children! And, by the way, remember the sand is wet, so it’s heavy on your chest, and you realize that it’s getting a little difficult to breathe. Your stomach growls and you convince the children to bring you some fruit and something to drink. You instinctively reach out to get your snack, only to discover that your hands are useless, you are truly not capable of feeding yourself. Your children laugh and scamper off to chase the waves. You cannot move and you know it.

At some point, you have convinced your children – via pleading or threats of death before their next birthday – to dig you out. It takes a bit, but you are free and the only sign of your ordeal, is that you are covered with sand, which is quickly washed away by a quick dip in the water. You are once again fully functional and independent. For an ALS patient, there is no gleeful option to “dig them out”.

Tomorrow, as you (without assistance) get out of bed, stretch, eat your cereal, take your shower, get dressed, walk to your car, enjoy your Starbucks®, curse your allergies and blow your nose, go about your busy workday, navigate the traffic home, take the dog for a quick walk, enjoy a glass of wine with a juicy steak, hold your children as you read their bedtime story, bend over and pull up the covers to tuck them in, brush/floss your teeth, use the toilet, take your medications, put on your pajamas, climb into bed, read for 10 or 15 minutes, kiss your spouse, reach up and turn out the lights…please think back to the beach scene and consider that EVERY 90 minutes, of every day, ALS claims 2. Someone will get an ALS diagnosis and start the descent into the sand pit of complete dependence on a family of caregivers. And one will die from complications of ALS, usually because they can no longer breathe.
Now…again with the beach scene firmly in your mind and, because you can, I ask that you take the following three steps. Make a difference for the hundreds of families living with ALS who are served by the ALS Association in your community.

  1. Put on your tennies or ride your bike for a wheelchair bound patient in one of the Walks/Rides to Defeat ALS to be held around the US this fall. Please click to find the most convenient ride/walk and sign up today. While the economy struggles to get back onto its feet, consider that most ALS patients are trying to do the same and need your help – today more than ever. There are a number of examples below which will help you understand the safety, dignity and independence your generosity provides. I recommend a monthly donation of $5, $10, $25, $50, $100 or more (whatever your budget allows).
  2. In addition to your personal donation, make a commitment to raise $250. In the advanced stages, care for an ALS patient can reach $250,000 annually. In the early stages of the disease, your donation can buy independence, safety and respite for a patient or their family members.
  3. Pass this message along to everyone in your address book. Share it with friends, family, neighbors, co-workers, schoolmates, teachers, and local business owners….everyone within your sphere of influence and ask them to join you on the walk and to make the fundraising commitment.
Thank you!

Tuesday, August 25, 2009

Tentra Progress Report - Week 1

Last week's post regarding the Tentra as a prescription for daily living has turned out to be a great way to channel my blues!  I'm starting to feel more like "me" are a few of the highlights:

Give people more than they expect and do this willfully. 
Work has been somewhat challenging.  I've made it a point to ask about the "next steps" for each of my tasks.  Most of the time, my colleagues have appreciated the extra effort.  I've appreciated that fact that I at least asked/offered. 
When you say "I love you," say it truthfully. 
I've adapted this slightly to recognize and demonstrate appreciation for people in my life and to be specific about what they mean to me.  I found a set of quotes over the weekend and have posted them to Twitter, recognizing specific Tweeps for what they bring to my life.  It felt really great to recognize someone I've never actually met!
Never mock other's dreams. 
I'm generally pretty good at encouraging the dreams and aspirations of those I love/care about, so I had no thought that this would be challenging for me.  That is until my sister-in-law shared a "vision" that she had about her late husband (Bill's older brother) and then asked me if I thought she was crazy?!  I found myself answering "It's not uncharacteristic, but if you think you did/are doing the right thing, then it only matters what you think and I will defend you to my last breath".  She laughed and said she loved me - and it was a big deal for both of us!
Talk slow, think fast. 
This still needs work!
Bless a person who has just sneezed. 
Saying "Bless you" or "God bless you" is almost reflexive for me.  But this week, paying attention to my intention I noticed the most of the folks in the surrounding cubes (including me) suffer from significant allergies.  We're all convinced it's the circulation - which is good for all the desktops, but not so great for the humans.  We are quite a sympony of sneezing, sniffling and nose blowing, punctuated by a chorus of "Bless you's", no matter who sneezes.  I'm thinking of trying accupuncture as an alternative to Zyrtec and Puffs!
Spend some time alone. 
I am really comfortable on my own and am fortunate to enjoy my own company.  Maybe sometimes too much!  I probably need to re-think this suggestion and consider reaching out a little more.  Just a thought....
Read more books and watch television less. 
This is pretty easy since I don't have cable.  So I don't watch TV unless I'm traveling and staying in a hotel.  And then...I'm a channel surfing, clickker crazed maniac!  I fairly certain I have undiagnosed ADOSD (Attention Deficit Ooooohhh Shiny!!! Disorder), so I tend to read magazine articles.  They suit my short attention span.  It's hard for me to pick up a book and read.  Tech geek that I am, I purchased a Kindle from Amazon and boy is it neat!!!  I'm reading "The Zen of Fundraising: 89 Timeless Ideas to Strengthen and Develop Your Donor Relationships".'s a start!
Be gentle with our planet Earth. 
As a youngster, I was very active in a Masonic youth group called Job's Daughters.  One of the promises you make when you join is "I will try to do at least one useful act each day".  Every day this week, I have picked up bits of trash that have been in my path and paid closer attention to my recycling habits.  It really took me back to my childhood and that earnest promise to do or be helpful...every day. It's amazing how much litter there is!!  I've felt like I was picking bits of lint off Mother Nature's beautiful dress.  It's so easy to just pick it up and deposit it into a trash can.  And it truly felt good to do something that only I knew about.
I'm not generally fond of having my photo taken, but my niece shot this when we were in Coronado (San Diego, CA) for a family reunion a few years ago.  I love that she took the photo and that I am this close to the water!  And yes....I am very fond of my bright yellow shawl!
That's it for me this week.  How have you done with this list - let me know!!

Monday, August 17, 2009

The Tentra Totem - A Rx for Living

The key to getting over a case of the blues is to get out of my head. I mean, I have to literally take steps to stop THINKING! About me, about my troubles, about my blues. It's not ALL about me!! One of the best lines from the baseball movie Bull Durham is when Kevin Costner says to Tim Robbins “Don’t think ‘meat’, you just hurt the team.” Not so easy to do, but when the student is willing, the teacher arrives!

Over the weekend, I came across one of those chain emails (the ones where you almost reflexively hit delete!) that I read and then copied/saved, thinking at the time I suppose, that it might come in handy some day.
Re-reading it yesterday, it seemed more like a “bucket list” for everyday living. And then it hit me! I can follow the suggestions on this list as kind of an antibiotic for the blues! is my intent to follow this "Rx" for the next 30 days, as a gentle reminder of how much abundance I currently enjoy and practice some good, old fashioned gratitude! I'll keep you posted on my progress!

This Tentra Totem has arrived from India and was sent to you for good fortune. It has already circled the world 10 times. Whether you believe in superstitions or not, devote a few minutes to read the Tentra, good
fortune will reach you within four days from receiving the Tentra. Share the link to this post to whomever you think is in need of good fortune.

  • Eat plenty of whole rice.

  • Give people more than they expect and do this willfully.

  • Learn by heart your favorite song.

  • Don't believe anything you hear and do not sleep as much as you would like to.

  • When you say "I love you," say it truthfully.

  • When you say "I'm sorry," say it with eye contact.

  • An engagement period of six months is crucial before marriage.

  • Believe in love at first sight.

  • Never mock other's dreams.

  • Love deeply and passionately. You may get hurt, but this is the only way to live life at its fullest.

  • Deal with discontentment, fight fairly, but do not offend.

  • Do not judge others because of their relatives.

  • Talk slow, think fast.

  • When someone asks you a question you do not want to answer, smile and ask, "Why do you want to know?"

  • Remember that the greatest love and the greatest success also hold many risks.

  • Bless a person who has just sneezed.

  • When you lose, do not lose the lesson.

  • Remember: respect for yourself, respect for others, and respect for your actions.

  • Do not allow a small disagreement to hurt a great friendship.

  • When you notice that you have made a mistake, take the appropriate steps to correct it.

  • Smile when you answer the phone. Those who call can "hear" your smile.

  • Marry (or be with) the person you love talking to the most. When you get old, conversation will be more important than anything else.

  • Spend some time alone.

  • Accept change with open arms; yet do not give up your values.

  • Remember that sometimes, silence is the best answer.

  • Read more books and watch television less.

  • Live a good, honorable life. Later, when you grow old and remember the past, you will enjoy it once more.

  • Believe and trust God, whomever/whatever you conceive God to be, but securely lock your car.

  • An atmosphere of love at your home is most important. Do all that you can to create a calm home full of love.

  • Do not bring back the past.

  • Read in between the lines.

  • Share your knowledge. It is the way to live forever.

  • Be gentle with our planet Earth.

  • Pray. Prayer has incredible power.

  • Never interrupt someone who flatters you.

  • Take care of your problems.

  • Do not trust a man or woman who does not close their eyes when you kiss them.

  • Once a year, visit a place you have never seen before.

  • If you make a lot of money, channel it so as to help others while you are alive. This is the greatest satisfaction a treasure can reward you.

  • Remember that sometimes, not getting what you want is very lucky.

  • Learn all the rules and then break some.

  • Remember that the greatest relationships are the ones in which the love between two people is greater than the need one has of the other.

  • Judge your success in light of what you had to give up to obtain it.

  • Relate to love and to the kitchen completely. (All the reason you need to see the movie Julie and Julia!)

I hope you enjoy and are inspired!

Sunday, August 16, 2009

Support Group - Strength and Knowledge in numbers

I am very fortunate to be able to attend a local ALS support group, supported by the Greater Bay Area ALSA chapter, located in Northern California. Each month, anyone from the area is welcome to share a cookie, their story, and learn firsthand about how to cope with ALS. More importantly, in my opinion, is that for just a few minutes, attendees know without a doubt, that however hideous this disease is, one does not have to fight alone....there are others on this same journey.

I am always impressed by our group leader Eileen Nevitt's ability to secure top flight speakers. A few months ago, Dallas A. Forshew, R.N., BSN Manager, Clinical Research (ALS) at the Forbes Norris ALS/MDA Clinic gave a presentation on the ABC's of ALS. We were fortunate that she allowed us to film her presentation, which can be found on the chapter's YouTube channel.

Yesterday, Margie Petrakis, RRT, RN and one of the outstanding Regional Care Managers in Northern California, gave an informative and comprehensive presentation on respiratory care and equipment for ALS patients. 90 minutes passed quickly as she discussed the physical mechanics of breathing, what happens to patients with ALS, and the various options to manage symptions, available to patients to maintain good quality of life.

Maintaining respiratory health is important, regardless of an ALS diagnosis! While especially important for ALS patients, some of the very basic things we can ALL do keep breathing easily are:
  • NO smoking!
  • Early detection and treatment of everyday illness - don't let a "little cold" grow up!
  • flu/pneumonia vaccines
  • avoid infection - steer clear of favorite germy hotspots like crowds, public transportation, doctor's offices, sick people, magazines, grocery carts, kindergarten classes, etc. and, if you must venture into these places, take precautions like paper masks, hand sanitizers, disinfecting wipes.
  • Wash your hands!

Respiratory Care for an ALS patient breaks down to three major components: Testing, Treating symptoms, and Follow-up (clinic and home care).

Testing determines how efficiently your respiratory system is operating and gives clinicians the necessary data to make appropriate recommendations for your individual circumstance. In addition, you and your primary caregiver are the most reliable source for what is "normal" for you. You know your body best. In order to determine the best possible solution for you, it is critical to participate and partner with your medical team. If you experience any of the following symptoms, please share them with your clinician, as they could indicate the need for additional testing and/or solutions to keep you running your best.

  • Excessive daytime fatigue
  • Trouble thinking or concentrating
  • Morning headaches
  • Not feeling refreshed in the morning
  • Frequent awakenings at night (known/unknown reasons, unusual sleep patterns, nightmares, night sweats, respiratory complaints)
Once you and your physician have agreed on a solution, COMPLIANCE is critical. will probably take some time to get used to the new routine. Margie shared some helpful tips.
  • Choose an interface (mask/nasal apparatus) you think you can live with - there are many to choose from. Some vendors offer special 30 day trial programs.
  • Whatever interface your choose, make sure it fits properly (not too loose and not too tight) and that it doesn't leak into your eyes. An RT (Respiratory Therapist) can help guide you to finding the interface that is "just right" for you.
  • If the vendor doesnt respond, contact your physician immediately and request a change of vendors early!
  • Be persistent and keep trying. It may take a couple of tries to find the right solution.
  • Keep a positive attitude and work with your caregiver to make the necessary routine adjustments.
  • Enjoy the benefits of better breathing!

    Each of us received a copy of "ALS Respiratory Decisions" A Guide for Persons with ALS and their families, produced and distributed by the Jim "Catfish" Hunter Chapter of the ALS Association. This concise and informative guide was written by Connie Paladenech, RRT, RCP with Sue Humphries, LMSW. I found this guide to be well written and as with all information written regarding ALS, is designed to provide some basic information. It should help guide the conversation with your professional health care team and is not, in any way, a replacement for sound medical advice. To find an ALS chapter providing services in your area, please visit the National ALSA website.

Monday, August 10, 2009

Comforting words

Today marks the 4th anniversary of losing my best friend and life partner to ALS, a disease that sucks the very life out of anyone it touches. I share this final letter from Bill, in the hopes that it will inspire ALS patients to take the time TODAY to write a similar note and say everything you need to say…to your partner, to your children, to your grandchildren, to your parents, to your closest friends. Ask or give forgiveness and clear the air. Tell them you love them. Share your hopes and dreams for them. Whatever you choose, it will be great!

To honor Bill’s memory, I read this letter and (kind of!) enjoy my annual shot of Jose Cuervo. I laugh and I cry, but I am always comforted and reminded of just how lucky I am to have given and received unconditional love. It’s also the reminder I need that it’s safe to come out of “the cave”.

From: William Lichtig []
Sent: Monday, July 25, 2005 10:08 PM
To: Comm
Subject: Meow.doc


We have reached the point all too quickly in my trek to the end of my life where everything that happens to me is not just a safety issue to both of us or, a health issue to me, but it seems literally life and death now. Sucks, doesn’t it?

My outside looks almost normal to people sprinkled with an occasional thunder storm that you have weathered with strength, dignity, and conviction, much stronger than I have.

The doctors can only guesstimate and treat by what they see and measure, but the soul makes the real BIG decisions on what happens to a person.

My body has taken control of itself, away from me, so all that is left of me that I can still control is my soul, my essence if you will, and even control of that is wavering more and more on a daily, sometimes hourly basis. Everyone has told me that my landing will be peaceful and quiet, with dignity. Can I just tell you the trip is anything but, sort of like our daytrips in Mexico!

I will miss your laugh, your snuggling, but most of all, your soul, your essence, that what makes you, you.

There is so much more I could say, but you know in your heart how much I loved you, through thick and thin. The fact that you have stuck by my side throughout this ordeal, being my voice when I could not speak and my staunchest advocate, has showed me your strong will, your dedication to our relationship and most of all, your love for me.

I am extremely sorry to leave our relationship this soon and this way, but we fulfilled our vows to each other, in sickness and in health, till death do us part.

I love you.


Sunday, August 9, 2009

100 things, leading to a single choice

Last week, the LA times published a beautiful piece written by Martin Welsh, who is the cousin of Jared Gill, one of my fellow ALSA board members. I was truly moved by the piece and asked Martin if he would agree to be a guest writer for DFTALS this week. He agreed and I am thrilled to share his thoughtful essay.

By Dr. Martin Welsh July 26, 2009

I am a 55-year-old retired family doctor with a large, loving family and innumerable friends and former patients whom I see often. I am an extraordinarily lucky man. For the last five years, I have also been a patient. I have ALS (or Lou Gehrig's disease), a cruel neurological illness in which a normally functioning intellect becomes trapped in an increasingly weak and eventually paralyzed body. Soon, I will die from it.

Through my career, I tried to honor my patients' end-of-life wishes. But after a quarter-century as a firsthand witness to death, I've developed my own perspective. It's not that I'm a quitter. I have struggled against adversity of one sort or another all my life, and those challenges have helped prepare me for what I face now. I still delight in accomplishing difficult things, and I always wear a bright red ALS wristband that says "Never Give Up. "That said, there will come a limit. I have made it very clear to my wife, my family and my doctors that I want no therapy that will prolong my suffering and lengthen the burden on others. I do not want a feeding tube nor a tracheotomy when the time comes that I can no longer eat, drink or breathe for myself.

Physicians and families sometimes feel an obligation to do all that can be done to keep someone alive. I believe this is based in equal measure on a fear of death and on Western medicine's increasing ability to prolong life near its end. I was able to diagnose myself at a fairly early stage of the disease. My case was slower to progress than some, and so I was able to keep working as a physician for nearly two years. During that time, I was enormously grateful -- for my patients, for sunsets, for golf games with good friends. Life has been truly wonderful, even as I have slowly lost the use of my hand, then an arm, then both legs and my speech. But as much as I have stayed focused on what I am still able to do, it has become harder to ignore the things I am losing. Today, my guitars sit idle. I haven't used my stethoscope in years. My jogging shoes gather dust in a closet as I watch my belly grow from lack of exercise. I remember the last time I tried to shoot a free throw with a basketball and I was five feet short of the rim.

Today, I find myself facing the kind of "quality of life" issues I discussed innumerable times with my patients. Answers vary from person to person. But the fundamental question is always this: At what point is the quality of life no longer worth the emotional and physical costs of maintaining it? I am not afraid of dying or death, and that is a wonderfully comforting thing for me right now. I have seen so many "good" deaths in my time as a physician that I know this passage can be peaceful, spiritual and even comforting to those left behind. I hope for such a death.

I have also started to think about how I will know when I am ready for it. To that end, I often think about what I call the "100 Things." Here's how it works. Imagine a list of 100 things you do most days. Some are routine, some are "chores," some are pleasurable. Get out of bed and walk to the bathroom. Kiss your wife. Answer the phone. Drive your car to work. Go play golf with your friends. Brush your teeth. Write a letter, lick and seal the envelope closed and put a stamp on it. Hug your child. Of course we do many more than 100 things each day, but for now, just imagine 100 that are essential to the life you live. Now if you take away one, you can still do 99. Is life worth living without being able to smell the rose in the garden? Of course it is! How about losing two or seven, or 23 -- is life still worth living? Of course!

But suppose you get to where you've lost, say, 90 things, and now with each thing taken away, a bad thing is added. You can no longer walk well, and you start falling, and it hurts. Your grip is gone, and you also suffer the ignominy of wetting your pants because of bladder spasms. You can't turn over in bed, and that also means you will get bedsores unless someone turns you frequently. Life is still worth living, but you're getting tired. At some point, no matter who you are or how strong, you can lose enough things that matter -- and acquire enough negatives -- that the burdens will outweigh the joys of being alive. This is the stage when, as a doctor, I would reassure my patients and their families that they had fought the good fight and it was now OK to accept moving to the next phase.

I know I will one day reach that point. And that's why I worry about feeding tubes and ventilators. It has been my experience that these things are at times started almost automatically, and once they are started, they are next to impossible to stop. I have seen too many unfortunate people kept alive for years in hospitals or nursing homes, beyond all quality of life. Sometimes it causes untold stress in a family. Some of these cases even have made national news, and, unbelievably, our government and some national religious leaders even weighed in, as if they had a right to do so. I worry that at some point a feeding tube, or other artificial substitute for a basic body function, will be medically "indicated" in my case. Intervention at that time might seem to make sense to those around me. But the result may be that I am kept alive only to count off the remaining things on my list of 100, such that I am forced to live well past where I would want to say "Enough."

I like to know where a road leads before I set out on a journey. Right now, one path I could take leads to a place I don't want to go. I am determined not to start down that path, even if others think I'm being premature in my decision. In short, I may well be ready to die before my family and friends are ready to say goodbye. But they know that, as I face my diminishing list of the 100 things that make life worth living, the choice of quality over quantity has to be mine to make.

Reprinted with permission, this article was first published by the L.A. Times, July 26, 2009. Martin Welsh grew up in Los Angeles and graduated from UCLA Medical School. He now resides with his wife in Camino, Calif.