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 http://web.alsa.org/site/PageServer?pagename=WLK_BP_stateselect 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!

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" again....here 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".  Hey....it'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!!

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! So...it 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!

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)
  

Follow-up
Once you and your physician have agreed on a solution, COMPLIANCE is critical. And...it 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.

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 [blicht01@pacbell.net]
Sent: Monday, July 25, 2005 10:08 PM
To: Comm
Subject: Meow.doc

Meow;

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.

B.

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.

Gratitude

I learned a very valuable lesson earlier this week and I want to thank you for taking me on as a willing student...and teaching me! In the past, I haven't been good about sharing my progress and setbacks in the process of grieving. I'm not too excited by my own company, so I certainly don't want to burden my friends! "The Funk" post was the first time I'd really been honest, even with myself, about how hard it is to grieve.

By reaching out, sharing my experience and asking for feedback, I received a wealth of warmth, personal sharing and encouragement, from places I never expected. Just like when I was a full-time caregiver, I am once again humbled by the lessons ALS has managed to sneak into my consciousness! THANK YOU!

4 months ago today, a young man named Drew Schemera earned his ALS wings and is free from this stupid disease. In his ethereal wake, he left a wonderful BLOG with a comprehensive set of links to ALS related sites. Even better...a fabulous (encouraging, thoughful, uplifting) playlist of 147 songs from all music genres. I'm listening to it as I write. #80, "You Get What you Give" by the New Radicals has become my new anthem! I'm sorry I never had the chance to meet Drew, but I am very grateful to his family for leaving his writings on the web.

Lesson learned: Be honest and reach out. There will always be a hand to clasp yours and a hand out of the funk can come from some unlikely places!

The "Funk"

So....I haven't written for about a month or so. I've missed it, but the summer months are difficult for me. I go into a funk and climb into my "cave", a self imposed RIF (reduction in fun) to hibernate with my grief. I lost my dad in August. I lost my husband in August. I lost his brother in September. I can get through the routine stuff...you know, go to work, try and work out, pay the bills, wash some clothes, and the like, but that's about it. Every other bit of energy seems to be absorbed in this whole process of processing grief. It's a job!

In the year following Bill's death, I was completely numb. I went through the motions - 365 days passed and I could barely remember what had happened, let alone identify specific moments in time. The second year, I went into a dark place and couldn't identify what was happening. I couldn't shake the sadness. Just when I thought I would be OK, Bill's brother was killed in a freak motorcycle accident. I felt like I'd been pushed under water. The sadness in my bones lasted until after the first of the year and took the remainder of the year to melt away.

Year 3 approached and I really dreaded the summertime. I just knew that I was going to be sad, and sure enough... I received what I anticipated! However, my time in the cave didn't last as long and I was encouraged. Late last fall, during a period of intense introspection, I finally figured out (with much gratitude!) the source of my sadness. For me, summer and early fall are closely linked to loss of loved ones. To cope, my normally cheerful, optimistic self crawls to a place of safety (the "cave") and assumes the fetal position for whatever length of time it needs to sort through all of the feelings of anger, sadness, hopefulness and faith that are associated with loss, leaving the rest of me to cope with the world. For me, this period is now fondly referred to as "the funk". You might imagine that with the cheerful "me" on hiatus, the rest of "me" is not all that much fun - and you would be correct! I'm just not very good company during this period.

Coming out of "the cave" last year, I resolved to be more present with this period of time each year...to pay attention to what was happening to see if I might learn anything. It's odd paying such close attention to my feelings!? This year, I've noticed that the funk started a little later....and curiously it doesn't seem to be quite as intense this year. Good news! I'm hopeful that this hibernation period is brief and restorative!!

How do you handle grief? I'd love to hear your thoughts, so please post a comment!