Monday, October 19, 2009

Thoughts on my 43rd Birthday

The biggest gift I have received from my diagnosis and subsequent physical disability of A.L.S. is to not mourn or regret what I lose or don't have but rather to focus on the things you do. I view each day as both an opportunity to do something good and to find the happiness it will bring even though you sometimes have to look hard for it.

It has now been 16 years since that fateful day when I was told that I had possibly 3 more birthdays to celebrate or maybe 5 more at the outside if I were lucky so the advice I was given was to go plan my funeral "you know make it a party to celebrate the life you had." It was at that moment I heard a faint NO in the midst of the shock and dismay overwhelming me on this horrible point of reckoning in one's life that is dreaded and feared. It took me several months and that NO growing louder in my head to realize what the NO meant. NO I wasn't going to plan my funeral, NO I wasn't going to worry about my death and NO I wasn't going to stop fighting and striving to make a difference. It was in that moment of NO or rejection of conventional thinking when I not only retook my life but I began truly LIVING! Too many people in this world go about their lives complaining, worrying about what they don't have or someone else has and they live in regret of what they have lost or the life they could have had. What they fail to realize is that what they're doing is essentially "planning they're funeral"! This isn't living.

Living is waking each day like it's your last. It's finding the good instead of the bad. It's making a difference in the lives of others that you touch even in a small way even with just a smile to brighten their day. It has nothing to do with fear or judgment or hate. The one thing that has troubled me recently is the rise in these things between people just because they have different points of view since it's robbing us of living together in a better life. It has been and will be through our differences that our greatest strength and accomplishments come which can only be achieved through civility and respect. Living is helping others even when they don't know and cannot help themselves. It's appreciation for each day and those whose paths you cross during it. It leads to happiness, fulfillment, achievement and understanding but most of all living is about love. This is why I hope my life serves as a reminder to quit planning your funeral and start living your life again.

The things that you have that truly make you rich are not money and possessions since they are temporary and fleeting but rather it is love that endures, the love of family and the love of friends both old and new. This is why I am truly a rich and blessed man.

Here's the quote for today: "Is not life more than food, and the body more than clothing? . . . So do not worry about tomorrow, for tomorrow will bring worries of its own. Today's trouble is enough for today." -Matthew 6:25-34 (NRSV)

Tuesday, September 29, 2009

Life is GOOD!

Today once again proved to me how fortunate and blessed my life is. Even though today we were dealing with a minor issue that seemed bad it's only temporary but life made clear to me how insignificant the problem was. First, a neighbor asked Lisa if she could get his step-son from the school bus because he and his wife were splitting up and she had left to get a new stripping job since she was fired from another one and he had to go to school. They have two little girls of their own as well. Then Jordan, my youngest, comes home from preschool talking about her friend who will be coming to school tomorrow with no hair because of her chemo-therapy. Why does this have to happen to this little girl?

My life dealt me a tough break 16 years ago when I was diagnosed 16 years ago next week with A.L.S. but then again October 8th also marks my 15th year of marriage to Lisa, the most incredible and beautiful woman and who has given me three incredible and beautiful daughters. I have a truly blessed and wonderful life! Sometimes we need a reminder from life that if we're happy, healthy and have the love of family and friends then life is great regardless of little issues we're dealing with at the time. Life is good for me and has been for everyday I have had after that fateful day nearly 16 years ago. Be well and happy!

Friday, August 14, 2009

What is a LIFE worth living

I find the attached article from CNN rather disturbing.

Australian quadriplegic granted right to starve to death

As someone in similar circumstances, I have two issues with this and neither has to do with a person's right to die. First, as someone with trach why is this man choosing starvation when just disconnecting from the ventilator is a more humane and immediate choice for achieving one's death. My bigger problem especially in this internet and technology driven world, why are we still emphasizing one aspect of a person's life, the physical, as so important that when that ability is compromised that death is preferred. Life is SO MUCH MORE than our physical abilities because there's the mental, emotional and spiritual aspects of a person's life. Even though in this country we sometimes overemphasize the athletic endeavors of some, that's not what we remember in general. It's the impact of a person's mental or spiritual contributions which make a lasting impact on society and if you think about the family and friends that you have lost it is the love, emotional connections that you shared that mean the most not how physical they were. Physical limitations can be increasingly overcome even with the possibility of using robotic arms through the use of brain waves for quadriplegics on the cusp of being an everyday reality. It is time for everyone regardless of a disability or not to re-evaluate what the true value of their life contributions and what makes a life worth living.

Thursday, June 11, 2009

Deciding Your Life's Path

The following is my advice for someone struggling with their diagnosis of ALS but I believe it can be helpful if applied to anyone's life.

The progression phase of ALS particularly a rapid one is difficult to cope with because everything is in flux and it always seems like a new challenge confronts you daily which is overwhelming. Hopefully you can get your footing again so to speak and find a new life's purpose given your limitations. I can assure you that the rapid changes do slow down and stabilize because frankly there becomes less for ALS to take away. My next advice will be hard to read but it's the best thing for you to regain control and happiness. I would advise you to take like a week and really confront what you want to do with your life. Do you want to go on a ventilator or not and make a decision for what you truly believe is best for YOU alone. If it is to let the ALS run it's course then you should quit worrying about dying and start going about LIVING the best remainder of your life that you can have. If it's to vent start working on building a new life with goals and aspirations despite the obstacles of ALS. Either decision is absolutely liberating because it removes you from the hell of living in the unknown where you simply waste the opportunity to have a terrific remainder to your life's journey regardless if that is short or longer. The family and friends must respect whatever you decide and if they can't either they or you have to say goodbye and move on separately. This is my best advice for your situation. Be well and happy!

Jeff Lester

Friday, May 29, 2009

Response to Youth's Angst

The following is in response to a complaint about older, selfish professionals.

Boy youth is wasted on the young. You miss some critical points in proposing your shortsighted view. First and most serious issue for everyone under 50 (I am 42), is the little matter of Social Security and Medicare going bankrupt in about 10 years if the older generation follows your antiquated advices and retires at 65. This is a very real threat to your future earnings potential and if your suggestion is the course taken everyone will be working much more and receiving substantially less for their labor.

Now for the central assumption you put forth which is that the young offer new and better ideas for the future. This is pure bunk since outside the military, education and a few remaining unionized industries (ironically all of which have a set retirement age), the successful professionals who you so unceremoniously dismissed as selfish and just taking pay for contributing little have not only EARNED their position but apparently continue to create greater value than their potential replacements have reliably demonstrated since for the most part we have an at will labor market. Even your recession argument is laughable because statistics show that older, male labor have taken the brunt of the downsizing companies have done. Your argument might have some weight if not for the fact that companies are either having to outsource or import the professionals with the necessary skills that fulfill their labor needs. Maybe this economic downturn is exactly what the younger generation needs the slap in the face that you’re entitled to nothing. That you have to earn your success by developing the skills needed in the future to generate more value than their predecessor was able to create. Quit asking for things to be just handed to you.

Saturday, May 23, 2009

Disappointments of ALS

Please forgive this self indulgence of reflection on how ALS has negatively impacted my life because I know some think of me as a source of inspiration and optimism which I generally view my life with a optimistic lens but not today as I sit here chained to my Lazyboy by a body which long ago abandoned me. Tomorrow I know I will be my old self again but this Memorial weekend has me in a reflective mood about what I am missing and the people in my life who have been absent from it or left this world way too soon.

Why is there this disease which robs one so completely of physical abilities and any dignity? Why was I cursed into this hell of dependence? I was not supposed to be this way! I loved being independent, finding a different road just to see where it lead and what adventure may await. I wanted to live a life where I contributed to helping others have a better life, finding a way to lessen their burdens not be the one who needed a helping hand, who creates a burden for someone else to carry.

I am supposed to be the ultimate family man but this damned disease has even robbed me of this destiny. I desire to be the husband that comes in the house with a rose in my hand and mischief in my eyes and desire in my heart, to grab my wife from behind and brush her hair out of the way so I can get a little sugar. I just want to show her the love I feel so deeply in my heart and soul but this life sucking disease does not let me even hold her hand. I am supposed to be the dad that carries my girls on my shoulders, comforts them when they are sick or hurt, teach them the things my dad taught me, coach their teams, cheer their victories and be there to support them in defeat and most of all be their protector but instead this cruel disease has them helping me. Why has this happened to me when so many others piss away their lives in pursuit of things or achievements that have no substance and have hollow rewards?

I want to be the friend that gives not takes, the guy you can turn to and depend on when your down to give you a hand up and dust you off, to occasionally cut loose with, go to a game or fishing and even just hang out, shooting the shit and telling tales out of school. I definitely don’t want to be pitied or be the one who makes people think or say “Thank God I am not him!” and even though I appreciate deeply and understand my purpose in life may be to inspire others by overcoming the physical disability with a positive outlook I would rather inspire by my deeds.

Lord if it’s in my life’s plan to become whole again I do not seek fame and fortune because those are fleeting and I don’t even desire the satisfaction of self achievement because I see what’s truly important in this life. All I would dedicate my life to is making those who are in my life or even cross my path feel happy and most all loved; give help and not be helped; give and not receive because I have received my quota of help for this life! I know it is hard for many to understand for those who have not lost abilities but learn from me it is not the things or money or even self achievement you miss when your stripped bare by something like ALS, it’s the moments in time you share with others and giving of yourself that you miss. Everything else is meaningless! Be well and happy!

Wednesday, May 20, 2009

My Complete Interview for MDA Article on Longevity with ALS

I want to share with everyone my interview about my unusual longevity with ALS. While the answers are directed at someone coping with ALS, I believe most of my answers apply to anyone seeking a happy and fulfilling life.

Questions for Long-term ALS Survivor Jeff Lester

1) Realizing that there is not yet a treatment/cure for ALS, do you think your longevity after having been diagnosed with ALS can be attributed to any particular influence?

For me it is my Dad because practically my whole life until his death when I was 19, he had 50% or less lung capacity due to what was diagnosed at the end as pulmonary fibrosis. I or anyone who knew him would not have been able to guess that he was dealing with a health issue since he built an extremely successful dental practice, coached his kids and every other normal activity of an active dad, husband and family man. My dad instilled in me the values, drive, attitudes and most of all tenacity to overcome any obstacle in my life to find success, fulfillment and happiness. The most important lesson he and my mom taught me though was to live your life to the fullest and to love completely which allowed me to find true love with my wife, Lisa. Without Lisa I would not be here today.

2) What advice can you offer to others with ALS, about how you think it's best to live your life? You mention that, early on, you and Lisa decided to live your lives as close to normal as possible. Has that approach worked for you? Why or why not?

I believe the most important thing is to truly live and not merely exist because that’s not living. Also regret is a waste of time and energy. The six months after my diagnosis was the most wasted part of my life because I was so wrapped up in regretting what I was losing and being depressed about my perceived future that I wasted some of the precious few moments left of my “normal” physical life. If I can give any advice to those who are newly diagnosed is to cherish what you have and save the regrets for after you have left this life because then you will have plenty of time.

3) Your love for Lisa and your three daughters is very evident throughout your writing. Apart from them, do you feel there are other notable quality aspects of your life? If so, what are they?

My daughters are my heart and they amaze and bring joy to my life every day. They are my quality of life. Besides them and my extended family, I would say the incredible old and new friends and the much deeper appreciation I have for them because of my ALS gives me a pretty great quality of life better than most. Also waking each day with a desire to improve myself and help others is my life’s mission.

4) Do you feel that you are still growing as a person? Why or why not, and if why, how?

I am definitely growing! I try to improve and grow each day. I truly believe, regardless if you are well or sick, that if you allow yourself to stagnate you will wither and die. You have to aggressively seek and work to grow intellectually, emotionally or spiritually on a continuous basis since we can’t physically in the case of someone with ALS.

5) In one of your blog discussions, you ask the question, "Am I making a difference?" Tell us a little bit about you feel you are making a difference, and in what respects.

I hope I am having the same positive difference in my daughter’s lives as my parents made an absolutely positive influence in mine. Further I strive to make a difference in a greater sense to the world before I am done. Ultimately if my approach, struggle, attitude etc. helps even one person live a happier and more fulfilling life than I will have fulfilled the purpose of my life.

6) What is the attitude or frame of mind, with which you face the future? That is, are you an optimist, a fatalist, indifferent? Whatever your outlook, why do you think you came to hold that particular position?

I am an optimistic person and view my future with optimism. I even feel I will walk even though it has been eleven plus years since I have. In my dreams I still dream of myself as physically whole. I believe in part it is a gift from God, in part it’s how I was raised and the biggest part it’s the choice I make each day and I work at it.

7) What parts of your life do you have control over? (That can be physical control, but it can also be control over the choices you make about how you live your life.such as your desire to continue paying household bills online.)

I control everything about my personal life except a few minor physical things that ALS has taken from me. On most days I don’t even think about my being disabled because I am too busy. I believe just because you lose some of your physical capabilities it does not relieve you of responsibility of decisions regarding your life or contributing to the lives of those you care about in every way possible. Often times the expectations of society is that we become victims of our disability and that we should relinquish control over the direction of our lives. I utterly reject this notion and have issues with those who take advantage of this wrongheaded view of disability. It is unnecessary and just plain wrong to place the responsibility and pressure on someone else which in most cases is our caregivers who have taken on those things we’re physically unable to do. In my case, I have frustrated so many doctors because I have not blindly followed their advice which in every case time has proven my position correct or how many times Lisa has been asked something as if I was not there and capable of making decisions which she tells the person talk to me because it’s his decision.

8) Looking back over the years since your diagnosis with ALS.would you do anything differently as far as how you've lived your life? Why?

Except for the first six months, I would have gone on trache ventilation sooner because it was at that point that ALS became just some faint background noise in my life. We were able to move forward with some stability and create a new normal since it was that period between diagnosis and venting that’s so difficult because of the state of flux created by the near continuous changes created by the ALS.

9) Some people who have lived with ALS for a period of years can be characterized as strong-willed. Would you consider yourself that way? If so, can you give some examples of how, in your life before your ALS diagnosis, that your strong personality made you an achiever, with a desire to excel?

Some might say stubborn as a mule instead of strong-willed in describing me so yes I probably consider myself this way. Before ALS, I was an Eagle scout; hiked 110 miles in the Rockies; achieved many academic, athletic and extracurricular activities honors because of my self-motivation. Even after diagnosis, I got married (a year after); had 3 daughters; started a printing business with my brother and recently becoming a full-time graduate student at the University of Michigan-Dearborn. One of the greatest compliments I have ever received in my life came from Lisa recently when she called me “a freak of nature” in regards to how I view my life and how I deal with the limitations of ALS.

10) You had plans to become an online professor. Is that still a goal, and if so, how close are you to realizing it?

Yes, I am about to complete my second year in pursuit of a M.B.A. and M.S. in Finance and have two years left to go. After achieving this I plan is to spend a year volunteering in Americorps while I start on my pursuit of a PhD. This all could change this summer as I research what organizations are providing guidance and assistance for disabled students and for those seeking employment. There are some good governmental programs and some ancillary assistance available but no organization that I know of dedicated to the education and employment of those who have disabilities. If I find this area lacking, I plan to create an organization to fill this void.

11) Are you considering any other possible expansion of your daily activities?

Well I am fairly busy with my current activities and responsibilities but I am always looking for that next hill to conquer. For instance, I am excited by the recent advances reported in Scientific American and elsewhere about combining robotics and brain chips that may soon allow me to re-takeover some of my physical care and capabilities.

12) You and your family experienced severe financial downturns when you were no longer able to work, and Lisa had to stay home as caregiver. Now you rely on Medicaid assistance. In one of your blog entries you mention that some PALS "choose death instead of fighting, just to save their family's finances." Did you ever consider that option seriously? Why or why not?

No for me I was so young and had no assets to lose when I was diagnosed that this wasn’t an option for me to consider. In this case, it was an advantage to still be poor because it relieved me of the stress and guilt of one more thing to worry about ALS taking from me.

13) In a related area, some PALS, when confronted with the knowledge that they need to go on a vent in order to live, call it quits. Did that thought ever occur seriously to you?

Sure that is a struggle for anyone especially since the medical community is so misinformed or projects their own trepidations at the prospect of dependency that a ventilator projects. Even though I have seen some improvement in this area, they still excessively overestimate the costs of life on a ventilator and even worse completely misrepresent what your life will be like. Often times they say you will be confined to a hospital bed, require 24/7 nursing and that your home will become a mini hospital. The reality doesn’t need to be this way. I don’t even have a hospital bed, only go to bed to sleep, have had two daughters since venting and have had a fairly active life. Outside the small, rolling utility cart from Sears that holds my ventilator and Cough Assist, our home looks normal not like a hospital. I am not saying that it’s easy but the limitations can be overcome and you will be able to again have some sense of normalcy if you choose it.

14) Please add any other thoughts you may have about the issue of long-term survival of PALS.

My final thoughts about this are if you think you want to follow my path quit thinking that ALS is a terminal disease but rather a disability or obstacle that you need to overcome. If you are going to go on trache ventilation do it sooner rather than later because you weaken yourself which could create issues to further complicate your health and you are struggling to breathe unnecessarily so just do it so you can move on with life. In my opinion if you are on noninvasive ventilation half the time your awake go ahead and switch. For anyone, I would say view your ALS as a gift. It has freed you of the everyday worry and stress that makes most miss the important things in life. Use your new found time to have fun, make a difference and most of all show those special people in your life how much you love them and what they mean to you. Be well and happy!

Sunday, May 17, 2009

One Christian's View on Gay Marriage

I realize the topic of gay marriage has many Christians grabbing for their Bibles and praying long and hard. I have seen many devout Christian leaders try to make compelling moral arguments as to why gay unions cannot be included as legally recognized civil marriage. They are so certain that if this is allowed to occur it's going to destroy the institution of marriage. I do not doubt the sincerity or convictions of their beliefs and I believe the vast majority are honorable in their intentions and mean no harm to anyone who's gay. As a Christian and heterosexual male who will mark 15 years of marriage this year, I have thought long and hard about this debate and have believed it should be stopped at one time but not anymore. My Christian brothers and sisters our opposition to gay marriage as currently formed is without logic and if we continue to pursue this present course we will be no better than the hypocrites who wrongly accused Jesus. Before you stop reading or quickly respond to what I am writing, all I ask is that you read my opinion in its entirety.

The basic arguments I have heard against gay marriage are it’s a sin in the Bible therefore morally wrong and can’t be legally allowed, marriage is to promote procreation so it should be reserved for a man and a woman and finally it should be reserved for the highest standard in an attempt to perfect the institution. All of these basic arguments and their various derivations all end up with the same conclusion that if allowed legally it will destroy the institution of marriage and weaken the very foundation of our country. Now for the sake of argument that the basic reasons of sin, procrastination and perfection of marriage are true and reasonable standards the debate should be over right? Wrong not so fast my friends we have some major issues to address. What about the not so little sins of adultery, murder, rape, incest, pedophiles and the biggest point of destruction for marriage divorce or other issues such as people not wanting and taking steps to prevent children, people too old to conceive or even another mortal sin of child abuse. In my view, the problem is if we want a prohibition on gay marriage then logic and our Christian values dictate that we must also insist on and create legal prohibitions of marriage recognition for anyone violating these other standards especially those who are divorced since even the most vocal opponents to gay marriage freely admit that divorce is a much bigger threat and will cause the destruction to the institution of marriage. If procreation is included in our standard, then anyone who is unable to do so should be restricted to civil unions. If we don’t change our position against gay marriage to include these other prohibitions and limitations we are no better than the hypocrites and I contend no different than the bigots who opposed allowing interracial marriage since we will again be picking on a minor issue while ignoring the elephant in the room. This is just this one Christian’s opinion.

I realized that my position may not be exactly clear after re-reading what I wrote above so I have added this section. I am in support of allow 65536 gay marriage since whose interpretation of the Bible will we use in setting the standards of who will qualify for a civil marriage? To me this is an impossible civic debate to have and besides to me civil marriage is only a legal technicality and has nothing to do with covenant made between two people in their religious viewpoint. My marriage bonds have nothing to do with the state's recognition of it.

Dedicated to Sandi, Kristin and Kavin as well as any other gay friends I have.

Friday, April 10, 2009

My Dad

My dad was my friend
He was a coach, teacher and mentor
My dad was my supporter
He always encouraged me to do my best without pushing
My dad was my buddy
He took me hunting, fishing and played games
My dad was my ally
He always defended me against those who would hurt me
My dad was my helper
He would make sure to be there to assist me when I needed it
My dad was a family man
He dedicated himself to love and support his family
My dad was a dentist
He devoted himself to his patients needs always mindful of their pain
My dad was a philanthropist
He was a generous man who gave without recognition
My dad was my pal
I miss him and wish he were here to see the great grandpa he would be

(I wrote this many years ago)

I need to add the greatest words I ever heard was "I am proud of you son"! It was 23 years ago today that he died and I hope I am making him proud of the man I have become because his life is my yardstick and I can only pray that I come close to the standards he set for himself.

Monday, March 9, 2009

Finally FANTASTIC News!!!

I am thrilled today to see the end of a dark age of scientific discovery in this country that occurred just as there were some amazing possibilities for real advances in areas of health and human suffering that haven't been seen since the discovery of vaccines and antibiotics. Today's total reversal of not only the ban on embryonic stem cell research which was far more reaching than even those who may have supported it realize but also changing a philosophy of mistrust of science and it's discoveries as somehow being against the world of faith in God and something beyond the bonds of this life. I do not believe that scientific discovery is disproving a faith in God but rather is proof of it. Every amazing discovery to me not only proves the greatness of God who with one breath created such an amazingly beautiful, diverse and complex living world but also brings a discovery of so much more that we do not understand. (Continued below video)

I believe that this dark age will be viewed in a historical sense the same as other periods of great discovery when people of faith truly held beliefs against medical advances from blood transfusions to open heart surgery to antibiotics which were held out as anti-Christian and even as something inherently evil. I have many friends and family who feel this to be the case about embryonic stem cell research and I have great respect for their beliefs but I do not share their interpretation of the Bible. I even contend the Biblical basis of their argument is thin at best and the primary Bible verse used in opposition to embryonic stem cell research can easily be interpreted differently. As I stated earlier I can understand the basic opposition to federal funding of this controversial research but as I also stated the ban had a much more restrictive consequence. As with many arguments made against this research, the opposition frequently stated that the ban did not prevent privately funded research which was disingenuous at best. The reality has been that the ban prevented all research since the research facilities had to totally separate the privately funded lab research from any federally funded research. This eliminated nearly all universities from doing research and most companies since they received some level of funding making the ban a virtual total ban on the research. This encroaches on my right as a supporter of the research and imposes a minority belief on the majorities belief. This is a dangerous precedent which would grind our country to a halt. I feel those of you who believe this research and any resulting treatment is wrong have every right to not receive the treatment and you should withhold your financial support from any organization which does support it but in the United States you do not have a right to impose your beliefs on me which are counter to my beliefs.

As I sit here as a disabled person who's a quadriplegic on a ventilator due to the effects of ALS, I have more hope today by this reversed. I realize I may not live to see the reversal of my condition but today was a major hurdle eliminated for the possible reality that I may one day walk, dance and hug the friends and family who I love by shedding the physical bondage and enslavement of my disability. Long ago I shed any chains on my mind and spirit to find a wonderfully fulfilling life but today the hope I feel liberates me a little more. It is through hope and faith that ANYTHING becomes possible and then a reality because to me nothing is more powerful than having them in your life. I am living proof of their power with the hurdles these two words have helped me overcome in my life which is why I know all of us together can overcome the difficulties we have had thrust on us recently with the economic crisis if we just have HOPE AND FAITH that better days are on the horizon of our lives!!!

Jeff Lester

Saturday, January 3, 2009

Outrageous ideals

The following was written in objection to a petition recognizing ALS on July 4th the anniversary of Lou Gehrig's famous speech. My response follows. I am sharing this not to drum up support for the petition or ALS for that matter but to highlight the need for us as a country and individuals to examine what our ideals truly mean. You can view the petition at

His objection:

I think this is utterly ridiculous
The 4th of July is or should be kind of sacred for our country and not used as a poor box request
Your organization makes a mockery of people begging for money
Your pain is regrettable but get a grip
There are people more in need than you
Leave our independence day alone
Maybe you should pick another day like Christmas or Thanksgiving or possibly New Year's day
We get e mails asking for money or housekeeping or babysitting help
That is what family is for
Rethink this request and take care of your own

Mariolive D.Landon


Dear Mr. Landon,

I read your objection to a recognition of ALS on July 4th with awe at the enormous ignorance that you displayed about what ALS is or even no reading of the petition apparently since you seem to not realize that July 4th was only chosen because it's the anniversary of Lou Gehrig's famous speech. He died from his ALS less than 2 years later. While I understand an objection based on a patriotic argument (I don't see how recognizing ALS would diminish the holiday but I would prefer a different date only to have more of a spotlight on ALS) but I do not understand the vile language you use to defend your position. Certainly from different perspectives there are others who are equally in difficult circumstances but for you to say "Your organization makes a mockery of people begging for money. Your pain is regrettable but get a grip. There are people more in need than you." and "We get e mails asking for money or housekeeping or babysitting help." are so ignorant that you're either a deliberately cruel person or one not the dumbest people I have had the misfortune to come across.

I have had ALS for over 15 years now and over 11 of those years on trach ventilation. Exactly who would you say are so much worse off than those with ALS? It strikes individuals without warning and because of no inappropriate action of the person (like smoking, drinking, over eating etc.) often taking an agonizing six months to a year to be diagnosed. It strikes as young as teenagers to the old. Once the condition starts it begins a relentless assault on the persons physical body with death occurring in less than a year for some with 50% dead within 3 years of diagnosis to 90%+ dead within 5 years. Death however is not the worst of this disease and for many is a wonderful relief from their agonizing journey with ALS. Some of the highlights of my journey: unexpectedly falling with my face stopping the fall because I was unable to blunt the fall with my arms since they were weak which occurred many times including in the middle of a mall; becoming weak to where I couldn't feed myself or hold a cup so primarily my wife had to start feeding me like an infant; having my pants fall to my ankles in the middle of the freezer section of the grocery store which I was unable to bend over to pull them up having to call my wife who happened to be in another aisle; at first needing assistance to bathe or get on/off the toilet to becoming totally dependent on my wife to put me on a bedpan and wipe my ass when I am done; seeing my ability to speak go from someone who gave speeches before 5000 people to someone sounding like when they're at the dentist to someone who can't be understood but by only a handful of family members as I drool all over myself; having a itch you can not scratch or a bug biting you as you try to get someone's attention to kill it; going from someone who enjoyed an active life to becoming a quadriplegic on a ventilator who has been unable to even hug my daughters for 11+ years; getting to watch other fathers coach their kids or carry their kids on their shoulders or dance with their daughters at a wedding as all I can do is watch from my confinement in a wheelchair. Yes you're right we are so much better off than most.

Even though most have taken every responsible step they could have in regards to having insurance, savings etc. the financial devastation inflicted on us and our families is as bad as the physical devastation. I was dropped from my health insurance within six months of my being unable to work and forced into the Medicare system. This causes an unbelievable strain on the family as I can not work and since my wife became my primary caregiver she can not work. This lead to bankruptcy like most face with long-term diseases and the loss of our home as we are forced into the Medicaid system. But yeah you're right we are so unreasonable to seek some recognition and help.

The most infuriating part of your assumption is that in some way our families have to step up more, how dare you in ANY WAY imply this!!! My wife, who like most ALS caregivers, has given so much of herself in dedication to my care that she's put her health on the line. She has in an extremely conservative estimate saved the system well in excess of a million dollars. What is her thanks for this dedication? A student loan that has gone from $20,000 to over $70,000 because she has not been able to work. Further because of jerks who think like you especially under the Bush administration, the extremely limited assistance to give her some relief has been taken away and they ask her to do more and more. I know it is ridiculous we have to come begging for crumbs (1/one millionth of what the government has given just to AIG or the Iraqi's) because my wife and other's like her should be turning down an over abundance of assistance and there should be adequate medical research (I am not even talking about the same amount that the government has spent building a stadium for a billionaire owner and millionaire players called the Tennessee Titans). Please sir may we have some more gruel.

Take your false patriotism, sanctimonious attitude and ideals that say no help for those who need it because family should do it attitude (yet everyday you walk by a starving family in need who are your family) and crawl back under the rock from which you came. We have seen where your type of ideals have lead this country and we reject them for what they truly mean, stepping over your brother as he lay bleeding to death under your feet! No more!

Jeff Lester

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