Ragingbear's Definition of ALS

ALS robs you of your physical abilities by slowly stripping them away in an agonizing and unrelenting manner while at the same time challenging you mentally as well as any perceptions of what you thought life really means. It doesn't just impact those who have it but anyone who is in the person's life especially their nuclear family. It can reek total devastation physically, financially, emotionally and spiritually on anyone it touches. It can be the ultimate destroyer of lives and families and is the monster that makes your worst nightmares insignificant by comparison.

However, ALS is also an opportunity to redefine your life and realize what is truly important in it. It is not easy and you must continually battle this monster once it enters your life but it can be tamed and locked in a cage to where you can live a happy and fulfilling life. In the end if you and those around you can summon the strength to fight the beast that is ALS not only will you discover the true beauty of this life but you will assure that while the monster might cause your death it will not take your life. I know this to be true because I have been fighting this monster officially for nearly 17 years and nearly 13 of that on a ventilator.

Your friend in the fight,.

Jeff Lester ~ THE Ragingbear

My Opinion on Traches for A.L.S.

I have been on trach ventilation for 11+ years and have not regretted it for one moment nor have I known anyone who has regretted it with the exception of a very few who had complications like infections or from other unrelated health issues and died because of the problems. My question for those of you leaning toward not getting a trach is why are you selling your life so short? You still have much to contribute and you can have a fulfilling and happy life on trach ventilation.

If anyone is substantially on bi-pap you are essentially the same as trach ventilation because you are attached and dependent on a machine to breathe and live. The only difference is with a trach you breathe back to a normal level which returns your energy, appetite, zest for life and other things return to the levels they were before being diagnosed with A.L.S. Now don't get me wrong the first 6 months, give or take, are difficult as you heal from the surgery but if you are able to speak and or eat before the surgery there is no reason you cannot after. They will probably say that you have to have a balloon style, non-fenestrated trach to prevent aspiration which can make speaking and eating more problematic. However, many PALS including myself still have done excellent without this extra level of protection. Is life easy being basically a quadriplegic on a ventilator? NO but it can be done where you normalize your life and have a very fulfilling and happy one. I still sleep in a normal, king size bed with my wife and each day she moves me to my leather Lazy-boy where I am bathed, eat, play with the kids, watch television and mainly work on my computer. We have actually expanded our family from one daughter to three daughters (ages 14, 7 & 4) SINCE I have been on trach ventilation. I have gone to games, parks, trips to weddings etc. in my wheelchair since being on trach ventilation. At 42, I am even entering my third year of graduate school at the University of Michigan-Dearborn (I live in Missouri) where I am pursuing a M.B.A. and a Masters in Finance. It is becoming increasingly easier to live an independent life as technology advances. I fully expect within a few years that I will be much more independent with the combination of brain implants and robotics which is currently being tested with chimps.

I can directly attest to the ignorance of the medical community about trach care, cost and most especially on the issue of quality of life which it's criminal what people are told by doctors on this last area. In my case, they told me that: our home would become a mini hospital WRONG; I would need 24/7 nursing care WRONG (my wife is my only caregiver); I would have to use a hospital bed WRONG (still sleeping in a normal bed with my wife); I would HAVE TO have a feeding tube within a month WRONG (after 11+ years I don't have one and I am still eating a fairly normal diet with some minor exceptions. This may not be typical but neither am I alone in discovering that much of the issues with eating has to do with the breathing issue); my wife would not be able to move me by herself WRONG (she does it easily with a hoyer and a head support sling); I would be confined to bed or at the very least to my home WRONG and WRONG (with a power wheelchair I have gone about anywhere); and the biggest that I would have to be in a nursing home within three months and dead within a year ABSOLUTELY WRONG!!! I could go on and on about this but I am too busy having a FANTASTIC life. Is it difficult YES, do I wish my wife had more assistance ABSOLUTELY and would I like better equipment SURE but I have not regretted my decision for one moment. My advice to most PALS especially those who are younger and have children still at home is to give a trach a try for 6 months to a year and if you don't like it get off of it then because you will be just as dead. I don't understand the whole respect the not venting decision because the decision is always made with at best incomplete information and in most cases inaccurate information and it's usually done when the person is weakened from the breathing issues and the continuous change caused by the disease to that point. Amazingly we allow people who are toward the end of their life when they are the equivalent to someone who is drunk to make a life and death decision when they would be arrested for driving or not be legally bound to a contract they signed. How many times in your life have you thought you wouldn't like something and even resisted it only to find out it was not nearly as bad as you imagined and in some cases like food you cannot believe what you have been missing. Be well and happy!

Your friend in the fight,

Jeff Lester (ragingbear)

Age 42, married w/ 3 daughters (all born AFTER diagnosis)

Diagnosed 10/'93 and on trach ventilation since 12/'97

3rd year graduate student at the University of Michigan-Dearborn

Live in Lebanon, Missouri

You too can have a happy & fulfilling life by learning to LIVE with ALS!!!

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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 http://www.petitiononline.com/122296/petition.html

..............................................................................
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
Tennessee

THIS IS MY RESPONSE:

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
Missouri

Please Do not Forget Us!

Dear President-Elect Obama,

I am writing you as a supporter, both in promoting your candidacy with words and financially, and as a member of a small, silent minority in this country the severely disabled from disease or injury which has made us wheelchair bound, dependent on others, sometimes ventilator dependent and confined to our homes or facilities. I recognize during this time of transition you have many critical and defining issues to plan for and deal with but; please do not leave this long forgotten minority that knows no bounds of race, religion, creed, age, sexuality etc., out of the change we so much desire.

Those of us afflicted did not seek nor do we desire to be wards of the system. We merely pray for assistance to achieve as normal a life as possible, that the government not add to our burden and that those who choose to help care for our needs that they not be punished for making this choice of ultimate love but rather receive as much support as possible. Those of us who are disabled mainly have one wish to have meaningful lives in which we contribute to the greater good of society. You will find no group with a bigger desire to answer your call of service to country and with today’s technology, there’s no reason we can’t do it. We only need the chance which you have the power to provide!

I do not presume to fully represent all those coping with severe disability nor do I believe my circumstances are any where close to the most difficult stories of others with severe physical disabilities. However, I will use my now 15 year journey with ALS, Lou Gehrig’s Disease, to outline some of the essential needs or barriers we face that have been long ignored. The most fundamental of these is the fact that we are treated as living ghosts in our society. This primarily is a result of society’s singular focus on physical attributes. There can be no starker example of this than when I was diagnosed as a single man at age 27 and told to go home and plan my funeral because my life was over. As now a married, father of three daughters at age 42 I rejected this thinking which is why I am currently a graduate student in the University of Michigan-Dearborn’s online program. The problem here is the archaic rules of Social Security and Medicare which keep us dependent on and virtual prisoners of these systems. This is a near insurmountable mountain keeping us from working and a more normal life which we desire. A second and related point is we just want a CHANCE to prove what we’re capable of contributing to society. When I was seeking assistance from Vocational Rehabilitation (the agency setup to assist those who are disabled to get back to work) to further my educational goals and professional goals to become a professor, I was actually told “your goals are too lofty, but we will help you become a bookkeeper . . . We do not believe you can achieve your goals.” Really in America where anything is supposed to be possible, is the position of a governmental agency to squash aspirations, another barrier.

In your campaign, when speaking of health care issues you alluded to the reality that many bankruptcies are the result of medical issues. Within the disability community, we account for most of those bankruptcies due to a perfect storm of government rules whose programs we’re forced into and insurance companies who hurl as many barriers at us as possible until they can find any excuse to eliminate their obligations to us. I can write pages on this issue, but I will focus on a situation that occurred me just last year. My long-term disability benefits were suddenly halted after 13 years because they decided they had overpaid me because they had not subtracted my daughter’s Social Security benefits meant to assist with their care. Had I chosen to have no children my disability payments would have been unaffected. Their position is to dollar for dollar reduce their obligation essentially taking Social Security benefits meant to assist disabled parents care for their children. This unjust loophole secretly utilized by insurance companies to shirk their obligations must be closed immediately.

Finally, the most significant point is the lack of recognition and even punishment of loving caregivers everywhere Even though caregivers at the very least are keeping us at home and saving the government the excessively high cost of nursing home care, they receive little if any compensation or even physical relief. Even worse they are often financially punished for their amazing choice to stand by us. In my wife’s case, she has seen a student loan grow from around $20,000 to over $70,000 because she has been unable to work on account of caring for me. She can’t even get rid of or reduce this debt if she goes through bankruptcy. This albatross of debt around her neck is outrageous especially when you consider that she has conservatively saved the system over a million dollars in nursing home costs.

Those of us dealing with severe disabilities don’t want a hand out but just a hand shedding the barriers to as normal a life as possible. We hope to be a part of the movement of change that you are leading to do our part to make this a better country. Please don’t lose sight of our nearly silent minority and allow us change our destiny along with that of our country. Be well and happy!

Sincerely,
Jeff Lester
Lebanon, Missouri

It's Time!!!

Originally written July 22, 2007 on my forum.

Today I woke up and as usual I had to be moved via hoyer lift to my Lazyboy to get cleaned by my wife, be fed by my wife and finally have the computer rolled in front of me so I could at last begin the only independent activity left in my life, working on my computer with the key to this independence a HeadMouse. Today was the same as any other day especially the last 10 years since being diagnosed with ALS where each day blends into the next with the only things breaking the monotonous pattern being the occasional outing, visitor, holiday or my favorite a hospital visit but I felt something different as I began to feel a boiling in my gut. No it wasn't last night's meal or the summer heat getting to me, it was anger. It kept building to the point where I wanted to scream ENOUGH!!! Then it came to me, "It's time!" It's time to stop being nice and DEMAND that ALS and diseases like it cease to exist. It's time for us to be treated just as humanely as the prisoners at Guantanamo Bay. It's time to stop the legal holocaust against our families that allows us and our families to be stripped financially even when we have done everything correctly and it causes some PALS to choose death instead of fighting to just save their family's finances. IT'S TIME to DEMAND much more than the few pennies we're given to find a cure but instead get the billions put toward erectile dysfunction, hair loss, fat reduction, unjustified wars, bridges to nowhere, melting ice and all the other wasted money on trivial things to SAVE OUR LIVES!! Finally, IT'S TIME for us to stand up (figuratively for most of us) and in one voice yell, "We're MAD AS HELL AND WE'RE NOT GOING TO TAKE IT ANYMORE!!!"