ALS (Amyotrophic Lateral Sclerosis): Letter From a Man with ALS

A Random Letter From a Victim of ALS

By: Fat Lester

The following are the contents of an email that a friend and colleague passed along to me. He is raising money for the Muscular Dystrophy Association (MDA) to help find a cure for ALS (Amyotrophic Lateral Sclerosis).

Out of nowhere (he does not know this man - hence the anonymity - nor does he know how the man obtained his top-secret email address. That said, he found the letter quite the motivational tool to summon his best efforts in attempting to solicit donations from family, friends and social media contacts, and as one of those whom he asked to help spread his message, I was given his permission to publish the contents of the letter he received from an actual ALS victim provided I keep the gentleman's identity private and include no information that could lead to his identity being tied to the substance of the message itself.

Without further adieu, here is the letter minus the greetings and signatures:

Dear Peter,

On January 25, 2012 I was diagnosed with ALS. From that evening on-my life has changed drastically. I have always been a very active person but due to the progression of the disease, my activities are limited. I left work shortly after finding out I have ALS to spend more time with my family and to acquire much needed rest. My symptoms were, and still are, muscle aches/twitches, headaches, stiff neck, noticeable muscle loss in my chest/back, cramps in my legs/feet and general fatigue.

My upper body is my weakest and biggest problem at this time. It is now getting difficult or impossible to do some of my everyday activities because I can barely raise my arms. Shaving, bathing, dressing, getting in and out of the bed are all a challenge and require assistance.

The people at MDA of Greater New Orleans have been a Godsend. They are so helpful and are always willing to help you with any issue you face. The staff at the MDA clinic that I go to every 3 months is also wonderful – they are friendly, knowledgeable professionals that will do anything to help.

I have a very supportive family and close friends that are always there for me no matter what my needs are. My wife and I have met some great friends, other pALS (People Living with ALS) and their wives. We get together often for dinner and other activities and find that these are the most wonderful relationships. We are all dealing with the same struggles, even though we are at different stages with ALS, but understand what each other is going through. This group bond that we have as made a huge difference in our lives.

If it weren’t for organizations like MDA I would not have had the opportunity to meet these pALS and receive the help we need. I know there are more hard situations in the future, but with all the support I have, I will get through it all.

Thank you for supporting the Covington Lock-Up, MDA and my family.

Since we're keeping the author of the message anonymous, there will be no signature or goodbye message included here. That said, if that does not touch upon a soft spot in your heart, one must wonder if you even have one.

That disease (ALS) is among the most debilitating and torturous illnesses in the history of mankind, and my heart goes out to everyone and anyone who has ever suffered from it, God rest their souls.

Amyotrophic Lateral Sclerosis (ALS)

The friend posted a blog about ALS, why he is motivated to help find a cure and why he feels that you and anyone else reading his blog should donate to the MDA Lock-Up event Thursday, May 23 in Covington, Louisiana. The friend will be "arrested" as a "repeat offender" and will need to post "bail" (your donations) in order to be granted release from the makeshift holding cell at the restaurant at which the event is being held.I will ask all readers of this blog though to please consider donating anything you can --- even if its just a single dollar --- to his "bail bond" as finding a cure for ALS is about as good a cause as one could conceive of to financially support.
If you can afford to help out, please do so, and know that his company, EGAN Medical Equipment, will be matching each and every dollar donated up to $1,000.

Unruly Women's Threats, Demands: Criminal Fraud or Postpartum Psychosis?

Crazy Postpartum Moms Make Company Rethink Generous Return Policy

By: Fat Lester

This article began as a comment in response to an article written by Jennifer Moyer about postpartum psychosis.

Reading Ms. Moyer's article left me wondering whether or not a disgusting behavior I've experienced at work far too many times is the product of a sociopathic scam artist engaging in criminal, fraudulent behavior; or a mentally ill woman desperately in need of some help. Prior to reading Moyer's article, I had always presumed that the behavior was the former, never even so much as considering the latter.

I work for a company that sells maternity and postpartum supports (orthopedic undergarments designed to provide physical support to women during and post-pregnancy).

We often receive requests for refunds months after women order a maternity support such as the Prenatal Cradle. The obvious suspicion here is that these women want to have their cake and eat it too, using the product until it is no longer needed, then attempting to return it for a full refund after giving birth.

These women all seem to have one thing in common: a mentality that that they deserve and are entitled to receiving their money back despite our company totally fulfilling our obligation for the initial transaction. It's not like these requests come days or weeks after the orders are placed (we do receive such requests, but these often are eligible for an exchange or refund).

The ones that come months afterward are those to which I am referring. The women will call with a tone-of-voice clearly meant to bully the person on the other end of the line. They threaten everything from writing negative reviews to filing chargeback disputes with their credit card companies (we've yet to lose one when they follow-through on these requests). Each time, it appears as though the woman genuinely believes she's the first to ever think of the idea, and thus should be able to pull the wool over our eyes without any problem.

When informed that requests made so long after the initial transaction are ineligible for a refund, they have been known to become so abusive that the owner of the company ordered all customer service personnel to immediately discontinue such calls when the customer becomes abusive and/or threatening.

Anyway, do you think that this behavior would fall into the category of postpartum psychosis? That certainly would explain this rage-fueled mentality that until now we've only been able to explain by writing them off as lunatics, bullies and/or scam artists.

The question is whether or not they planned to attempt to get their money back prior to giving birth, as that would answer the question of whether or not they are simply scam artists who have realized that they can often have their cake and eat it too by threatening online retailers, many of whom simply give in to such uncivilized behavior. My employer stands firm on principle, insisting that such demands constitute fraud, and has even suggested that the act is criminal in nature.

What is your opinion about this? Are these women really merely suffering from a legitimate mental illness or are they simply dishonest scam artists who have figured out how to abuse the system successfully?

Good Doctors vs Bad Doctors

In my experience growing up in a family that eats, sleeps and breathes healthcare and medicine (father owns several healthcare-related companies; mother is a primary care nurse practitioner and is also the owner of a Covington skin care spa; and a sister who is a MD (ENT, to be specific), I have a few thoughts about an article I came across at About.com about (no pun intended) how to distinguish good doctors from the not-so-good ones. I take exception to the title of the article, which is why I will refrain from using it here.

The article mentions a survey that was obviously conducted in such a way that doctors would appear to be dishonest creeps once the results were in. Not surprisingly, the survey was conducted by Massachusetts-based researchers, most affiliated with Harvard University.

I'd like to see the context and the way in which the questions were presented and phrased before taking any statistics from the study at face value. There surely must have been more information provided to the doctors surveyed than the minimal information reported in the 'Patients.About' article. No doctor would answer the questions supposedly asked without context. The author of the piece included a link to the abstract, but offered nothing by way of details in terms of the use "gotcha!" questions in conducting the survey.

"Good" Nurse Practitioner Pam Egan

That said, I somewhat agree with the 6-point plan for patients proposed as a solution to a problem the article claims exists (although this author has his doubts about the size, scope and nature of the problem, if it even exists at all). The alleged problem is doctor dishonesty, and the six-point plan suggests such things as seeking second opinions, trusting one's intuition and urging patients to not 'put up with arrogant doctors...'. To read the entire piece, see the above link (for more practical reading, continue on with this piece).

To begin, there is this thing called Google these days, and anyone in the civilized world can use it to access any information that exists in the world to be presented at the user's fingertips at the speed of light. Anyone taking a medication for which the person has any questions, it never hurts to do a little self-research to compliment the information provided by the doctor and/or manufacturer of the drug.

Additionally, intuition is an extremely important and often overlooked component of finding the best doctors. If you feel uncomfortable around your doctor, it's probably not because he or she is wearing a white coat and has loads of credentials that may make he or she appear to be some sort of authority figure to some patients. If one feels uncomfortable around his/her doctor, there's probably a good reason --- even if one cannot pinpoint the exact source of the discomfort.

Patients should always ask about treatment options. If a doctor does not provide all or at least most of the credible information available via the internet, it may be time to either ask the doctor the reason why he or she omitted one of more treatment options for whichever condition or disease the patient was diagnosed. If the answer is unsatisfactory, it may be time to find a new doctor.

I would take patient reviews of physicians with a grain of salt. As a business owner, I am well aware of the myriad of tactics, tricks and paid services businesses (inevitably including some physicians, clinics and other healthcare professionals) use to artificially control and/or manipulate their own respective reputations. This may come in the form of reviewing oneself under a different name, or exchanging friendly reviews with other businesses, professionals, etc. Other tactics include writing false negative reviews of competing businesses/professionals and paying companies to manage reputation. A number of companies have cropped up over the past 18 months purporting to specialize in "reputation management", for what its worth.

Furthermore, there are myriad reasons why a legitimate customer may leave a disproportionately negative review of a company or individual. Some customers, clients and patients lack the degree of honesty and integrity necessary to be credible when writing a review of a business, person or organization. Just look at this example of an incident involving a couple of scam artists and a used bedside commode.

I wouldn't seek a second opinion unless the health or medical issue/condition/disease was very serious, or if I intuitively felt as though the doctor was (or may be) wrong.

I wouldn't attempt to self-diagnose, which is essentialy what differential diagnosis is when conducted by the patient; but I would research the symptoms. If another condition seemed more plausible than the diagnosis issued by the physician, then it would be time to seek a second opinion.

One final means of weeding out bad doctors is to talk with them about nutrition. The days of reactionary 20th Century medicine are over. The amount of research that has been conducted involving the relationship between nutritional deficiencies and propensity for disease is staggering, and probably more than double the amount of such information available just ten years ago when vitamin D supplements contained a plant-based form of the nutrient that is not well absorbed by humans (vitamin D2, ergocalciferol), but which is cheaper to produce than the more bioactive (readily absorbed for use by the body) form used in most supplements today (vitamin D3, cholecalciferol).

21st Century physicians should not be averse to discussing the role of nutrition in the big picture of one's overall health. The information is readily available, and slowly but surely the stigma long assiciated with doctors, nurse practitioners and other healthcare professionals making claims regarding nutrition (or the lack thereof) as a contributing factor to disease are (or at least should be) long over. The peer pressure physicians face with regard to the role of nutrition in medicine has started to subside in recent years, and a genuinely good primary care, family/general practice doctor who is well informed will ask his or her patients if they'd like to have a blood test conducted to measure one's nutrient levels in order to identify any potentially harmful deficiencies.

Be very wary of those general/family practice and/or primary care doctors who either won't speak in depth about the role of nutrition towards overall health, or who pooh-pooh the notion that vitamins and supplements can help to prevent disease and/or other health maladies.

Following the advice outlined above should help patients find a good doctor who is trustworthy as well as informed.

Drug Shortages in the U.S. Completely Unacceptable

There is absolutely no excuse for an absence of anesthesia drugs in a hospital in the United States of America preventing a surgery to be performed on schedule or as planned. I am not interested in hearing the various excuses being made by the responsible parties.

It absolutely incredible to me that criminals on the street have no problem whatsoever obtaining high-end pain relief drugs yet major hospitals in the U.S. have to issue their patients Tylenol because of these so-called "shortages".

It's not just hospitals that are finding themselves unable to obtain sufficient quantities of medicine to meet patient demand. Retail and infusion pharmacies are also finding themselves on the short end of the stick, unable to obtain the medicines their patients (customers) need.

Can pharmacies sue drug manufacturers for failing to fulfill demand?

It might be time to begin exploring the possibility of instituting fines for pharmaceutical companies that fail to meet demand. Another option would be to coerce them into entering binding contracts which would hold them liable for compensatory damages in the event their supply fails to meet demand.


Whatever the solution, this entire fiasco is reminiscent of paragraph in George Orwell's 1984 about razor shortages and shortages in general, and for this to be happening in the United States is surreal in addition to being completely and totally unacceptable.


This is America, and if the existing pharmaceutical firms aren't able to get the job done, then it's time for a new competitor to emerge who isn't afraid to create enough of a supply to meet an ever-increasing demand.