NEWS & EDITORIALS

LOCAL MULTIPLE SCLEROSIS RESIDENT RECEIVES NATIONAL RECOGNITION:

William L. Bill” Brayer of Edmonds, WA was recently awarded “The MSF Outreach Leadership Award for the year 2007” inscribed: “for his Dedication, Compassion, and Vision that has continually inspired others to overcome the Challenges of Multiple Sclerosis.” This is not the first time that Bill has been recognized and honored nationally by the Multiple Sclerosis Foundation (MSF) headquartered in Fort Lauderdale, Florida. The presentation took place on a recent Alaskan cruise sponsored by MSF for a large charter group of people with Multiple Sclerosis, their families and friends from all over the country. “This is our way of acknowledging Bill’s exemplary record of service to the MS community” said Jules Kuperberg, MSF Executive Director.  Bill and his wife Carol were invited guest of MSF.

Bill is the Founder/President/CEO & Executive Director of MS Helping Hands- MSHH, a non –profit 501 (c) (3) stand alone Multiple Sclerosis Corporation located in downtown Edmonds, WA.

He is also the Founder & Director of the MSHH Donor Closet, a one of a kind type Durable Medical (DME) & Mobility Equipment (ME) recycle resource that has recycled over 49,000 items since October 1999 to people with MS and others who have been denied these items by Medicare, Medicaid, DSHS, private insurance companies and other social service agencies and who are undergoing financial hardships. They have fallen through the cracks of the Social Services System.

Bill established a Financial Assistance Grant Program for people with MS residing in the State of Washington that has already awarded over $70,000 in financial assistance grants since October 1999.

He has served as Facilitator/Co-facilitator of the Sno-King MS Support Group, one of the largest and most active MS Support Groups in the country for about 20 years.  

There is an estimated 2,750,000 million people who have Multiple Sclerosis with an estimated 50,000 + living here in the northwest alone. Billions of dollars are being spent on medical research and the development of drugs, but no where near enough is spent on the people themselves who have the disease. Bill believes we should take care of those people with MS now, and that is why he often says “Let’s stop the bleeding and then treat the wound.” This is just the tip of the iceberg. Those numbers are growing daily.

Bill retired from owning his own business in 1998 at the age of 65 with Secondary Progressive Multiple Sclerosis.  At that time there had been no known tests or studies done for Secondary Progressive MS and there was no known drug treatment available that would provide any relief. 

Bill is 74, Married, has 5-married children & 10-grandchildren, is a resident of Edmonds, WA since 1979, has had Multiple Sclerosis symptoms for 56 years. He was officially diagnosed in 1987. He has had 2 heart attacks, with the last one in 2002 resulting in open heart surgery (4-way bypass with a new aorta valve inserted into his heart), and he survived a serious bacterial blood infection (Endocarditis) that attaches itself to an artificial valve and if not detected and treated in time can be fatal.          

He keeps himself busy so he can live & cope with having MS. He doesn’t do well when he is not busy or involved with some project, usually having to do with MS. Bill says everyone should have a hobby or interest and his is MS, as he averages between 55 to 60 hours a week with what he does. He is also an usher at his church.

Bill says if it weren’t for his wife, Carol, he wouldn’t be able to do half of what he does. Carol is extremely active and very supportive of Bill’s MS related activities.

She is the well spouse and often reminds him that he doesn’t have MS, “We Do!” In a marriage when one has MS, both learn to live and suffer with it! They know that living with MS is not an option; it is a way of life.

Everyone who has MS needs a good support system. It starts with the Well spouse, children, parents, siblings, friends, and MS support groups where you share with others who have MS as they know how you feel and what you are going through.

Bill walks in their shoes, and often says, “Been there, done it, and am still doing it!” I really know how you feel!

Jules Kuperberg

Executive Director

Multiple Sclerosis Foundation

6350 North Andrews Avenue
Fort Lauderdale, Florida 33309-2130

Call toll-free (within USA): 800-225-6495

for

William L. “Bill” Brayer

23910 – 102^nd Ave. W

Edmonds, WA 98020

(206) 718-0894

   OTHER ARTICLES ON THIS PAGE:

HOW TO SURVIVE A HEART ATTACK ALONE

IS IT A STROKE?

AN ATTORNEY'S ADVICE

LIVING WITH MS, IT'S NOT AN OPTION! #1

LIVING WITH MS, IT'S NOT AN OPTION! #2

IT'S TIME WE STAND TOGETHER!

SAFETY TIPS FOR WOMEN

 HOW TO SURVIVE A HEART ATTACK ALONE

Definitely something to keep in mind.

From F. Daniel Rochman MD

            Let's say it's 6:15 p.m. and you're driving home (alone of course), after an unusually hard day on the job. You're really tired, upset and frustrated.  Suddenly you start experiencing severe pain in your chest that starts to radiate out into your arm and up into your jaw.  You are only about five miles from the hospital nearest your home; unfortunately you don't know if you'll be able to make it that far.

WHAT CAN YOU DO?

          You've been trained in CPR but the guy that taught the course neglected to tell you how to perform it on yourself.  Since many people are alone when they suffer a heart attack, this article seemed to be in order.  Without help, the person whose heart stops beating properly and who begins to feel faint, has only about 10 seconds left before losing consciousness.  However, these victims can help themselves by coughing repeatedly and very vigorously.

            A deep breath should be taken before each cough, and the cough must be deep and prolonged, as when producing sputum from deep inside the chest, and a cough must be repeated about every 2 seconds without let up until help arrives, or until the heart is felt to be beating normally again.

          Deep breaths get oxygen into the lungs and coughing movements squeeze the heart and keep the blood circulating.  The squeezing pressure on the heart also helps it regain normal rhythm.

In this way, heart attack victims can get to a hospital.

            Tell as many other people as possible about this, it could save their lives!

 From Health Cares

Rochester General Hospital via

Chapter 240s newsletter AND THE BEAT GOES ON ....

(Reprint from The Mended Hearts, Inc. publication, Heart response)

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IS IT A STROKE?

This might also be a lifesaver if we can remember the three questions! Sometimes symptoms of a stroke are difficult to identify. Unfortunately, the lack of awareness spells disaster. The stroke victim may suffer brain damage when people nearby fail to recognize the symptoms of a stroke.

Now doctors say any bystander can recognize a stroke asking three simple questions. 

·        Ask the individual to smile.

·        Ask him or her to raise both arms.

·        Ask the person to speak a simple sentence.

If he or she has trouble with any of these tasks, call 9-1-1 immediately and describe the symptoms to the dispatcher.  After discovering that a group of non-medical volunteers could identify facial weakness, arm weakness and speech problems, researchers urged the general public to learn the three questions. They presented their conclusions at the American Stroke Association’s Annual Meeting last February.  

Widespread use of this test could result in prompt diagnosis and treatment of the stroke and prevent brain damage.

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AN ATTORNEY'S ADVICE! 

1.   The next time you order checks have only your initials (instead of first name) and last name put on them. If someone takes your checkbook they will not know if you sign your checks with just your initials or your first name but your bank will know how you sign your checks.

2.   When you are writing checks to pay on your credit card accounts, DO NOT put the complete account number on the "For" line. Instead, just put the last four numbers. The credit card company knows the rest of the number and anyone who might be handling your check as it passes through all the check processing channels won't have access to it.

3.   Put your work phone # on your checks instead of your home phone.   If you have a PO Box, use that instead of your home address. If you do not have a PO Box, use your work address. Never have your SS# printed on your checks.   You can add it if it is necessary. But if you have it printed, anyone can get it.

4.   Place the contents of your wallet on a photocopy machine, copy both sides of each license, credit card, etc. You will know what you had in your wallet and all of the account numbers and phone numbers to call and cancel.   Keep the photocopy in a safe place. I also carry a photocopy of my passport when I travel either here or abroad. We've all heard horror stories about fraud that's committed on us in stealing a name, address, Social Security number, credit cards, etc. Unfortunately I, an attorney, have firsthand knowledge because my wallet was stolen last month. Within a week, the thieve(s) ordered an expensive monthly cell phone package, applied for a VISA credit card, had a credit line approved to buy a Gateway computer, received a PIN number from DMV to change my driving record information online, and more.  But here's some critical information to limit the damage in case this happens to you or someone you know:

·        We have been told we should cancel our credit cards immediately. But the key is having the toll free numbers and your card numbers handy so you know whom to call. Keep those where you can find them.

·        File a police report immediately in the jurisdiction where it was stolen.  This proves to credit providers you were diligent, and is a first step toward an investigation (if there ever is one). 

·        But here’s what is perhaps most important (I never even thought to do this):  Call the three national credit reporting organizations immediately to place a fraud alert on your name and Social Security number. I had never heard of doing that until advised by a bank that called to tell me an application for credit was made over the Internet in my name. The alert means any company that checks your credit knows your information was stolen and they have to contact you by phone to authorize new credit.  By the time I was advised to do this, almost two weeks after the theft, all the damage had been done.  There are records of all the credit checks initiated by the thieves' purchases, none of which I knew about before placing the alert.  Since then, no additional damage has been done, and the thieves threw my wallet away this weekend (someone turned it in). It seems to have stopped them in their tracks.

 The numbers are:

Equifax: 1-800-525-6285

Experian (formerly TRW): 1-888-397-3742

            Trans Union: 1-800-680-7289

            Social Security Administration (fraud line): 1-800-269-0271

“LIVING WITH MS, IT’S NOT AN OPTION!” #1

How often has someone told you “I know how you feel?” Unless he or she has experienced what you are currently going through, or have gone through, he or she doesn’t have a clue on how you feel. Has he or she walked in your shoes?

The subject I am about to write about, “SUICIDE,” is one I have experience with, so I feel qualified to write about it. So, here goes………….

“Suicide, Don’t even think about it!” Being an MS support group facilitator, I have quite a bit of experience sharing with others with MS who feel they have come to the end of the road and since things are only going to get worse, why not, since there is no known cause or a cure The debilitation, pain, and suffering become quite unbearable. Knowing that additional stress and responsibility on the well spouse, the children, the family, much less the financial burden that will be encountered, gives the potential act of suicide a reason as an answer to these problems. WRONG!

Anyone thinking about suicide is being selfish, only thinking about him or herself, with no concern about what the impact will be on the spouse, children, parents, family, Relatives, and friends.

Suicide is probably one of, if not the worse type of death for a family member to deal with. It quite often puts them on a guilt trip as to what they could have done to prevent it. The memories linger on, sometimes forever.

         My first wife, at the age of 36, took her own life thinking the family, 4 children ages 5 to 14, and myself would be better off without her. It was her 4^th attempt, and she finally succeeded. She was so wrong! 34 years later I still wonder why and I know the children do too. Yes, she had some emotional problems to deal with, but don’t we all sometime?

          She missed her children growing up, her grandchildren yet to be born, and the remaining years of her parents lives. She gave an outward appearance to the church she was a Sunday school teacher at, the social and civic organizations she belonged to, the PTA, and to many friends that everything was ok, but it wasn’t. They had no idea of what she was feeling and going through.

Counseling didn’t help, as she didn’t want to be helped. She had already given up on living!  Why? No one will ever know. She was just a very unhappy person, who decided life would be better without her.

          Today, counseling is different. Counselors understand more about how to help a person with emotional problems. Families need to recognize the symptoms and try to help, not turn their backs and walk away from the problem pretending it doesn’t exist. That is not the answer. Not wanting to get involved only leads to later asking yourself “WHAT COULD I HAVE DONE TO HELP, IF I ONLY WANTED TO.” As I said before, the guilt trip experienced by those left behind will be felt for a long time, if not forever.

If a person really loves their family, cares about others, he or she would never consider suicide as an answer to his or her problems. Suicide is a very selfish act that should never be considered, “IT IS NOT AN OPTION!”

          If you are experiencing physical, mental, or emotional problems that seem unbearable, seek professional help. Not only will you be helped, but, so will your family and others who love and care about you. Don’t give up on yourself, as the Lord never gives you more then you can handle!

  I know how you feel!                

                          William L. “Bill” Brayer

“LIVING WITH MS, IT’S NOT AN OPTION!” #2

   Living with MS is a full time proposition. If you have been diagnosed with MS, then you probably know by now that there is very little known about it. The medical field has been trying for over 50 years through many studies and much research to find a cause and so far none has been found. Without a cause, there can be no cure.

   They keep saying we are getting closer, but what is closer? It takes years of studies and millions/billions of dollars to do medical research to develop a drug and many people with MS won’t be around when and if a cause and cure are ever discovered. So, what do we do now?

   We need to “Stop the bleeding, then treat the wound.” How? By providing financial aid, and durable medical/mobility equipment to  people without insurance coverage who are being denied any assistance by Medicare, Medicaid, DSHS,  private insurance companies, and other MS organizations and who are living on low income and SSI and undergoing financial misfortunes.

   We need to provide: employment to those still able and wanting to work (even if only part-time), affordable housing or assisted living, and have MS care/rehab centers just for people with MS who can no longer live in their own home surroundings.  This facility will provide medical services by a trained medical and administrative staff, who, understand the symptoms and needs of a person with MS.

   Insurance Companies, Medicare, Medicaid, DSHS and other MS organizations need to be more responsive to the needs and assistance required by people with MS. They deserve to have as much quality of life as can be given at ALL COST. If the government can spend billions helping/assisting people in foreign countries, they can surely help/assist people here in their own back yard. They should remember that these people with MS are also voters. They were promised a better life when they were working and paying taxes. Many of them could also be their family members. Are they going to ignore them?

   There are many theories as to what causes MS, but so far there is no real medical/scientific data to support these theories. Part of the problem is that there are so many symptoms and they affect everyone with MS differently.

   A person can have the symptoms of MS for many years before having an exacerbation. These exacerbations can be triggered by a medical situation/trauma, such as an accident, operation, or birth of a child.

   There are several diseases that have similar symptoms, which makes the diagnoses even more difficult. Many people with MS are also diabetic. MS has often been referred to as the Snowflake Disease as there are no two people alike that have it

   The following is a list of some of the most common symptoms: Please note that many are NOT visible to the naked eye.

• Extreme weakness or fatigue-

• Loss of coordination-

• Staggering or loss of balance, stumbling, falling-

• Dragging of one or both feet-

• Tremors in arms, legs, and head-  

• Some cases of seizures-

• Twitching in various parts of the body and head-

• Prickling sensations in body parts-

• Numbness in hand and feet, and possibly other body parts-

• Loss of eyesight, double or blurred vision-

• Involuntary movement of eyes-

• Bladder or bowel incontinence-

• Speech difficulties, stuttering, slurring-

• Often repeating yourself-

• Memory loss-

• Pain in various parts of the body- (some severe)

• Extreme pressure around abdomen area-

• Headaches- shooting/stabbing pain behind the eyes-

• ED, impotence-

• Mood swings-Depression/Thoughts of suicide-

• The appearance of being under the influence of alcohol-

  IT’S TIME WE STAND TOGETHER!

            We who have MS have been patient far too long and are becoming apathetic--waiting for "them" to make a difference in our disease and in our lives. Over $380 million dollars and 56 years of funded research and "they" still have virtually nothing to offer us that makes a significant difference in the day-to-day challenges MS patients and their families face with this disease. Perhaps it is time we take a pro-active part in helping ourselves.

            On June 21, 2004,  I got my copy of the MS CONNECTION from the local NMSS chapter telling us they have just committed $12.4 million to support 23 new research projects including four new Collaborative MS Research Centers, focusing on understanding and reversing nerve tissue damage in Multiple Sclerosis. They also announced that added to present commitments, the Society will spend more than $30 million this year to fund more than 300 new and ongoing MS investigations. The benefactors of these funds will be the top scientist at The Cleveland Clinic, Yale, John Hopkins and the Mayo Clinics. The research will focus on many different aspects of MS, including genetic susceptibility, myelin and nerve tissue repair and rehabilitation.  

             I certainly feel that research is definitely needed, but what about doing something NOW for the people suffering with MS to make their lives easier to cope with having to live with this debilitating disease.  They need to be provided with the best quality of life they can have while these long term research projects are underway.  Having these people with MS still around in 5 to 10 years when they can benefit from all this research is important too. Too many people with MS are dying from complications caused by having MS, thus making MS a “Life Threatening Disease,” whether they want to admit it or not. There are quite a few people with MS, mostly women and under the age of 60, who died this past year.

             The care/rehab centers and nursing homes are getting more patients/residents with MS everyday. And, the type of medical treatment they are getting leaves a lot to be desired, but that is an entirely different subject.

             Where does the money for all this research come from? Just in Washington State alone, $750,000 came from honoring 300 local philanthropists in Seattle at the Dinner of Champions, more from the April MS Walks held in Western and Central Washington, the up-coming 2004 MS 150 Bike Tour, and from all the donation appeals that go out monthly to people with and without MS. 

              I co-founded “MULTIPLE SCLEROSIS HELPING HANDS (MSHH), a GRASS ROOTS stand alone, non-profit 501(c)(3) foundation licensed and registered in the State of Washington with Officers and Board Members all serving as volunteers with the mission statement: “To create and provide services & resources that will enhance the quality of life for people with Multiple Sclerosis.” No one gets paid or receives any benefits. Several of the Officers and Board Members have MS and the other Board members are family members or friends.

            “WE NEED TO STOP THE BLEEDING THAN TREAT THE WOUND!”

             Everyday I get phone calls, letters, and E-mails from all over the country asking for various types of assistance and information. I get frustrated how people with Multiple Sclerosis are being neglected and treated by doctors, mostly neurologists, local, state, and national government agencies and other MS organizations, who are supposed to be providing financial help – assistance - and unbiased information to them. 

             People with MS are basically left to fend for themselves in many, if not most cases. I live in an area ( Washington State ) that has the highest MS incident rate in the country, and yet it is not being addressed as a serious disease. In some states, it is even worse.

             And why is this so? Because, Major Multiple Sclerosis Organizations keep reporting the national estimate of people with MS to be between 350,000 to 400,000 people with about 10 to 15,000 people with MS living in Washington State alone. A more recent national survey estimated 2,750,000 people with MS and over 50,000 living in Washington State .  

             These low estimates are used to protect the pharmaceutical’s drug patents covered by the “ORPHAN DRUG LAW,” You can refer to this law and how it applies to a drug and protects the developer on the Internet and than check their financial statements. (You just might run right out and invest your money in their stock!)

             The news media keeps reporting on news releases from major MS organizations and pharmaceuticals about a new drug or research that is going on that makes it look and sound like a cure for MS is just around the corner, but will require many more years of research and more money before it will be available. After this initial announcement is made and all the hype that follows, we never hear any more about it. This type of news reporting is supposed to keep our hopes up. It is only effective in getting more donations, pledges, and grants, which is actually what it is intended to do, and it seems to be working, as they keep doing it.

             Why doesn’t the news media do more investigative reporting on these announcements for credibility?  So why don’t they? Millions of dollars are spent every year in advertising by the major MS organizations and pharmaceuticals, and the news media isn’t about to upset this flow of income. (It’s called “The Power of Money!)

              I can’t help but feel they don’t want to cure us, as MS seems to have become a “CASH COW” for the major MS organizations and the pharmaceuticals.  The amount of lobbying and special interest money involved is going out of sight.

             I hear that it is pretty much the same with other non-profit agencies. Remember what happened with the American Red Cross and all the donations they received after the 911 attacks on the World Trade Centers?

             There needs to be a better system to monitor and regulate the operating and financial procedures of ALL non-profit organizations.  They need to be made accountable for their actions.

             Workshops and seminars put on by major MS organizations are backed (funded) by the same pharmaceuticals over and over in order to promote their products and they have been saying the same thing over and over for years. Depending on which drug is being promoted, and which neurologist is speaking, the information is the same; just the name of the drug is changed.

             Regarding these educational MS workshops and seminars being promoted and advertised by the major MS organizations, they claim “NO” direct affiliation or endorsement of these workshops - seminars or information provided, but yet the same ones are given over and over, again and again, and most of the neurologists and nurses speaking at them are on their staff, board of directors, or major committees. They are paid a nice stipend to do them, as well as is any celebrity that they use who has MS, whether he/she uses the drug or not. It is a JOB! And, it pays well!

             Their disclaimer reads: “That they don’t endorse products, services, or manufacturers. Such names appear here solely because they are considered valuable information. They assume no liability for the use of contents of any product or service mentioned.”

             I believe this is called CYA!

             If they are supposed to provide unbiased information on ALL drugs for valuable information for people with MS to know about, why haven’t they told us about the other drugs that seem to be providing better relief for many of the symptoms of MS?  Many of which are providing more or better relief than the drugs they tell us about, and the ones the neurologists keep filling our bodies with?

             If you check, you will find that most of the drugs being prescribed for the treatment of MS were developed and approved by the FDA for other diseases, and since they weren’t effective for them, they are now being approved by the FDA and prescribed for people with MS to see if they will work on them.

             It is reported that it takes several million dollars and about 6 or 7 years for the FDA to approve a drug. I would like to know why? Is there a connection between the FDA, the pharmaceuticals and major MS organizations? Who does the FDA report to?

             Many of the studies and the research being referenced are fictitious or overstated. The real study and research going on is that neurologists are prescribing drugs, using the samples that have been provided to them free by pharmaceutical reps in order to try on their patients with MS to see how these drugs actually work on them. Hundreds of thousands of sample drugs are provided to neurologists all over the country every day to give to their patients for trial and evaluation. These are on-going free drug trials and research that donations, pledges, and grants are supposed to be used for. If this is the case, where is that money going and what is it being used for? People with MS have become free Guinea Pigs for the medical field.

             YES, IT IS ALL ABOUT MONEY, NOT HEALTH!

             People with MS, who are trying to cope with living with MS and are trying to live on low income (SSI), are constantly receiving requests or appeals for donations from major MS organizations. They are actually expected to pay for their own help, services, and assistance that they are asking for and hope to receive from them but aren’t. It doesn’t make sense to me asking the person who is seeking help and assistance to make donations to them in order to get the help and assistance he or she is seeking when he or she isn’t financially able to help him or herself.

             It has recently been brought to my attention that a certain MS organization has over $1,000,000 in their bank account being held for a rainy day: for use In case of an emergency!  With all the cries for help and assistance being heard now, what kind of emergency are they waiting for? With over $1,000,000 in the bank, why are programs and services being cut back or eliminated? They keep sending out request - appeals for additional donations and they also suggest donations be made at all their so called “FREE” workshops or seminars that are sponsored by pharmaceuticals or well known neurologists and nurses.

             These same MS organizations constantly call for volunteers to help with various projects that their staff don’t want to do. They have cut back on some of their services and resources as they claim the funds are not available. (I think I know of almost $1,000,000 that could be made available?)

             You will also notice that the magazines and publications distributed by major MS organizations are mostly drug product oriented and you NEVER see anything about any drug available or being tested  or research going on if they don’t advertise in the publication or give financial “KICK-BACKS.”

             Another way the pharmaceuticals get more funding is to develop a “NEW” study for a different classification for MS, such as relapsing remitting, progressive etc. Other diseases such as Cancer are classified as Cancer of a certain part of the body.  MS is being diagnosed as being in different stages.  MS attacks the brain and spinal cord which controls all the body’s motoring functions. There is only one type of MS, and giving it different classifications doesn’t solve the problem; it only raises more money for unnecessary, so called research and studies. The symptoms of MS are the same regardless what classification they give it. Some people with MS just have more symptoms than others and more frequency of exacerbations.

             I went to a clinic with more than one neurologist and each treated – prescribed - a different drug for MS and once when my regular neurologist was on vacation, his partner changed the drug to the one he preferred, and when my regular neurologist returned, he blew his top, and put me back on the drug he liked. Needless to say, neither drug helped me, and I fired him and found myself another neurologist.  They also never told me what many of the side affects were, and I learned about them from the pharmacist where I got my prescriptions filled, who warned me to be careful, or I researched them on the Internet.

             There are several diseases that have the same symptoms, and many people with MS have also been diagnosed with having that disease as well. Diabetes is one that many people with MS are often diagnosed having along with Lupus and Fibromyalgia. Strokes also leave lesions on the brain and have many symptoms similar to MS. I have been told by more than one person in the medical field that many people have some type of lesions on their brain and don’t have MS. There is also debate going on in the medical field whether MRI’s are really effective in diagnosing MS.           

            You can read some of the studies written up in medical journals and by who and see the same information is given over and over on different studies and you might also notice contradictions of the information that discredits a statement made earlier in the same report. You will also find listed in the references the same doctors on various reports. And, they are getting paid for this!

             The general public is really not aware of just how serious MS is and unless they have a spouse, parent, grandparent, child, family member, or a close friend with MS, it isn’t their concern or responsibility. And, politicians fall into this same bracket. Let it be him or her, his or her spouse, child, or parent, and than see what he or she does to get medical assistance and where. Their insurance plans and job benefits cover them so they don’t have the same financial crisis others with MS have.

            Testing and evaluating people with MS to qualify them to be eligible for financial assistance or for an item such as a scooter, electric wheelchair, or a wheelchair accessible van with a lift to transport them, is ridiculous and next to non-existent. Commercial vehicles used for this purpose charge ridiculous high rates to transport people with MS, most of who are living on low-income (SSI) and the service is usually not covered by insurance, to doctor appointments or other errands they need to do which causes many people with MS to not be able to get the proper medical attention or care they need.

             Please answer this question Mr. Politician, Why is it we have money for Medical Aid to foreign countries,  for the Arts, and other Special Interest Projects, but never enough, if any, to help with people’s medical needs here in our own country, and not just those with MS? People with medical problems are voters too!

             Neurologists are not keeping up with the information available to them and rely upon the pharmaceutical reps to keep them informed about their products with samples provided for their use. These reps are NOT trained as physicians or researchers; they are marketing – sales people.

             Why aren’t neurologists, who are claiming to specialize in the treatment of MS, sharing their information and research and working together toward finding the cause and eventually a cure? Why don’t they attend other workshops and seminars on the subject other than the ones they give? They are always eager and willing to speak at workshops and seminars representing a certain drug for a stipend. I once had an important follow-up appointment rescheduled as the neurologist had a speaking engagement to attend at a local MS function.

             And, why isn’t alternative medicine such as CAM , “Complimentary and Alternative Medicine”, a consideration? Is it because, it wasn’t taught in Med-School, and doesn’t fall under the category of “Conventional Western Medicine?”

            And finally, it is a known fact that many neurologists receive “Kick Backs” or special funding benefits for studies and research they claim to be doing from the pharmaceuticals. There are many medical research articles and studies going on that appear in the medical journals that just die there. WHY?

             The new and existing MS clinics that claim to be specializing and oriented for diagnosing and treating people with MS are overloaded with appointments. It usually takes you 4 to 6 weeks or longer to get an appointment with the doctor you want to see if you are lucky. If they are so busy, this observation doesn’t seem to meet with the MS estimates given of how many people have MS in Washington State .  If those estimates being used were accurate, why are we building (needing) more special MS clinics? Seems to me that certain neurologists want their own empires at the costs of the people with MS, and as long as the money is there and they can get it.

             One of my past neurologists left his practice to go to work for a major pharmaceutical as he told me there was more money in it. It isn’t about helping people with MS, it is about personal income!

              MS is considered by many to be the “INVISIBLE DISEASE” since most of the symptoms are not visible to the naked eye.  People with MS are considered to be like Snowflakes, and that is why we are often referred to as “THE SNOWFLAKE DISEASE”, as there are no two people with MS alike, the same as there are no two snowflakes alike.

             Let’s face the fact that the medical field, with all the so called research and studies going on by the special MS clinics and pharmaceuticals, just don’t know that much about MS or if they do, they are keeping it under wraps to protect their investments.

             It has been suggested by other countries that Western Medicine is looking in the wrong direction. It may not be an autoimmune disease that research has been chasing for over 50 years. Isn’t it time some of the research being done looks in another direction?

              Is MS a “CASH COW” for them? YOU DAM WELL KNOW IT IS!

            My last question on the subject is: “Are some of the major MS organizations just MARKETING TOOLS for the pharmaceutical field?” 

             Well I think it is time for all the “SNOWFLAKES” (people with MS) to form a “SNOWBANK” and be heard from. We need to start throwing

“SNOWBALLS” until we are heard and taken serious.

            Am I mad? YOU DAMN WELL BETCHA I AM!

             When things grow out of control it's time to take action! Jack cut down the beanstalk when it got out of hand, and it’s time we do the same!