BILL'S PAGE!
Articles on this page:
MS, Don't let it keep you down, - This is my Story,
Only You Can Make a Difference,
Living With MS - The Forgotten One,
Living With MS is not an option, it is a way of life (series),
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MS, DON’T LET IT KEEP YOU DOWN!
This Is My Story:
By William L. “Bill” Brayer
Multiple Sclerosis is a strange disease. There is NO known cause and No real cure for it, just some various drugs that are supposed to provide some relief from the many symptoms a person with MS can experience.
You ask, “Who is Bill Brayer?”
I have had MS symptoms for over 56 years and was officially diagnosed about 19 years ago and as of March 7, 2008 I will be 75, retired, married, have 5 grown married children and 10 grandchildren. I am a type 2 diabetic, had Bells Palsy, hives, eczema, two heart attacks, open heart surgery (4-way bypass with a new aorta valve installed), and a good case of Endocarditis.
I spend most of my time serving as President/CEO of MS Helping Hands-MSHH, a 501 (c) (3) non-profit corporation, and being the Director of the MSHH Donor Closet, and as a facilitator of the Sno-King MS Support Group. I find that keeping myself busy helps me cope with having MS. As I tell everyone: "I've been there, done it, and am still doing it!"
I often wonder how many times God is going to pick me up and put me back on my feet. I know I have certainly tested his patience, but he is always there whether I call upon him or not. You will see as you read this recap of my life that God appears more then once.
My father died in 1944 when I was 11 years old. My mother never remarried. I was the last, the baby, of 7 children with a 20 year gap between the oldest and the youngest, me. I am now the Brayer Family Patriarch as all my siblings have passed away. I have well over 100 nieces and nephews from several generations that I have never met.
I grew up in Phoenix, Arizona and in my early teen years suffered from severe attacks of Hay Fever which caused my eyes to tear up often, swell up, and almost close. I was tested for all kind of allergies: foods, weeds, flowers, and other items to see what I was allergic to. Guess what? The test showed I was virtually allergic to everything. Some test! But, they couldn’t prescribe anything that would help the problem. Some doctors!
At the age of 19, I enlisted in the Navy in March 1952 near the end of the Korean conflict and while going through boot camp in San Diego, California the hay fever disappeared but I developed severe sinus problems. I suffered with hemorrhaging sinuses for many years after moving to Seattle, Washington after being medically discharged from the Navy in March of 1954. I was told more then once by my doctor after having pneumonia every year for about 7-years that I should consider moving to a dryer climate, like Phoenix, Arizona. That wasn’t even an option with me.
I was married for the first time in July 1952, a marriage that lasted until September 1969, when at the age of 36 my wife committed suicide and left me with 4 children, ages 5, 8, 12 & 14, 2- boys & 2 girls. I remained single for 10 years until in May 1979 I married my current wife Carol. Our "My" oldest son died in March 2002 from a heart attack at the age of 45.
I had a successful career in Records Management, Reprographics - specializing in Micrographics. I was a pioneer in the Microfilm industry. I was a workaholic. This career lasted until July 1st, 1998, when Multiple Sclerosis took over my life. I was forced to retire at the age of 65.
As Paul Harvey would say,
“NOW FOR THE REST OF THE STORY!” Please excuse my ramblings and some of the order of this testimonial as I am writing this as I remember various incidents and dates. Just a little medical background that started in late 1953 while I was serving in the Navy.
We were making our second deployment overseas when I became very ill. The ship's captain wanted to send me to the hospital in Pearl Harbor when we arrived. I convinced him that I would be ok and they let me stay aboard ship while recovering from what was thought to be the flu. It didn’t entirely clear up, but I was able to perform most of my duties.
While returning from overseas, I began having severe cramps, diarrhea problems, eye problems, headaches that came and went quite often, lost a lot of weight, and could hardly keep anything I ate down. This lasted for several weeks.
In December 1953 my ship, the USS Elder AN-20, arrived at the Bremerton Naval Shipyard but was transferred to a shipyard in Seattle for repairs. Before leaving Bremerton to the Seattle shipyard, I was transferred to the Bremerton Naval Shipyard Hospital. After 12 weeks of examinations and many tests, they didn't have a clue what was he matter with me and they threw in the towel. The medical staff couldn’t find anything they could put a name on. I had two (2) spinal taps the same day about an hour apart, which is definitely a NO-NO. The doctors, referred to as 90 day wonders who were there to put in their military time, screwed up the first test.
They finally decided to send me home with a medical discharge. I was released, Honorable Medical Discharge, from the Navy in March 1954 as having a Neurological Disorder, Cause Unknown.
Little did I know then that I let the Navy off the hook. After I was discharged, they altered my medical records to read: that I was suffering from HOME SICKNESS AND MISSED MY MOTHER. I was NOT suffering from HOME SICKNESS and MISSING MY MOTHER. I was actually trying to get an appointment to the Naval Academy as I was thinking of making the Navy my career. I was discharged without given any financial benefits.
Several years after being officially diagnosed with MS, I applied to the Veterans Administration for medical assistance only to be told my service records were destroyed in a fire back east and I would need to get a good lawyer to represent my claim for assistance. I was informed that the legal costs would be extensive. Needless to say I said "forget it!"
After being discharged from the Navy, the symptoms continued to come and go throughout the 50’s, 60’s and early 70’s. The HMO I belonged to and the doctors I had after leaving the HMO seemingly couldn’t find the problem either. At one time my vision was so bad that I was told I would be blind within 6-months, so I should get my life – things – in order and prepare to be blind. How does one prepare to go blind? I found out several years later that these were MS exacerbations.
I had a minor heart attack in 1969. They thought it to be minor, so I wasn’t checked for any major heart damage. (Remember this fact later in this writing when I had open heart surgery)
I was misdiagnosed several times: once as having had a stroke, Carpal Tunnel Syndrome, I had 3-unnecesary surgeries, plus advised to have 2-more, which I refused after getting second opinions.
I was finally officially diagnosed in 1987, as a result of having a major incident that almost cost me the sight of my right eye. I was getting ready for church one Sunday morning and was trying to brush my hair using my right hand – arm – that was numb from the shoulder down and was almost totally useless. It felt like I slept on it all night and had no feeling in it, which was getting to be a common symptom for me, as was double vision, which often came and went without any warning.
While trying to brush my hair, I accidentally shoved a bristle hairbrush into my right eye. Needless to say, it really hurt! I went on to church with a cold, wet patch made of Kleenex over the eye between my glasses and the eye. By the time the church service was finished, the eye was completely closed and the strain on my left eye trying to compensate for my vision was starting to show. The pain was excruciating and I knew I needed to see a doctor as soon as possible.
My wife took me to the emergency room at a local hospital. I was examined, treated, and told I had damaged the cornea of my right eye. It was suggested that I see my eye doctor ASAP. I did the next day, Monday, and the eye was treated over the next two weeks, with many follow-ups, in order to save my vision, which the eye doctor was able to.
After telling him how it happened and what my symptoms were at the time of the accident, he thought to himself that I had MS, but never told me at the time. He was familiar with MS as his father died from complications of having MS several years earlier. He recommended I see my neurologist as soon as possible, which I did, the same day.
After all the tests, surgeries and misdiagnoses that my neurologist put me through over many years, he now told me he was now going to test me for something they hadn’t tested me for yet, Multiple Sclerosis - MS. Why did it take so long for this specific test, I asked? I was told because MS was basically a woman’s disease that occurred mostly between the ages of 20 to 40. I was older then 40 at the time and obviously was not a woman.
This really p--------- me off!
I was sent immediately to the hospital across from his office and was given another MRI, several other tests and examinations for MS. I had previously had several MRIs, but was never tested directly for MS. He had the results from the test a few days later and called me and my wife to come in to go over the test results.
“You have an advanced stage of Multiple Sclerosis Bill,” he said, and told me that there wasn’t much he could do for me as there wasn’t very much information known about the disease and mine was in advanced stages. He did suggest some drugs, although he didn’t feel I was a candidate for any of them, as up to then, all studies and tests were for primary stages of MS.
I was mad, confused and fed up with his previous diagnoses and treatments. That was the last time I went to that neurologist. I fired him.
I did not get one, but three more second opinions from, including Dr. George Kraft, Director of the U of W MS Clinic, and from Dr. Swank in Portland OR who has studied MS for years and was the author of a well known diet book for people with MS, and they all confirmed the diagnoses (symptoms) to be those of Multiple Sclerosis. At least there was now a name on the disease and for the symptoms I had.
After being officially diagnosed, my new neurologist figured that I had at least 11- symptoms of advanced stages of Multiple Sclerosis dating back to 1950 and possibly further.
I knew nothing about MS and thought I was one of Jerry’s Kids, (Jerry Lewis), you know MD, Muscular Dystrophy, until I found out that they were two different diseases.
I finally knew I wasn’t a hypochondriac as they had me believing I was. After many years of feeling lousy and getting worse, they finally had a name for what was causing it. I officially had Multiple Sclerosis.
Knowing what you have is a lot better then not knowing. But, they had no answers on what caused it, and had no known cure. So, I figured I just had to learn to live with it and wait until it went away, which I figured it eventually would. WRONG! I had no idea at the time just how serious MS was.
I spent many hours on my computer researching any and all the information about MS that I could find. I even got involved in MS chat lines to hear what others were doing who had MS. That turned out to be very depressing, as many of these chat lines turned out to be PITY PARTIES, where everyone was so negative. They mostly complained, had given up, and only made a person with MS feel worse.
It was like the information the doctors and neurologists were telling their patients about going to or joining a support group. Many doctors and neurologists had nothing good to say about support groups and I feel it is because in many cases the doctors and neurologist feels that he/she might loose control of the patient if he/she, the patient, talks and shares with others who had MS. They want to be in control.
Support groups in most cases are not "PITY PARTIES" and do serve a very worthwhile purpose where people can go, share, and be supportive and receive support from others who have MS, and have learned how to live and cope with the disease. It is especially helpful to the newly diagnosed. I could write a book about a good support group as I have seen both types.
At first, I was foolish enough to believe MS would go away someday, so I started my own business in 1987, which I ran for 11 years. My wife had a conniption fit and was about ready to leave me, literally speaking! My friends also thought I was very foolish. In many ways, I guess I was. The symptoms came and went and gradually got worse. I was getting depressed and very hard to live with. Everyone was advising me to quit and take life easy.
It was July 1, 1998, 11-years later, and my life didn’t look that great at the time, that I finally sold my business and retired, even though I was only 65. That made my wife very happy thinking the pressure and stress on my life would be eliminated.
My neurologist told me to go home, take it easy, and enjoy what I had left of the rest of my life. That was sure encouraging advice. I thought, “What a bummer!”
I became bored staying home doing nothing, so on July 1st, 1999, one year later, I took on the first of 3-part time jobs just to keep busy and keep my mind off my health problems. It helped, but the MS continued to get worse. Things didn’t look too good and I was getting more depressed and was having too many mood swings, along with other symptoms, which definitely wasn’t helping my marriage.
Why Carol, my wife, stayed with me through all the verbal abuse caused by my mood swings, I will never understand, but I am so grateful she did. She has been, and still is my greatest supporter, caregiver, and best friend. My family and friends have put up with a lot also and they continue to stand by me. I couldn’t make it without their support. God has never deserted me, even though I have left him several times.
By the way, they keep saying that MS is NOT a life threatening disease. However, it does cause complications that are life threatening, so why isn’t it considered a life threatening disease? Duh! Another myth is that it is not contagious, genetic – hereditary. We have in our large MS support group, and I know of many others with MS who have a relative (mother – father – sibling – or other) with MS. What is there about understanding the meaning of genetic or hereditary that I missed?
OK, now for the rest of the story. Things do get better: I will never forget Sunday, July 4, 1999. That was the day I watched KOMO, Channel 4, air the news about Procarin. (Spelled with a “c” at that time.) I was literally crawling around on all fours that 4th of July day trying to help my wife paint a deck off our bedroom when I got a telephone call from a friend who heard that there was going to be a big news release about a new drug for Multiple Sclerosis on TV later that evening. We put the VCR on to tape it, as we were too busy to watch it at the time it was aired. I almost forgot about it, and we finally watched it just before we went to bed. “What the hell is Procarin,” I asked myself.
By this time I was very discouraged about all the news that kept coming out about new drugs for MS. These MS news releases were always the same: “With several more years and the money required, we might have a cure in 5 to 10 years.” My answer to that was “BS!” With all the research and development of drugs they are raising money for, we are NO closer to finding a cause and a cure then we were 50+ years ago, regardless what the medical field and National Multiple Sclerosis Society (NMSS) report. Their information is not only out dated, but is false or badly distorted.
I won’t go into the truth and facts of that statement as you wouldn’t like or possibly believe what I know and would say. If you knew where and how your donations were being used, I doubt if you would make another donation to the NMSS. You might want to look into where the money – donations - are going and how they are being used. Also check into the “ORPHAN DRUG ACT.” It doesn’t take a Rocket Scientist to figure out who is in bed with whom!
I also won’t go through the many years of frustration with the medical field and the NMSS that I have experienced during this time of my life. That is a long story in itself, and I already have made a lot of enemies in the medical field, as well as with the NMSS. I just ask them to prove me wrong with facts, not just printed words.
Yes, we do need medical research and the development of drugs, but let’s look into other possibilities of what might cause MS. The current western medicine theory is just not working. Why are other countries exploring different approaches to finding a cause and cure? Why is the medical field and pharmaceuticals pursuing a DEAD HORSE? What is wrong with looking at Alternative Medicine?
If someone has been diagnosed with having MS, than he/she has MS. It is just that simple. So, why aren’t the drugs, already approved by the FDA, be for ALL MS patients and eliminate the need to DO more research on the same drug or develop a new drug for another so-called phase of the disease? How many phases can one have with MS?
It is a well known fact that most of the current drugs on the market for MS were originally developed for other diseases and didn’t work, so now in order to get a recovery on the money – investments - investors have already invested, they get FDA approval to try it on MS patients.
Also, why does the NMSS continue to just sponsor events, workshops/seminars promoted by only the major drug pharmaceuticals, although they claim they don’t endorse any of these major drugs; they don’t do any on the alternative drugs? They publish a very nice national publication with nothing but advertising and stories on the “A,” “B,” “C,” “R,” and now Tysabri and other drugs that contribute to the cost of publishing their publications, underwriting their events, promoting more benefits and fund raising programs. That just puts money in their caches to do more promotions for the pharmaceuticals. Advertising is big bucks! IT IS A VICIOUS CIRCLE!
The writers of their publications, many who are celebrities with MS, who present these case histories – testimonials, are paid a nice stipend for presenting them for their endorsement, whether they use them or not. They also use the same speakers/doctors/neurologists over and over on the same information, but with a different title, who get a nice stipend for lecturing. I have attended several of these educational workshops/seminars put on by a different speaker with a new subject title only to hear the same outdated and misinformed information given over and over. When are they going to learn that we aren’t stupid? Many of these speakers are on the NMSS Board of Directors or are staff members.
My first neurologist, as well as the next two told me that there was nothing they could do for me as I was diagnosed with a Progressive MS, and at that time none of the drugs on the market had been tested or were effective for that kind of MS. Now I ask, is there a really a difference between all the different phases of MS they tell us we can have, or it this another way to extend their opportunity to get more research grants and donations to conduct more research and studies that have already been done? Why can’t or why don’t these various study groups share their information with others doing research and studies and get on the same track? Is it because of all the research money- grants that are available – and an opportunity to get written up in the Medical Journal?
Have you ever noticed that after the initial report on the results of a study going on makes the headlines, we never hear about it again. They get our hopes up and then we wait and wait and for what? If I said it once, I still say "it’s all about money and is not a health issue!"
MS is a “CASH COW” for the medical research field and the pharmaceuticals. It is not necessarily all the doctors – neurologists – fault; it is the research information they are given. Look at all the free samples of drugs that doctors/neurologists are given to promote the product, and in some cases even kickbacks on prescriptions are given to help promote a particular drug.
Ok, enough of being on my soapbox.
After watching the July 4th news release on Procarin, I did some research by contacting some of the people who were in the initial study. I knew several of them. I also contacted Elaine DeLack, the developer of the Procarin Patch.
I figured what the hell, why not try it, as nothing else worked or gave me any relief. What did I have to loose? Besides it was a lot cheaper then the major drugs the neurologists were pushing. They were, and are still over $1000 per prescription. At that time, Procarin was only $250 for a month’s supply. It is less expensive now.
I thought I had to pay for Procarin myself since insurance companies weren’t covering it, as it wasn’t FDA approved. I felt my health was worth a hell of a lot more then $250 a month. I later found out that my AARP Medical Supplement to my Medicare Insurance plan would pay 50%. They paid 50% per prescription after I went on the Patch. I lost this benefit when I signed up for the new Medicare Prescription "D" program.
My neurologist would not give me a prescription for Procarin saying, “It was nothing more than a caffeine fix.” He knew nothing about Procarin and refused to look at any of the information I provided him with. I fired him shortly after, as he had me on steroids for over 15- months and I was getting rummy as hell.
I got tired of supporting his lifestyle while mine was going downhill. He forgot that I was the patient and he worked for me. I was the one paying his bill personally or through my insurance. He has since left his office practice and gone to work for a major pharmaceutical in research where he will make more money. My wife said if I didn’t stop taking the steroid injections he had me on for over 15 months, she was going to leave me! I don’t think she would have, but she didn’t like what the injections, 5000ml (1000 ml a day daily for a week, every 6-weeks) were doing to me. I was in a constant phase of euphoria. I was high as a kite most of the time.
Prior to leaving his practice, he held one last workshop on a new drug he was being paid to promote and during this workshop he vindicated a lot of what I had been saying for a long time about the “SCAM” between the pharmaceuticals, FDA, and the NMSS, as being mostly about the money and not being a major health issue. He carefully but discreetly referred to the NMSS as being a “FRONT” for the Pharmaceuticals. This made many of his peers, the NMSS, as well as many of his former patients quite upset with him.
I asked my Family GP to give me a prescription for Procarin, which he had heard about, and he agreed to if I would let him monitor me. He has kept up on my improvement ever since.
It was in early August 1999 that I received my first prescription of Procarin. I’ll never forget it! I had had several phone calls back and forth with Elaine Delack and she was monitoring me to see that I put the patches on correctly and took the vitamins and supplements that I should be taking. We also worked on my diet, which I still need to follow more closely. The patches were tricky at first, but I finally got them on with the right amount of Procarin without wrinkling or getting any air under them.
It was on the third day of using the Procarin Patch that I felt the first MAJOR affect of using this new drug. It was in the evening while watching TV with my wife when my right (bad side) leg began to hurt. It hurt real bad.
MS had affected my entire right side, from the shoulder to my foot. My side was mostly numb and tingly. I was experiencing a lot of pain that I haven’t had since before being diagnosed with MS. If fact, I had virtually very little feeling in my right (bad side) leg at all. It was numb and tingly most of the time. It was like it was asleep. My right foot kept curling under causing me to trip and fall several times a day. My right hand was (and still is) numb and tingly. I was using a cane most of the time and hanging on to things for balance and to keep from falling. I became a wall walker.
We live in a lovely split level home, lots of stairs, and our home is below street level, which means I have to go up a rise of about 12 feet to the end of the driveway, about 104’, to get the mail every day. It was getting very hard for me to do, so we began considering moving to a rambler style home. I often used a scooter to go get the mail.
My next store neighbor, knowing I had trouble walking up and down my driveway, volunteered to take my garbage/trash containers up to street level every Sunday evening, for the next day pickups. He still does this and has been doing it for several years.
OK, back to that third day of using the Procarin Patch, and having the pain that I haven’t been having. I thought I was having a reaction from the drug. Elaine had told me there were no side effects. Then, what the hell was going on? I immediately called Elaine and told her what going on. She asked me if I had had any pain in the leg before, and I replied emphatically “NO,” that I had very little feeling in the leg at all. Her reply was “Bill, listen to what you just told me; listen to what you just said.” I repeated, “I had “NO” feeling in the leg, so how could I feel any pain?” OH MY GOD! I listened to what I had just said! I was experiencing feeling back in my leg.
“Bill, you are getting feeling back in your leg,” she replied.”
“WOW!” I said. This was great. I was getting some feeling back. That was the first of many of the symptoms that over the next few months began to get better. Remember, this all started on my third day of using the Procarin Patch. I was one of the lucky ones using the Procarin Patch to see results that soon. It is usually more subtle and takes longer to see any positive results.
Over the next few months of feeling better and not falling as often as I previously had, I felt myself leveling off, plateauing as I called it. After talking to Elaine and with doctor’s approval I went to the next level – strength – of the drug. I had been on 1.65mg every 8-hours -twice a day. I went to 2.2mg and noticed an increase in my energy level and strength and some of the other symptoms were also starting to disappear. Within 6 – months most of the symptoms were gone and the remaining 3 were probably diabetes related.
After being on Procarin for several months, my neurologist upon seeing the results I was getting from being on Procarin wanted to put me on one of the “A,” “B,” “C,” "R" drugs to see if they would help me. I have never been on any other drug or taken any other treatment for MS other then the steroids. Many I knew who tried them and got no relief, had quit taken them, so I opted to not to try them.
Several months later I plateaued again and increased to the maximum strength of 3.65mg. My situation was still improving. No more using a cane and I was able to do a few more physical things that I was unable to do. I was and am still limited, but I can now do a lot more than I could prior to early August 1999.
After the improved mixture of Procarin became available I switched to 2.0 ml of 3.65 mg and use 1 patch a day. I understand that I am probably the only one on Procarin using that heavy a mixture.
I still occasionally use a scooter to go any distance. I also use a manual wheelchair traveling the long distances through airport terminals from the curb to the plane and from the plane back to my transportation. I keep a cane handy in all our cars in case I have to stand very long, or walk any distance when I don’t have my scooter handy.
By the way, by now Procarin has changed the spelling from a “c” to a “k” (Prokarin) due to a situation that came up with the drug company Pfizer. But, however you spell it, it is working for me. I even went back to part time work for a couple of years, holding down 3-part time jobs.
I was very active and founded an MS non-profit 501 (c) (3) Foundation, MS Helping Hands-MSHH, which currently keeps me pretty busy as President and Chairman of the Board. I have been a facilitator of a large MS support group for several years, conduct MS seminar/workshops, do MS counseling, and am involved in many other MS related events and activities and I am also the founder and Director of the MSHH Donor Closet (see article below). I may have MS, but MS doesn’t have me!
I began doing things I hadn’t done for a long time including a little dancing with my wife at church socials we attend. I went back to ushering at my church and according to my wife I was about 85% better then I was before going on the Prokarin (now the correct spelling) Patch. As I am getting older, my body is starting to slow down. (As of this writing I have taken leave as an usher at church and am trying to cut back on many of my MS activities.)
8 of my original 11 symptoms are almost now non-existent and the remaining 3 are attributed to my being a diabetic, being diagnosed a type II diabetic in July 1998.
In 2001, I thought I was having, or had, a stroke. The right side of my face became distorted, my right eyelid drooped, the right side of my mouth drooped down and I couldn’t keep liquids in my mouth without drooling. It was diagnosed to be Bells Palsy. It lasted about 8-weeks. What a scare that was.
My wife can easily tell when I am not using the patch. Twice on a two different vacations, I failed to have – take along- enough of the prescription with me, so I either cut back to 1 – patch a day, or no patch at all. The symptoms started returning immediately until I got a new prescription and then everything went back to making me feel good again.
Everything was going good for me being on the patch until Sunday, October 27, 2002 at about 1:50 pm. My wife and I were attending the matinee musical performance of the musical "BLAST" at the 5th Avenue theatre in downtown Seattle. It was a BLAST ALRIGHT! I had a major heart attack; was considered clinically dead, (no pulse – not breathing). I was revived by CPR administered by a male nurse who just happened to be sitting on the other side of my wife and several others sitting nearby in the audience.
I was brought back to life by the time the medics arrived. They transported me to a nearby hospital, and from the ER I was put into a cardiac ICU unit; kept there several days and finally transferred to another cardiac unit for a total of 11-days. During this time I had a pacemaker inserted and a stent placed into a blocked artery. They thought they resolved – fixed - the problem.
Much to my surprise, the hospital (my cardiologist) allowed me to bring my Prokarin into the ward, where they kept it in their refrigerator for me between applications. Several staff members, including doctors, and even the hospital pharmacist wanted additional information about Prokarin, which I gave them. They had heard about Prokarin, but knew very little about it.
After being released from the hospital, I was still experiencing chest pains, as the medication they had me on wasn’t working. After seeing my cardiologist it was determined that I would probably need open heart surgery. An appointment was made with a cardiovascular surgeon.
A few days later while suffering severe chest pains, I was admitted into emergency at a local hospital near my home, and put into ICU late on a Sunday night, January 12, 2003. I was transferred the next morning, January 13th, by special ambulance to a branch of the hospital where I was originally treated for my heart attack and where the cardiologist and the cardiovascular surgeon I was scheduled to see who would be operating on me was located. I was already originally scheduled to see the surgeon on Monday, January 13th for a consultation prior to having open-heart surgery. Well, it was Monday and I was there. What a way to keep an appointment!
On the following Saturday, January 18, 2003, I had open-heart surgery. (6-1/2 hours) They did a 4-way bypass, they wanted to do a 5-way, but one artery from an earlier heart attack in 1969 was damaged so badly it wouldn’t take a bypass. They also replaced the aorta valve in my heart, which was only working 40%.
I saw the cardiologist on a routine schedule for over a year and was then put on a home heart - pace maker program where I have the pace maker tested every 2 months by telephone. I now am tested monthly.
Why am I telling you all this, because I was on the Prokarin patch all this time. The heart attack and open-heart surgery put me into a major MS exacerbation. The cardiologist and the cardiovascular surgeon were watching the effect the Prokarin patch was having on me.
Several of the MS symptoms were noticeable again and I was going backwards. They knew the problems I was experiencing were NOT heart related, but they had no answer for them. None of the medications – drugs - they were giving me, and I continued to take after going home, helped those symptoms. After several weeks and a new Prokarin mixture, the symptoms started easing up again and I am now back to about 75 to 80% of where I was before the heart attack and open-heart surgery.
It has been a slow recovery, but it is happening. They told me I am lucky, and it will take up to a year or more before I am totally healed from the surgery. After 5 years, the area of the incision is still very tender. Some of the MS symptoms kept me from being able to do the cardiac rehab program, so it might take longer. But again I say, “It is better then the alternative.”
After the surgery, it was recommended that I start back on Prokarin using the 1.65 mg strength. I did, but I am now back to 3.65 mg on the new mixture. I continue to see an improvement in my energy, fatigue level and my mood swings, and hopefully someday I will be back to as near 100% of where I was before October 27, 2002, if that is possible. I also experienced a serious bladder infection, which was taken care of with prescriptions.
My last and most recent scare was in October 2004 when I began to feel weak and was experiencing flu type symptoms and this was shortly after having a flu shot. One night I woke up with hot flashes and was sweating quite badly. I also had a high fever. I treated it as though I had the flu for several days before my wife convinced me to call the doctor as I was getting worse.
While doing his examination, the doctor noticed a very small black specs under my right thumb nail. He called them splinters. He called my cardiologist immediately and requested an echocardiogram ASAP. This was on a Tuesday and we were going away with some friends for a 4 day weekend vacation on Thursday.
I was scheduled for the echocardiogram on Thursday morning. He also sent me immediately over to the lab & x-ray dept at the hospital across the street from his office for blood cultures and x-rays. He advised me to cancel my 4 day vacation plans and stay close by.
I had the echocardiogram on Thursday morning which showed negative and my cardiologist said they probably wouldn't have the other test results back for several days, so go ahead and go on my 4 day vacation. Still feeling pretty weak I decided to go ahead and we went to a place just 30 minutes away from our home by ferry.
I got through Friday ok, just feeling very weak and still experiencing occasional hot flashes and sweats. As we were having a late breakfast - brunch Saturday morning my cell phone rang. It was my doctor. The blood cultures taken on Tuesday came back and the results were 2 of the 4 tests were positive. He requested – no insisted - I get back as soon as possible and check into the hospital. He said it was that serious. He had called and had a room reserved for me. I was to check into ER first. I was at the hospital within 3 hours and spent the next 6 hours in the ER undergoing several more tests that he had ordered before I was transferred to floor where I would stay for a week.
An infectious disease doctor came and saw me and put me on an IV treatment. It was suspected that I had Endocarditist, which is a bacterial blood infection that attaches itself to an artificial valve of which I had. It takes several days for the cultures to be analyzed. I had two sets of cultures taken. They discovered that the valve was 60% blocked and if not caught and treated immediately, can be fatal.
After spending just over a week in the hospital on a IV treatment, I was released to have 6 to 8 weeks of outpatient care treatments, which consisted of my going to the out patient clinic floor in the same hospital and having a daily IV treatment every day, including Saturdays and Sundays, which took about 1-1/2 to 2 hours. It was determined that I first had to have an IV injection of a strong dose of Benadryl injected very slowly to avoid side effects, as I was allergic to the IV drug they were giving me. My SED rate was 68 and below 15 is considered safe.
It took the entire 8 weeks of treatments plus a little longer to finally get it down to a SED reading of 13. I had blood cultures and other test taken weekly during all this time. The one good thing about having all the daily IV treatments was that they put a PIC in my left arm, which meant they didn't have to punch me with a needle everyday.
I was monitored every 3 months for over a year having blood cultures done to be sure that the Endocarditis doesn't flare up again. I am now checked about every 6 months.
Thanks to my doctor who spotted that very little spec (called a splinter) under my thumb nail, I am here to write this testimonial.
And, all through this medical ordeal, I continued using my Prokarin which kept me from having any additional MS exacerbations which are common when one has any major medial trauma.
As I sit here writing this testimonial, I can’t help feel that if just one person is helped, given relief, by what I have to say, and by using the Prokarin Patch, this testimonial has been worth it.
In summary:
Since I have been on the Prokarin Patch, take the prescribed vitamins and supplements recommended, and try to watch my diet, (which is very hard for me to do), I have more energy, less fatigue, the mood swings are almost gone, I walk and stand better, although not for long distances or long periods of time, I hardly trip – stumble or fall anymore, my vision has improved, my bladder and bowel functions have improved, I sleep better at night, (I now have sleep apnea and use a C-pap unit at night when I am sleeping), I hardly stutter or repeat myself, ) I just talk a lot), I have less pain in my right side, and over all, I say I am doing ok except that I am getting older and need to slow down.
I know that Prokarin is NOT for everyone, but what drug is? I tried it, and it worked for me. Others I know tried it and saw no relief. In many of these situations, they didn’t allow enough time for the drug to show any results, as it can be a subtle change, not as fast as my experience was, and it is also recommended you take the proper vitamins, supplements, and watch your diet. I’m sure I would feel much better if I watched my diet better.
Thank you Elaine DeLack for the Prokarin Patch. You have put some quality back in my life and a reason for me to be hopeful that for the many people who have MS, someday a cause and cure will be found, if the medical field ever gets their act together!
Thank you LORD for giving me another chance, and by not giving up on me. What with MS, Diabetes, Heart attacks, Bells Palsy, Open Heart Surgery, Endocarditis and more, you have always been there for me!
And most of all, I want to thank my wife, Carol. I never could have made it this far without her
There are still many things I wish I could still do, but I’ll keep trying. I pray a lot and my family and friends keep praying for me. I know that the LORD still has a lot for me to do assisting him by serving others, so here I am!
What you see is what you get!
William L. “Bill” Brayer
“73 years old and still doing it!”
"GOD BLESS"
(UP-DATED: 03/16/08)
ONLY YOU CAN MAKE A DIFFERENCE
IN YOUR OWN LIFE!
I have been asked, over and over again, why I do what I do. When I retired at the age of 65, I was told by my doctor to go home, take it easy, and enjoy what quality of life I had left as a result of having MS. This was sure encouraging words.
Well,
that lasted about one year. I was bored and driving
everyone crazy trying to keep busy with whatever I was still
able to do. The three part-time jobs I took on were ok, but they
didn’t give me the feeling of being truly productive, NO
personal satisfaction. It
wasn’t about making money; it was about feeling satisfied with
what I was doing.
I looked around and saw many people involved in various
volunteer activities and I witnessed their personal satisfaction.
For the first time in my life, I didn’t have to go to work to
make a living. I had nothing but time on my hands and I was
wasting it. I was
getting lethargic, eating too much, gaining weight, and
wandering around aimlessly. And, I found I was isolating myself
from my friends and family. I was lonely and bored. My attitude was lousy, and I
realized that people were avoiding me - I was NO fun to be
around.
Does this paint a familiar picture for you? It probably
does, as I see many people doing the same thing today, not seeming to
know how to get out of their MS ruts. Do you know the definition
of a rut? A rut is a “coffin with both ends kicked out!”
Only WE can make a difference in our own lives. First we
must take responsibility for our own personal health. Ask your
doctors more questions, look into alternative medicine, try to
exercise as much as you can, watch your diet, get involved with
activities or hobbies that interest you, and start enjoying
yourself again.
They say you are only as old as you feel. If you think
you are old, act like you’re old, and let yourself look old,
then you will BE old. I don’t know about you, but I didn’t work most of my
life, get diagnosed with MS and diabetes, and have open heart
surgery so I could enjoy being old. There are still too
many things to see and do, places to go and enjoy.
Many of you are probably thinking about your limitations
because you require the use of a cane, crutches, walker, scooter,
or wheelchair to get around. As long as you have the desire, you can
figure out a way to make the most of your situation and have
some fun in the process. Think
about the challenge and personal satisfaction you will
experience when your life has direction and purpose once again.
You have MS, but MS doesn’t have to own you! You may be getting older, but that doesn’t mean you have to LOOK or BE OLD! Won’t you join me and “MAKE A DIFFERENCE IN YOUR LIFE?”
[by Bill
Brayer]
I was recently interview by a newspaper that has been following my life's story about having and living with MS and they needed information to do an article. So, here is the information they requested:
William L. “Bill” Brayer:
75 Years old (03/07/08)
Retired in 1998 (owned his own business for 11 years)
Married 29 years (05/05/08)
5 children, 10 grandchildren
Has had MS symptoms for 56+ years, officially diagnosed in 1987
Has been a Support Group co-facilitator or facilitator for 20+ years
Bill:
Founded Multiple Sclerosis Community Services (MSCS) in 1997,
Founded the original Donor Closet in 1998,
Founded MS Helping Hands-MSHH in 1999 (a non-profit 501 (c) (3) Corporation)
(Has served as Chairman of the Board of Directors & President since its founding),
Reorganized the Donor Closet to be a function of MSHH (Over 56,000 DME/ME items
have been recycled),
Founded the Official MSHH Financial Assistance Fund in 2006 (Actually began
awarding grants from 2000) (over $105,000 total to date with over $50,000 in 2007 alone),
Started a recycling campaign collecting used stuffed animals that were distributed to
the children who survived hurricanes Katrina, Rita and the tornados that devastated Florida.
Over 45,000 recycled stuffed animals, plus many new ones, were shipped to the various
various devastated areas. More are currently being collected that were used for Christmas
and now will be used by local churches and charities for Easter baskets. The latest estimated
count collected over all so far exceeds 75,000.The beneficiaries will be foster children,
orphanages, and children of incarcerated parents.
Averages about 55 to 60 hours a week on various MS projects,
Writes and publishes a monthly SG & organization newsletter: “The MSHelp Informer” ,
Writes articles on “Living with MS is Not an Option; It is a way of Life” for local newspapers,
Maintains the MSHH Corporation website: www.mshelp.org,
Provides counseling to individuals & families with MS in areas he is familiar with,
Conducts MSHH workshops and seminars on MS (Has done several speaking engagements),
Produced 5 musical benefits for MSHH,
Started a MSHH Donor Closet Scoter Drill Team that participates in the City of Edmonds
4th of July Parades (The drill team was awarded 3 trophies in 5 of the parades
participated in),
Has had the MSHH Corporation participate (have a booth) in the annual “Taste of
Edmonds” event that gives exposure for people with MS,
Bill works mostly to provide financial assistance in various ways for people with MS, not
for special interest groups – medical research or the development of drugs. He believes
we should “Stop the Bleeding, then treat the Wound”
MS Awards & Recognition:
Bill has been written about many times and interviewed on radio and TV several times
being recognized for his Multiple Sclerosis activities and achievements,
Was Twice recognized as the “NMSS Support Group Facilitator of the Year”,
1997 – Was presented an “NMSS Certificate of Volunteer Appreciation”,
1998 – Was an “NMSS MS Walk Honoree”,
1999 – Was presented the 1999 “NMSS Achievement Award”,
2003 – Was one of 5 people in the State of Washington nominated for the
“2003 National Jefferson Award.” The Jefferson Awards are a prestigious
national recognition system honoring community and public service in America.
The Jefferson Awards are presented on two levels: national and local,
2006 – Was on the “MSF Top Twenty People with MS for National Recognition list",
2007 – Was presented the MSF “Outreach Leadership Award for 2007”,
2007 – Was presented a Congressional “Certificate of Special Recognition”
from Congressman Jay Inslee in recognition of outstanding and invaluable service
to the community,
2008 – Nominated for the “The 15th Annual Edmonds Citizen of the Year”,
(Was 1 of the 4 finalist and was runner-up),
2008 – was nominated for a Snohomish County Red Cross Humanitarian Award
and will receive it Thursday, May 8, 2008,
2008 – Nominated for the “MSF National Super MS Hero Award”,
2008 – Nominated again for the Jefferson Award,
Living with Multiple Sclerosis
THE FORGOTTEN ONE!
Being a person with Multiple Sclerosis (MS), who is also
a diabetic and recently had open-heart surgery, I can
speak with experience about THE FORGOTTEN ONE,
otherwise know as the Well Spouse or Caregiver.
People are always asking, “How is Bill
doing?” But, what about my wife, Carol, and all the other
Well Spouses and Caregivers out
there? Aren’t they just as important?
For
every person who is suffering from a medical
disease or crisis, there is a person, the Well Spouse or
Caregiver, who is suffering just as much, if not more
and probably more in many cases!
He or
she is the person who has to assume new
responsibilities, in addition to the workload he or she
already has. This can include taking care of the
children, including all their activities, quite often
holding down or having to take on a job outside the
home, caring for older parents, handling all the
personal finances, and just maintaining the family home
itself, with all of its exhausting, time-consuming
chores. It is a 7-day a week, 24-hour a day job, (24/7) more
then any one person should have to do. It is a super
human job!
After many years of having the symptoms, and finally being diagnosed with having MS, I remember coming home from the neurologist’s office and telling my wife, “I have MS,” and she replied, “NO, WE HAVE MS.” I didn’t realize then just how true that statement was. I carry the actual disease, but she carries the burden of it. She lived with the many affects of the symptoms I had for many years. I was not just getting old, or being a crotchety, grumpy old man, I had a disease that finally was given a name, Multiple Sclerosis!
It is
hard for me to function as I once did, but if it
weren’t for her, I couldn’t function as well as I
now do, and as time goes on, I will get worse, and the
burden on her will become more demanding.
For
all the John or Jane Doe’s out there with MS,
there is a Well Spouse or Caregiver,
who needs to be recognized. Please don’t forget them.
He/she needs to know someone cares how he/she feels.
They also have feelings and emotions. And, no matter how
bad he/she feels, they have to be up for us and all of
our needs at all times.
Each
month I look around our SG meeting room and I am
overwhelmed at the attention the Well Spouse is giving
to his or her spouse. They go out of their way to get
his/her spouse to the meeting, assist and wait on them
getting them their refreshments and sitting through
an MS meeting in order to hear, share and learn more
about the disease he/she will be forced to accept as a
way of living the rest of his/her life.
The
newly formed SG Well Spouse/Caregiver subgroup gives
them an opportunity to share what other well
spouses/caregivers are going through and dealing with.
The interest and sharing shown at this special subgroup
meeting restores my faith in the words spoken at the
marriage ceremony: “In sickness and in health, till
death do us part!”
Well
spouses and caregivers are very SPECIAL people and there
are not enough words that can be said to let them know
how much they are appreciated.
God
bless each and every one of them!
William L. “Bill” Brayer