I was just diagnosed with ALS, Amyotrophic Lateral Sclerosis
ALS is also known as Lou Gehrig's Disease
Monday, December 12th, 2011
This has been a very long day for me. I am so sorry to you all to have to inform you that I was correct. This is not going to be good.
Doctor Shepherd confirmed today the diagnosis of ALS Amyotrophic Lateral Sclerosis.
Otherwise known as Lou Gehrigs Disease. This disease is bad, it couldn't be any worse but I want all of you to know that my spirits
are high and I am not in pain. I do believe that you will all see eventually that I am different than other ALS patients.
There are a few things about my case that can only be compared to one known case. Stephen Hawking is undoubtedly the smartest man
on the planet, next to me of course. He was diagnosed in 1963 and he is still alive today. He is the longest known survivor. This is significant for a few
simple reasons. The average person is diagnosed after 1 year from the time symptoms begin, survival rate is about 2 to 3 years more.
I told you I was in a traffic accident in 1990. I have had all of these symptoms since then, except for the atrophy. I have had my symptoms
for 22 years. That's 19 years longer than the average victim survives. My body has taken quite a hit. I do need a walker today. I will start
looking for either a wheel chair or scooter after the holidays. I will still use the walker as long as I can, I will use the chair for stuff
I couldn't accomplish otherwise. Wal-Marts are huge! I can't really do Wal-Mart with a walker but Dollar General stores I can handle. I will
continue to keep you posted on my situation. I will close for now with just a little bit of knowledge about this disease. First off
I hit the friggen lottery here. I think I had a better chance of getting a date with Jennifer Anniston than acquiring Lou Gehrigs
disease. How about one in one hundred thousand. And it chose me? well yes. ALS is where body parts fail to cooperate.
The left leg does whatever the hell it wants to while the right leg refuses to move. Motor neurons die. Now that affects the voluntary
muscles, not the involuntary ones. Your arms and legs are voluntary muscles. The heart and the digestive system are involuntary. So while I have spent nearly
20 years wondering when will this get my heart? How can I have every single muscle twitch, tick and spasm daily yet the heart never takes a hit?
Now we know why. My heart like yours works involuntarily. So my legs refuse to carry me more than 50 feet, my fingers are very clumsy on this
keyboard but I got a damn Timex under the hood. My heart just keeps on ticking. For a while I was concerned about dementia.
I told my sons God can have my legs, I'll get around in a wheel chair. But I can't replace my mind with a laptop. No problem. Dementia
is not in the cards. There are 2 forms of ALS. One is called "Familial" meaning hereditary. The other more common form
is not. the 20% of the cases of Familial ALS are so damn hereditary that I would have a 50% chance of having a parent with it.
I would have a 50% chance of passing it on to my kids. I think it is safe to say that's not going to happen.
So this past week was busy for me. I had to have some dental work done. I can't explain how or why but shards of bone were sticking through my gums. I don't know what's up with that. The dentist removed it with tweezers. The first time I thought she pulled a piece of food from between my gum and the tooth. The second time around I realized I was wrong this is like bone, and it just poked through the gum way below where the tooth meets the gum. I don't care. I got bigger fish to fry. Just pull the friggen teeth will ya? I had 1 last appointment with Brevard Health Alliance. I kept the appointment just so I could say thank you and happy holidays to Bruce Simpkins ARNP. Bruce was the guy who said I think you may have MS or Parkinson's. After 22 years of agony he was the one who suggested "Disease" VS injury. Thank You Bruce for all you have done. I know if you could have helped me you would have. Better luck next time. Next I visited with a guy from the (PVA) Paralyzed Veterans of America. David was in a wheel chair, I asked if he was an ex Marine... Oops my bad. Now I know there are no Ex-Marines. David and I have little in common he has a spinal chord injury, I have a spinal chord disease. His prognosis is of course much better than mine. David gives new meaning to "Improvise, Adapt and Overcome". His hands wont fully open or close yet he can still write. David took a block of wood drilled a hole through it and wedged his pen in the hole. He can't hold the pen but he can hold the block. Improvise, Adapt and Overcome my friend you are an inspiration. David is helping me to get some benefits that I only qualify for because of the nature of my disease. Motor Neuron Disease MND is a blanket statement that covers several diseases. I think there are 6 of them but I am just guessing. PLS is similar to ALS. ALS however is a game changer when it comes to the Federal Government. I don't know what the hell they did to me or my fellow service men and women, but ALS has been classified as a service related illness since September of 2008. The Social Security Administration also recognizes ALS as 1 of only a handful of conditions that make Medicare automatic. I expect to not only receive Social Security Disability, but I expect a military retirement as well, complete with a pension which will be no less than a 30% disability. I doubt they will classify me as 100% to begin with but I am guessing it will be around 80%. So I guess that when the dust settles I should get maybe $400 a week or so between Social Security and my VA Benefits. Honestly? is that what my legs are worth? Is that the value you placed on my life? Some guy with a 7 digit income determined that $400 a month would make up for this. I don't care. Keep your damn money. I don't want it. I want to know what the hell you put in the Kool-Aide in the chow hall. Or was it some experimental fucking vaccine you gave me? You told us there was tear gas in that gas chamber we trained in. What the hell was it? Mustard Gas? Nerve Gas? We trained hard in the early 80s. It was the cold war, but we played for real. We used real weapons, we used real bombs, we had real Dog Fights with real A-10s and F-16s. Our M-16s and our 45s had real rounds in them. Was the Mustard Gas real? I worked in a building with better security than the White House. We had 12 foot thick walls. I repeat we had 12 foot thick walls. That building could have protected me from a direct hit of any type. I am not embellishing here. The walls were 12 foot thick. My mission was so damn important that I had better security than Obama, so It kind of pisses me off to think that I was part of some science project that went awry. I thought those walls were there to protect me. They were there to protect my mission, not to protect my life. Many men came home from the first Gulf War with ALS. The Bean Counters claim it was something in the Gulf that caused this. Bullshit! Why Isn't it called the Iraqi Disease? Where is the data on the enemy? If there is a link here, the link started back here in the good old USA. It started in Boot Camp. We got so many damn inoculations I felt like a pin cushion. I don't know what caused this, but Uncle Sam has owned up to something here. Somebody knows what did this to me. They aint talkin though. I would give up every damn dime and all of the benefits for an answer. An answer that will never come. When I took a vow to die for this country I thought it was a foreign government that I should have feared. I better shut this down or I am going to run out of anti-anxiety meds real soon. In the next life I will question authority. I hope the people on the next planet are nicer than the ones on this planet.
This is gonna be a long day. It's gonna be a great day but a long one. In 9 hours Justin will arrive for the holidays. My anxiety has been high for the last 2 days. I think it's cause I am nervous of how he will see me. If I am sitting down I look just like the guy you all remember. When I am on my feet it's a whole different thing. My spasticity has been progressing, this really bums me out. Shopping and just being out in public is a little stressful. I feel like people think I am some kind of a half wit. Sometimes it's humorous to see the looks on their faces when I walk across the parking lot and get behind the wheel. I know what they are thinking. Retarded people can drive? I am very self conscious of using the courtesy electric shopping carts in Publix and Wal-Mart. I must admit when I see an overweight person in one I think to myself maybe you should get up and burn off a few calories fatso. How could I ever be so callous? Just cause she is 400 lbs doesn't mean she doesn't have a medical condition that put her in the chair. When I see a normal healthy looking person (That's Me) I want to say quit goofing around, or don't be so lazy you will wind up looking like fatso over there. I am ashamed that I felt that way. I am ashamed that I never gave a crap about the handicapped. I never have taken a handicap parking spot until I got the sticker, even now if I can do without it I will. There are people in worse shape than I. I can tell you a few things I have learned recently. First off there are not enough handicapped spots available. Most are too far from the door. Handicapped ramps exist because it's the law. While the law says you must have ramps they need to go further and specify how long and steep the ramp should be. I am still on my feet. A wheel chair may do okay on a steep ramp but a guy like me can't do a steep ramp. If the curb is 5 inches high and the ramp is only 2 or 3 feet long it wont work for me. It's too steep. Another problem is the location of some ramps. When the ramp is at the far end of a sidewalk I often just find a different store. Why can't the ramp be near the door? I know it sounds lame that I can't walk the extra 50 feet, but I am lame. I notice now when there is a car in a handicapped spot and they don't have a sticker. I always assume they needed it, maybe they are on their way to apply for the sticker. When I see a rednecks pickup truck with mudders and a 24 inch lift kit in my parking spot I just want to scream. I will keep my mouth shut, but it's hard for me to understand how a handicapped guy can get into a truck that was too high for me when I was healthy. I will give them the benefit of the doubt but I want someone to explain to me how a handicapped guy got in to a truck that is high enough to roll over top of your Spitfire without touching it. I'm just sayin. There are 3 places in this world I will not likely ever visit again. My friend Brian has 3 steps leading to his front door. No more Brians house for me. His house smells funny anyhow. My brother has a 3 story home in NJ which has steps at every entrance. It's a real nice house but I couldn't get in to his house with or without a wheelchair. Same goes for my Aunt and Uncles house in Staten Island. So with a Hoverround I can see the Grand Canyon, but I can't visit my brother.
Oh my God!!! I just saw an article on the evening news. 25 years ago this lady swallowed an ink pen. Both her husband and her doctor DID NOT BELIEVE HER. Hey doc... you a**hole do you believe her now? they just removed a 25 year old pen from her stomach you idiot. Here is a link to it click here. This is just my point. If you have a problem and the doctor doesn't believe you grab that em effer by the throat and make him understand. She had a pen in her stomach for 25 years. This rings big loud bells in my ears. What if... I mean is it possible that if 22 years ago some doctor was willing to give me the benefit of the doubt maybe... just maybe I could take a walk around the block tonight. I can't hold any doctor responsible for my fate. I admit I was a bad example of a patient. I now know that I was not articulate enough back then to properly explain my symptoms. There were at least 15 doctors back then who missed this. The common link was me. I can't fault any of them. I would be willing to bet that if I had met Dr. Shepherd back then he may have figured it out. The guy is good, he's one of the best. Could it have made a difference? maybe... maybe not. Chances are if I would have known back then what the deal was the stress of living with the knowledge would have caused a much more rapid decline in my health. We will never know.
Oh what a difference a few months makes!
Yesterday I went with the Norrie family to the beach for the annual family photos. The first photo here shows the entire family except Penny and Justin. Penny is standing in front of her husband Glen who is on the far left, if you look close you can see her elbow. Justin is taking the picture. So I got in on the action this year. I got my photo taken with my boys and the 5 chosen ones. For safety reasons I am not showing the 3 youngest ones here and that's why I used a photo without faces. With the exception of the girl holding Jason's hand, this is one family. When I got home last night I found a package on the doorstep, a wonderful gift from Bert (My older brother). Included was some photos he took at my Aunt and Uncles 50th wedding anniversary party where a good time was had by all. Oh my God! I could not believe the difference in just a few short months.
The photo on the right was taken on April 16th 2011, I was feeling rather ill at that time. I was about 15 pounds heavier than the photo on the left taken on December 22nd, 2011. Only 8 months later.
Look again I am 15 pounds lighter today. In 8 months my hair turned grey and I lost 15 pounds. Did you figure out yet the point I am trying to make? While my face shows a significant weight gain and the full body shot shows the same I have lost weight. How can that be? Muscle atrophy! I have packed on weight in my face, my chest, my big fat belly and my cute little ass, but I have lost so much muscle mass that I am actually much lighter now. One day at the doctors office I got off the scale and said "Wow I lost 2 pounds". Not! I lost 12 pounds. I am almost at my optimal weight of 176, but you would never know it. Bands of muscle are missing from my arms and legs. Going to the gym would never help. The muscles wont get stronger because they are gone. The atrophy is far worse on my right side. I am right handed, if anything my right arm and leg should be larger. Total strangers have noticed that my right arm is skinnier. While they were getting their photos taken on the beach, some lady, a total stranger, asked "What the hell happened to you?" she was the second total stranger to ask that very same question yesterday. While my disease is progressing I believe it is progressing faster on my legs. I do take a bit of comfort in that. Okay it sucks, I know, but while it is a given that I will soon lose the use of my legs altogether, I will soon be a paraplegic. I am hoping to maintain some use of my arms and hands. Please God! Please let me keep my hands. Please let me keep my arms. Please.
The above photo is me with my older brother and older sister, Bert and Lisa.
Below is me with Baby Boy (Josh) Harris and his brother Jeremy.
Josh and Jeremy are the first of 5 kids that Penny adopted. And his name really is "Baby Boy Harris" as seen on Facebook. That's what happens if you forget to tell the nurses "Oh yeah we picked out a name today". Josh is too damn funny. A well meaning judge legally changed his name to "Josh". Josh used his first paycheck to legally change it back to "Baby Boy Harris" I call him BBH for short. Josh is the younger, taller one on my right. Jeremy is a very talented gymnast and break dancer who has toured with Fighting Gravity the 3rd place winners of "America's got Talent 2010". He has also auditioned for and been accepted by Cirque Du Soleil though he has not yet performed with them.
Geez Louise can we please end this **** year already?
So yesterday was another long one. Yesterday was a good day and I felt almost as good as the day before. I met my new doctor. I never had a female doctor before. Her name is Dr. Lopez. I will always remember 1990 as the year that Barbara Conn rear-ended me. I wonder if my doctor will remember 1990 as the year she graduated the 5th grade. I like her, she spent more time with me than any doctor ever made me sit in the waiting room. This was by far the most time any doctor ever gave me! We spent about 2 and half hours together with the head nurse of the Spinal Chord Injury Unit. I like Nurse Angela as well. I walked in to the room and said to this beautiful young lady (Not that this matters) Are you Doctor Lopez? She said yes. I invited her to my birthday party, I invited Nurse Angela to my birthday party as well, my 60th birthday party. They both accepted and I assured them I would hold them to it. Dr. Lopez did some of the tests that Dr Shepherd did just 59 days ago. She ran her finger nail across the bottom of my right foot, just like when Dr. Shepherd did it, I didn't feel much, there was no tickle. As she went to run her fingernail across my left foot I said "you're gonna see a big difference now". Oh crap! she couldn't tickle the left foot as Dr. Shepherd did just 59 days ago. This is bad. I am sure she knows that ALS is a game changer with the VA. I told her that ALS now makes Medicare automatic and I applied so I could get a wheel chair from them. She assured me that It would be best to get it from the VA, because they will handle any upgrades and repairs as necessary, where Medicare wont. My thought was this. When the VA gave me my walker they wheeled it out and handed it to me, no picking and choosing. They gave me a nice one, it's the nicest one I have ever seen, but if I went out to buy one it would have had a padded seat. Several companies with numerous models of wheel chairs and scooters advertise on the TV saying if we pre-approve you and Medicare denies it, we'll give it to you free! It wasn't the free remark that I liked, it was the fact that I could shop around and pick and choose. I don't want to start with a wheel chair. I think a scooter would be much cooler and may have a basket for shopping. The wheel chair screams out I am handicapped and the scooter shouts out "hey ladies". You didn't think a silly little thing like ALS was gonna keep me from trying, did you? Anyhow Dr. Lopez stated that we would work with the technicians and several wheel chair vendors to "come up with a good match". I have already done a little shopping around, I know how and why a scooter may be right for one guy, and the next guy needs a wheelchair. I already know that I will need a wheelchair at some point. I already know that I will need the joystick. I already know that sooner or later every muscle below my neck is going to die. I have tears in my eyes as I type this. I want to start with a scooter. Saying that just now made me more emotional than I have been since Thanksgiving. Dr. Lopez gave me some stronger meds today, I am about to take a few. I had alot to say. I was about to tell you how I have allowed myself to relax all through the holidays. This time of year has always been the most depressing time of the year for me. I have armed myself with enough pills along side my bed to get me through it. I was about to tell you that January starts a new year, a new page for this site, and a new attitude. I have let everything go. I still have not given my official diagnosis to the PVA. I really have not Googled anything regarding my disease since Sunday November 20th, the day I told Penny this is gonna be bad, really really bad. I Googled all I could about Lou Gehrig, the man, the powerhouse Yankee first baseman but not his disease. I watched "The Pride of the Yankees". I did have a link here for you to watch it but, HULU took it down. I had Xannax and Capt. Morgans on hand in-case it made me too sad. Boy was I surprised. First off I didn't know that Babe Ruth and several other Yankee greats portrayed themselves. Twenty minutes into it I hit pause and Googled up a little history. I could see that Hollywood was putting a little spin on it for dramatization. I wanted to know how long he played for the Yankees before he first had symptoms, How much time elapsed between his first symptoms and his diagnosis, How long did he survive. How accurate is this movie. Well I'll be. I learned so much more. It's not called Lou Gehrig's Disease because some famous guy got it. It's because he was one hell of a ball player. He went to college on a football scholarship. He had a rivalry with the greatest homerun hitter and most colorful ball player in history, The Babe. Lou Gehrig was the number 2 hitter period. He lived in the shadows of Babe Ruth. Later in his career he lived in the shadow of another superstar, Joe Dimaggio. Lou Gehrig held so many records. He was called "The Iron Horse" He held the record for the most consecutive games, 2,130 games in a row. This record would not be broken until Cal Ripken Jr. achieved 2,131 games in 1995. I enjoyed the movie. It was about the man and his career, it ended with his retirement speech. I don't think they even said the name of the disease. His wife said "I'll bet it's a real long name and nobody could pronounce it." We didn't have to see him suffering and deteriorating. I still drank the Morgans though. Why not? Talking about the joystick put tears in my eyes, I'm glad I spoke of Lou Gehrig here. It got me off the ledge, but I am having real bad symptoms right now. So far I have not mentioned much of my symptoms. Right now my neck is cramping painful bad, and I feel like I have a thousand ants crawling all over my body. Yes this is normal for me, right now it is real bad, and it's 3:45 AM. I wanted to tell you how January was gonna be different and why, but instead I am going to swallow a handful of pills and pass out. I'll get back to it when I wake up. Good Night.
Okay I'm up, I'm up. I was in bad shape at 3:45 AM. It wasn't talking about The all time Grand Slam Leader. (He still holds that record) Alex Rodriguez, another Yank go figure, is just one big hit away from tying it. Come on A-Rod show us number 23. Not that I think it matters but in the 1930s there was no asterisks. It didn't saddened me so much about the wheel chair VS scooter dilemma (Maybe a little). It was because I got to thinking about how Dr. Lopez could not tickle my left foot. I tried over and over to do it myself, no such luck, this illustrated to me that maybe things are happening faster than I thought. I took more sedatives this morning than ever, and still I was a wreck at 5:00 AM. By 6:00 AM I was smashing my head into my pillows. At 7:00 AM I took more pills, and again at 8. I think I passed out by 8:30, and that was my plan. Please don't go there! I know exactly what you are thinking. Please don't lecture me about drug abuse, what's it gonna do kill me? I still have a sense of humor, which has always been odd. My brothers could always make people laugh. My sense of humor has always gotten raised eyebrows. When I say "what's it gonna do kill me?" that is my sense of humor. I believe that a person must have some special gene, or some mental anomaly to be able to commit suicide, whatever it is, I don't have it. In November I was given an antidepressant called Trazodone. I asked for anti-anxiety meds over and over, but they would only give me antidepressants. I had a bad reaction to the Trazodone. It was a nightmare, I was the star and the audience to my very own horror show on November 16th. If I had the gene or the anomaly it would have been game over that night. I had pleaded for Xannax or Ativan for anxiety. I purchased some of both illegally but I was afraid to add anything to whatever medication malfunction I was having, so I suffered through it. BHA Brevard Health Alliance was not taking this serious, but I was a wreck. I never wanted Paxil or any other antidepressant, my problem was anxiety that would turn into complete mental breakdowns. The next day November 17th I walked into the VA clinic for the first time ever. Please friggen help me! I don't know if I qualify for any benefits but if I do I need you now! I have been having so much damn anxiety that I want to slam a screwdriver in my ear. Oh I am an idiot! Here is some practical advice. Don't ever say that in the presence of a cop or a doctor. OMG! They took it serious. I cant put a friggen Q-tip in my ear, let alone a Phillips Head. I was merely trying to explain how desperate I am. The Doctor, a PA actually says well we can't do that in this department but if you would like we can refer you to mental health where they can prescribe something for you. OMG! how long will it take to get an appointment with Mental Health? Keep in mind I just walked in off the street with serious back pain and in the middle of a mental breakdown. I was in the Mental Health Department 30 seconds later facing a doctor who says "So Mr. Berger I understand you are suicidal". What the hell are you talking about? I asked. I told you earlier that 22 years ago I was not articulate enough to explain my symptoms to the doctors. You may be thinking that I seem to be very articulate. On paper? sure. I have always allowed my motorboat mouth to run off with my row boat ass. I have 1 button on this keyboard where the ink has worn off, the backspace button. So what comes out of my clumsy trembling fingers fairly well has never come off my tongue as planned. I got arrested once and only once, though I committed no crime. All I did was date a real cute girl who never mentioned she had a boyfriend, she never said "He's a cop". Was I supposed to be intimidated when a Palm Bay cop approached me in Melbourne which was out of his jurisdiction? Should I say okay no problem when he said stay away from my girl? Yes I wish I had. But I got Motorboat Mouth and he is out of his jurisdiction. Soon I would find myself in his jurisdiction, I was surrounded by about 12 cops and guess who put me in hand cuffs for "Resisting Arrest". If a cop says "Put your hands on your head" It is illegal to take a half of a step backwards and say "You can't arrest me". This was the one and only time in my life where any human being heard me sing. While in the pokey I re-enacted the scene of Eddie Murphy singing "Roxanne" My voice was loud and proud and echoed all throughout the jail house. They later transferred me to Sharpes (County Jail) where yet again my motorboat mouth would cause me more problems, I am too cute for jail. Fortunately I heard my name with a question mark after it. My friend Andy was calling out my name acting like he didn't know me. I picked up on what he was doing right off the bat. I knew he worked at the jail, I had no clue what he did there. The look in his eyes said don't let anybody know that we are buds. Turns out he is the guy who determines if I can be released without bond, or a bond hearing. Thanks Andy. So Even Nurse Angela kept telling me be careful what you say. In the presence of a doctor it doesn't matter how you say it. It really is what you say. They don't hear emphasis or laughter, they don't see the wink, they don't hear that telling giggle. They hear "Screwdriver in ear". I have to go all through this with a doctor and explain how I don't have the gene, I will not and cannot hurt myself or anybody else. I explain I am very ill I need Xannax not a straight jacket. It took a while to gain the confidence of this doctor, but I did. She says "Look at my position. You have never been here before. This is your first time ever in the clinic. I can see you are ill, but put yourself in my shoes you just walked in off the street. We have never met, You are asking me for pain pills and Xannax." She writes out a prescription for Trazodone. Trazodone? Are you friggen nuts? That's the crap I ate last night. Mark me down as being deathly allergic to that crap! Please, Please I have been asking for "ANTI-ANXIETY MEDS" for the past 10 weeks. Please! Now I fully understand they can't hand out Xannax or any controlled substance to some stranger who just stumbles through the door saying I think I may have MS so please give me pain pills and Xannax. I get it. Thank You Dr. Hockman. I was given Buspirone, generic for Buspar, which is not a narcotic. This was not the answer but it did get me through a rough patch. That info page where they list side effects and uses, I file it away I quit reading that crap. If a side effect is a heavy flow I'll wind having my first period. I later discovered it said this. Uses "This medication is used to treat anxiety. It may help you think more clearly.... Yada yada yada" Bert told me to quit reading that crap and I did. This stuff helped alot, I still have alot of Xannax on hand for emergencies only. I swear up till this day I may have had 5 of them in forever. The Buspar made my moods extreme. When I was mad I was super pissed for no reason, when I was sad I was real sad. When I was happy I was real happy. For the first time since July I laughed, watching TV. I laughed out loud. I will accept the extreme anger and sadness, just let the laughter continue. Laughter has not been heard in this house for far to long. It is November 17th, this date is significant, here is why. Remember it said "...may help you think more clearly" I took it twice a day, the second dose at bedtime, it allowed me to finally get at least a little sleep. 2 days later the laughter ended. On November 19th after my bedtime dose I laid down in bed. My thoughts were now clear for the first time in months. as I was dozing off my whole body spasmed. This is not a disease type spasm. This was an OMG! Spasm. I sat up bolt right, I looked around the room. For 2 and half months I Googled every one of my Symptoms, I Google every Disease I could find. I had 2 computers and 3 monitors going 24/7. One monitor was opened up to a dictionary, another used to Google medical terms. I told you I was good at research. I was going to Universities, and other websites used by the medical industry, not truck drivers. It's 3:00 AM, November 20th. The final 2 puzzle pieces just fell into place. I was definitely in denial still. I stared at my computers with 3 different screensavers going. I am scared shitless! Excuse my French. That word... the really long one... it began with the letter "A". It came up in a Google search more than a week ago. "Is that what it said? Did it really say it does not affect the involuntary muscles? This can't be. That had something to do with Lou Gehrigs Disease which I know is fatal. I know damn well I don't have Lou Gehrigs Disease because he went crazy. Didn't he? I saw the movie he was climbing the backstop screaming at the crowd. He went nuts, I am not going nuts I'm losing the use of my legs". I saw the movie decades ago, I remember him going crazy, It took me more than 15 minutes of staring at 3 flashing monitors all with the screensavers going before I got the courage and strength to sit at my desk. I have 2 note books full of notes. I wrote that god forsaken word down somewhere. What was it? Amyotrophic Lateral Sclerosis Referred to in the US and Canada as Lou Gehrigs Disease. There it is ALS causes muscle atrophy right at the top of the page. 2 or 3 lines below ALS is a motor neuron Disease which only affects voluntary muscles not the involuntary. Get the F*** outta here! What time is it? I need answers, I need them and I need them now. It's now 3:30 in the morning. I need to call Sam. If I were ever gonna be on the hit TV show "Who Wants to be Millionaire" This guy is gonna be on my Phone a Friend List. Sam is a movie trivia master. I shut down both computers, I am still in denial. I laid back down in Bed. I know he went crazy! I know he did. Sam will know, Sam will know every actor in the movie, he will know the year it came out, he will know the movie plot and how it ended. Sam is going to tell me facts and other nonsense I don't care about. I am freaking out, because I know that the 2 puzzle pieces I could not account for with any other theory was first off muscle loss, MS is an almost perfect match. MS might cause muscle weakness in some cases but I can't find one damn resource that claims it causes muscle loss. The other missing puzzle piece is my heart, it's a muscle. I now see how this crap can twist every muscle, cause me pain and agony for decades, make me the but of many jokes yet never trigger a heart attack. So I may have something similar to Lou Gerhigs Disease but mine isn't driving me crazy, I'll bet I am getting closer to solving this. I'll bet mine has a cure. What time is it? Crap it's only 3:36 AM. I can't call Sam this early. He is an early riser but I can't call him now. I have enough of my new meds, the Buspar in me to put me to sleep. I didn't know it then but it will be about 3 days before I sleep again, and the laughter has ended after just 2 days. I made breakfast, I played with the cat, and went back to bed. Are you friggen kidding me? It's only 4:45 AM. I turned on the TV, MWC comes on at 5. I watched TV, I tossed and turned. at 6:59 I called Sam. "Sam in the Lou Gerihg story, the movie about Lou Gerihg Didn't he..." He cuts me off. "It wasn't called the lou Gehrig Story. It was The Pride of the Yankees, it starred Gary Cooper and came out in 1940 something shortly after...." I asked him to please shut up! I asked what happened to Lou Gehrig? Sam says he had some weird muscle disease that killed him. I said "He went crazy. Right?" He assured me that Lou Gerihg did not go crazy, at least not in the movie. I asked about the scene where he jumped on the backstop and started screaming at crowd. Sam You broke my heart, I cried right after we hung up. Sam said "You got your movies mixed up. That was Anthony Perkins in Fear Strikes out, about Jimmy Piersall who was Bi-Polar. The Movie came out in 1957 or 1958 it was directed by...." Please shut up! I asked him again if he was sure. I knew he was, Sam is the movie trivia master. I am sure he asked why I needed to know this at 7:00 AM. I have no clue what I said. I am in a panic, I fired up the computers again. I am researching atrophy, Nerve conduction, paresthesias, Electromyogram, myasthenia gravis, peripheral neuropathy, Myelin, Amyotrphic and whole bunch of other words that I have not a clue as to their meanings. But I am learning. I Googled Lou Gerihgs Disease, I Googled Amytrophic Lateral Sclerosis. I learned that it only affects 1 or 2 people in one hundred thousand depending on who you believe. I learned that I hit the friggen lottery on disease. I now know it, I am positive. I am so sure of this that I am willing to take whatever medication they prescribe for it right then and there. I looked that up as well. There is only 1, count em one drug which has been FDA approved. It's called Rilutek. This is no great white hope, this is no cure. While you will find web sites that claim it can slow down or stop the progression and in some rare circumstances reverse the effects of ALS, I don't believe it. I have not seen this from any truly reputable source. The manufactures make no such claim that I know of. The manufacturers claim that in clinical studies the patients who got the real drug and not the placebo went an average of 4 months longer before needing a ventilator. This is my fate. Please keep in mind I quit Googling anything at all related to ALS right then and there. It may be true that Rilutek can reverse my symptoms, or extend my life by 20 years. I couldn't handle anymore bad news. I still to this day have not. That day was November 20th, the day I told Penny. The day we discussed how to handle this. I showed her just enough to where she knew I was right. The following morning I confronted Dr Shepherd. He said yes he suspects ALS but we have 1 more thing to rule out. I was informed that this probably would be the worst possible diagnosis, it may also be the best. This could be caused by a Chore Compression Between C4 and C5, I know you already know it but just incase C4 and C5 are vertebrae in the neck. This is right at the point where my symptoms are cutoff. I have no spasms or fasciculation's above this area. Every bit of my disease is limited to below this spot. I asked only 1 more question, I asked if a chore compression could account for the atrophy. He stated there could be a small amount of atrophy associated with it, I said I was concerned that I had alot of atrophy. He said "I am also" I never mentioned the heart. I knew the deal, I knew for sure that if this was caused by a chore compression I would have had a heart attack years ago. This set my mind at ease. You might have to be in my shoes to understand this, but my mind was at ease. I considered going off all my meds. I was positive that I had ALS. I am positive it is not the MS I was hoping for. How can I be all of a sudden at ease when I just learned that I am going to die a horrible death at a very young age? It's simple You can't give me any worse news. Dr. Shepherd armed me with an awesome tool, He didn't know it, but just telling me that there was a glimmer of hope, hope that I knew was bullshit was going to make this much easier. Oh hell yes! I can prepare my family for this, I can prepare my friends for this. Penny and I discussed this. I know damn well that if I keep my mouth shut, on December 12th I will have my official diagnosis and now 2 weeks before Christmas I have to tell my kids I have a terminal disease. We can use what we both know is BS to soften the blow. I notified my 2 sons, my 2 brothers, and my sister on that very day. I told them what I suspected and all about my unscheduled office visit with Dr. Shepherd that day. I told them there is no middle ground here. This is going to be ALS or something that can be surgically corrected. There will be no middle ground. I let them all know it was only a small chance that this is fixable. I said "I doubt it's like a 1 in 10 chance that a chore compression is causing this, It's probably more like 1 in a hundred, but even if there is only a one in one thousand, or ten thousand chance of it, that's still better odds than me having Lou Gerihgs Disease. That's one in one hundred thousand". We all held out hope, I kept my game face on. I let them all know this is probably bad but there is hope. I think my approach to informing my family helped my sons get used to the idea of ALS a little at a time. Another great concern I had and still do is my brother, he took the loss of our mother 9 years ago very hard. After having my diagnosis in hand, after Social Security Said Yep you are disabled, after not 1, but 2 different doctors confirmed the worst, my brother still wasn't buying it. I have not made any decisions by myself about any of this. I have some great support and guidance from my ex wife, my 2 sons, my sister and a few friends who are no strangers to tragedy. While I did not publish this site until December 12th, I had the diagnosis on December 2nd. The nerve conductivity test and EMG Elecromyography test was done by Dr. Packy. Now I didn't care that he lacked some professionalism, but the man was reckless. My son Jason was with me. Dr. Packey knew that I was aware why he was doing these tests, and so was Jason. The EMG is also know as the pin test. they literally jammed this needle into about 80 different muscle and view it on an oscilloscope (only big word on this site that I knew prior to this past summer). Each time he would say "I'm gonna call that a CDR" The technician would confirm that he agrees. After 79 pokes between both legs and 1 arm he says "lets stick it in his throat". I thought he was joking. NOT! Yikes! that sucked. When he removed the needle he said "Well, there's only one thing that will cause that". I asked "What?". He said right in front of my poor son "ALS" I kept my family and only a few very close friends advised. I go straight back to the VA because this is way beyond anything that BHA can help with. I am begging for sedatives, I need your biggest baddest pill to knock my ass out at times. I told them all along if they won't give it to me I will get them from the kid on the side of the 7/11 store, and I did. If there is one time in your life that you absolutely positively must tell the truth it's when the paramedic says "What did you take?" I am going 1 or 2 steps further and letting every doctor and every nurse know all about every damn drug I take, regardless if it was prescribed or legal. For the sixth time the VA turned me down. The Buspar helped alot. Buspar is not a controlled substance, and I need to kick it up a notch. Once again they turn me away. I am saying please I was just told I have ALS. You got that in writing? they asked. I was so pissed. I stormed out of there as fast as I can, which aint real fast. Half way to the door I stop and sit down on my walker. I am having a hissy fit. I fold my arms and look around the Gemini Section of the VA clinic, who's office am I gonna kick down the door of and complain? I look to my right, I look to my left and 6 inches from my face is a poster on a door that says "Are you paralyzed? Do you have a spinal chord disease? if so there may be special benefits available to you". I found my door. I go inside and speak to a kid, I mean he looks like he is 17 years old. When I said I have ALS he says sit down and closes the door. He let's me know that ALS is considered a service related disease and it doesn't matter when or where I served, it doesn't matter when my symptoms began, they will take care of me. They still wont give me stronger meds, I am still buying Xannax on the street and being honest with them about it. On December 12th I brought them the official diagnosis in writing, they change my primary care doctor from a general practitioner to a spinal chord specialist, Dr. Lopez. Finally we can engage in a rational conversation about pain management, and anti-anxiety drugs, real ones. If I ask for Quaaludes, I just might get them. What's it gonna do kill me? I sat back down at this computer at 6:00 PM just like it says. It is now 1:30 AM and my neck is cramping again. I have been trying to make a point all this time, I want to make it now and finish Decembers Blog. Stress and anxiety have ruled my life since August when I realized I had a disease. The holidays depress me on a good year. I have avoided all of my responsibilities regarding my disease. I have benefits I must apply for, I have paperwork I need to complete. I have phone calls to make and people to see. I blew it all off, every bit of it. I planned on creating a feedback page for you, where you could leave comments and ask questions. I planned on allowing you to sign up for automatic updates. I have a few close friends I need to tell about this still. I may get wasted tonight, still undecided. I have allowed myself some leniency throughout the holidays. New Years day is a holiday. Monday is not. January 2nd I am getting off my ass. I will do the research I need to do and complete the process with the PVA, VA, National ALS registry, and figure out what meds will be best before the experts make any suggestions. It is time to be a big boy again. Who knows I just may come up the damn cure myself. I have one huge advantage over every doctor, neurologist, nurse, ALS Researchers and scientists. I know what it feels like. In January I will let you know all of my symptoms, and why I believe this is connected to the traffic accident in 1990 and how I think this was caused. Have a happy New Year. Don't drink and drive. If you need a ride call a cab, call a friend, or call me.
Friday, December 16th, 2011
So this past week was busy for me. I had to have some dental work done. I can't explain how or why but shards of bone were sticking through my gums. I don't know what's up with that. The dentist removed it with tweezers. The first time I thought she pulled a piece of food from between my gum and the tooth. The second time around I realized I was wrong this is like bone, and it just poked through the gum way below where the tooth meets the gum. I don't care. I got bigger fish to fry. Just pull the friggen teeth will ya? I had 1 last appointment with Brevard Health Alliance. I kept the appointment just so I could say thank you and happy holidays to Bruce Simpkins ARNP. Bruce was the guy who said I think you may have MS or Parkinson's. After 22 years of agony he was the one who suggested "Disease" VS injury. Thank You Bruce for all you have done. I know if you could have helped me you would have. Better luck next time. Next I visited with a guy from the (PVA) Paralyzed Veterans of America. David was in a wheel chair, I asked if he was an ex Marine... Oops my bad. Now I know there are no Ex-Marines. David and I have little in common he has a spinal chord injury, I have a spinal chord disease. His prognosis is of course much better than mine. David gives new meaning to "Improvise, Adapt and Overcome". His hands wont fully open or close yet he can still write. David took a block of wood drilled a hole through it and wedged his pen in the hole. He can't hold the pen but he can hold the block. Improvise, Adapt and Overcome my friend you are an inspiration. David is helping me to get some benefits that I only qualify for because of the nature of my disease. Motor Neuron Disease MND is a blanket statement that covers several diseases. I think there are 6 of them but I am just guessing. PLS is similar to ALS. ALS however is a game changer when it comes to the Federal Government. I don't know what the hell they did to me or my fellow service men and women, but ALS has been classified as a service related illness since September of 2008. The Social Security Administration also recognizes ALS as 1 of only a handful of conditions that make Medicare automatic. I expect to not only receive Social Security Disability, but I expect a military retirement as well, complete with a pension which will be no less than a 30% disability. I doubt they will classify me as 100% to begin with but I am guessing it will be around 80%. So I guess that when the dust settles I should get maybe $400 a week or so between Social Security and my VA Benefits. Honestly? is that what my legs are worth? Is that the value you placed on my life? Some guy with a 7 digit income determined that $400 a month would make up for this. I don't care. Keep your damn money. I don't want it. I want to know what the hell you put in the Kool-Aide in the chow hall. Or was it some experimental fucking vaccine you gave me? You told us there was tear gas in that gas chamber we trained in. What the hell was it? Mustard Gas? Nerve Gas? We trained hard in the early 80s. It was the cold war, but we played for real. We used real weapons, we used real bombs, we had real Dog Fights with real A-10s and F-16s. Our M-16s and our 45s had real rounds in them. Was the Mustard Gas real? I worked in a building with better security than the White House. We had 12 foot thick walls. I repeat we had 12 foot thick walls. That building could have protected me from a direct hit of any type. I am not embellishing here. The walls were 12 foot thick. My mission was so damn important that I had better security than Obama, so It kind of pisses me off to think that I was part of some science project that went awry. I thought those walls were there to protect me. They were there to protect my mission, not to protect my life. Many men came home from the first Gulf War with ALS. The Bean Counters claim it was something in the Gulf that caused this. Bullshit! Why Isn't it called the Iraqi Disease? Where is the data on the enemy? If there is a link here, the link started back here in the good old USA. It started in Boot Camp. We got so many damn inoculations I felt like a pin cushion. I don't know what caused this, but Uncle Sam has owned up to something here. Somebody knows what did this to me. They aint talkin though. I would give up every damn dime and all of the benefits for an answer. An answer that will never come. When I took a vow to die for this country I thought it was a foreign government that I should have feared. I better shut this down or I am going to run out of anti-anxiety meds real soon. In the next life I will question authority. I hope the people on the next planet are nicer than the ones on this planet.
Monday, December 19th, 2011
This is gonna be a long day. It's gonna be a great day but a long one. In 9 hours Justin will arrive for the holidays. My anxiety has been high for the last 2 days. I think it's cause I am nervous of how he will see me. If I am sitting down I look just like the guy you all remember. When I am on my feet it's a whole different thing. My spasticity has been progressing, this really bums me out. Shopping and just being out in public is a little stressful. I feel like people think I am some kind of a half wit. Sometimes it's humorous to see the looks on their faces when I walk across the parking lot and get behind the wheel. I know what they are thinking. Retarded people can drive? I am very self conscious of using the courtesy electric shopping carts in Publix and Wal-Mart. I must admit when I see an overweight person in one I think to myself maybe you should get up and burn off a few calories fatso. How could I ever be so callous? Just cause she is 400 lbs doesn't mean she doesn't have a medical condition that put her in the chair. When I see a normal healthy looking person (That's Me) I want to say quit goofing around, or don't be so lazy you will wind up looking like fatso over there. I am ashamed that I felt that way. I am ashamed that I never gave a crap about the handicapped. I never have taken a handicap parking spot until I got the sticker, even now if I can do without it I will. There are people in worse shape than I. I can tell you a few things I have learned recently. First off there are not enough handicapped spots available. Most are too far from the door. Handicapped ramps exist because it's the law. While the law says you must have ramps they need to go further and specify how long and steep the ramp should be. I am still on my feet. A wheel chair may do okay on a steep ramp but a guy like me can't do a steep ramp. If the curb is 5 inches high and the ramp is only 2 or 3 feet long it wont work for me. It's too steep. Another problem is the location of some ramps. When the ramp is at the far end of a sidewalk I often just find a different store. Why can't the ramp be near the door? I know it sounds lame that I can't walk the extra 50 feet, but I am lame. I notice now when there is a car in a handicapped spot and they don't have a sticker. I always assume they needed it, maybe they are on their way to apply for the sticker. When I see a rednecks pickup truck with mudders and a 24 inch lift kit in my parking spot I just want to scream. I will keep my mouth shut, but it's hard for me to understand how a handicapped guy can get into a truck that was too high for me when I was healthy. I will give them the benefit of the doubt but I want someone to explain to me how a handicapped guy got in to a truck that is high enough to roll over top of your Spitfire without touching it. I'm just sayin. There are 3 places in this world I will not likely ever visit again. My friend Brian has 3 steps leading to his front door. No more Brians house for me. His house smells funny anyhow. My brother has a 3 story home in NJ which has steps at every entrance. It's a real nice house but I couldn't get in to his house with or without a wheelchair. Same goes for my Aunt and Uncles house in Staten Island. So with a Hoverround I can see the Grand Canyon, but I can't visit my brother.
Wednesday, December 21st, 2011
Oh my God!!! I just saw an article on the evening news. 25 years ago this lady swallowed an ink pen. Both her husband and her doctor DID NOT BELIEVE HER. Hey doc... you a**hole do you believe her now? they just removed a 25 year old pen from her stomach you idiot. Here is a link to it click here. This is just my point. If you have a problem and the doctor doesn't believe you grab that em effer by the throat and make him understand. She had a pen in her stomach for 25 years. This rings big loud bells in my ears. What if... I mean is it possible that if 22 years ago some doctor was willing to give me the benefit of the doubt maybe... just maybe I could take a walk around the block tonight. I can't hold any doctor responsible for my fate. I admit I was a bad example of a patient. I now know that I was not articulate enough back then to properly explain my symptoms. There were at least 15 doctors back then who missed this. The common link was me. I can't fault any of them. I would be willing to bet that if I had met Dr. Shepherd back then he may have figured it out. The guy is good, he's one of the best. Could it have made a difference? maybe... maybe not. Chances are if I would have known back then what the deal was the stress of living with the knowledge would have caused a much more rapid decline in my health. We will never know.
Friday, December 23rd, 2011
Oh what a difference a few months makes!
Yesterday I went with the Norrie family to the beach for the annual family photos. The first photo here shows the entire family except Penny and Justin. Penny is standing in front of her husband Glen who is on the far left, if you look close you can see her elbow. Justin is taking the picture. So I got in on the action this year. I got my photo taken with my boys and the 5 chosen ones. For safety reasons I am not showing the 3 youngest ones here and that's why I used a photo without faces. With the exception of the girl holding Jason's hand, this is one family. When I got home last night I found a package on the doorstep, a wonderful gift from Bert (My older brother). Included was some photos he took at my Aunt and Uncles 50th wedding anniversary party where a good time was had by all. Oh my God! I could not believe the difference in just a few short months.
The photo on the right was taken on April 16th 2011, I was feeling rather ill at that time. I was about 15 pounds heavier than the photo on the left taken on December 22nd, 2011. Only 8 months later.
Look again I am 15 pounds lighter today. In 8 months my hair turned grey and I lost 15 pounds. Did you figure out yet the point I am trying to make? While my face shows a significant weight gain and the full body shot shows the same I have lost weight. How can that be? Muscle atrophy! I have packed on weight in my face, my chest, my big fat belly and my cute little ass, but I have lost so much muscle mass that I am actually much lighter now. One day at the doctors office I got off the scale and said "Wow I lost 2 pounds". Not! I lost 12 pounds. I am almost at my optimal weight of 176, but you would never know it. Bands of muscle are missing from my arms and legs. Going to the gym would never help. The muscles wont get stronger because they are gone. The atrophy is far worse on my right side. I am right handed, if anything my right arm and leg should be larger. Total strangers have noticed that my right arm is skinnier. While they were getting their photos taken on the beach, some lady, a total stranger, asked "What the hell happened to you?" she was the second total stranger to ask that very same question yesterday. While my disease is progressing I believe it is progressing faster on my legs. I do take a bit of comfort in that. Okay it sucks, I know, but while it is a given that I will soon lose the use of my legs altogether, I will soon be a paraplegic. I am hoping to maintain some use of my arms and hands. Please God! Please let me keep my hands. Please let me keep my arms. Please.
The above photo is me with my older brother and older sister, Bert and Lisa.
Below is me with Baby Boy (Josh) Harris and his brother Jeremy.
Josh and Jeremy are the first of 5 kids that Penny adopted. And his name really is "Baby Boy Harris" as seen on Facebook. That's what happens if you forget to tell the nurses "Oh yeah we picked out a name today". Josh is too damn funny. A well meaning judge legally changed his name to "Josh". Josh used his first paycheck to legally change it back to "Baby Boy Harris" I call him BBH for short. Josh is the younger, taller one on my right. Jeremy is a very talented gymnast and break dancer who has toured with Fighting Gravity the 3rd place winners of "America's got Talent 2010". He has also auditioned for and been accepted by Cirque Du Soleil though he has not yet performed with them.
Friday, December 30th, 2011
Geez Louise can we please end this **** year already?
So yesterday was another long one. Yesterday was a good day and I felt almost as good as the day before. I met my new doctor. I never had a female doctor before. Her name is Dr. Lopez. I will always remember 1990 as the year that Barbara Conn rear-ended me. I wonder if my doctor will remember 1990 as the year she graduated the 5th grade. I like her, she spent more time with me than any doctor ever made me sit in the waiting room. This was by far the most time any doctor ever gave me! We spent about 2 and half hours together with the head nurse of the Spinal Chord Injury Unit. I like Nurse Angela as well. I walked in to the room and said to this beautiful young lady (Not that this matters) Are you Doctor Lopez? She said yes. I invited her to my birthday party, I invited Nurse Angela to my birthday party as well, my 60th birthday party. They both accepted and I assured them I would hold them to it. Dr. Lopez did some of the tests that Dr Shepherd did just 59 days ago. She ran her finger nail across the bottom of my right foot, just like when Dr. Shepherd did it, I didn't feel much, there was no tickle. As she went to run her fingernail across my left foot I said "you're gonna see a big difference now". Oh crap! she couldn't tickle the left foot as Dr. Shepherd did just 59 days ago. This is bad. I am sure she knows that ALS is a game changer with the VA. I told her that ALS now makes Medicare automatic and I applied so I could get a wheel chair from them. She assured me that It would be best to get it from the VA, because they will handle any upgrades and repairs as necessary, where Medicare wont. My thought was this. When the VA gave me my walker they wheeled it out and handed it to me, no picking and choosing. They gave me a nice one, it's the nicest one I have ever seen, but if I went out to buy one it would have had a padded seat. Several companies with numerous models of wheel chairs and scooters advertise on the TV saying if we pre-approve you and Medicare denies it, we'll give it to you free! It wasn't the free remark that I liked, it was the fact that I could shop around and pick and choose. I don't want to start with a wheel chair. I think a scooter would be much cooler and may have a basket for shopping. The wheel chair screams out I am handicapped and the scooter shouts out "hey ladies". You didn't think a silly little thing like ALS was gonna keep me from trying, did you? Anyhow Dr. Lopez stated that we would work with the technicians and several wheel chair vendors to "come up with a good match". I have already done a little shopping around, I know how and why a scooter may be right for one guy, and the next guy needs a wheelchair. I already know that I will need a wheelchair at some point. I already know that I will need the joystick. I already know that sooner or later every muscle below my neck is going to die. I have tears in my eyes as I type this. I want to start with a scooter. Saying that just now made me more emotional than I have been since Thanksgiving. Dr. Lopez gave me some stronger meds today, I am about to take a few. I had alot to say. I was about to tell you how I have allowed myself to relax all through the holidays. This time of year has always been the most depressing time of the year for me. I have armed myself with enough pills along side my bed to get me through it. I was about to tell you that January starts a new year, a new page for this site, and a new attitude. I have let everything go. I still have not given my official diagnosis to the PVA. I really have not Googled anything regarding my disease since Sunday November 20th, the day I told Penny this is gonna be bad, really really bad. I Googled all I could about Lou Gehrig, the man, the powerhouse Yankee first baseman but not his disease. I watched "The Pride of the Yankees". I did have a link here for you to watch it but, HULU took it down. I had Xannax and Capt. Morgans on hand in-case it made me too sad. Boy was I surprised. First off I didn't know that Babe Ruth and several other Yankee greats portrayed themselves. Twenty minutes into it I hit pause and Googled up a little history. I could see that Hollywood was putting a little spin on it for dramatization. I wanted to know how long he played for the Yankees before he first had symptoms, How much time elapsed between his first symptoms and his diagnosis, How long did he survive. How accurate is this movie. Well I'll be. I learned so much more. It's not called Lou Gehrig's Disease because some famous guy got it. It's because he was one hell of a ball player. He went to college on a football scholarship. He had a rivalry with the greatest homerun hitter and most colorful ball player in history, The Babe. Lou Gehrig was the number 2 hitter period. He lived in the shadows of Babe Ruth. Later in his career he lived in the shadow of another superstar, Joe Dimaggio. Lou Gehrig held so many records. He was called "The Iron Horse" He held the record for the most consecutive games, 2,130 games in a row. This record would not be broken until Cal Ripken Jr. achieved 2,131 games in 1995. I enjoyed the movie. It was about the man and his career, it ended with his retirement speech. I don't think they even said the name of the disease. His wife said "I'll bet it's a real long name and nobody could pronounce it." We didn't have to see him suffering and deteriorating. I still drank the Morgans though. Why not? Talking about the joystick put tears in my eyes, I'm glad I spoke of Lou Gehrig here. It got me off the ledge, but I am having real bad symptoms right now. So far I have not mentioned much of my symptoms. Right now my neck is cramping painful bad, and I feel like I have a thousand ants crawling all over my body. Yes this is normal for me, right now it is real bad, and it's 3:45 AM. I wanted to tell you how January was gonna be different and why, but instead I am going to swallow a handful of pills and pass out. I'll get back to it when I wake up. Good Night.
6:00 PM
Okay I'm up, I'm up. I was in bad shape at 3:45 AM. It wasn't talking about The all time Grand Slam Leader. (He still holds that record) Alex Rodriguez, another Yank go figure, is just one big hit away from tying it. Come on A-Rod show us number 23. Not that I think it matters but in the 1930s there was no asterisks. It didn't saddened me so much about the wheel chair VS scooter dilemma (Maybe a little). It was because I got to thinking about how Dr. Lopez could not tickle my left foot. I tried over and over to do it myself, no such luck, this illustrated to me that maybe things are happening faster than I thought. I took more sedatives this morning than ever, and still I was a wreck at 5:00 AM. By 6:00 AM I was smashing my head into my pillows. At 7:00 AM I took more pills, and again at 8. I think I passed out by 8:30, and that was my plan. Please don't go there! I know exactly what you are thinking. Please don't lecture me about drug abuse, what's it gonna do kill me? I still have a sense of humor, which has always been odd. My brothers could always make people laugh. My sense of humor has always gotten raised eyebrows. When I say "what's it gonna do kill me?" that is my sense of humor. I believe that a person must have some special gene, or some mental anomaly to be able to commit suicide, whatever it is, I don't have it. In November I was given an antidepressant called Trazodone. I asked for anti-anxiety meds over and over, but they would only give me antidepressants. I had a bad reaction to the Trazodone. It was a nightmare, I was the star and the audience to my very own horror show on November 16th. If I had the gene or the anomaly it would have been game over that night. I had pleaded for Xannax or Ativan for anxiety. I purchased some of both illegally but I was afraid to add anything to whatever medication malfunction I was having, so I suffered through it. BHA Brevard Health Alliance was not taking this serious, but I was a wreck. I never wanted Paxil or any other antidepressant, my problem was anxiety that would turn into complete mental breakdowns. The next day November 17th I walked into the VA clinic for the first time ever. Please friggen help me! I don't know if I qualify for any benefits but if I do I need you now! I have been having so much damn anxiety that I want to slam a screwdriver in my ear. Oh I am an idiot! Here is some practical advice. Don't ever say that in the presence of a cop or a doctor. OMG! They took it serious. I cant put a friggen Q-tip in my ear, let alone a Phillips Head. I was merely trying to explain how desperate I am. The Doctor, a PA actually says well we can't do that in this department but if you would like we can refer you to mental health where they can prescribe something for you. OMG! how long will it take to get an appointment with Mental Health? Keep in mind I just walked in off the street with serious back pain and in the middle of a mental breakdown. I was in the Mental Health Department 30 seconds later facing a doctor who says "So Mr. Berger I understand you are suicidal". What the hell are you talking about? I asked. I told you earlier that 22 years ago I was not articulate enough to explain my symptoms to the doctors. You may be thinking that I seem to be very articulate. On paper? sure. I have always allowed my motorboat mouth to run off with my row boat ass. I have 1 button on this keyboard where the ink has worn off, the backspace button. So what comes out of my clumsy trembling fingers fairly well has never come off my tongue as planned. I got arrested once and only once, though I committed no crime. All I did was date a real cute girl who never mentioned she had a boyfriend, she never said "He's a cop". Was I supposed to be intimidated when a Palm Bay cop approached me in Melbourne which was out of his jurisdiction? Should I say okay no problem when he said stay away from my girl? Yes I wish I had. But I got Motorboat Mouth and he is out of his jurisdiction. Soon I would find myself in his jurisdiction, I was surrounded by about 12 cops and guess who put me in hand cuffs for "Resisting Arrest". If a cop says "Put your hands on your head" It is illegal to take a half of a step backwards and say "You can't arrest me". This was the one and only time in my life where any human being heard me sing. While in the pokey I re-enacted the scene of Eddie Murphy singing "Roxanne" My voice was loud and proud and echoed all throughout the jail house. They later transferred me to Sharpes (County Jail) where yet again my motorboat mouth would cause me more problems, I am too cute for jail. Fortunately I heard my name with a question mark after it. My friend Andy was calling out my name acting like he didn't know me. I picked up on what he was doing right off the bat. I knew he worked at the jail, I had no clue what he did there. The look in his eyes said don't let anybody know that we are buds. Turns out he is the guy who determines if I can be released without bond, or a bond hearing. Thanks Andy. So Even Nurse Angela kept telling me be careful what you say. In the presence of a doctor it doesn't matter how you say it. It really is what you say. They don't hear emphasis or laughter, they don't see the wink, they don't hear that telling giggle. They hear "Screwdriver in ear". I have to go all through this with a doctor and explain how I don't have the gene, I will not and cannot hurt myself or anybody else. I explain I am very ill I need Xannax not a straight jacket. It took a while to gain the confidence of this doctor, but I did. She says "Look at my position. You have never been here before. This is your first time ever in the clinic. I can see you are ill, but put yourself in my shoes you just walked in off the street. We have never met, You are asking me for pain pills and Xannax." She writes out a prescription for Trazodone. Trazodone? Are you friggen nuts? That's the crap I ate last night. Mark me down as being deathly allergic to that crap! Please, Please I have been asking for "ANTI-ANXIETY MEDS" for the past 10 weeks. Please! Now I fully understand they can't hand out Xannax or any controlled substance to some stranger who just stumbles through the door saying I think I may have MS so please give me pain pills and Xannax. I get it. Thank You Dr. Hockman. I was given Buspirone, generic for Buspar, which is not a narcotic. This was not the answer but it did get me through a rough patch. That info page where they list side effects and uses, I file it away I quit reading that crap. If a side effect is a heavy flow I'll wind having my first period. I later discovered it said this. Uses "This medication is used to treat anxiety. It may help you think more clearly.... Yada yada yada" Bert told me to quit reading that crap and I did. This stuff helped alot, I still have alot of Xannax on hand for emergencies only. I swear up till this day I may have had 5 of them in forever. The Buspar made my moods extreme. When I was mad I was super pissed for no reason, when I was sad I was real sad. When I was happy I was real happy. For the first time since July I laughed, watching TV. I laughed out loud. I will accept the extreme anger and sadness, just let the laughter continue. Laughter has not been heard in this house for far to long. It is November 17th, this date is significant, here is why. Remember it said "...may help you think more clearly" I took it twice a day, the second dose at bedtime, it allowed me to finally get at least a little sleep. 2 days later the laughter ended. On November 19th after my bedtime dose I laid down in bed. My thoughts were now clear for the first time in months. as I was dozing off my whole body spasmed. This is not a disease type spasm. This was an OMG! Spasm. I sat up bolt right, I looked around the room. For 2 and half months I Googled every one of my Symptoms, I Google every Disease I could find. I had 2 computers and 3 monitors going 24/7. One monitor was opened up to a dictionary, another used to Google medical terms. I told you I was good at research. I was going to Universities, and other websites used by the medical industry, not truck drivers. It's 3:00 AM, November 20th. The final 2 puzzle pieces just fell into place. I was definitely in denial still. I stared at my computers with 3 different screensavers going. I am scared shitless! Excuse my French. That word... the really long one... it began with the letter "A". It came up in a Google search more than a week ago. "Is that what it said? Did it really say it does not affect the involuntary muscles? This can't be. That had something to do with Lou Gehrigs Disease which I know is fatal. I know damn well I don't have Lou Gehrigs Disease because he went crazy. Didn't he? I saw the movie he was climbing the backstop screaming at the crowd. He went nuts, I am not going nuts I'm losing the use of my legs". I saw the movie decades ago, I remember him going crazy, It took me more than 15 minutes of staring at 3 flashing monitors all with the screensavers going before I got the courage and strength to sit at my desk. I have 2 note books full of notes. I wrote that god forsaken word down somewhere. What was it? Amyotrophic Lateral Sclerosis Referred to in the US and Canada as Lou Gehrigs Disease. There it is ALS causes muscle atrophy right at the top of the page. 2 or 3 lines below ALS is a motor neuron Disease which only affects voluntary muscles not the involuntary. Get the F*** outta here! What time is it? I need answers, I need them and I need them now. It's now 3:30 in the morning. I need to call Sam. If I were ever gonna be on the hit TV show "Who Wants to be Millionaire" This guy is gonna be on my Phone a Friend List. Sam is a movie trivia master. I shut down both computers, I am still in denial. I laid back down in Bed. I know he went crazy! I know he did. Sam will know, Sam will know every actor in the movie, he will know the year it came out, he will know the movie plot and how it ended. Sam is going to tell me facts and other nonsense I don't care about. I am freaking out, because I know that the 2 puzzle pieces I could not account for with any other theory was first off muscle loss, MS is an almost perfect match. MS might cause muscle weakness in some cases but I can't find one damn resource that claims it causes muscle loss. The other missing puzzle piece is my heart, it's a muscle. I now see how this crap can twist every muscle, cause me pain and agony for decades, make me the but of many jokes yet never trigger a heart attack. So I may have something similar to Lou Gerhigs Disease but mine isn't driving me crazy, I'll bet I am getting closer to solving this. I'll bet mine has a cure. What time is it? Crap it's only 3:36 AM. I can't call Sam this early. He is an early riser but I can't call him now. I have enough of my new meds, the Buspar in me to put me to sleep. I didn't know it then but it will be about 3 days before I sleep again, and the laughter has ended after just 2 days. I made breakfast, I played with the cat, and went back to bed. Are you friggen kidding me? It's only 4:45 AM. I turned on the TV, MWC comes on at 5. I watched TV, I tossed and turned. at 6:59 I called Sam. "Sam in the Lou Gerihg story, the movie about Lou Gerihg Didn't he..." He cuts me off. "It wasn't called the lou Gehrig Story. It was The Pride of the Yankees, it starred Gary Cooper and came out in 1940 something shortly after...." I asked him to please shut up! I asked what happened to Lou Gehrig? Sam says he had some weird muscle disease that killed him. I said "He went crazy. Right?" He assured me that Lou Gerihg did not go crazy, at least not in the movie. I asked about the scene where he jumped on the backstop and started screaming at crowd. Sam You broke my heart, I cried right after we hung up. Sam said "You got your movies mixed up. That was Anthony Perkins in Fear Strikes out, about Jimmy Piersall who was Bi-Polar. The Movie came out in 1957 or 1958 it was directed by...." Please shut up! I asked him again if he was sure. I knew he was, Sam is the movie trivia master. I am sure he asked why I needed to know this at 7:00 AM. I have no clue what I said. I am in a panic, I fired up the computers again. I am researching atrophy, Nerve conduction, paresthesias, Electromyogram, myasthenia gravis, peripheral neuropathy, Myelin, Amyotrphic and whole bunch of other words that I have not a clue as to their meanings. But I am learning. I Googled Lou Gerihgs Disease, I Googled Amytrophic Lateral Sclerosis. I learned that it only affects 1 or 2 people in one hundred thousand depending on who you believe. I learned that I hit the friggen lottery on disease. I now know it, I am positive. I am so sure of this that I am willing to take whatever medication they prescribe for it right then and there. I looked that up as well. There is only 1, count em one drug which has been FDA approved. It's called Rilutek. This is no great white hope, this is no cure. While you will find web sites that claim it can slow down or stop the progression and in some rare circumstances reverse the effects of ALS, I don't believe it. I have not seen this from any truly reputable source. The manufactures make no such claim that I know of. The manufacturers claim that in clinical studies the patients who got the real drug and not the placebo went an average of 4 months longer before needing a ventilator. This is my fate. Please keep in mind I quit Googling anything at all related to ALS right then and there. It may be true that Rilutek can reverse my symptoms, or extend my life by 20 years. I couldn't handle anymore bad news. I still to this day have not. That day was November 20th, the day I told Penny. The day we discussed how to handle this. I showed her just enough to where she knew I was right. The following morning I confronted Dr Shepherd. He said yes he suspects ALS but we have 1 more thing to rule out. I was informed that this probably would be the worst possible diagnosis, it may also be the best. This could be caused by a Chore Compression Between C4 and C5, I know you already know it but just incase C4 and C5 are vertebrae in the neck. This is right at the point where my symptoms are cutoff. I have no spasms or fasciculation's above this area. Every bit of my disease is limited to below this spot. I asked only 1 more question, I asked if a chore compression could account for the atrophy. He stated there could be a small amount of atrophy associated with it, I said I was concerned that I had alot of atrophy. He said "I am also" I never mentioned the heart. I knew the deal, I knew for sure that if this was caused by a chore compression I would have had a heart attack years ago. This set my mind at ease. You might have to be in my shoes to understand this, but my mind was at ease. I considered going off all my meds. I was positive that I had ALS. I am positive it is not the MS I was hoping for. How can I be all of a sudden at ease when I just learned that I am going to die a horrible death at a very young age? It's simple You can't give me any worse news. Dr. Shepherd armed me with an awesome tool, He didn't know it, but just telling me that there was a glimmer of hope, hope that I knew was bullshit was going to make this much easier. Oh hell yes! I can prepare my family for this, I can prepare my friends for this. Penny and I discussed this. I know damn well that if I keep my mouth shut, on December 12th I will have my official diagnosis and now 2 weeks before Christmas I have to tell my kids I have a terminal disease. We can use what we both know is BS to soften the blow. I notified my 2 sons, my 2 brothers, and my sister on that very day. I told them what I suspected and all about my unscheduled office visit with Dr. Shepherd that day. I told them there is no middle ground here. This is going to be ALS or something that can be surgically corrected. There will be no middle ground. I let them all know it was only a small chance that this is fixable. I said "I doubt it's like a 1 in 10 chance that a chore compression is causing this, It's probably more like 1 in a hundred, but even if there is only a one in one thousand, or ten thousand chance of it, that's still better odds than me having Lou Gerihgs Disease. That's one in one hundred thousand". We all held out hope, I kept my game face on. I let them all know this is probably bad but there is hope. I think my approach to informing my family helped my sons get used to the idea of ALS a little at a time. Another great concern I had and still do is my brother, he took the loss of our mother 9 years ago very hard. After having my diagnosis in hand, after Social Security Said Yep you are disabled, after not 1, but 2 different doctors confirmed the worst, my brother still wasn't buying it. I have not made any decisions by myself about any of this. I have some great support and guidance from my ex wife, my 2 sons, my sister and a few friends who are no strangers to tragedy. While I did not publish this site until December 12th, I had the diagnosis on December 2nd. The nerve conductivity test and EMG Elecromyography test was done by Dr. Packy. Now I didn't care that he lacked some professionalism, but the man was reckless. My son Jason was with me. Dr. Packey knew that I was aware why he was doing these tests, and so was Jason. The EMG is also know as the pin test. they literally jammed this needle into about 80 different muscle and view it on an oscilloscope (only big word on this site that I knew prior to this past summer). Each time he would say "I'm gonna call that a CDR" The technician would confirm that he agrees. After 79 pokes between both legs and 1 arm he says "lets stick it in his throat". I thought he was joking. NOT! Yikes! that sucked. When he removed the needle he said "Well, there's only one thing that will cause that". I asked "What?". He said right in front of my poor son "ALS" I kept my family and only a few very close friends advised. I go straight back to the VA because this is way beyond anything that BHA can help with. I am begging for sedatives, I need your biggest baddest pill to knock my ass out at times. I told them all along if they won't give it to me I will get them from the kid on the side of the 7/11 store, and I did. If there is one time in your life that you absolutely positively must tell the truth it's when the paramedic says "What did you take?" I am going 1 or 2 steps further and letting every doctor and every nurse know all about every damn drug I take, regardless if it was prescribed or legal. For the sixth time the VA turned me down. The Buspar helped alot. Buspar is not a controlled substance, and I need to kick it up a notch. Once again they turn me away. I am saying please I was just told I have ALS. You got that in writing? they asked. I was so pissed. I stormed out of there as fast as I can, which aint real fast. Half way to the door I stop and sit down on my walker. I am having a hissy fit. I fold my arms and look around the Gemini Section of the VA clinic, who's office am I gonna kick down the door of and complain? I look to my right, I look to my left and 6 inches from my face is a poster on a door that says "Are you paralyzed? Do you have a spinal chord disease? if so there may be special benefits available to you". I found my door. I go inside and speak to a kid, I mean he looks like he is 17 years old. When I said I have ALS he says sit down and closes the door. He let's me know that ALS is considered a service related disease and it doesn't matter when or where I served, it doesn't matter when my symptoms began, they will take care of me. They still wont give me stronger meds, I am still buying Xannax on the street and being honest with them about it. On December 12th I brought them the official diagnosis in writing, they change my primary care doctor from a general practitioner to a spinal chord specialist, Dr. Lopez. Finally we can engage in a rational conversation about pain management, and anti-anxiety drugs, real ones. If I ask for Quaaludes, I just might get them. What's it gonna do kill me? I sat back down at this computer at 6:00 PM just like it says. It is now 1:30 AM and my neck is cramping again. I have been trying to make a point all this time, I want to make it now and finish Decembers Blog. Stress and anxiety have ruled my life since August when I realized I had a disease. The holidays depress me on a good year. I have avoided all of my responsibilities regarding my disease. I have benefits I must apply for, I have paperwork I need to complete. I have phone calls to make and people to see. I blew it all off, every bit of it. I planned on creating a feedback page for you, where you could leave comments and ask questions. I planned on allowing you to sign up for automatic updates. I have a few close friends I need to tell about this still. I may get wasted tonight, still undecided. I have allowed myself some leniency throughout the holidays. New Years day is a holiday. Monday is not. January 2nd I am getting off my ass. I will do the research I need to do and complete the process with the PVA, VA, National ALS registry, and figure out what meds will be best before the experts make any suggestions. It is time to be a big boy again. Who knows I just may come up the damn cure myself. I have one huge advantage over every doctor, neurologist, nurse, ALS Researchers and scientists. I know what it feels like. In January I will let you know all of my symptoms, and why I believe this is connected to the traffic accident in 1990 and how I think this was caused. Have a happy New Year. Don't drink and drive. If you need a ride call a cab, call a friend, or call me.