BEYOND INTELLECT

GREETINGS TO ALL MY FRIENDS AND FELLOW HUMANS FINDING OUR WAY ON THIS WORLD:

∞I HAVE A TERMINAL DISEASE CALLED MULTIPLE SYSTEM ATROPHY, (SEE BELOW). IT IS A TERMINAL ILLNESS THAT DOCTORS GIVE PATIENTS 3-10 YEARS OF LIFE. I AM IN YEAR 12 AND STILL FIGHTING THANKS TO YOU ALL, (THAT'S MY SOUTHERN DRAWL) . MY DISEASE HAS JUST RECENTLY STARTED TAKING OVER ANOTHER CRUCIAL BODILY FUNCTION WHICH PUTS ME AT A MUCH MORE DANGEROUS SITUATION AS THIS FUNCTION HAS A DIRECT CORRELATION TO MY GETTING PNEUMONIA AS I'VE HAD IT TWICE THESE PAST TWO MONTHS. PNEUMONIA IS A VERY COMMON AND SUPER DANGEROUS ILLNESS WITH MY MSA. PEOPLE WHO I'M, OR WAS IN TOUCH SUFFERING WITH MSA HAD A CATASTROPHIC EVENT HAPPEN AND GOD SAW IT FIT TO TAKE THEM. 

I HAVE ALREADY BEEN GOING LONGER THAN MOST DOCTOR'S PROGNOSES OF MSA AND PLAN WITH YOU HELP, GOD WILLING, TO CONTINUE FIGHTING THIS ILLNESS AND BEING PRODUCTIVE. WE WERE IN THE MIDST OF MAKING MY MODEST HOME INTO A "BEIT MIDRASH/SHUL (A PLACE OF LEARNING AND STUDYING, AS WELL AS SERVICES AT LEAST IN THE AFTERNOON, BUT COVID HAS KEPT US ON THE ROCKS. GOD WILLING FOR ALL OF US, WE'LL BE ABLE TO SLOWLY START OPENING SPACES LIKE THIS TO SMALL, MASKED GROUPS, THAT WILL KEEP GROWING AS THE SANCTIONS GO BYE BYE WITH COVID.

I HAVE PROPOSED A DEAL WITH HASHEM (GOD...OR "THE NAME" OR "SHEM'S GOD"...SHEM BEING THE RIGHTEOUS SON OF NOAH. MY DEAL IS TO KEEP ME GOING SO I MAY FULFILL ALL I AM NEEDED FOR IN THIS "GO-AROUND" ON THIS WORLD. (IN KABBALAH, OUR WORLD IS CALLED "ASIYAH", THE WORLD OF "ACTION".) ALSO WITHIN THIT 'HEAVENLY DEAL', I GET TO HOLD MY GRANDCHILDREN AND MAYBE GREAT GRANCHILDREN!

I DO HAVE DAYS ON WHICH I MUST REST AND RECHARGE, USUALLY ONCE A WEEK. BUT I DO HAVE BEAUTIFUL HUMANS BACKING ME UP.

THE ASKING FOR TZEDAKA/CHARITY/DONATIONS STILL MAKES ME UNCOMFORTABLE BUT THIS CAMPAIGN AND MY DONORS HAVE TRULY KEPT ME IN THIS BALL-GAME. (ALWAYS MUST HAVE SPORT ANALOGIES). JUST CO-PAYS, BILLS FOR PROCEDURES WHICH MY INSURANCE DOESN'T COME NEAR TO COMPLETELY TAKING CARE OF (MANY OF THESE ARE QUITE GREEDY FOR THEY ALREADY GOT PAID THOUSANDS FROM INSURANCE. PLUS, DOCTORS WILL NOT SEE ME UNTIL I PAY OFF MY BILLS...EVEN IF, AS HAPPENED SOME WEEKS AGO, I WIND UP HOSPITALIZED AND THE DOCTORS IN THE HOSPITAL FEEL IT'S CRUCIAL FOR ME TO SEE MY SPECIALIST WHEN I GET OUT, I GET SHUD DOWN. WHAT A BEAUTIFUL CARING SYSTEM! (SORRY FOR SARCASM, IF DE-FANGS ANGER WHICH AS IS SAID, "ANGER IS THE DUBIOUS LUXURY OF OTHER PEOPLE BUT NOT FOR ME."

FINALLY FOR NOW, I'VE MENTIONED TO SOME OF YOU THAT I FOUND A WONDERFUL "SINGER-SONGWRITER" WHO EVERYONE PROBABLY ALREADY KNOWS, SEAN ROWE. MR. ROWE HAS AN AMAZING SONG THAT HAS BECOME ON OF MY ANTHEMS, "TO LEAVE SOMETHING BEHIND." THAT I MUST DO. 3 SEPARATE PROJECTS. THAT SONG AMONG OTHER ENERGIES, PROVOKED ME TO WRITE THE FIRST SONG I'VE WRITTEN IN 37 YEARS. MY BAND 'THE HOWL' (THANK YOU ALLEN G. O.B.M. MY BRILLIANT POPPA WAS BEST FRIENDS WITH LOUIS GINSBERG, ALLEN'S FATHER), USED TO PLAY ALL OVER THE MANY GREAT VENUES IN NYC IN THE LATE SEVENTIES/EARLY EIGHTIES. WE WERE JUST ABOUT TO GET SIGNED BY RCA AT THE TIME (THEY HAD BOWIE ETC. ETC.) WHEN MY PARTNER IN THE BAND AND INSANELY TALENTED LEAD GUITAR PLAYER SUDDENLY DIED. BOOM. NO-ONE KNEW WHAT HIT US. THEN THE VILLAGE VOICE FINALLY CAME OUT WITH THEIR FIRST AIDS COVER...AND THERE IS WAS. I LOST MANY FRIENDS AND ASSOCIATES AS WE ALL DID BACK THEN.

I WISH THE MEDICAL PROFESSION COULD BE MORE AGGRESSIVE WITH MSA, BUT I GUESS ITS TOO RARE TO BE A FINANCIAL ENGINE. THEREFORE WE WHO HAVE THIS FATAL DISEASE ARE CAN ONLY BE TREATED SYMPTOMATICALLY...MEANING THE G.I. PERSON GIVES ME THIS, THE PULMONOLOGIST GIVES ME THAT, ETC. ETC. BUT THANK GOD MY GP AND MY OTHER BRITISH ANGEL, SPECIALIZING IN RARE AND INFECTUOUS DISEASES (MSA IS NOT INFECTUOUS), HELP ME WADE THROUGH WHAT COULD WORK AS A MEDICINE FOR ME AND WHAT WOULD OR COULD CAUSE A TERRIBLE REACTION. (HAPPENED TO ME AROUND 6 OR 7 YEARS AGO AND I WAS INSANE AND INSANELY SICK BEHIND A MIXTURE OF MEDS. WHICH SCARED ME AND EVERYONE ELSE. I AM MUCH MUCH MORE DISCERNING AFTER THAT AND THANK GOD NOTHING LIKE THAT HAS HAPPENED AGAIN.  

SO PLEASE KEEP CHECKING IF WE FINALLY GET THIS ACCOUNT TO ACCEPT DONATIONS AGAIN. I'LL ALSO MAKE AN ANNOUNCEMENT. BUT YOU CAN SEND ME EMAILS STILL TO CHECK IN AND SAY HI.  HI!

WITH A LOT OF LOVE FOR ALL

R. MOSHE

The disease I have is rare (lucky me), and called Multiple System Atrophy (MSA), or Shy Drager syndrome. MSA is a progressive illness with no known cure and leads to death within 3-10 years from diagnosis. (I am in year 8). THERE IS NO KNOWN CURE FOR MSA.

DESCRIPTION OF MSA FROM THE MAYO CLINIC AND NATIONAL INSTITUTE OF HEALTH:

Multiple system atrophy (MSA) is a rare, degenerative neurological disorder affecting your body's involuntary (autonomic) functions. This includes blood pressure, breathing, swallowing, profuse sweating, narcolepsy,

loss of bladder function, muscle control and intense pain throughout the nervous system. 

My balance has become so bad I have trouble in a wheelchair or walker.

My body is shutting down.  

My soul wants to stay engaged in Life

Just my medical bills alone are overflowing out of TWO file boxes and in the tens of thousands.

I AM IN VERY TOUGH STRAITS AND I PRAY THERE ARE PEOPLE READING THIS.

I NEED MONEY (in case you didn't know). I am terribly embarrassed to be going around hat in hand.

Again, LIFE EXPECTANCY - 3 to 10 years. Being now in year 12, I have to keep up the fight with all your help!f

                         ****************

I was just released from the Hospital here in Upstate N.Y. for pneumonia. The pneumonia I recovered from, was caused by aspirating food, drink or saliva into my lungs. This is because as noted above MSA patients cannot swallow properly.  

Pneumonia is ranked the common mitigating factor that causes death in MSA patients. 

ME

I have been a very high functioning athlete my whole life. NCAA Lacrosse champion, marathoner, triathlete, etc. 8 years ago, I went out for a short run and I couldn't make it half a block. My legs were like rubber and I couldn't breathe. It only got worse.

I was getting sicker and sicker. I found myself going to doctors, each one saying I had a different malady. (in a sense they were correct). I wound up in hospitals for extended stays, I was given every scan, blood test, medicine, yet nothing worked. My body was literally falling apart on me.

And my brain. Much of my life I was a Hollywood writer and filmmaker.  The last film I made I would get into a "hypnogogic" state which is dreaming while still being semi awake. I was nodding off in the editing room and saying nonsensical things. I'd come to, and everyone would be staring at me. It happens more often than not when I'm by myself writing. 

I passed out when I was driving home after one long afternoon of editing. I fell sound asleep at the wheel and I Thank G-d I totaled my car on a tree, not on anyone else. I also escaped relatively unscathed. I was now told I had narcolepsy. It is a terrible condition.

After a year of this, and my health totally declining (I'm a Rabbi as well, and I could not even run any services), I finally received the diagnosis at the Lahey Clinic in Boston. The head neurologist showed me a C-scan of my brain and it was clear that I was losing the liquid surrounding the brain and the brain itself was getting crennelated. 

The head of Neurology told me I had Multiple System Atrophy. Since then I've had the head neurologists from all the major Hospitals and private appointments verify the diagnosis.

Beyond these medical protocols...I am very aware that my mind and body are suffering and out of control. I won't get into details here but imagine all your autonomic functions like breathing, going to the rest room a bit too late and changing your sleep wear, intense pain from my head down to my numb right foot. And so on....

Most people with MSA at this stage get into bed and don't get up. Staying in bed would feel great but I have to fight against that one word "Atrophy". Or..."Use it or lose it!" But as I said, I am going to fight this thingI One Day At a Time.