NEVER GIVE UP!

When I was 8, I wanted to learn how to yo-yo then I gave up to think it was too hard.

Well 28 years later baptized since 1989 and for the past 2 years been listening to meetings at home with my 2 children. With epilepsy and being mentally ill, it can take a toll when you sleep thinking of that proud moment in your life when to dedicate your life to Jehovah it happens so fast. you think it to be the most happiest of times, only to go back to the convention with everyone around you looks different like you are watching t.v.. It seems the world is going crazy, but you know it is only you and the other ones in your mind trying to make you go insane at the meeting. you run to the bathroom and see all look sideways. Finally after enduring it you go home to sleep hoping this feeling will go away. I am also shizeffective which is having bipolar and schizophrenic. People consider in general that we are crazy, but we are not. Every person is different like the voices I hear are like watching television. when it is sad you are sad so on...... When I go to a meeting, when I am doing good that day, I am so happy to see my brothers and sisters that I get real happy which puts me at manic. Some have told me to calm down or I need to work on this, but I am just overly happy and I am usually respect others, but

Others need to know it hurts when you tell me that I should work on my illness.
It is like telling a blind man to help himself.

I went to buy my boy his new suits while I waited in line at a restaurant to get them
a bite to eat I see over at the table are brothers and sisters getting up to go
back in the ministry. Then a girl in front had her yo-yo and I calmly watch her
and at the same time wanting to be out in the ministry.

When I came home I had found a yo-yo of my boy and as I remembered how she did it I did the same. It took me 20 years after I gave that up, thinking if I could do this with a simple toy, maybe one day I will be back in the ministry as the others are. For when Jehovah comes back we will have forever!

Leslie Sweatt
desinlorraine@webtv.net
5/99

I WANTED MY LIFE TO END!

Turning to Jehovah during the trials we go thru is one of our greatest blessings... To have a relationship with Jehovah is mind boggling... But he does help a great deal. And to see some of the problems others have make me realize my problems are nothing compared to theirs. ONE OF THE GREATEST PROBLEMS IS DEPRESSION and it is a tool that Satan uses effectively on us..

I will give you a experience. I have had recently when I felt my lowest... I felt such despair and hopelessness that I REALLY WANTED TO HAVE MY LIFE END. I was diagnosed, again, with cancer and just couldn't take anymore bad news as well as feeling I had lost a valuable friendship. I just could not stop the agonizing tears of feeling so rejected. But I kept on praying to Jehovah for help. I could not end my life myself because of the sanctity of life that Jehovah had instilled in me... I could not throw that privilege away, but I was praying deeply that the cancer diagnosis would be right so that my life could end... to keep going on was just much to hard to bear. In answer to my prayer Jehovah sent me an immediate answer.

A sister called me within minutes of my prayer to ask me to do some research for her. It seems that a neighbor's s son had just committed suicide and she wanted me to do some research on suicide so she could give it to her neighbor. In their religion it was looked upon as a sin to commit suicide.

Well, of course, I complied for I love helping others, and I did the research. I not only researched it but I also read the articles myself again and applied them to myself. So, because of rereading the information, I felt such a weight lift off me that the release was outstanding... I know Jehovah sent this sister to me in my time of real need.

As for the cancer diagnosis, it is in a waiting stage and I have to go back in March for a repeat of the tests to see where I stand... The Dr. can not say that I do not have a cancerous growth so we have to watch it and keep it in check.. the tests were a mammogram where the growth is and pap smear where my body is in the process of swelling and so I have to just wait and see which way it is going to go.

Yes, I still suffer from depression but keep reading and thinking of Jehovah's promises that ALL THINGS FOR US ARE ONLY TEMPORARY and we must trust in him that our future will be a wonderful one... Plus there is a wonderful poem 'When you feel you can no longer endure', that has been a great deal to me.  I do hope that this experience can help others realize that Jehovah is there and he does answer some prayers immediately..

Ellie Email: despite.disabilities@sysnetsolutions.net

INTERVIEW WITH A BROTHER WITH ALS

Dear Brother M, I have a million questions to ask you from your email...forgive me! What exactly is ALS ?? How did you get it? What are symptoms?

I SENT YOU AN AWAKE! ARTICLE ON ALS IN A DIFFERENT EMAIL. THERE'S NOT MUCH PAIN WITH ALS EXCEPT LOTS OF TEMPORARY MUSCLE CRAMPS. I GET THEM OFTEN IN ALL PARTS OF MY BODY, ESPECIALLY IN MY LEGS AT NIGHT IN BED. BUT AS MY PHYSICAL THERAPIST EXPLAINED, NO MUSCLE CAN CRAMP FOR LONG. IT WILL HAVE TO TIRE AFTER AWHILE AND HAS TO RELAX. SO, IF YOU CAN ENDURE THE PAIN, IT CAN'T LAST FOREVER, KINDA LIKE THIS OLD SYSTEM, ISN'T IT?

How do you cope?

I DO FEEL SORRY FOR MYSELF SOME, BUT MANY, MANY PEOPLE IN THIS WORLD, ARE MUCH WORSE OFF THAN ME. I SEE PEOPLE ON HE NEWS EVERY DAY THAT CAN'T FEED THEIR KIDS AND WIFE, LET ALONE HOUSE AND CLOTHE THEM. JUST IMAGINE WHAT THAT'S LIKE TO SEE YOUR FAMILY STARVE! I'D NEVER THINK OF TRADING PLACES WITH THEM. WHO WOULD?

ALSO, AS YOU SAY, I'VE HAD SOME REALLY GOOD THINGS HAPPEN IN MY LIFE AND THIS ISN'T GOING TO GO ON FOREVER.

WHEN I WAS FIRST DIAGNOSED, OUR CIRCUIT OVERSEER BILL P. SAID, IN A VERY KIND WAY, THAT I HAD "EVERY RIGHT! --- EVERY RIGHT! -- TO FEEL SORRY FOR MYSELF, BUT IT WOULDN'T DO ME ANY GOOD!"

HE MIGHT HAVE ADDED, IT WOULD DO A LOT OF BAD! I REALLY APPRECIATED HIM TELLING ME THAT. I THINK THAT ONE PIECE OF ADVISE HAS HELPED MORE THAN ANY OTHER THING.

WE NEED TO DO THINGS THAT IMPROVE OUR LIFE, NOT MAKE IT WORSE.

How do you preach?

I HAVE HEALTH CARE WORKERS EVERY DAY AND I PREACH A LOT TO THEM.

You mention "writing with your nose" - do you mean this LITERALLY?

YES, I LITERALLY HAVE TO TYPE WITH MY NOSE, THUS ALL CAPS, SO PLEASE FORGIVE ANY MISTAKES. BESIDES, I LIKE TO YELL!)

IT'S VERY, VERY HARD BUT I HAVE NO CHOICE. MY SPEECH IS SO BAD THAT I CAN'T USE SPEECH RECOGNITION PROGRAMS, BUT MOST PEOPLE UNDERSTAND ME.

I'VE BEEN IN A WHEELCHAIR FOR YEARS. I CAN'T WALK EXCEPT FOR A FEW VERY SHAKY STEPS, FROM MY WHEELCHAIR TO THE CAR OR BED, ONLY IF SOMEONE HOLDS ME UP. I CAN'T BATHE, DRESS OR FEED MYSELF.

CAN'T! CAN'T! CAN'T! IS THE STORY OF MY LIFE NOW FOR MANY YEARS, BUT MY BREATHING IS STILL GOOD.

But Bro. M....YOU can type on the computer....any information that you give me can help
OTHERS to do the same thing. HOW do you do it with your nose?? Do you have
an attachment from your nose to computer?? This can be very encouraging for
others who are just languishing away in a wheelchair with no stimulation...no spiritual association
via talking with brothers & reading wonderful experiences through email on the computer like you do!

YOUR LETTER REALLY MADE ME SMILE AND LAUGH A LOT. NOSE-TYPING
IS EXTREMELY HARD TO LEARN!!! :-)) ALL I DO, IS LEAN OVER AND PUSH EACH
KEY WITH THE TIP OF MY NOSE. AND AMAZINGLY!!! IT WORKS!!! :-)) TRY
IT, IT IS FUN. BEST OF ALL IT LEAVES BOTH HANDS FREE FOR OTHER STUFF.

I'M SORRY BUT THAT QUESTION ALWAYS MAKES ME LAUGH. YOU'RE NOT THE
FIRST TO ASK IT, BUT I ALWAYS THINK, "HOW COMPLICATED CAN IT BE?" SOME
PEOPLE DO USE STICKS IN THEIR MOUTHS, I GUESS, BUT I'D NEVER BE ABLE TO
FIND THE THING WHEN I WANTED IT. I CAN ALWAYS FIND MY NOSE. :-)) I
WOULDN'T BE ABLE TO PUT IT IN MY MOUTH AND I'M HERE ALONE MUCH OF THE TIME.

ONE POINT I CAN MAKE, IS THAT WINDOWS HAS A SMALL PROGRAM CALLED
CHARACTER MAP. IT LETS ME SELECT ANY CHARACTERS BY MOUSE THEN PASTE
THEM IN MY OTHER PROGRAMS. IT IS EXTREMELY EASY TO USE.

You apparently moved where the need is great from California to Kentucky, right?

YES, I WAS RAISED IN THE TRUTH, IN PENNSYLVANIA. I CAME HERE IN 1969 FROM SAN FRANCISCO, CALIFORNIA, WHERE I WAS THEN WORKING, TO PIONEER WITH 2 SPECIAL PIONEERS IN AN ISOLATED GROUP. THERE WERE JUST THE 3 OF US TO WORK A SMALL COUNTY. WE HAD TO DRIVE MI. TO THE NEXT CONG. TO GO TO MEETINGS UNTIL WE STARTED OUR OWN. IT WAS A GREAT EXPERIENCE!

MY WIFE, AGE 50, THIS COMING DECEMBER, IS HALF BLACK AND HALF JAPANESE. SHE ALSO MOVED HERE FROM ALBANY, N.Y. TO PIONEER. WE MARRIED IN 1972 AND HAVE A SON, NAMED IAN LEIF, AGE 16.

I'M 51 AND I'VE HAD ALS SINCE 1980 OR 1981, BUT WAS DIAGNOSED IN 1982, A MONTH BEFORE IAN WAS BORN. WE ALL GET TO MOST MEETINGS AND I STILL USUALLY ANSWER. I DO INFORMAL WITNESSING AND WE ARE ALL REG. PUBS. MY WIFE AND SON GET TO AUX.PIO. SOME.

THERE'S A LOT OF ALS HERE FOR A SMALL POPULATION. IS THERE MUCH ALS IN YOUR AREA? I RECENTLY HEARD ABOUT 2 BROS. WITH ALS TOO, IN DIFFERENT PARTS OF CALIFORNIA. ONE IS ONLY 19. THE OTHER IS 63. I'VE BEEN VERY BUSY WRITING THEM BOTH.

I would love to post your experience on our SERVING WHERE THE NEED IS GREAT WEB PAGE ...can you enlighten me more? You and your wife both went there...have served there many years and STAYED there despite all your problems??

MANY HAVE ASKED ME TO WRITE MORE ABOUT MY LIFE, BUT I JUST CAN'T. I SUFFER FROM DEPRESSION AND DISCOURAGEMENT LIKE ANY CHRONICALLY SICK PERSON. I JUST CONTINUE ON. WHAT OTHER CHOICE DO WE HAVE? IT'S NOT ALWAYS GOING TO BE THIS WAY. I'M SENSITIVE ABOUT MY PRIVACY, SO YOU CAN USE THIS INFORMATION, BUT PLEASE DO NOT USE MY NAME WITH IT.

WELL MARILYN, I HOPE I'VE ANSWERED SOME OF YOUR Q'S.

AND HERE IS THE ARTICLE ON ALS FROM THE 1994 AWAKE!

*** g94 8/8 19-21 Guam's Mystery Diseases ***
Guam’s Mystery Diseases
BY AWAKE! CORRESPONDENT IN GUAM

SHE had suspected it. Still, the doctor’s words hit hard. "All our tests seem to confirm that your father has lytico and bodig." She knew that both are terminal. Guam has the highest incidence of these diseases in the world, many times higher than the United States. But what are these dreaded diseases that will eventually take the life of this woman’s father? What causes them? And what can she do to make his remaining time bearable?

What Are Lytico and Bodig? Both lytico and bodig are degenerative diseases of the neuromuscular system. Lytico is known in the medical world as amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease. When the famous New York Yankee baseball player Lou Gehrig died of this disease in 1941, it became known by his name. Lytico is the local name for ALS.

ALS affects the motor neurons and nerves in the spinal cord. The muscles of the hands, legs, and throat slowly and steadily become paralyzed. Yet, for a time, ability to feel, as well as reproductive ability and urinary-rectal control, function well. Indeed, a number of children have been born to ALS patients. One woman gave birth to six normal children during the 14 years she suffered with ALS before her death at the age of 43. However, during the advanced stages of ALS, urinary tract infections, pneumonia, or respiratory insufficiency will lead to death. ALS appears most frequently in adults between 35 and 60 years of age. In Guam the youngest victim was a 19-year-old woman.

Bodig is the local term for atrophy of the brain. Medically called Parkinsonism-dementia (PD), it is described as a combination of the symptoms of Parkinson’s disease and Alzheimer’s disease. Either the Parkinson’s symptoms (slow movements, muscular rigidity, tremors) or the mental changes (memory loss, disorientation, personality changes) may begin first. At times, the symptoms of both diseases appear together. In advanced stages, the patient develops bedsores, incontinence of urine and feces, osteoporosis, fractures of bones, and anemia and finally succumbs to infections. Lytico and bodig are considered to be two diseases. However, research has led some to believe that they are one disease with different expressions of symptoms.

The Mystery Deepens
Among major questions being researched are the following:

(1) Why is it that 98 percent of the victims of ALS and PD in the Mariana Islands are pure
Chamorro and the remaining few are long-term Filipino residents?

(2) Why are the only other areas of high incidence located at other
places at the same longitude?

(3) Why should a number of victims in the Mariana Islands have both ALS and PD, whereas
patients elsewhere have only one or the other?

(4) How does concentrated aluminum find its way into the central
nervous system of these victims?

(5) Why is little zinc found in the brain cells where there is a high level of aluminum? Environmental studies in the high incidence areas of the western Pacific showed high levels of aluminum, manganese, and iron but low amounts of calcium, magnesium, and zinc in the soil and water.

Trying to Unravel the Mystery
For many years researchers in Guam, Japan, and Canada have tried to unravel the facts about these mystery diseases. In several theories advanced by these research teams, different agents are cited: a rare genetic factor, a slow virus infection, and chronic trace metal poisoning. A pharmacologist has claimed that as little as two to three milligrams ofaluminum in the brain cells can disrupt the brain’s normal function. Aside from the soil and water, aluminum compounds in large quantities have been added to baking powders, cake and pancake mixes, self-rising flour, frozen dough, some antacids,
deodorants, and hemorrhoid preparations. Also contributing are aluminum wraps and cookware, for aluminum is leached out, especially when acidic or alkaline foods are cooked in them.

Dr. Kwang-Ming Chen, a neurologist and authority on these rare diseases, stated: "Extensive studies conducted by the National Institute of Neurological and Communicative Diseases and Stroke (NINCDS) over [the] past 30 years have not quite unraveled the mystery of the remarkably high incidence and the cause of these most devastating and elusive diseases of the central nervous system (CNS) known to mankind." However, he indicated that chronic trace metal poisoning has far more credence than a rare genetic factor or a slow virus infection.

Research is still continuing. Until an answer is found, all that one can do is try to cope with the problems and be of the greatest assistance possible to the afflicted. What to Expect and How to Cope Although frightened and sad when they learned the diagnosis, the families interviewed in Guam said their attitude was one of acceptance. They knew there was no cure. Great frustration and despair are experienced by both the patient and his family. When asked what caused him the most distress, one PD victim said: "Not being able to speak plainly and move around the house frustrates me."

Personality changes and lapses of memory make it hard for the family to cope. Bedsores and incontinence of urine and feces make care more difficult. Because the ALS patient is mentally alert, his attitude is generally more cooperative, but he is entirely helpless in the advanced stages of the disease. A suction pump is often needed to help clear the throat of the ALS or PD patient. Food must be soft, and small spoonfuls must be placed deep in the throat to prevent choking. Oxygen is needed when breathing becomes labored. Physical therapy, control of infection, and emotional support are all provided by the Home Care Service Agency.

Among other necessities, the Guam Lytico and Bodig Association provides braces, splints, surgical beds and mattresses, wheelchairs, and bedpans. Since 1970, PD patients have been treated with L-dopa, which loosens muscle rigidity and improves slow movements. Unfortunately, there is no effective medicine for the dementia or for ALS patients.

Close family cooperation has usually been outstanding when these illnesses strike. One woman who lost her father, a sister, and six other members of her family to either ALS or PD commended her family, saying: "They were all good to help." And speaking with fond remembrance of the help from her ill sister’s husband, she said: "He showed such great love! Every day he put her in a wheelchair and took her for a walk. "One woman chose to remain single for many years to take care of her mother. Her family had already lost three members because of ALS, and others began to symptoms.

Another woman, totally paralyzed for over 24 years, had three daughters, and two of them quit school in order to give their mother comprehensive care. She was turned from side to side at 30-minute intervals day and night. Because of the demands of constant care, some families have found it necessary to put patients in hospitals where a trained staff can supply their needs. Families that have successfully coped with ALS and PD offer these suggestions: Be loving but firm. Do not show impatience or expect too much from the patient. Have faith in God. Pray often. Arrange some private periods for family members who spend the most time with the patient. Take the patient on outings at times and help him to attend village or social functions. Do not be ashamed of having a
patient in the family. And encourage children, grandchildren, and friends to visit, for victims are often lonely.

While medical science has not found a definite explanation for these diseases, there is hope for both the stricken ones and their families. The Bible shows that soon, in God’s new world, all disease, pain, and death will be eliminated forever. Instead, there will be perfection of mind and body, with everlasting life in view. Even dead loved ones will be resurrected to life on earth. Please read God’s Word, the Bible, to an ailing loved one so that he can learn about the marvelous hope ahead.-

Psalm 37:11, 29; Isaiah 33:24; 35:5-7; Acts 24:15; Revelation 21:3-5.

GETTING TO KNOW THE DISABILITIES OF DISABLED PERSONS

Chronic Fatigue Syndrome & What our Brothers are Going Through
"Our fatigue", one patient explains, "is to ordinary tiredness what lightening is to a spark." Imagine a disease that zaps all your energy, making lifting the covers to get out of bed a real effort. Walking around the block, even at a snail's speed, has become a major undertaking, picking up your toddler a breath-taking experience.

"...Imagine, you can read the words and sentences of a newspaper article, but you can't put it all together...imagine feeling like you were receiving hundreds of intra-muscular injections simultaneously in all your muscles, making it painful to sit, impossible to move, making a hug no longer pleasurable...

"...Imagine frequent chills, cold sweats...low grade fever. Combine all the symptoms and compare it with the worst flu you have ever fought...except it is much worse and lasts up to a whole year!" Canada's Medical Post, Sept. 3, l991

Chronic Fatigue Syndrome & the Brain & Nerves
In the United Kingdom and Canada, CFS is called myalgic encephalomyelitis or ME. "Myalgic" draws attention to the muscle pain, and "encephalomyelitis" to the effect the disorder has on the brain and nerves." Awake! Aug. 22, l992

Value of Acknowledging Illness
"...it is a real illness...it is not 'in their heads' I can tell you that chronic fatigue syndrome is REAL" Dr. Alan Kind, Infectious Disease Specialist.

Validating the Illness
"The benefit of validating a patient's illness can be tremendous. When a doctor told one woman she had CFS, she said, 'The tears just welled up". To hear a doctor say her illness was real, and that it had a name was such a relief to her." Awake! Aug. 22, l992.

Brain Abnormalities
"The largest study yet of Chronic Fatigue Syndrome has found evidence of inflammation in the brains of patients..." The N.Y. Times, Jan 16, l992 Annals of Internal Medicine.

Our Brothers Suffer an Immune System Engaged in War
" A healthy immune system responds to an enemy virus or viruses by releasing chemicals, called CYTOKINES, to fight the invaders...when emergency is taken care of, the production of cytokines normally ceases. But in CFS patients, the immune system apparently fails to shut off...a consistent finding in people with CFS is an increased production of cytokines...a person feels ill because his body cells are producing cytokines, which cause fever, achiness and fatigue." Dr. Anthony L. Kanaroff, a leading CFS researcher, Awake! Aug. 22, l992

An Immune System Gone Crazy
"The immune system keeps producing cytokines instead of ceasing production. The cytokines remain and begin to damage the host until ultimately we see the profoundly bedridden patient who can hardly move." Dr. William Carter, a US medical professor.

Understand & Love Needed for our Brothers & Sisters
One CFS sister said, "we don't want PITY. We don't need sympathy. But, my, how we could use some UNDERSTANDING!"

Devastating Comments
"A CFS suffer in Texas noted, "Sometimes, I have felt like Job, whose companions weren't always helpful" A visitor for example once told her: "You look fine to me! I thought you were really sick. You and my mother-in-law have a lot in common. She is a hypochondriac too."

Not Sympathy, But Empathy
"A sister in Washington State noted, "The one thing I wish people had more of is EMPATHY", she said, "Not SYMPATHY, But EMPATHY."

Comments that Hurt Instead of Help
"One well meaning person suggested to a CFS sufferer: 'what you need is to drink some warm milk at night. It will help you sleep and you'll be all right in a few days.' That comment revealed a total misunderstanding of CFS. It hurt the sufferer more than it helped." Awake! Aug. 22, l992

RECOMMENDED READING RE: CFS:

AWAKE! Aug. 22, 1992, Pa. 3-15:

Diagnostic Criteria What Not To Say And Do How Others Can Help.
 What To Say And Do What Sufferers Can Do What About Treatment?