Coping with the diagnosis of MND/ALS

How Others  have Coped

Please send your story and I will include it here.  paulfran@bigpond.com

Paul Vineburg

Linda Santos

Steven Brown

LIVING WITH ALS from the perspective of Linda Santos

How am I living with ALS?

Well, about the same as I lived without it. I am the same person with the same strengths and weaknesses, with the same purpose in life, the same questions about life. Even the same opinions and beliefs, though they are only illusory.

My friend, Spider, described to me how we all live in the past. We define ourselves by our past experiences. I am this person because I made these choices, I got such and such an education and job, I went to these places, I met these people, I did these things. And that's who I am. All related to the past.Then along came ALS. I was whipped around 180 degrees, and with my head still spinning, I found myself facing the future. And the future was EMPTY.The horizon was a bit closer than I had expected but the distance between me and it was "to be announced." I could make it up as I wished. I could fill it with laughter or tears, with anger or peace, with despair or joy. I choose joy.After all, I had made up all those opinions and beliefs and arguments before this, why not make up the future? I realized that all that I had been told about dying was pure speculation. Nobody had been there, seen it, could describe it. At least, not as it would be for me. It was a complete mystery.Oddly, that brought me a great deal of peace. I relaxed and found that I could actually be excited about this journey I was going to take. It became an adventure, one for me alone, without parameters or design, and thinking of it can make me smile.I think that surviving a loved one's death is harder than dying yourself.Being left behind when someone goes off on a journey without you is hard enough, but knowing that they'll never come back for you is devastating. Most of us have experienced the death of family and friends, and survived.We don't welcome the death, we grieve as predicted, and we do our best. We remember the person who is no longer available to us and our memories of them stay alive for us.Not all of us have had this experience yet. My children are eight and eleven years old, they still have four grandparents, and their mom is a pistol. We were advised to let them lead the way and to answer their questions only as they asked them. So I guess that death is kind of like sex in this way. My son said that de doesn't want to look for ALS on the computer because he doesn't want to find out that there is more to worry about than he already knows. He hasn't talked about what he is worried about but we imagine that he has figured it out. The younger child, the girl, asked if anyone has ever been cured of this disease, and has anyone ever died, and did Lou Gehrig die. I'm much easier with them than I was before. We hug and laugh and cuddle and play, silly sometimes. They may not have me long, but they will remember me and know that they were truly loved. Isn't that what we all want? I am fortunate not to be the breadwinner, and not to have to worry about the fears that the loss of my income and skills might have on my family. My husband faces the horrendous task of raising children and earning a living. He became my husband, and remains my husband, because he is so easy to be with, and he reacts without defenses unlike anyone else I have met. All I can do is try to point out a direction for him with the children, give him my last wishes, and tell him my secrets. I pray that others will help him.I am writing a journal for each member of the family, so they can have a personal record of my feelings and hopes and suggestions for them.I don't want to sound like a Pollyanna here. There are moments of despair,of losing the way, moments when I don't want to get out of bed. There are days when I look at that future that I have faced so joyfully, and the fear of it overwhelms. Some days the hardest thing I do is get dressed.I've always been a contemplative person and have come to know myself through the years, this one as well as the others. I'd rather have time than money,I'd rather be than do, I'd rather laugh at myself than be angry. I need time to daydream, to discover and to plan, or plot and scheme as some would have it. I have a clearer line between doing what I want and not doing what I don't want. I have contact with all the important people in my life. We share our thoughts, and our feelings of deep intimacy and kinship. As I told my doctor in the beginning, "This disease has a lot to recommend it. It doesn't hurt, it doesn't make you feel bad, the drugs won't make you sick, and there aren't many choices to make. The only job I have to do now is have fun."

I have everything I ever wanted in my life. I wish the same to each of you.

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Steven Brown

Every couple of months I venture down to Swanbourne to talk to a group of people training to be Carers. My challenge is to tell them about myself and my experiences dealing with Motor Neurone Disease. Hopefully at the end my story will have given them a better understanding of some of the aspects confronted by people with disabilities and this dam disease MND, and have given them some information useful in their future role as carers. I try to keep it simple, I try to be honest and while the story may be sad at times I always try to find the positives and find a little humour. Truth be known these sessions are equally as helpful for me, free therapy if you like. Anyway, like the triathlete before the race, a little nervous, I proceed to tell my story. Something like this…
"Hello, my name is Stephen. I hope you can understand my weakened voice otherwise this is going to a pretty boring talk. My story starts nine years ago remember nine because it’s important. I was your average young man. Married with two sons, one newly born, a mortgage and a job. Worked hard, enjoyed a beer with my friends and pretty much ‘normal’. I had a twitch in my right arm that wouldn’t go away. Just a pinched nerve I thought. After eventually going to see my doctor I was then referred onto a specialist. After many tests and just before Christmas, the specialist entered my hospital room and very coldly advised me I had Motor Neurone Disease and about five years to live! Nine years ago"!

"To say I was shell-shocked would be an understatement. I went home and tried to enjoy Christmas with my young family. I guess I asked myself the usual questions. Why me? What did I do wrong? What’s Motor Neurone Disease"?
"I have since discovered some of the cold hard facts about MND. It is a terminal illness with no known cause or cure. MND occurs in all age groups, but primarily in people aged over 50. It is expected to become more common as the number of older Australians increases. Death occurs relatively quickly, usually within three to five years of diagnosis. People with MND become severely disabled and dependent on their carers. Simplified MND is the opposite of Alzheimer’s. While their mind wastes away and their bodies remain relatively normal our bodies waste away and our minds remain relatively normal. Although some of my friends jokingly dispute that statement in my case. While that all sounds pretty negative remember I’ve been around nine years, as have some others, and there is an enormous amount of research going on around the world. We must always have hope"!
"Anyway, because my problems hadn’t really started yet it was easy to ignore my predicament. To deny that anything was wrong. So I worked hard, extraordinarily at times. Unfortunately as time passed this became increasily difficult as my muscles wasted away. As my hands, arms and voice became less useful. As my new disabilities started to shape my life and its options. I guess at only thirty-eight I’m unlucky to have this dam disease, but I’m still lucky enough to be walking and I’m still alive after nine years. Most MND people are completely incapacitated or at best wheelchair bound. Fingers crossed."
"Over those nine years my life has slowly changed. I’ve retired. My physical capabilities have slowly decreased. From being a fiercely independent person to relying on others for assistance has meant a changing of attitude. Words that come to mind are frustration, anger, burden, guilt and uselessness. As my physical capabilities have to be re-evaluated often so do my emotions."
"Not being able to dress myself properly anymore. Not being able to eat normally. When I get that dam itch on my head, being unable to reach up and scratch it. Having no stamina. And the list goes on. While the disabilities are extremely difficult, having to constantly re-adjust your lifestyle can be an equally hard task. Like you I used to take everyday tasks and happenings for granted. Not any more."
"For example. I can’t do up trouser flies and before I would yield to the necessity of wearing daggy elastic waisted pants this stubbornness made going out anywhere interesting. When the old bladder could take no more and nature called, actually she screamed, I would race to the toilets with my darling wife in tow. Just before entering my wife and I would slip into the corner or shadow where she would very discretely reach down and unzip my fly. I would then race inside to complete the business at hand. Yes we did get sprung a few times. The initial embarrassment of being caught the first couple of times soon disappeared to be replaced by a feeling of so what. May be a male thing. I was more worried that my wife would grab the wrong fellow on the way out. Sometimes you have to laugh otherwise I think I’d go mad."
By this time the effort of telling my story now equates to having completed the first swim leg of a triathlon. Time for a breather as another fellow storyteller gets their chance. I sit back to listen and ready myself for the next part of my story, the next leg, the bike. As I sit there I feel a little envious because as they mention their condition there is instant recognition from our audience whereas unfortunately because MND lacks pubic awareness I had to explain what MND is. They then explain about the large support mechanisms and Associations in place to assist them. I sit there knowing my little Association, the Motor Neurone Disease Association of Western Australia, who offers many essential services to people like me and without which we couldn’t survive, is grossly under funded by the Western Australian Health Department. I want to jump up and say that it’s not fair. Say now my Association has had to struggle with scarce resources and mainly voluntary support. How even so they have managed to offer benefits that assist our quality of life and our ability to stay in our homes. I bit my tongue. Time for the bike. I’m asked to tell more.
"I often referred to normal. Probably wrongly so, but what I wouldn’t give to be normal again. To be able to do what I want when I want to do it. To be able to go up the park and kick the football with my boys. To be able to reclaim some of that independence and self-worth. I have spoken about me, but what about my family. People usually are generous with their sympathy for me, which is not what I crave, but what about the impact on my wife and boys? I shutter to think about the extraordinary pressures added to the already difficult growing times of two young boys. And my ever supportive and darling wife. She’s had to become my valet, driver and counselor. I think it’s sometimes tougher for her."
"But, this disease isn’t all bad. It has made me a better person, but not that I was a rouge before. It has enabled me to meet some incredible people. People faced with adversity yet joined by a determination to face that adversity. Some of those people have become my friends."
"I remain positive, forever positive. Determined to fight this disease. I have every reason to succeed. A wife and boys I love dearly. Although I accept my life is under threat I won’t give in. I want to watch my boys grow up and share some more laughs with my best mate, my wife."
Off the bike and ready for the run. Another quick breather. Time for the run. Time for questions.
"Do you have problems with your voice?" "Yes, sometimes people are unable to understand me and assume I’m drunk. And I’m not always. Only joking. It makes me angry, but that’s the way some people are. I move on. There are more important worries".
"What can you do to help yourself?" "I try to remain as active as possible in both body and mind. It’s important to be positive, as I believe a negative mind can be your worst enemy. I try to address issues before they become problems. For example physiotherapy for a sore shoulder before it becomes a painful shoulder. I tell my wife red wine and loving is the answer. She won’t believe me. I try to keep living."
"Thanks for listening."
Across the finish line. Did I win? Who cares, I finished. The reward is another audience has a better understanding of MND and some of the feelings associated with it. Some of the credentials they will need to care for someone with a severe condition Iike Motor Neurone Disease. I say good-bye and my host thanks me for my efforts and says that was good. I hope so. I leave feeling like that triatlete who has just finished their race. Satisfied, a little pumped up and glad it’s over.
Stay well, stay positive and regards
Stephen Brown (mutley)
MNDA(WA)  
OZPALS 

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Communication and Swallowing Solutions for the ALS / Mnd Community

by Marta S. Kazandjian

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Articles

Marlene Ciechoski, M.S., R.N.
(Originally published in LINK, May 1998, ALSA)

The diagnosis of ALS is a life-changing event for an individual and his/her loved ones.
Yet, for many, the journey began prior to diagnosis, often with a twitchy finger or raspy
voice; these "small problems" may have prompted visits to a variety of doctors and
therapists in an attempt to find out what was wrong.

The pathway to diagnosis is often filled with inconclusive medical opinion
accompanied by increasing anxieties that your symptoms are progressing without an
actual name given to the entire process. For others whose symptoms allow them to be
diagnosed in a shorter period of time or whose physicians are more familiar with ALS,
the news comes more quickly. However long or short a time it takes, the final
diagnosis is inevitably met by an overwhelming sense of fear, worry, and loss.

While many people at the time of diagnosis have heard about ALS, some may not
know about it at all. Perhaps they are only familiar with its other name, Lou Gehrig's
disease, having a memory of the famous New York Yankees' baseball player and the
disease that claimed his life.

Frequently, following diagnosis, people go to their local library or bookstore and study
a medical book, or they check their computer for information about ALS. What they
find can be genuinely frightening, bleak, and grim. Eventually, they will discover the
number of the National Office of the ALS Association (ALSA) or that of a local ALS
Association chapter or ALSA Center. These resources can provide information that is
positive, will answer your questions, and alleviate concerns.

However, knowing these facts may increase your level of anxiety. A common initial
response to the diagnosis is to be overwhelmed and concerned. You may feel
extraordinarily compromised and fatalistic. The meaning of the diagnosis is very
different to each person. To some, it is unthinkable, unbearable, and unacceptable. To
others, it offers answers to their quest for some understanding of what has been
happening to them.

The news of your diagnosis can take place on a solitary visit to the physician's office or
in the presence of family and friends. Without a doubt, for the majority of people, the
time of diagnosis is when the support of loved ones is most crucial.

Sometimes people want to receive the news alone, allowing them time to think about
how to tell their family. Still others cope best when they have their loved ones at their
side. Reactions to news about health problems vary widely -- from shock and disbelief,
to anger and despair. Most people are worried and distressed about the effect on their
loved ones. They are anxious regarding the implications of ALS in terms of longevity,
ability to continue working, and life roles.

Any emotional response to the diagnosis by you or your family members is absolutely
normal; it is a moment when everyone is stunned and concerned about its potential
impact. There must be time to gather thoughts, before everyone involved can assess
the circumstances and begin to address the multiple issues now confronting them.

You probably will want to discuss how you feel about your diagnosis with your closest
family members and friends. However, certain loved ones may be unable to address
these issues because they feel that discussing the situation will only make it worse.
They must realize that their need to discuss the newly-given diagnosis may not be
inline with your needs and willingness to communicate your reactions. A period of time
might have to pass until each person involved feels more collected, more sure of
thoughts and feelings, before being able to reach out in communication with each
other.

Your loved ones must be understanding while you begin to incorporate the meaning of
this news on a very personal, emotional level. At the same time, family members and
friends may find that talking with each other about their own reactions will help them
achieve a sense of comfort when they interact with the person with ALS.

In some cases, an individual may decide not to return for follow-up medical care or
may refuse any attempts to discuss these concerns with his/her family or friends. It is
critical that a close family member or friend try to help the person deal with the
diagnosis by looking at the obstacles to communication and how, in fact, it could be
helpful to acknowledge what is occurring and what lies ahead.

Beginning your journey.

When people receive news about a life-threatening health problem, it is not unusual to
experience any feeling that is within the scope of human responses. Your ability to
recognize and cope with your feelings is most often related to previous life
experiences. How you have handled other life crises and difficult problems will
influence how you will begin to face ALS. In particular, make sure your recognize the
resources available to you -- your family and friends, health care professionals, and
local and national ALS organizations -- all of whom can be helpful in providing
information, directions and "tools" as you begin your journey.

Reactions to the diagnosis - The author's observations

In 1984, I met the first person I ever knew who had a diagnosis of ALS. He was a
gregarious, loving man with a repertoire of bad jokes and a great smile. He knew he
had a difficult disease that was not clearly understood at that time. Whatever
information was available, he sought out and learned. He certainly came to know a lot
about ALS.

Over the years, I have observed many different reactions to being diagnosed with ALS.
There may be a conflicting sense of hopefulness and hopelessness. Both of these
feeling are likely to be experienced by everyone involved. Similar to the stages of
dying and death, people experience anger, denial, bargaining, depression, and
acceptance in varying order and degree (as described by Elisabeth Kubler-Ross in
her well known book on this topic). People are stunned by the news. Some, upon
hearing their diagnosis, have bolted from the doctor's office and sought other medical
opinions. Still others are optimistic and want to live their life as fully as possible, in
spite of knowing that they have this illness. They hope that research will find the
answers.

People often ask me, "How do I cope with ALS?" My answer, borne out of contact with
patients over the years, is "You cope with it in your mind and in your heart. " Although
there is a human need to deny and diminish the impact of such a diagnosis, you need
to be well educated about ALS. You should make an effort to learn everything about
this illness as you assemble your professional health care and support teams. This
includes information about good nutrition and eating tips, safe mobility, preventive care
(flu shots, pneumonia vaccine), current treatments, equipment options, basic science
and clinical research, advocacy programs, and the hope that comes with the giving
and receiving of support, nurturing and love. Successfully managing this disease will
allow you to live the fullest life possible.

It is wise to become informed about the types of decisions that you might have to
make. Most of all, find a way to live in this "new and different space." ALS requires
time, energy, resources, and determination. As a 46 year-old woman with the disease
explained, "ALS does not make its appearance when it is convenient. It does not
necessarily affect you after the kids are reared, the house is paid for; work is secure,
and you are emotionally prepared. Most problems in life, with health or otherwise,
generally do not make appointments in advance. "

I have always been impressed by the tenacity of people diagnosed with ALS. At a time
when lives are shaken to the core, when progressing symptoms are responsible for
physical challenges and fatigue, people rally their strength and spirit and take on this
disease. They learn quickly that they must fight for the quality of their lives. A
42-year-old woman, full of grit and grace, was fond of saying that she would do
"whatever it takes to live and try to beat this. "

At the same time, as a 50-year-old priest observed, "ALS plays havoc with one's
emotions, "indeed, it creates anxiety and depression which can be further disabling.
Trying to tolerate and to understand these perfectly normal feelings can help you to
deal with this devastating experience. One woman states, I wanted to hide in a closet,
cover my head with a blanket, and wait to die because I was so scared. " A young man
trying to deal with this disease said, "I wanted to beat up on everything and
everything because I was so angry and so scared. " ALS can he scary; not only does
it bring on physical changes, but it triggers a wide range of emotions and feelings as
well.

Anxiety is an uncomfortable feeling resulting from something important being
disrupted. In its milder form, anxiety usually makes you take action and as such is
generally productive. At its worst, when it overwhelms, anxiety can be disabling. When
you learn that you have ALS, you are uneasy and anxious, among other emotions. One
man recalls, "What I remember most of that moment is that I cannot remember it!"
He heard the news but felt as though he were no longer present nor participating. "My
anxiety level went through the roof. I was in shock for days." As recovery from the
news occurs, anxiety generally diminishes.

Some people may respond to their diagnosis with a significant and profound found
sense of depression. Depression is an overall feeling of sadness, helplessness, and
dejected emotions. It is normal and appropriate throughout life and especially during
illness to feel depressed. At times however, it can be debilitating. Actual comments I
have heard include:

"Life felt as though it were over. Nothing at that time mattered. "

"I went home from the ALS Center, took to my bedroom three days, and cried my
heart out. "

"I did not want to talk with anybody or to see anyone."

"I slept either too little or too much. "

Depression is a normal response to a devastating illness, but it can take away your
spirit and your energy. Both anxiety and depression can be treated effectively. You
should not hesitate to seek professional help to cope and deal with the complex
feelings that surround ALS. Support groups, counseling or psychotherapy with a
mental health professional such as a clinical social worker, psychologist, therapist,
psychiatric nurse or psychiatrist knowledgeable ahout ALS can be extremely helpful. In
addition, your doctor or psychiatric consultant can prescribe medication to decrease
the symptoms of anxiety and depression.

There can be an anguish to this disease that encompasses the soul. The diagnosis of
ALS takes you down a path you would never choose. It forces you to face changes,
challenges, choices, and more.

Personal message from the author

You and I have shared a special place for the time you spent reading this information. I
hope you have felt your strength and have been able to ease your fears. I have
observed so many exceptional people with ALS, like you, embrace life in the face of
this difficult disease. Your journey may be longer or shorter than theirs, but it is yours.
Travel well on your path, and fear not the shadows, for your courage will illuminate
them. All around you is love, and always hope.

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