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John's Town
ALS Insights

by Vincent Celestina
passed away on Jan 4 2002

Written with on-screen virtual keyboard.

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Monday, September 17, 2001

After my DX on 5/6/2000 I went through shock, anger and depression. What have I done to Jeannie! We have only been married for 8 weeks. Searching the NET I discovered how much the volume of information on ALS/MND has grown since 1995, found e-groups and on 3/7 joined OZPALS. I stayed with my fitness program but by end of July I could not lift my right arm and had to give up golf and end of September I stopped swimming. Now I walk up and down the tiled floor of the house - 16 steps with my neck-brace on.

In the meantime I found and joined MNDA-Vic, Voluntary Euthanasia Association, Right-to-die org. And like many of you I later subscribed to other mailing lists and digests: living-with-ALS, Bob Broedel ALS-ON-LINE, TrachyVent, and vent-users digest. Between reading all the mail, research
papers and MNDA-VIC-News I kept my eyes and ears open to media reports. There are many wise PALS, CALS, FALS, and health-care-experts contributing to these groups and, apart from experts themselves; we are probably the best-informed groups on management of ALS, drug trials, and research and living and dying with ALS. The best way to live with this is to stay active and productive; I will be writing of my perceptions of people around me and connected with me, statistics, research, conflicts, guilt, depression, and
death-with-dignity.

What is this "dying with dignity"? Not killing myself and taking with me scores of other people like in the current American Tragedy, the suicidal bomb attacks in Israel, or the Japanese kamikaze attacks at Pearl Harbor. My heart goes out to all the people who loose their life, and to those who have to cope with the loss in this senseless manner. If I have to die - at that precise moment I would like to think I am dying to save people.

Some people are asking for my e-mail address. Those who have known me for a while have been writing or sending CC to my Melbourne address. No need for that now, it's paid for till May 2002 but I may not go there again. Once mailbox is full mail will bounce. When I won Jeannie's heart I bought her this computer setup and our address is:

jeannie@techinfo.com.au

But Jeannie is not guilty of writing any of this. We live at 28 Village Green, Chirnside Park - 40 km out of Melbourne. A real village green, with twin playing fields and floodlights for night matches. I could watch cricket in summer, and not long ago I probably watched my last football match sitting on our verandah and sipping the life-saving Brown Brothers Red - it says on the box: Antioxidant (300) Added

Sunday, September 23, 2001

"It is estimated that for every person diagnosed with the disease, a further 14, being their families and close friends, will live with it forever. "From MND-Week 2001 Information Kit. - How many lives will I ruin before I die?

Jeannie manages all the bookings, buys musical scores, and is also MC for the "Redapple Singers", a group of 10 singing for people in nursing homeand retirement villages. Last Monday she departed for her choir practice. It was a beautiful morning, with sunrays breaking through the Tree ferns growing in the courtyard -directly into our bedroom where I was slowly getting dressed. I fetched my camera to record something I may never see again. Later I went outside and took a few shots of the flowering shrubs in front of the house. All together a managed six snaps with my remaining left hand before it went on strike. On Thursday evening Jeannie was invited to a reception by Cr. Diane Moore, Mayor of Yarra Ranges. She was to collect her certificate of appreciation in recognition of voluntary services to the community. My Jeannie was beautiful; I asked her to pose for a photo. With difficulty I managed to take one, but no matter how I tried I could not get the camera up and steady enough to press the shutter button again! Admittedly it was later in the day and I was tired; still my disease is progressing very fast!!! What will happen to her singing when I become a "No hands!" guy and cannot be left on my own? How will I sample my Brown Brothers Red?

Wednesday, October 3, 2001

Ladies and gentlemen, my mailing list is complete. I am Vincent Celestina, Australian citizen, age 65, retired psychiatric nurse/nurse manager dying from Motor Neuron Disease. With all the dying by violent means going on around the world, the economic turmoil, and the parliament rising for elections, bringing up issues about people dying from some form of terminal disease may be bad timing. But I have no control over the rapid progress of my illness, and when I lose my ability to control the computer mouse I will also lose my last available means of communication - e-mail.

Over the next few weeks I hope to be 'speaking' for my own and other groups of people in similar position, and for those coming after us. The physical, emotional and financial toll this disease can impose on the patient, family, friends and the State. The groups of people involved with care, treatment, research, and legislation. The secrecy? What 'Death with dignity' means to me. Conflicting standards of politics: no help to die - no help to stay alive?

All this material will be written on word processor for distribution to my children and grandchildren after my death.

Friday, October 5, 2001

Motor Neuron Disease is a rare disease, and the times this disease is mentioned in Australian media are even rarer. Since my diagnosis in June/2000 I saw or heard the three words only three times: Once in print - during the third week of August 2001. MNDA-VIC must have bought some advertising space in Leaders Community Newspapers. In Diamond Valley news the message appeared as a 2 x 14 cm strip right at the bottom of a 'Classifieds' page under a much larger, heavily bordered add for Venetian blinds. It is a wonder one of my friends spotted it! Once on TV - in the second week of September 2001 when SBS introduced the UK court case involving Diane Pretty - Once on radio ABC in the third week of September when John Fein and Robert Mann interviewed Mitch Albom, the author of "Tuesdays With Morrie". It was mentioned by Mitch who said it was ALS Morrie had died from, and that ALS was here in Australia called Motor Neuron Disease.

Most Australians don't know it, and it is likely some members of the Australian Parliament are unfamiliar with this rare disease with worldwide incidence of 2 and prevalence of 8, which is approximately one person in 12,500. In the old days it was called the 'Creeping Paralysis' and the incidence was even less frequent. The average life expectancy in the 18th century in most of the world was bellow 40. Today the onset in 80% of cases occurs after the age of 40. In 1995 the country with the lowest life expectancy was Angola 41, and I expect both incidence and prevalence of ALS in Angola today are well bellow the world average. (I was roaming the WWW, happily pursuing my hobbies anthropology, demography and genealogy when this disease caught up with me).

What is Motor Neurone Disease?
Motor Neurone Disease (MND) is the name given to a group of diseases in which the nerve cells (neurons) controlling the muscles that enable us to move, speak, breathe and swallow undergo degeneration and die. Motor function is controlled by upper motor neurons in the brain that descend to the spinal cord; these neurons activate anterior horn cells (lower motor neurons). The lower motor neurons exit the spinal cord and directly activate muscles. With no nerves to activate them, muscles will gradually weaken and waste. The term MND is most commonly used in Australia, New Zealand and United Kingdom. The rest of the world almost exclusively uses the term Amyotrophic Lateral Sclerosis (ALS).

Many PALS lose the full use of one or both arms and use acronyms or shortcuts whenever possible. Like this: 2b or not 2b =? . PALS - a person with ALS; CALS - a carer of PALS; FALS - Familial (inherited) ALS; a Friend or Family member of PALS.

Update:
USA - It has been confirmed by Senator Kennedy's staff that the Rare Diseases Act (S. 1379) will be brought up for consideration (marked up) by the Senate Health, Education, Labor, and Pensions Committee on Wednesday, October 10. This legislation would be beneficial to PALS and CALS.

UK - Between Oct. 10 and Oct. 12, the High Court in London will review the case of Diane Pretty, 47, who is challenging the director of public prosecutions' refusal to rule out pressing charges against her husband if he assists in her suicide. Diane Pretty is in advanced stage of Motor Neuron Disease.

South Australia - The Dignity in Dying Bill 2000, prepared in conjunction with The South Australian Voluntary Euthanasia Society (SAVES), was introduced into both houses of the South Australian parliament on 15 March 2001. The Patient's Condition: The patient must be 'hopelessly ill', defined as 'an injury or illness (a) that will result, or has resulted, in serious mental impairment or permanent deprivation of consciousness; or (b) that seriously and irreversibly impairs the person's quality of life so that life has become intolerable to that person.'

Friday, October 12, 2001

You will notice I am giving my full name and address. I have been trying to get attention of the news - media and other organizations for a long time, and as you all know they will not deal with us without knowing who we are. Who knows, someone may be collecting this stuff and use it in the future. During the Victorian ALS/MND week Jeannie tried to get a local paper, and then reporter from the council to interview me but when they heard me speak they probably thought I was a Down syndrome child and politely got rid of me. A representative from another organization must have sensed I was going to be too critical, nothing doing. There are some sensitive issues about terminal illness! Now is too late, half of the time even Jeannie doesn't know what I am talking about. Beni, you are asking what I hope to achieve? Maybe not much during my shortened lifetime, but at least it keeps me active and living with a purpose. My rambling may make some difference to what happens after my death - funding for those with ALS who want to live on, death with dignity for those who choose to take the course dictated by God or nature, and those without such choice. I am hoping the South Australian parliament will pass - "The Dignity in Dying Bill 2000" before the end of the year, I will at least have another choice. Having a choice in the way I am going to spend the rest of my life, and particularly the way I am going to die is very important to
me. Since I have been assured I can prolong my life on life support systems if I choose to my depression left me. Many people have no choice and I am also speaking to people with cancer, AIDS or any other terminal illness. And interested people who are well and don't know when and how they are going to die. In my business we don't say: "I know how you feel!" I tell you how I feel and think .you may have some thoughts like mine and you may feel less lonely. Dying is a lonely business.I don't want to die!
Vincent Celestina, 28 Village Green, Chirnside Park
Victoria 3116, Australia. Telephone: 61-3-9726 7407

Wednesday, October 17,2001

Northern Territory legislation called the Rights of the Terminally Ill Act 1995 came into operation on July 1, 1996. The first person dying under that bill was Bob Dent on 22.09.1996. Even before his death Kevin Andrews, MP
introduced a private bill to overturn the legislation.

"Bob Dent's last letter is a sobering personal account, and I will conclude my remarks with this. In it he noted his four years of struggle against cancer. He stated: My own pain is made worse by watching my wife suffering as she cares for me, bathing and drying me, cleaning up after my 'accidents' in the middle of the night and watching my body waste away. If I were to keep a pet animal in the same condition I am in, I would be prosecuted. I read with increasing horror newspaper stories of Kevin Andrews' attempt to overturn the most compassionate piece of legislation in the world."

On 25/03/1997 the "Andrews Bill" or "Euthanasia Laws Bill 1996" was read for the second time. The members were allowed a conscience vote and the bill was passed. By using 'Kevin Andrews' as your search string you will find his home page, and the page with speeches for and against the bill. I copied them all to my Word for my descendents to read. On his home page are a number of his speeches but not the one he delivered on that day. And you will know why! Kevin Andrews is the liberal MP for Menzies. I vote in Batman but live in Casey; only three minutes drive from Menzies. Perhaps he will visit me one day while campaigning for re-election. You will note MND was mentioned once in those speeches:" We need to ask ourselves under what circumstances euthanasia would be allowed.

Terminal illness comes in many guises and suffering in many forms. How imminent would death have to be? How painful would the pain have to be? What about diseases such as motor neurone disease or Alzheimer's-not painful in the usual sense, but surely capable of inflicting enormous mental suffering? Even at the beginning of this discussion we start by putting limits on when euthanasia might be allowed and to whom it might be available." Leo McLeay MP, Liberal (Watson) for the bill.

I would not wish ALS/MND on anyone but would gladly let any PM or Senator have my neck, back and shoulder pains for 24 hours. We don't know how many PALS they interviewed at the time but surely they must be better informed now?
They took from us a choice - the right to die the easy way.

Teusday, October 23, 2001

Some of you will remember: on 17/9 I wrote in my Insights 1:
'What is this "dying with dignity"? Not killing myself and taking with me
scores of other people like in the current American Tragedy, the suicidal
bomb attacks in Israel, or the Japanese kamikaze attacks at Pearl Harbor. My
heart goes out to all the people who loose their life, and to those who have
to cope with the loss in this senseless manner. If I have to die - at that
precise moment I would like to think I am dying to save people.'
There were no answers to the question at the time but the Diane Pretty saga
made many people, and particularly those of us who are about to die, search
their conscience pondering what decision they would make if they sat in the
House of Lords. I agree with what. Lord Justice Tuckey said her human right
was "to live with dignity, not die with dignity." No court in any country
can set a precedent legalizing one member of a family killing another, no
matter what reason.
Leo got it right: "I believe the main reason Dianne is doing this is to
publicize the fact that there are some in society whose quality of life is
non-existent and to try to get a law introduced that will allow euthanasia
as in Holland -- and I hope she succeeds."
But today I would rather talk about living. Diane and her husband are a
godsend to PALS and their families in Australia - we are in election mode.
This is the first time most people in this country would have seen a PALS;
Diane with a PEG feeding tube, paralyzed from waist down, in physical and
psychological agony. It is almost 5 years since the NT Rights of the
Terminally Ill Act 1995 was overturned by Australian government with a
conscience vote, and by the time the newly elected parliament sits down to
govern, they will have to search their souls again. Technology is now
available to prolong the life of a PALS, and their conscience will not
allow them to have it both ways: no right to an easy death - no government
funds to help us live on. It has been reported some PALS in NSW have been
denied the lifesaving procedures.
Vincent Celestina - 28 Village Green, Chirnside Park
Victoria 3116, Australia. Telephone: 61-3-9726 7407

Wednesday, October 25, 2001

The relevance of Insight 6.[Wednesday, October 17,2001] During the passage of Andrews' Bill a number of
powerful organizations, interest groups and individuals were lobbying in
favor of the bill. The expected ones were religious and Pro-life groups. The
position of AMA (Australian Medical Association) was strange, and an
inference was made during the discussion that the doctors preferred to keep
the status quo of uncontrolled euthanasia.
Whichever motives this people had, it is reasonable to expect they would
lobby with equal vigor for allocation of funds for PALS and their families
during their struggle with the disease, and to those PALS who wish to extend
their life by means of mechanical support.
I tried Nation Seniors Association, a powerful lobbying group with about
200,000 members. This is an example of its power: "Delighted by the range
and extent of initiatives announced for the seniors in this year's federal
budget, NSA chief executive, David Deans, who attended the lockup in
Canberra, believes patience has paid off." We know that David Deans last
year prevented passage of Zone 6 resolution 4) "That Federal Government
legalize Voluntary Euthanasia" to the national level. But when I approached
NSA to support our case for funding I was advised ALS/MND does not satisfy
NSA criteria, as this disease also affects people under the age of 50. Are
we right to expect AMA and other groups to support us? The opposition leader
is promising more funds for cancer patients and GST free funerals, but will
there be anything left for PALS? Many of them use up all their resources and
have to rely on goodwill of relatives and charities to survive.
There are only about 1200 of us at any one time in Australia. Each day 85
persons die from cancer but only 1 from ALS. Few votes. Forget them? .let
them live and die whichever way they can?
Vincent Celestina - 28 Village Green, Chirnside Park
Victoria 3116, Australia. Telephone: 61-3-9726 7407

Teusday, October 30, 2001

No right to die.
Right to die, and pro choice.
Not the right to die with dignity.
The Dignity in Dying.

Headlines and headings like this mean something to us, but may be confusing
to people who are not dying, who don't need to and don't want to think of
dying. And they are the ones that can make a difference. Of course we have
the right to die, whenever and whichever way is available to us, as long we
don't implicate anybody else.
The word 'dying' has nowadays a much broader meaning than."near death".
With advanced diagnostic and treatments procedures doctors can nowadays
often say to their patient: "Sorry, we did all we could. You have at most 6
weeks left.'' That is the moment when dying starts. And I have often heard
people complain that a certificate of 6 weeks or less was required for
admission to a hospice in some states in the USA. For PALS dying starts the
moment a firm diagnosis is made.

Dignity in dying - what it means to me. I want to die in the least odious
manner possible, on the way hurting the least number of people, be
remembered as a good guy. I looked at choices are available to achieve my
aims. Once I discovered a had some choices, depression left me. That
eliminated one choice -suicide, still - I have others which I will describe
as I go on living. I am lucky to be on the NET, most PALS have no choices
and are dying in misery and depression from DX to grave. And what of the
ones left behind?
Vincent Celestina - 28 Village Green, Chirnside Park
Victoria 3116, Australia. Telephone: 61-3-9726 7407

Thursday, November 1, 2001

The feeling of abandonment is something which bothers me a lot. When I was
diagnosed I did not broadcast my troubles widely, but had to tell my
relatives and friends I mingled with and corresponded with. Most people love
to receive mail but many hate to write. I have one sister still living in
Slovenia who never wrote to me, or answered a single letter in all 44 years
since I left the country. When I visited her in 1996 she proudly showed me a
bundle of neatly tied letters, she saved every letter I had sent to her. In
1983 I acquired my first computer and printer, and in December 1995 I
connected to the NET. Each time my list of correspondents grew until I ended
up with over a hundred people I used to write to at least once a year. At
the time of diagnosis with ALS, 6/2000 - 71 of them had e-mail. Easy, write
the body of the letter, change name of recipient and send, or leave out name
and send as BC or CC. (Only I know how many people will receive this.)
From the immediate family. My three children, their partners and the three
grandchildren attending high school all have e-mail facility, as does
Jeannie's son, his wife and grandson. Very handy as they all live far from
here. It takes my two daughters a good hour, my son 3 and a half hours, and
Jeannie's family 2 hours with a car. I reassured them we did not expect
from them any help as far as caring for my physical needs as my disease
progressed but would appreciate if they let us know regularly how they are
doing with a short e-mail. They would have come to that conclusion
themselves, they are all brighter than I, but I like to let people know
where they stand with me. When I lost the use of my dominant arm, and the
Bulbar symptoms, speech, swallowing problems started I knew my 'output'
would gradually diminish. So I sent out an S.O.S. - please write to me, just
a line or two, ignore my problem, let me know what you are doing. I may not
be able to write to you individually, maybe not able to write at all. But
even if you don't hear from me Jeannie will read your mail to me.
Only 5% responded. Perfectly normal behavior and no one needs to feel
guilty. My expectations were wrong. But I still feel abandoned - anybody out
there feeling the same?

PS- you will know when Jeannie sends you my tombstone epitaph - Vincent is
gone to join the Great Spirit of the Universe - but why not write to her?
Vincent Celestina - 28 Village Green, Chirnside Park
Victoria 3116, Australia. Telephone: 61-3-9726 7407

Thursday, November 8, 2001

PEG - Percutaneous Endoscopic Gastrostomy. A mouthful of words even for people without dysphagia. They describe the operation which nowadays is mostly a keyhole procedure. The stomach is sutured to abdominal wall at the site of the new feeding-mouth a bit below the sternum. A feeding tube is inserted through the new 'mouth' into the stomach. It is a silicone gastrostomy catheter with a feeding lumen and balloon inflation lumen.
Balloon is inflated with normal saline, and is required to hold the tube in
place even during the times of violent exercises like coughing. PEG is in
USA also known as G-tube.

The operation itself is not very threatening to me, but one can't help but
wonder what happens immediately afterwards, when reading some accounts by
people who went in for a PEG.
"I am back from my stay in hospital and now have a new friend "Peg". While
the stay in Bethlehem hospital was absolute hell, I am really glad that I
have a peg." Message Dec 3, 2000 - Died Feb 21, 2001
"To our surprise however, hospitals and hospital staff have very little
knowledge about them. Most of the nurses attending Colin have never nursed
anyone with a PEG." Dec 20, 200 - Died Feb 9, 2001.
And there was a mention of a recipient of PEG in a major Melbourne hospital
who kept the NFH (Nurses From Hell) file.
Complications. A silicone PEG should last about a year, but the strong,
acidy gastric juices can destroy the balloon, the one-way valve, or the tube
much earlier; some people had to change the tube within 2 months. Changing
of a PEG is a simple procedure and can be done at home. There can be
persistent bleeding, skin irritation, infection and granulation caused by
seepage of gastric juices past the catheter to the surface of the skin, and
the forces applied to the tube during feeding, washing, during sleep etc.
For me internal and external bleeding could be a major problem because of my
slow blood coagulation rate.

Monday, December 3, 2001

'People in glass houses---' As a trainee I nursed terminally ill cancer patients and later as nursing administrator I counselled other nurses doing similar work. There is little job satisfaction, few rewards. I did not like it, in fact 95% of nurses don't like it. And they particularly won't like to nurse an aged nursing administrator. A PALS with PEG, tracheostomy, and on mechanical respirator who has to be kept alive. No Advance Directive note signed (DNR). A 24 hour intensive care job. 'Make sure the skin on his elbows, back and behind does not break up, that he doesn't choke on his own secretions, that he doesn't develop hypostatic pneumonia. And it would not look good if the coroner found his spastic neck was broken'. The hospital that will look after me has a file on me since 1991 when they did all the workup on me for open heart surgery. Some nurses may remember me - others, now in forties and fifties may have done their postgraduate courses at the hospital I used to work in. They may hold the phone against my ear for a while to listen to Jeannie's sweet voice and the sounds of her harp. But I doubt they would allow me the Eyegaze system, the computer and e-mail facility to communicate to the world the stressful situation we were all living in.
Who is paying the bill?

Sunday, December 16, 2001

On June 21, 2001 was ALS/MND Internet Global Chat Day. A Respiratory physician was asked at what point vent (mechanical ventilation) is discussed with PALS. Both the question and the answer: 'When the subject is introduced
by the patient' were edited from the transcript of the chat now available.

What if the patient does not know the subject exists? 5% may learn about the subject on the NET, what about the other 95%? They die without knowing they had a chance to live on?

MNDA Vic knows but their Information kit contains no information on the subject. At least one member of MNDA Vic State Council also works for Victorian Government.

In the last 12 months MND Association of Australia wrote to every member of Federal Parliament, and every neurologist in Australia, to tell them about MND. Did they tell them about mechanical ventilation, and the costs involved to keep PALS alive by this method?

It is hard to imagine any neurologist not being fairly well informed about all aspects of this cruel but fascinating disease, including mechanical ventilation, even before they received that letter from MNDA. How many neurologists introduce 'the subject' to their patients after they give them the 3 - 5 year death sentence, or before they hand them over to palliative care?

Did you notice when a PALS introduces the subject the answer is usually given in a very quiet voice, as if the speaker was afraid Big Brother was listening? And in NSW some PALS reported overt hostility from their neurologists after introducing the subject.

Someone suggested his neurologist is paid handsomely for every PALS he talks out of going on vent. I would not go that far. Neurologists and other health workers involved with PALS are intelligent and compassionate people. There is a conspiracy of silence among them, but the orders must be from above, perhaps state or federal government?

Wednesday, January 2, 2002

With my arm failing fast I better speed up, I counted another 32 items I would like to talk about. Some like "Why would Greenpeace want me to die" may even be considered humorous. I wrote this last month, not funny. Care giving is a daunting challenge - "My exhaustion is beyond anything I could describe. I am snapping and going into rages at her on a regular basis. I am also openly resentful and have said many cruel and harsh things to her that I can never take back or make up for. I find it impossible not be furious, resentful, and wish this was over."

During the life of their illness most PALS will agonize over the amount of suffering their illness imposes on significant others. This is something few PALS and CALS dare to talk about in any detail, it caries with it too much pain and guilt. The physical, emotional and financial costs of looking after increasingly dependent PALS, sometimes for many months or even years can become an unbearable burden even for the most dedicated carers. The vows: "in sickness and in health" - or "for better and worse" don't work for very long if there is no health, no better - only worse, and worse, and worse. PALS are usually stuck; but many spouses, parents, children bail out and some go as far away as they can to avoid implied or open criticism: What a shame, leaving a sick one to die alone! Tiredness, sleeplessness, constant commitment, all giving no gains, no social life - later helplessness, resentment, anger, open hostility, wish it would all end, wish he was dead, help him die? Now he is dead - relief, but often mixed with guilt and depression. Not a good base to start a new life. Those who can talk about it probably feel better for it.

My Jeannie had trouble admitting anything of the kind could ever happen to her until she saw my roommate Peter, and later a social worker and a psychiatrist whilst I was getting my PEG at Austin hospital. Now she has no problems thinking of hiring outsiders to help her with my feeding, showering and dressing. As she puts it: "I am supposed to be your wife not your carer" And she is glad I decided to be cared for in a hospital when the time comes for me to have tracheostomy and mechanical ventilation. This time Vincent PALS will be running - to save Jeannie and her family a lot of pain.