I live with PLS and, as you may know, it has the same prognosis as ALS. After my diagnosis I decided that rather than sit around and wait I was going to live my life to the fullest that I could. For that reason I continued to do nature photography but now for the purpose of raising awareness for ALS. Very simply I live each day as if it was my last. I have a disease that limits how I do "stuff" but it cannot stop me from doing as I wish. This year I have travelled to Pensylvania, North Carolina, British Columbia and Newfoundland. World conditions permitting, I plan to be in the Masai Mara in Kenya in November photographing lions. Perhaps my signature comment says it best: "The first to go has no path. Only the followers do."
Angelo Sciulli, PPLS
Born 1951 in Skagen, Denmark, a small fishing town. My father was a busy fisherman, my mother at home tending to us four children. I grew up in positive conditions in a thriving town. After primary school, education as a clerk in an office overlooking the harbour.
The need for more thorough and formal education took to me to the city rhus. Fun and easy living, but a search for the depths of existence as well. Youthful exaltation over the promises of Transcendental Meditation, method to personal growth. Trained as an instructor of meditation - a few years in the mid-70s teaching in Odense. Meeting many interesting people, but no proper livelihood.
Then commencement of "commercial carreer". Shop assistant and selling vegetables and fruit in supermarkets for a couple of years. Having had an "airy" head, this work for sure grounded me! Onwards to the flower wholesale trade exporting houseplants to Sweden. Small promotion. Ten good years - good colleagues and many a merry gathering with customers and cultivators. I buy and renovate an old house during the recession of the mid-80s. Pleasant bachelor years, but never quite the playboy I intended to be!
1990 employed by the organic vegetable growers to organize a break-through in sales. My dream occupation. Sadly it only lasted a year. Then work with a company operating in third world-countries. Interesting job, travels to Africa. 1993 back to Odense and the houseplants, buying for the largest retail multiple in Germany. Hard work, huge buying power. Retired 18.4. 1996 because of ALS.
Life sweetened by encounter with Jutta. Much in common: philosophy and mysticism, travels to Greece, an enjoyable and gentle everyday life. Music: Van Morrison. Movies and good friends. Often holidays and weekends in summer house by the sea, an oasis, where you can let let it all hang out.
After ALS many travels, also in cyber-space. Experiments with so-called alternative means. Trying to solve life's puzzle, living for the present. Gratefulness over being a Danish citizen.
And the future? No fear and a wish for many a moment still. No bitterness, no regrets, only a grief in having to leave behind. But then, that's how it is, each and everyone his own destiny, some day maybe we will realize why.
The golden rays of the Sun fill the room and I am sitting here very
quietly with a growing feeling of happiness that spring is coming.
Well, I am certainly alive.
The other day wa had an interview with an applicant for a job as my
Jutta explained about ALS, how all muscles are paralysed etc.
She ended saying that the reason and the emotions are not affected.
The applicant said, 'Yes, but that is the terrible thing'. The young girl
apparently thought that I would be better off without the full use of my
I do not not share this opinion. I am quite satisfied being able to
think, feel and sense.
In fact, I think that this is what makes me a human being rather than the
ability to walk, for instance. Or the abillity to eat.
The young girl did not get the job.
My five years with ALS have been good for my patience, and I have learned
to seize the joy when it is there.
I have much to be happy about: The crow's feet around Juttas eyes when
she smiles, a bunch of tulips that good friends have given us, the birds
on the bird table - and simply being alive.
Perhaps I am even learning the art of living in the present?
ALS has also paralysed me to my very fingertips, taken away my voice and
robbed me of my ability to eat.
I will never be driving a Porche 356 B '61, sing in the bath or eat a hot
It took a long time to decide to say yes to using a respirator.
I thought so hard that I almost had a headache but to no avail.
On a spring day like this last year I realised that I simply wanted to
live. Live more of this uncontrollable, troublesome and wonderful life.
I got the respirator in August 2000. It has given me security, comfort and
a more healthy complexion. And yes, there is also the discomfort of the
suction apparatus, coughing and sputtering.
An American has sent some lines from a poem by Robert Frost:
The woods are lovely, dark and green
But I have promises to keep
and miles to go before I sleep.
These lines have become my motto. Whether there are many or few miles in
me, I do not worry.
But I have confidence that I will attain what I wish to do, and hopefully
fulfill my 'promises'.
My name is Laura and I am a Cals. My son has ALS. To learn more about him, just read this site. We cope with ALS by taking one day at a time. We believe in the power of prayer and practice it faithfully. This is how we get strength to face each new day, with its challenges. It is trying at times, especially when I can't understand what he is saying to me. We just go slow and work on it until the message gets across. He is very longsuffering with me (as I figure out what is going on) and I am longsuffering with him (when he cant tell me anything for laughing)
We laugh, we cry ( not often ) and we make it.
Laura McCormick, C/FALS
Thank you for the e-mail. I enjoyed reading your website and your personal page.
I am saddened to know you have ALS. It's a horrible and devastating disease. I was diagnosed in April of 1976.I was thirty -four, wife and mother of young children. The youngest four.
I had always been in good health and very active with family, church, job and friends. It took the Neurologists almost a year of extensive testing to make the diagnoses of ALS. I was having weakness in my arms and legs. I would drop things and fall for no reason.The neurologist was certain I had a brain tumor. When all test and scans were negative, then he started looking for neurological problems. I cannot tell you the horror and disbelief when he told me the diagnoses and prognosis. I was going to die in three short years and would certainly lose all my independence in few months.
The ALS progressed fairly rapid at first then begin to slow. Within three years I was paralyzed from the neck down. I went into respiratory failure in 1986. I was put on a ventilator and have lived on it all these years.
I live a fairly good life with the help of caregivers. I am still active in my church, do my shopping and visit friends. The one thing that has brought me through all of this is my faith in God. From the very beginning until the very last breath, I know I'm in His care.
I would like to share my webpage with you. It tells some of my story. I look forward to hearing from you again.
Irene Poindexter, PALS
I am 52 and live in Michigan. I was diagnosised with bulbar-onset in the fall
of '96. It will be 5 years soon and when I was dx they told me I had 3-5
years to live, and I am far from dying.I had polio as a child and was first
dx with post-polio syndrome. My speech is my biggest challenge but I'm still
talking. You have to get used to my voice and then it is easier to understand
me. I still walk but need a hand to hold when I go out, I think it might have
something to due with my polio. I have no trouble eating or breathing. I
tribute my slow progression to God and my positive attitude. Take care, God