Sandy at the parkThis page poises the biggest challenges and the biggest hopes for this site.  I’m not entirely sure how to fully address the issue of healing or hope.  Each of us has this challenge in front of us and each of us must find our own way to discover how to heal and how to hope.  In remembering my Mother, I both celebrate and suffer, recalling her smile, her ways, her compassion, and her love.  It is a humbling thing to be gifted with such a presence in one’s life and to lose it is hollowing and terrible at its worst and strengthening and empowering at its best.  I feel all of these things and many more.  I watch as my sister, Wendy, and my Father, struggles with these feelings themselves.  ALS brought a horrible void into our worlds and we are trying to master the journey without our Mother, Partner, Lover, and Friend. 

I had hoped that this page would be the most revealing and most inspirational to those who have been touched by Lou Gehrig’s Disease, that it could offer glimmers of hope to those that suffer with it, or to families who are living in the shadow of it now. 

 I will try and build this page with the details that are sent to me by the ALSA and the ALSTDI, adding to it the research and the findings that develop in the fight to end this disease.  For now we have the facts to contend with:

– There is no known cause, prevention or cure for ALS

-Over 5,600 people in the U.S. are newly diagnosed with ALS each year (15 cases per day)

-Approximately every 90 minutes, someone in this country is diagnosed with ALS and every 90 minutes someone dies from it

-30, 000 Americans may have the disease at any one time

– The life expectancy of a person diagnosed with ALS averages 2-5 years (my Mother went through nearly a year of tests after my sister, father, and I noticed minor slurs in my mother’s speech and stumbling in her step, before she was diagnosed and it was nearly 2 years later that she died from its complications)

-ALS is costly to families, not only is there the emotional trauma to the patient and family, there is the constantly evolving economic costs of the person’s degrading loss of mobility, speech, ability to eat, swallow, the dietary changes, the changes to the living environment, the special needs to sit up, sleep, get into bed, use the bathroom, wash, and ability to be transported and supported to medical centers, hospice care, physical therapy.  There is the nursing costs, the medical expenses, the equipment, the need for families to take of time from work to cycle and provide constant care and support.  Figures range in upwards of $200, 000 a year in advanced stages of the disease on families that could never have anticipated the costs. 

– few drugs are developed and ALS is considered an ‘orphan disease’ because the lack of being able to diagnose it, the steady and progressive symptoms and the nerve loss evolution, and other factors make the development of treatments difficult to produce and expensive to research; many drug companies and medical institutions can’t afford to produce treatments.  The few drugs and treatments that have been developed offer little in the way of extending life expectancy or of alleviating symptoms, some only offer a few months of extended hope.  Many families even turn to drastic and alternative measures, holistic treatments, and any other possibility that might offer a chance of relief.  My mother wrote in her last journal “Stay with homeopathic doctors and natural ways of healing” because of her experiences.  She was tired of being poked and prodded, of the vastly different treatment at the hands of therapists, hospice practitioners, doctors, nurses, and other members of the established medical community.  She appreciated them and there we many who were very special and allowed her the dignity and honor of being more than a patient.  She also felt the most hope from moments with holistic doctors and with natural treatments.  I was quick to add herbal tea and traditional teas to her diet, when much of what she was consuming was liquids.  Yerba Mate was a surprise favorite for its ability to offer a energy boost.  I loved the feeling that I could help.

For those of us who survive, I think the deepest wish is to be able to offer hope to those who are struggling, to try and do something that can make the journey easier, or offer a window to look out and to have faith that a cure will come and a life can be saved.  No matter how deep the despair, the one thing that can never be put down is the possibility to hope. 

As supporters of those who battle with ALS, it is also important that we preserve and defend the fighters dignity, their ability to define themselves, and to acknowledge their spirit, character, and choices.  We must never forget to respect the person who is fighting, never forget that it is their life that is being fought for, their life that is being changed and torn apart, their choices that everyday are being marginalized by the disease and daily taken away from them.  We need to work everyday to empower their ability to make choices about their life and to help them live their lives to the fullest, to hear their minds and help them to communicate their feelings.  We are there to celebrate them and cherish them in their struggle.  This is also a function of preserving their rights as a person, as an individual, as an equal. 

Hope can be a fulcrum to healing and can change the tide of this war.

I hope we can find a cure.

I hope my family can heal.

I hope love and compassion is greater than this disease.

I hope we can all find a way to make a difference.

I hope.

One response

11 01 2011
Renee Parker

Thanks for all you do!!

Leave a Reply to Renee Parker Cancel reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: