November newsletter with walk - Sacramento - ALS Association

Page 19
Lines from Lee… A 22-year ALS patient
Living with ALS
Lately, there have been news articles and events about ALS
suicide or physician-assisted suicides. I, myself, firmly believe in
a patient’s right to make their own decisions affecting their life
and death.
But I also believe there are more reasons for living than for dying.
The most important reasons for living are family, friends, important
events in our lives that we want to be part of, and goals we
want to accomplish in our lifetime.
I have read about how patients say they want to spend as much
time as possible with their family, spouses, children, and grandchildren.
They want to be around to attend weddings, graduations,
birthdays of grandkids, and to accomplish important goals
in their lives.
Upcoming Events
Over the past 20 years, I have been afraid of dying. Not a day goes by that I do not think about it. I
have spent precious time doing so much worrying when I could have spent that time enjoying my life
and those I love. I am not as afraid of dying as I am afraid of dying and leaving my family.
Patients used to receive a 2-5 year lifespan after diagnosis. Now, there are patients who have
slower progression. 10% of ALS patients live 10 years or more and 5% live 20 years or more.
For you, as a patient, to be in charge of your life or death, it is important that you tell your family and
caregivers your wishes. You need to create an Advanced Directive Document or Living Will so everyone
will know what you want to do when you are unable to communicate.
This planning is the best way for you to control your own destiny whether it is from feeding tubes,
nasal ventilation, or tracheotomy. Each one of you will have to make your own individual decisions
about how you deal with the ALS diagnosis and how you wish to live with it.
All you, as patients, need to know the importance of knowing about available treatments and options,
and that you do not have to fear living in pain or suffering from depression. There is help out
there for everyone no matter what stage you are in.
Personally, at this time in my life I plan on going on a tracheotomy and spending as much time, for
as long as I can, with my family and friends.
It is up to each of you to make that decision for yourself because we will all be there eventually.
Life is just too precious to give up!
PALS Lee Jared
Note: Most of these comments are my own feelings and some are from various articles I’ve read,
including information from Mary Lyon, R.N., M.N. and Walter Bradley, D.M., F.R.C.P. from the University
of Miami. In addition, I also get opinions from other patients’ life stories and the Internet.
If you have any questions or suggestions for future articles, please e-mail me at wayland55@comcast.net
Support
Upcoming Events!
Sacramento Support
Group
&
National Caregivers
Month Celebration
(Break-out sessions +
Respiratory Therapist
Specialist)
Saturday, Nov 21st
2800 L Street
10:30am-12:30pm
Chico Support Group
Wednesday, Nov 18th
Enloe Rehab Center
340 West East Avenue
4:00pm-6:00pm
We will have Guided
Visualization and
Breathwork training
Jan Condon O.T. will be
teaching safe transfers
Sacramento Support
Group
Carlton Plaza
1075 Fulton Avenue in
Sacramento
Wednesday, Dec 2nd
2:00pm-4:00 pm
PALS & Caregivers
Holiday “”Brunch” themed
Party
Sacramento Support
Group
Sutter Cancer Center
Saturday, Dec 12th
2800 L Street
10:30am-12:30pm
Holiday treats will be
provided
For information on please
call (916) 979-9265