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When my mum was diagnosed 2 years ago i knew nothing about this disease at all.Information was very scarce, until I got myself a PC when mum couldn`t
speak anymore. The idea was to use my PC as a means of communication with her. But then I found all kinds of information about ALS on here. Reading Doug`s journal and ALS survival guide gave me all the answers I had been
looking for. I have 2 sisters and 1 brother, my mum is only 56, never smoked, always very energetic. She has had breast cancer twice. Survived both times even though one of the cancers was during having ALS.
How do we cope? Sometimes with great difficulty, but sometimes with great ease. Having a very close family is a great asset when such pain is affecting each and everyone
of us. Mum is the best at being positive, whether she`s falling down or choking or salivating uncontrollably.....she always has a smile. My own
personal opinion is the more I find out about this disease, the better I feel I can handle what may occur next. However my brother feels differently. He doesn`t want to know what`s happening, which i respect, but he is going through such pain. Pain of a different kind. It`s so difficult to explain how anyone truly feels without going to pieces.
Carri, FALS
10/07/2001
HI JOHN, I WAS DIAG. WITH ALS IN 97,AND ONLY BY THE
GRACE OF GOD , HAVE I BEEN ABLE TO COPE.
I HAVE A WONDERFUL FAMILY, AND CHURCH FAMILY. I AM 71
YEARS OLD AND HAVE HAD A GREAT LIFE.
GOD BLESS,
BECAUSE HE LIVES, I CAN LIVE
BETTY HOWARD, PALS
10/13/2001 The day after my ALS diagnosis (7/98), Mary and I were walking around our neighborhood, deep in shock and dismay, when I glanced at a box of mixed paper out on the curb for recycling day. We got two or three steps beyond it before I stopped and went back to look again. There on top of the box was a little square post-it note with "Need to Enter" written on it in bold magic marker.
This affected me like waking up, like stepping out of the theater after a movie, like the pressure in my ears clearing. I laughed and yelled and hugged (my now fiance) Mary. That is when I first realized that being diagnosed with ALS was also a real blessing, in addition to whatever else. What a miraculous opportunity this was "to Enter." To Enter my own life, my own heart, my own spirit, my own illness, my own healing, my own journey, my own joy, my own death, my own breath, in this very moment, and this, and this.
Some Buddhist master once said, "If you want to be truly happy, get diagnosed with a fatal illness and live." Now I know what he was talking about. The possibility that I might die soon has heightened my sense of appreciation for what I have now. Of course, no one ever said you get to live forever. This moment brought the wonder of human life into sudden, sharp focus. It is just this. We can realize it in any moment: just this, just this.
Just this,
so sweet,
a plum by the trail.
Physically, emotionally, I am struggling with this dreadful disease like every PALS I know, and yet I am filled with hope. Help is on the way. Whether in two years or six, treatments, a cure, and recovery therapies will be available. Help is on the way. One of my objectives is to be alive and as healthy as possible when it gets here. Keeping my spirits up, keeping hope alive, is perhaps the most powerful tool I have in realizing that objective. Supplements, physical therapy, complementary and alterative medicine, meditation, and a little healthy denial all play roles as well. I may again power-stroke a sea kayak through a school of leopard sharks in Drake's Estero; I may again grunt a 30-pound pack over an 11,000 foot pass, 3 days into the high Sierras.
People sometimes ask me how I manage to stay so positive in the face of ALS. I say why not? I have ALS now: that is my condition. But that's all it is--just another condition. All life is conditional and always has been. We have brothers and sisters who are born blind, or severely disabled, or into brutal, starving poverty. Others are imprisoned for life for things they didn't do, or just because of their beliefs. Can these people love life? I think so. Should we kill babies born with Downs syndrome or fetal alcohol syndrome? Of course not. Why not? Because we know theirs is just another condition. This life is a gift. I'll take it however it comes.
Heart
Mind
Body
Spirit
Four Gardens
Prepare the soil
plant carefully
water
Tender the shoots
uproot weeds
care
Cut dead wood
harvest joyfully
work
Accept nourishment
Give Thanks
This is an invitation to join and/or to participate in "The ALS Research Mail List".
I started "The ALS Research Mail List" for two primary reasons, and for two audiences.
1. For the ALS medical community. The idea originally occurred to me because the fine people at my ALS clinic frequently have not seen research items I read on Bob Broedel's ALS Digest and elsewhere. They simply don't have enough time to read through all the Digests and ALS websites looking for the research tidbits, and have stopped reading regularly. I am reading them already, I thought, so why not be selective for them? If my mailings are just ALS-relevant research articles, they might find time to read what I send. By doing so I hope to cross-pollinate the important research going on in so many places, and to disseminate clinical research as quickly and broadly as possible. This is why I want to enroll more ALS researchers, more MDs with ALS patients, more MDs at ALS clinics, more neuroscientists.
If you are a PALS or CALS, I suggest you ask your family MD, your Neurologist, your ALS clinic MDs, and/or your clinical study MD to sign up for the ALS-relevant research mailings. See "TO BE ADDED TO LIST" below for how to do this.
2. For PALS and CALS. It is my belief that the best thing a person with ALS (PALS) can do for himself or herself, while waiting for the breakthroughs that will come, is to be full of hope. Patience is difficult under these trying circumstances, but help is on the way. Remaining ever-hopeful helps me to enjoy my life, in each moment, as much as a hopeful person not facing ALS. There is a lot of promising research going on in many different areas of investigation. Even when I can't understand the science, these articles and abstracts remind me that PALS have reasons for hope.
I am doing this in my "spare time", by myself right now, and I have a limited capacity to find research and to validate it as thoroughly as I might wish. I can only offer my best judgement about what is "legitimate" enough and relevant enough to be mailed out. I will include articles from The ALS Digest, ALSA, Ride For Life, ALS-Therapy Development Foundation, Hope for ALS, etc., and from medical search sites like MedLine, The Doctor's Guide, and Health Scout.
I NEED YOUR HELP! Please email me abstracts(preferred) and news articles that you find. Submissions must be highly relevant to the ALS research community, must be from a credible source, and must include at least one researcher's name and location, so that interested parties have a way to get more information.
I am a PALS, Dx 7/98, upper limb onset, relatively slow progression. I am 46 years old, feel blessed in so many ways, and live in El Cerrito CA, USA, near Berkeley, in the beautiful San Francisco Bay area.
Any comments, recommendations and submissions are welcome.
Just click my name, to email me and to be added.
Stay hopeful, be happy, stay strong, Will Hubben, PALS 10/15/2001 I'm sorry it has taken me so long to respond to your e-mail. I actually had mixed feelings about doing this because there are days when it is just so incredibly hard to deal with the loss of my Stepfather. I know each person has different ways and amounts of times that it takes to learn to cope with the loss of a loved one. Knowing that the disease you have is terminal does not change the fact that no matter how hard you try to prepare for it, it is still a shock when death comes.
I lost my Stepfather to ALS on February 8, 2001. I believe he knew his time had come because he had my Mother, who was his caregiver, go to bed and said he would call her when he was ready to go back to bed. She was always afraid he was going to fall. He never woke her. She must have only slept a matter of minutes it seemed, and he silently slipped away into the night. We believe this is what he wanted. He had always taken care of her and we believe he could not bear that she would have to watch him become dependent on her.
When his speech was affected Mom would often have to interpret the sounds he made or he wrote us notes. He even wrote me that he remembered the first time he met me. But even with his speech nearly gone I could clearly understand I LOVE YOU. With no words being spoken I could see the love reflected in their eyes and these are memories and the things that have helped me to cope.
I'm sure I will never understand why something like this happens to someone who is so good but I believe it must be to make us stronger.
If I have anything to offer to help you cope I would offer hope. I would tell you to believe, to have faith. I'd tell you to be angry, be hurt, to cry. I would also say to focus on where that anger comes from and know that it is not with our loved ones being ill but the disease itself that is taking them away from us. The pain of not being able to stop it from claiming them a little bit at a time. Cry for what you can't change but also shed some happy tears for the memories that it can't steal from you.
I guess I'll close with this last thought, NEVER .. EVER ... listen to any one who tells you, "Just deal with it. There is nothing you can do to change it." Believe me they are wrong. I cannot bring back a good loving man who was a Father to me but I can Walk in The Walk To D'Feet ALS in his memory (which I did). If I can offer simple words of encouragement to someone else, help them to cope, then He is still with me.. and my HEART SMILES instead of cries.
ALS may touch our lives but we have the power not to let it destroy us.
May God be with all of you. Charlotte, FALS
10/19/2001 First let me start by saying that, that's the one bad thing about
e-mails...when someone reads an e-mail they read it how they want
to read it. Some with emotion, some not. I'll start by saying now
that I'm not angry, I'm frustrated like Carol. We have both seen our
husbands suffer and we don't think anyone else should suffer. My
husband also has ALS dx. Nov. 97. We see a team of specialists at a
big well-known hospital. During this time, we too have felt that
they are not giving us the support we need. The Dr., doesn't tell us
anything new, because there is nothing new. The O.T., has just filled
out paperwork with us, takes blood pressure, EKG and weighs him.
The Speech Therapist, looks at what he started with, has now and
offers some information i.e. contact this man for your communication
needs (part of a Foundation). This man...showed us laptops for which
Rich didn't want to use, couldn't use or didn't want to waste his
time with. We told him 4 times that we wanted something for Rich to
use with the computer he has at home. Nothing. No company names, no
addresses, no literature to research. We along with Carol had to do
all the leg and phone work. Shouldn't happen. The Nurse, from the
way we saw things, the nurse only saw us for when Rich needed blood
taken. Didn't ask us if we had any bowel questions, bedsore questions
etc. Home Liason...only saw her at support groups. Didn't know she
came out to your home to eval your needs. Social Worker...was o.k
until we didn't see or hear from her in 6-7 months. She didn't even
put anyone in charge of us. This is what frustrates me, Rich, Carol.
I feel I'm lucky, because I come from a medical background and I
know a lot of the medical jargon they throw at you, I know how to
use a lot of the equipment they give us, I know what wheelchair will
be best for my husband. I can only imagine how hard this is for
someone that doesn't know what to ask.
All I can say is that we all need to educate ourselves the best that
we can so we know what questions to ask. And, Support Staff...answer
their questions with respect, not "what are you asking that stupid
question for." That's the feeling I got on several visits.
I hope to help this team to the best of my knowledge of being a
caregiver and medical profession. I feel that a lot of other things
need to be discussed or just information needs to be handed out
about choices we as patients should have and family should have. Not
once during our 4 years has Hospice been brought up! Rich has been
using Hospice for 6 months now and it's great! Now traching was
brought up and feeding tube was brought up, but nothing about Hospice.
And how many of you know that you can donate spinal cord tissue and
brain tissue? Ask about it, it's the only way we're going to get a
cure.
Our team needs more work so that we can help the patients better.
Join me and Carol and speak up. Thank You and God Bless. Lisa Crane, F/CALS
10/24/2001
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