There was a woman with ALS, Pam Callahan, who attended a matinee last week. She is 48. She came on a rolling type of stretcher with four friends who were attending her. She is on a respirator which allows her to breathe. This is called “being trached,” meaning you have had a tracheotomy. My character in the play has specifically requested she not be “trached.” Pam did the opposite. She said, “I am a mom of four boys, 4, 12, 9 and 6 so I chose to have mechanical help.”
Pam Callahan
Pam and her sons May 2007
Even now Pam is beautiful but look at this photo of her before she got ALS!!!!! As you can see from her letters below, she has a powerful, funny, deep spirit. Colin Hanks was with me when we met with Pam after the show. It was an experience I will never forget and it is absolutely informing my performance ever since then. I cannot get her presence out of my mind and my heart. I have a line in the play, “My mind is unaffected by the illness so that I am able to fully experience the process by which my body is becoming but a flaccid carcass (said with irony, not self pity)”. Pam is the absolute, perfect example of this.
There is, as you can see, a screen in front of her and she “writes” messages on it by focusing her eyes on letters of the alphabet. The machine can then read what she has written aloud. Amazing! Here is what she wrote:
“Congratulations on your nomination. It is wonderful to see you on stage. It is an absolute honor to meet you. Thank you for providing me this opportunity.
I hope you realize how fortunate we in the ALS community feel to have you representing us in the play. It’s lack of awareness that causes problems ranging from proper diagnosis to adequate government funding. Now, war veterans are developing ALS at a rate 60% higher than average. But just try to get statistics from the government…Alas they have finally decided to cover affected vets calling it a service related illness. Because it is occurring during both peace and war times we wonder if it is vaccine related?
Do you personally know(n) anybody with ALS? We are celebrating the 70th anniversary of Lou Gehrig’s famous farewell speech with all major league baseball clubs across the nation on July 4th. Locally, we will have an ALS BBQ. Would you kindly autograph a playbill for the auction and one for me? Thanks.
Then, yesterday, she sent me this letter:
Dear Jane,
I had a fantastic time yesterday, and to you, Colin, and the cast, I say Thank You. As a full-blown ALS patient, I have experienced almost all aspects of the disease. I must say, you are spot on with your portrayal of an ALS patient. Phenomenal!!! Dr. Bryant reached into my soul and stirred emotions and memories that I had tucked away as I experienced the rapid progression of Lou Gehrig’s disease. Surprisingly, it was extremely cathartic. You elegantly brought the public light and insight on this dreadful disease. For that I thank you.
I love the juxtaposition of Bryant’s journey with that of Beethoven and Clara and Mike. Ah, I guess you saw it already so I will just say the cast was terrific and you were brilliant. I only wish the show had a longer run time. I would love to bring others to see it (as if I am going to strap them on my lap and wheel them through the tunnel- “I am the go-girl”).
I can’t thank you and Colin enough for taking the time to meet with Thelma, Tracy, Joanne Terry and me. It was an absolute honor. I thoroughly enjoyed our conversation. You left me much to think about– fear, the kids and your spiritual advisor whose name I forgot. I would love to have her name so I can read her philosophy on these matters. Lord knows I need all of the spiritual advice that I can get!
Enough of my inane prattle. I am also emailing my comments that you requested. I apologize for not getting it to you sooner. I was exhausted. Best wishes on the nomination, you certainly deserve it.
With the utmost salute and respect,
Pam Callahan
PS Stem cells will be a huge part of a cure/treatment. They are starting “legal” testing now, thanks to President Obama. I’m trying to get into these programs.
Theresa Murphy
Jane, WOW!!! I am a 45 year old mother of 2 and I think that could be me in 3 years. Pam Callahan has inspired me to appreciate all that life is. Bless her and you for bringing her story to me.
Sandra
I cried as I read the email from Ms. Callahan. And, to think she wrote this by focusing her eyes… Thank you for sharing this with us.
Bonnie Fenton
I have been reading this blog since you started… and certainly this is the most moving — my eyes filled with tears… how fortunate you both are to have met on this journey!
I saw the play couple of weeks ago — and this brings it even closer to my heart! Please let Pam know that she is truly one of the heroes of this world!
My love and prayers of finding peace and healing even when a cure might be far off….. thankfully stem cell research will be able to move forward now and there is hope for all……
Timothy Dougherty
wonderful post Jane,
Family is one of the most important things in dealing with physical problems of life,it is the mental shape of self. But in my case I am alone and that can be a new way of seeing medical problems and the self. Our life is not always something we can control or can it be controlled. I have my mind and as the wonderful Pam does , I grew up living in a family with medical problems, like so many others and worked hard to stay fit and well but sometimes life is the problem not us. Good to see the play creates a view of a condition for a light to shine on a human condition more that a just a medical one.
Jay
Wow..thank you for sharing her letters with us. I am glad she has such wonderful friends that made the experience possible. What a corageous woman to make the decision to live and be here for her children. I can only imagine how easy it would be to allow self-pity to take over and decide differently. It helps me to review my own fears and worries about the potential for pain and struggle, be it my own or someone I love and rethink how I might choose to handle it.
Thank you as well for sharing part of yourself on the blog. I saw the show and loved it, and it is an interesting inside view reading your thoughts and experiences. I have enjoyed it very much.
Carol Liller White
I know of ALS through our neighbour Frank Motley who died in 2003. Since then, I have come to know of so many everyday heroes such as Pam, Krista Sauer who was diagnosed at 24 when she was pregnant; and my friends Melissa Nightingale, Laura Stanley and Kassi Figueroa, who carry the familial gene for ALS. Then there are the men in my life-Don Koenig (and his wife Carmen Velez) of Angel Hands for ALS; Steve Saling, Dave Carroll and Ken Patterson, Kenny Alber, Jim Thew, Ken Timmons (and their wives, lucky ladies). I’m fortunate that I’ve only lost Frank-so far. But I’m going to lose everybody that I’ve listed, plus so many more that I haven’t, unless a cure is found. The late, funny, random Stephen Heywood is another who started me on my quest to be ‘one more’ non-ALS person to want a cure.
Thank you for seeing Pam. You grew ten feet tall that day. ALS is not incurable, only underfunded.
With my best and most sincerest regards,
Carol Liller White
Seminole FL
Bill Hillman
Jane, I saw the skit on the computer and it is over the top. Wish I could have seen it in person.
The blog and story about Pam Callihan is overwhelming. I’m so glad she was able to see the show and meet with you.
New York is going to miss you when you leave. We feel that you beloing to us now.
B
Marzena Tarka
Dear Jane,
So good you wrote about Pam’s visit. I was moved and glad that you gave Pam a chance to meet you.
When I was a 13 I saw you in a movie for the first time. You catched my eye – it was not only the way you played, buy also your magnetism. After many years I still wonder how did you manage not to get lost in Hollywood’s egocentric world? Everything you do you put 100% heart and it is so natural, no star’s behaviour, just devotion to many important matters. You still stay both strong and sensitive.
Best regards
Marzena (Poland, Warsaw)
PS. Pam – if you are reading it – you are a very strong and still beautiful woman. I’m sure you will cope everything as you deserve it. Your strength is also our strength, because you prove us that we should take each new day with a smile even if sometimes it’s difficult.
Karen
What an inspirational lady. I hope by doing your play that people become more aware of the disease and more research is done to look for a cure. How amazing is technology, however, that they can produce something which allows her to get a message through to you. If people can invent something like that, surely they can help prevent or cure such a dreadful disease.
Morgan Paige Fisher
That was amazing! I can’t imagine how touched you must be by your meeting her. She sounds like an amazing lady and a trooper at that! It is devastating how fast this disease can take over your life though. She sounds like she tries to keep her spirits up, which is unbelievably amazing.
Irene
Ms Fonda – I’ve been a big fan of yours since I heard you speak at Kent State some 38 years ago. Events at Kent in 1970 changed my life. Some of the things you said made me think a lot about my life and my beliefs. Over the years, I’ve followed your career and life with great admiration. And today’s letter from Mrs Callahan truly moved me. She’s such an inspiration, as you have been. Thank you.
pris
I know of many people with ALS. I helped to manage their care in our ALS clinic. My first patient, decided to have a trach and was on a ventilator at home. He was a plastic surgeon with a wife who was pregnant when his disease was diagnosed. Like the perosn you met, my patient learned to communicate via the computer. That was the only voice his child knew. As I came to learn, these people are my heros. I learn a great deal from each person, they live their lives to the fullest. ALS is a terrible disease but each and every person I met I came to liove. Your character is an inspiration to many.
Carolynn
Hi Jane- I’ve been reading your blog for a while, and admiring your role in this play, dealing with a topic which can be so horrific. ALS hits home for me and my family- my uncle has been living with ALS for 25 years, which you probably know is very rare. He has written a short book about his journey and his faith (christianity) which he wrote with a similar device to Pam’s computer. I’m 28, so I don’t remember my uncle before he was in bed, unable to walk or speak. So it’s been absolutely indescribably wonderful to be able to hear his word & thoughts through this kind of technology. If you ever have an interest in reading something he wrote, I’d be happy to send it to you. It’s thought-provoking, even if one doesn’t hold the same religious beliefs that he does- his writing is beautiful and descriptive.
Thanks again- I wish I could come see your show. Best of luck with the last few weeks!
Carolynn L. Sween
Waterloo, IA
Mary
thank you pam for allowing us a glimpse of your life and to jane fonda for sharing this with the world being in the middle stage of als myself im glad to see much needed exposure to our cause i urge everyone to explore als more and do what you can because you never know when als may be in a family or friends life.
Sharon Caruthers
Thank you for meeting with Pam. As a fellow pALS I am happy for all awareness of ALS. Those of us unhappily unable to make it to you play hope that in the future a movie could be made of the story. I read today that ALS is a the bottom of the list for the National Institute of Health funds. Even Attention Deficit Disorder gets three times more funds than ALS. 70 years after Lou Gehrig’s speech there is no known cause, no cure, no treatment. Thank God for technology that lets pALS like Pam at least communicate. Thank you for spotlighting her story.
Sharon Caruthers
Dana
I know all about ALS. I learned about in my teens as Pams children are now learning about it. I have the familia type of ALS in my family and have had 9 family members pass away from it. I know in my heart and soul that the cure is out there just wait to be discovered.
Pam you are an inspiration to me to be stronger, Thank You.
Glenn Hall
Dear Jane and my dearest friend Pam,
My mother( Joan Hall )) who passed away in August of 2008 was a member of the same support group of Pam Calahan. She has always been an inspiration to me. My mother and Pam always had a connection, and I believe it was Pam’s love for others that made my mother’s time here on earth so much more special. All I ask is that you pray for my friend Pam. She is a special person with a special heart. Thank you Pam. I thank you also Jane for “PLAYING” the part, it is so important to make people aware of this disease. I pray for a cure for Pam and others who are going through this debilitating disease. Thank you all for your efforts.
Glenn Hall
Kelsey
Oh wow, God bless her. She is so beautifully. It is a shame to see her like that, but she seems to have a positive attitude and good spirits. Good for her!
Amanda
Whoa, that’s intense. Pam clearly has a strong spirit, as is evident from her remarks to you and Colin. I can’t imagine being the mother of four young children and having to cope with a debilitating disease such as ALS. I applaud her for continuing to be as active as she possible can. That’s amazing.
Thank you for sharing Pam’s story with us, and the photos, too. Prior to meeting Pam, had you met anyone else with advanced stages of ALS?
Best,
Amanda
kathy
Ms Fonda,
Thank you for putting another famous face on ALS. All of us affected, one way or another, by this awful disease hope that the New York spotlight will shine out farther and get more attention focused on its mystery and absolute cruelty. So many vibrant, talented people lost to it; so many families devastated; so many opportunities missed. We hope you’ll continue to use whatever resources you have to push for education about ALS and funding for research.
Pam Callahan is a beautiful example of the many people living with ALS and what they endure every day. She’s a gallant general in the army; let’s get her some more troops!
Beth Furber
I am the caregiver of a 39 year old man with ALS who lives in New Hampshire. He has had this disease since 01/2001. He is married and has a 6 year old son. He has full blown ALS as well. He is on a trach and talks w/a plexi glass letter board moving his eyes from letter section to letter section to spell out his words. He blinks for yes, stares for no & grinds his teeth if something is wrong. He is still very active.
He skis & hikes w/the help of many dedicated friends and family. We also go on many trips to Virginia and Lincoln NH to visit his family. I just love him dearly! Not only is he my patient, but he is my friend.
Thank you for your inspiration Pam for those with ALS along with the many people that care for them.
Beth Furber
Michael Lavigne
My name is Michael Lavigne and I too, have ALS. It’s great what you are doing to help raise awareness of this devastating disease. Ironically, I’ll be turning “33” this May 22. Thank you Jane and Pam.
Marilyn
Wow, I am in tears. What an amazing person she must be. I have heard of ALS, but am not very informed on it. Thanks so much for bringing it to my attention. It is so amazing that you took the time out to meet her, it shows that you too are an amazing person. Hooray for advancement of stem cell research.
Glenda Patterson
Thank you for sharing this story, there are many people who do not know what ALS is. I was one of those people until Novemeber 2006 when my husband was diagnosed with it. Ken is a Veteran, former firefighter and a Safety Engineer for NASA and at age of 38 was told he has 3 to 5 years to live. Ken says he is “Living DESPITE ALS” and I am thrilled to know Pam has the same attitude. It is PALS (People with ALS) such as Pam, Steve (who is building a residence for vented PALS) and Don (who with his wife Carmen travel the US to take “Angel Hands for ALS” to families as they encourage them to continue the fight) who inspire me to be a better person. It is people like my husband, who drove his wheelchair 940 miles from Orlando Fl to Washington DC to raise awareness for this disease who inspire me to be more than I ever thought I could be. To all of those working to raise awareness for a cure I say thank you…and to all of those fighting ALS you are a hero for your strength, courage and determination. ALS may take away your speech…but it does not have to take away your voice.
Ms. Fonda, Thank you for lending your voice to all those who can no longer speak.
Glenda Patterson
Titusville, Fl
David Ferguson
Dear Jane,
Firstly, thank you for doing the play – ALS, aawful though it is – is still a ‘Cinderella’ illness, in that relatively few people contract it, so the drug companies (who fund most medical research) largely ignore it. Research is therefore funded either by Governments or by charities, and both sources require as much publicity as they can get to improve funding, either by public subscription or by public pressure.
Secondly, I’m in admiration of Pam Callihan.I was dx with ALS somewhat over a year ago, and when I read of her strength and determination it helps me in my own down moments. Thank you for publishing her letter.
Finally, I wonder whether you’d considered taking a fuuller role in, for example, the ALS Association, to help promote the cause? I have to be honest with you and say that, being British and living in London, I’m more familiar with the UK equivalent, the MND Association – but I know how much they benefit from having high-profile people (such as Sir Stehen Hawking, and the late David Niven who died of ALS) associated with them, and I’m sure ALSA, like MNDA, could use all the assistance it can get.
With kind regards.
Colleen
Jane – thank you so much for sharing Pam’s story with all of us. She is truly an inspiration, a hero. My dearest friend’s cousin lost his life partner to ALS and she shared the incredible struggle this disease took on both of their lives. Pam’s story has brought tears to my eyes and my prayers go out to her and her family and friends. I’m sure you will always remember that meeting with her. Again thank you for sharing Pam’s words with us.
Sarah Kalail
Hello Jane,
So good to read your segment on Pam. I like Pam, also have ALS. I am 49 years old, married and have 3 sons and a grandaughter. I know someday in my near future I will be faced with many difficult choices related to my illness. Pam is an inspiration.
I have always admired your conviction through the years despite the social pressures. Thank you for your honest portrayal of the struggles patients like us are facing!
warm regards,
Sarah
Karen Letendre
Thank you for raising awareness of ALS. My husband was diagnosed with ALS in 2001. He is one of the fortunate that can still speak and breathe on his own. We have two children whom he wants to be here for. So many people still do not know what ALS is. We need all the help we can get to raise awareness and research $$$.
Jud Tavill
Jane,
I am so pleased that you were able to spend time with my dear friend Pam. She is indeed a wonderful woman and I think meeting with you and Colin was a true gift for her. I blogged about her as well and created links to your blog,show, ALS-TDI , etc. I’ve shown some photos of Pam through the years with her indelible spirit to live life as well as the impact she has had on my family, in particular my 12 year old son. http:// http://www.juditavill.blogspot.com
The beauty of the internet is that we can share our thoughts and passions with people that would otherwise never hear our little voices…You,however, have done a wonderful thing by bringing the horror of ALS to the public eye. I praise you and thank you.
Judi
susan k
so moving- wonderful that you could share this with everyone –
it informs me as well –
Hannah Castellaw
Pam Callahan. Heroic. Reminds me of my aunt who has been dealing with MS for over 20 years. She can’t walk anymore, but maintains her gym membership for when she gets back on her feet. And my father who has been a paraplegic for 26 years, almost died several times, hospitalized for months at a time, but still wants to get up everyday and make or do something. And there is my mother who even in late stage Alzheimer’s wants to still take care of my father and everyone else. They just won’t quit. Heroic.
It is heroic when people don’t just give up. It is heroic when people speak up and advocate for others.
Your blog inspires me everyday.
Love to all,
Hannah
AL Marble
Thank you so much for helping to spread knowledge about ALS. I was dx May 11, 2006 and given 3 to 5 years to live. I have since lost all use of my legs and upper my torso is going quickly. It is sad to know there is very little knowledge about this disease in the general public.
For those not aware there is a website at
http://www.alsforums.com/forum/register.php
where we have over 7000 members who share and discuss this disease every day. It is a great support site.
Thanks again for your help in spreading awareness.
God Bless
AL Marble
http://www.myspace.com/als_bigal
[IMG]http://i160.photobucket.com/albums/t172/ShakeyMarble/5-8-2007WCAL.jpg[/IMG]
Al Pettit
Dear Ms Fonda,
Moises and I have talked extensively about ALS. I as recently as this weekend emailed him to ask why no awareness for ALS was being generated by 33V. To have someone of your stature help with awareness would be a godsend to the ALS community. I ask you as a patient myself if you could take a small amount of time from your busy schedule to promote ALS.
Thank you.
Roseann Haggerty
What courage an incredible spirit Pam Callihan has, and her beautiful son’s. I’m moved beyond, tears and words.
shelly
What an incredible story to share! Thank you Ms. Fonda for taking the time to meet with someone who deserves to be shared with whomever stumbles upon this blog. This story has helped my friend with ALS to see someone who has found this incredible courage. Doctor’s don’t tell people with ALS that going on a ventilator is an option. You are just sent home to die a horrific, painful death. My friend has little children too, and she wants to be there for every last second she can. Ms. Callahan just showed her this is possible, and to travel to a play in NYC! Would you ever consider, Ms. Fonda- helping this disease in a proactive way? A celebrity, such as yourself, could bring major awareness and attention through a PSA or to join with those of us who are begging the Federal Government for funding towards research. Every 90 minutes someone dies from ALS yet swine flu receives attention. Thank you for accepting the part you are playing so well. Perhaps someone in your audience has been moved to help as well.
Lori Costello
Pam and I were roommates, classmates and good friends in Philadelphia back in the early ’80s. I live in London now, but saw Pam in November 2007 when I heard of her diagnosis. I didn’t know what to expect, but I’ll tell you, despite the physical pain and heartache of ALS, she has not changed a bit – that’s because Pam has always lived every day of her life like a treasured event. You will never meet anyone with so much passion, drive and kindness – and with such a beautiful smile! She has emblazoned this joy of life on the hearts of her children, who are truly four of the most interesting and talented boys I have ever met. I hope 33 Variations helps raise the profile of this dreadful disease – thank you Jane from all of us who know and love Pam so much!
Carmen Elena Morales Velez
Dear Jane
I am very glad you got the chance to meet Pam, I don’t know her personally but I have a very good friend Michele Dupree who visits her regularly and we keep up on her progress .
My husband and best friend Don Koenig Has ALS since 2001 and we have created a foundation call Angel Hands for ALS, the purpose of our foundation is to help PASL and CALS to live a more normal and happy life by giving them hope and providing medical equipment and nursing care so families can continue to live a normal life and don’t have to worry about the monetary burden that this disease can put on our families.
we are just getting started and could use much help we are getting ready to do our first fundraiser event and in need of some items for our silent auction do you think that you can have something that we can put on out auction that can brig some money to our foundation to help our cause we will love to have you come to our kick off party it will be in Miami at the Conrad I will be more than glad to send you and invitation, I am hopping I can bring Pam to Miami to be part of our Angel Hands For ALS if there is any thing you can help us with it will be greatly appreciated, I will love for you to meet my husband he is my inspiration and strength to live every day
with my greatest regards
Don and Carmen
Angel Hands For ALS
(919) 522-3754
myangel1365@aim.com
Michele
Thank you Ms. Fonda for posting this story. Pam is an inspiration to so many. Not just because of how she has handled this insidious disease, but because of her spirit and friendship to all. As a Mother, she defines love with every breath and if only you could see how her little boys climb up to kiss and love her. Those in the ALS community who have heard about this wonderful meeting are thrilled and hopeful that you will make ALS your cause now that you have learned so much about this disease that has gone under the radar for 130 years. Thank you for taking the time to meet our beautiful friend Pam and for opening your heart so that you can truly understand how devastating ALS is.
Barbara
This woman is truly incrediable but seeing her children in this picture just blows me away.
There faces reflect such old souls. One has to think yes this is their journey and they are well equipped to handle this journey.
As it is said, we are not presented with things in our lives that we can not handle.
These child are prepared as hard as it may seem for this
journey ahead and there Mother is a beautiful inspiration
for them and all of us.
May the wind be always at your back on this journey,
Barbara
Erin
Jane, Thanks for sharing your account of Pam’s visit and her letter. I’m so pleased that the play and your masterful performance is raising awareness of ALS!
Susan Justice
My husband was diagnosed with ALS two days before Christmas in 2004. He was a brave man. He also decided to have a trach. That was a hard decision. He passed away on July 21, 2006. I miss him and will never forget his strength has he dealt with the disease. Let’s find a cure now!
Bradley Provines
Dear Pam
You are a Spiritual leader yourself with the work
you are doing and your very presence and Spirit!
I am so grateful to you and Jane for sharing your story!
I want to give to ALS!
Much gratitude
Bradley
Najwa Bahsoun
Dear Jane,
“With the blink of an eye”, this phenomenal young lady projects the light of life most of us choose to ignore. ALS and other similar degenarative diseases present great challenges but are not uncurable. I first learned about ALS through my cousin who was diagnosed 9 years ago,and sentenced to die 6 years ago, and who chose the same path Pam did, and is still going strong, certainly making a world of difference in his own circle of friends and family. Then I met Pam! Go girl! With Jane on your side, we’re finding a cure:) Thank you Jane… Thank you for being powerful and empowering:)
Laura Stanley
Jane: I am so grateful that you took out the time to meet with Pam, listen to her ALS story and to share it with all of us. Even though I have never met Pam personally, I share a kindred spirit with Pam and her family…not only through our mutual friend, Michele Dupree who keeps me abreast of Pam’s situation, but also because Pam and I both share the daily fear of our family members inheriting this curse!! I have lost over 34 family members to ALS and have devoted my life to fighting for this cause!! Would sure be a blessing to have someone such as yourself to help us bring awareness to this horrific disease!! I am so hopeful that your experience meeting Pam will encourage you to help us in our fight against this disease. Our newfound organization “ANGEL HANDS FOR ALS” would be so appreciative of any and all support to help us care for ALS patients and their families!! Thank you so very much for touching all of our hearts by listening to Pam’s story, which she shares on behalf of all of us affected by this horrible disease, and especially for sharing your emotional experience of your meeting with everybody. With sincere appreciation and gratitude,
Laura Stanley
Bill
Jane,
Thank you for posting Pam’s story. I am a CALS. My wife, Heidi was diagnosed two years ago and has since lost almost all of her strength. We have three daughters, the oldest being 11 and they are her inspriation to go on in the face of this disaster for our family. Pam is so obviously so strong, is showing that to her boys and setting a powerful example for them.
My blog linked above deals with our journey through diagnosis, treatment searches, spiritual issues and of course, caregiver issues. It is my voice, but much of it is inspired by my wife, who’s brilliance shines just as bright as it ever did, though she can not move. Very much as I can see Pam’s doing the same. God bless all of you out there dealing with this, my heart aches with you every day, but we have to keep fighting for a cure.
Peace,
Bill
Rachael
Thank you.
I am 39 and have had ALS for 4 years. I am a mom and intend, for the reasons Pam quotes, to vent before I become too weak. At this crossroad, I welcome the debate your character provokes but more laterally, I thank you, with all my heart, for giving us ‘a stage’ and publicizing the need for the cure we so badly need.
Rachael
Bonnie J Preston
Jane, thank you for this post. What an inspiration Pam is. With gratitude, Bonnie
Margarida
This was such a moving story. Thank you, Jane and Pam.
Michele
The ALS community needs a voice! Won’t you consider becoming an advocate for this miserable disease. To watch someone you love deteriorate daily is the most heart wrenching thing in the world. The number of people who have no idea what ALS is is mind boggling. I read that Angel Lansbury did a public service announcement for ALS, but not once did I see it aired on TV. Wouldn’t it be great if you yourself could do one, and make sure it gets regular airtime. Maybe even use Pam in it. I know she would agree to it. Anything you can do would be appreciated beyond words.
Alec
I am fortunate enough to know Pam. She is one of the most intelligent, persistent, and competent people I know. I have had the benefit of working with her as a technical support representative with the company that makes that device that she uses to communicate. She used to email me more regularly, but now it seems like she is getting exhausted more often and unfortunately I do not get to hear from her as much. I have worked for this company almost a year now and have gotten to know and care about a few of the ALS patients that I have been in contact with. Unfortunately many people I have met with ALS when I first started with this company last year are not doing too well right now and I do feel it in my heart. Of course I wish everyone with ALS the best and pray for more help for you to come soon. I am just glad I was able to be a part of Pam’s life and hopefully made it a bit easier. I will never forget how she told me her children come up in bed with her and she uses her communication device to help them with their homework. Pam will not let her ALS stop her and having communicated with many ALS patients, I really commend her for that. She is one heck of a woman!