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Our Journey of Nineteen Month's in Hell with Lou Gehrig's Disease

CharlesHaleSrWife
0 Recommendations

Hello to all, I lost my Husband of 25 yrs to A.LS. 7yrs ago He was 42 and it took him in only 19 month's. I saw thing's that I wish I had not seen I stopped being a house wife and began being a caretaker.this Disease is Brutal. I wrote a book on our experience and I now have it available. This book took me over a year to write. It was not easy writing my memoriesand thought's down much less for the World to see. I believe that through this book can come many thing's [1] we need better treatment [2] we need a cure and [3] all battling A.L.S. are still part of our world and we love and need them. My Husband is gone but if there is anyway to help someone else with this Disease then I would know that all my Heartache's were not in vain. If we choose to do nothing for these loved one's then shame on us. I am asking anyone to write the talk show's and ask them to help us get this Disease a cure. I am donating $1.00 per book sold to A.L.S. Please don't just sit back and allow this Disease to keep taking from us. I have a voice and I will use it if given the chance. Thank You and God Bless  Kathy Hale       Book Title  Our Journey of Nineteen Month's in Hell with Lou Gehrig's Disease  [The Charles Hale Story]  written by Kathy Hale   [www.authorhouse.com] again thank you                                                             

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ALS

14 replies

readmovie3

Hi,
I just read your story on the website, sometime in the future I would like to buy your book. My mother also had ALS, she died 9 months after being diagnosed. I am still learning about this disease.

CharlesHaleSrWife

HEY TO ALL YESTERDAY I EMAILED SOMEONE ABOUT HER BROTHER HAVING A.L.S. I HAVE THOUGHT SO MUCH ABOUT WHAT I EMAILED HER BACK. I'M NOT SURE OF HOW SHE TOOK MY EMAIL.THE LAST THING THAT I WOULD EVER DO IS TAKE HOPE FROM SOMEONE.I DO KNOW WHAT MYSELF BEING THE CARETAKER WENT THROUGH AND IT WAS SO HARD I ALSO KNOW WHAT MY HUSBAND WENT THROUGH AND IT WAS PURE HELL. I WAS GIVEN FALSE HOPE IN THE BEGINNING OF HIS ILLNESS. LIKE A FOOL I FELL FOR IT. THE DOCTOR LATER TOLD ME HOW SORRY HE WAS FOR MISLEADING ME. I CRUMBLED. BUT TODAY YOU HAVE HOPE THEY COULD COME OUT WITH A CUREAND BETTER TREATMENT THAT'S WHAT I PRAY FOR. YES STAY STRONG AND KEEP THE FAITH GOD DOES HEAR US AND HE SEE'S OUR TEAR'S. SO TO THE PERSON THAT I EMAILED PLEASE FORGIVE ME IF YOU TOOK MY EMAIL THE WRONG WAY MY HEART TRULY BLEED'S FOR YOU AND YOUR FAMILY. THANK YOU KATHY HALE

RochesterBarb

Definitely! You are supposed to have freedom of choice in America, but because my sister couldn't get at her retirement money at the beginning, she was on Medicaid temporarily. Medicaid paid aides get very little pay, and therefore have financial problems themselves. For instance, if their car dies, they can't afford to fix it right away. This seriously affects the ALS patient and family, especially the PALS who lives alone. All of the agencies tried to convince us she HAD to go to a nursing home. That was the one thing she didn't want. For example, she was quadriplegic, but she was in her right mind and knew every pill, when and why she took it, and was able to accept or refuse. But because Americans are so litigious, they (the agencies) were afraid that if they let the aides put a pill in her mouth, it was breaking the law that doesn't allow aides to "pass meds" and that they could get sued. We had the nurse coming once a week to set up the med kit with her pills for three times a day. My sis would inspect the kit (pill holder) before the aide touched it. All the aide was doing was being her arm (as they were doing for all her other physical activities) but it took almost an act of God to convince the agency that actually placing the pill on her tongue was not "passing meds". She felt, and I agree, that making someone go to a nursing home merely because their arms are paralyzed, was inhumane. Yes, some nursing homes are great, and if it got to the time when we could no longer care for her at home, she would have gone, but her desire was to stay at home as long as possible, and through great effort and God's grace, we had people in place to allow that to safely continue. She had lived alone for 25 years, and it was her greatest wish to keep it that way. I couldn't make the ALS go away, but I could do my best to help her do what she wanted about where to die. If not for what I had learned from my deaf clients (I'm a sign language interpreter) I never would have known the proper, seemly, and effective ways to advocate for my sister.
After she turned 65 and was able to get to her retirement money we had peace because we hired our own aides 24/7. But it cost $10,000 a month. So a lot of the money she had saved to travel in her golden years went to help her have her wish to stay at home. Ironic, isn't it? Many people don't realize that medical insurance does very little in terms of aide care. Extremely little. And I lost 8 months of income myself because she lived alone and someone had to do the paperwork and arrange the care and do everything else. These are part of the unknown costs in a situation like this. But I really doubt the government would do any better if they were in charge of providing health care. After talking to my friends in other countries, I feel my sister would have had even less choice if that were the case...

montanaberg

Hi Barb; don't know if she will get it. Amy Halpin is the fiscal sponsorship coordinator at the International Documentary Association. A better way to connect with Carla might be via her blog at www.carlamuses.blogspot.com. She'll see you comment there for sure. Or you can send me an email and I'll pass it on. montana@magicalflutefilms.com.

Kathy, yes, many people don't know what ALS is and it's important that we educate them. The amount of suffering this disease brings is unbelievably horrible but what's also imporant for people to realize just how little help the ALS patients and their families get in terms of financial assistance from any organization. Carla was so tight for money that she decided to cash in on her life insurance. They made her prove that she has less than 1 year to live. How the heck is one supposed to do that?!?! Yesterday, I read an article about one man with ALS who needed to be put on a feeding tube. The Group Health Plan paid for that but then refused to pay for the special food that he needed to be fed through that tube. Only after a reporter contacted the GHP did they reverse that decision. Unbelievable!!!

RochesterBarb

Dear Montanaberg,
I left Carla a note via the email address you are sent to when you make a donation... Amy Halpin or something like that? Do you think Carla will get it?
And Kathy, YES! If not for the Lord giving me strength, love, encouragement, and mercy every moment, I'd have had a nervous breakdown. I made myself a CD of my favorite music to listen to on the way to her house every day and after I left. It was like I had to wash my heart and soul and mind in His word in order to make it.

CharlesHaleSrWife

Dear smilef, Thank you and it's people like you and other's on this sight that will make a difference to those we love. My Heart break's for anyone living through Lou Gehrig's Disease and GOD BLESS those family member's to stay strong. It is a long brutal walk, when you love someone then you do what ever it is that they need to help them I pray that a cure will be found... Thank You kathyhale79@yahoo.com

Smilef

I am looking in to getting your book.
I also had a brother that passed away almost 2 years ago he was 43. Terrible disease. I would not change a thing either. We as a family took care of him and my sister opened her house up to him. We could not of taken care of him without her.
We do need to find a cure. Its pretty sad that we are no farther than we were 10 years ago or even longer.

I am so proud of you for writing a book.

Marcy

montanaberg

Hi RochesterBarb;

I'll be happy to add you to my email list. Carla, the hero of our film, writes a blog that our film is based upon. You can check it out at www.carlamuses.blogspot.com. It's very funny, sad and inspiring, all at the same time.
We all need to work together on getting the word out about this horrible disease. There are indeed many people who don't know anything about ALS and how it can affect absolutely anyone, at any age.

CharlesHaleSrWife

dear rochesterbarb, thank you and GOD bless you when we become caretakers to those we love it is certainly a walk through hell. I look back now 7 yrs later and I have no dought that God himself carried me every step of the way. I was asked a couple of years ago if I would have still took care of him knowing what I know now. Absolutly I would I loved him I would not change anything on being his caretaker. So when you are a caretaker I believe that God shine's his grace down on us. GOD BLESS kathyhale79@yahoo.com

RochesterBarb

MONTANABERG, please add my email address to your updates mailing list for Carla's film:
hashfolk@rochester.rr.com
KATHY, just ordered your book. Looking forward to reading it. I went through the hellish journey with my sister, who died a year ago this month.
Still hurts a lot.

CharlesHaleSrWife

Dear swhite-geo It is very kind of you to post my book on your sight.Thank you for taking an interest in my book Thank you and GOD BLESS. kathyhale79@yahoo.com I am also trying to get Oprah to talk about this disease

CharlesHaleSrWife

Dear Montanaberg, yes you can share my book with anyone. It's so hard getting people to even understand what A.L.S. is. My book does have raw material dealing with this disease The Families dealing with this disease yes their job is so important but yet a walk through Hell. I pray that oneday soon this devils disease can be put back in hell where it belong's. thank you and good luck i'll keep up with you GOD BLESS. kathyhale79@yahoo.com

swhite-geo

Hey Kathy, good for you for getting it all into a book to raise funds and awareness! I'll add a link to my website, under "Media/Books", unless you tell me otherwise.

God bless!
Steve
http://alsbytes.com

montanaberg

Yes, ALS is one of the nastiest diseases one can possibly get with no cure and anyone can get it. While it is obviously devastating for the patient, the family members who become caretakers are often forgotten. We are working on a documentary, directed by Academy Award-winner John Zaritsky to raise awareness of this illness in a big way. The film features singer/songwriter/comedienne Carla Zilbersmith who faces her own extinction with courage, love, wit and an outrageous sense of humor. She has a whole big group of friends helping her and we have captured many of these people on film in their interactions with Carla. For a sneak peek of the film, please go to www.leavethemlaughingfilm.com. The goal is to have the film done in late September. Feel free to send me an email if you'd like to be put on our mailing list for periodic updates about our important film.

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