Kathy's ALS Blog

My Journey Since Being Diagnosed with ALS




   I was diagnosed with ALS/Lou Gehrig's Disease
        in December 2005.  To read about my initial  
    diagnosis, please start by scrolling to the
                        bottom of this site.

 Feel free to submit a comment to me
whenever you visit this page.

 

       Thanks for stopping by!

Why I Keep This Site Active

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This entry was posted on 2/14/2010 10:13 PM and is filed under uncategorized.

We lost my Mom two and a half years ago to ALS. Not a day goes by that I don't think about her and miss her terribly. I want to remember her as more than suffering from ALS. But, ALS is what took her life. 

Once in a while, I get a request to publish a comment on this site and I'm reminded why I pay the small fee to keep this site up. Sure, I keep it up so I can turn to it from time to time. But, most importantly I keep it active because of the people that stumble across it. For the person whose family member was recently diagnosed and wonders how they'll ever make it through this journey. For the patient who doesn't know what is wrong with them and is fearing an ALS diagnosis. Or for the person who has heard of this disease and doesn't understand its effect on people. 

This blog was created to tell the truth. My Mom shared her feelings and her story. And I shared mine. I do worry that I'll scare people finding this site. ALS took my Mom away from me - we didn't have a typically "happy" ending. However, I don't know if I can ever explain or understand myself how in many ways she changed for the better after her diagnosis. For her last year and a half with us, we got to see a woman who had this new hunger for life. She didn't want to face the reality of the fatality of her disease and while that worried us at times, in the end it made me so proud. My Mom took her last breaths as a fighter. While I am haunted by her death, I am comforted by her memories. These days I dream of her often. She is happy, she is calm and she is love. 

We will be together again for I know she's with me now. That I know for sure.

 

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    • 2/19/2010 6:31 AM libby wrote:
      I stumbled across you this morning while looking for answers and and understanding. My mom also has ALS 10 yrs now. but now I am scared and things are changing quickly. Did you mom choose to go on a vent? Watching her struggle of sooo terrible. She refused any meds for comfort, has refused feeding tube, and I respect why. I am just looking for honest answers of what to expect, can my children be with me or to scary for them. My tears are coming quickly and I can't stop them. I just feel like I need to prepare myself for the unknown right now for the strength of the new phase. I am with her everyday as much as I can.Not sure if it is time to tell her it is ok to go and I will be fine as she has told me she is tired and no more. I am afraid to say I guess b/c I am not sure if I am ready to say goodbye and how selfish of me but I cant help it.
      Is the suffering bad?
      I am sorry for you and sorry That I have bothered you but for some reason a kind heart stood out to me when I found your website this morning.
      Libby Moss
      Libby114@comcast.net
      Reply to this
    • 2/19/2010 7:47 AM Courtney wrote:
      Libby, I've responded to your comment directly to your e-mail. I am happy to help however I can. Take good care.

      - Courtney
      Reply to this
    • 2/28/2010 4:51 PM dominique wrote:
      My god, what a disease, last year I heard for the first time of ALS, my friend in Amsterdam was diagnosed last June, and since that date it's going so fast, he can't speak anymore, he's using a breathing machine since November. I just came back today from Amsterdam, I spent one week with him. It is so frightening. Sometimes my energy goes away, but I want to be strong and be next to him. His crying is hard to hear. Of course we cry together, it doesn't help much. All the time he speaks about let it go, time to give up everything. He's a very good person. And living with ALS is terrible but also for us, next to them, a learning experience. I did last year the walk for ALS in Vermont, saw a lot of people in the same boat and today I don't know why I looked for blog over ALS, saw yours, i just wanted to share a little bit my sadness, and just hoping that one day in a near future, a cure can be found too late for our loved one, but for the future generation they can live a normal life.
      Reply to this
    • 3/9/2010 2:31 PM Patrick wrote:
      My mother has just be told she has ALS we are going to the MDA in memphis on Wednesday, 10, 2010. I'm just so worried and wonder what to do. Patrick
      Reply to this
      1. 3/10/2010 9:13 PM Courtney wrote:
        I'm so sorry, Patrick. Please let me know if you have any questions. I will help if I can!

        - Courtney

        Reply to this
      2. 3/11/2010 9:14 AM dominique zebzda wrote:
        Well Patrick, you are going to need a lot of strength, Hope she doesn't have the tubular form. They are some wonderful associations in the US which can help you don't hesitate to contact them. hope all the best for you and your family. Be strong.

        Dominique
        Reply to this
    • 3/22/2010 12:32 PM Claire wrote:
      I just learned that my mom has ALS and your blog was a big help. I keep finding lots of fact pages, but was so glad to find your personal story of the entire experience to have an idea of what we will be going through. Thanks so much for sharing.
      Reply to this
    • 3/23/2010 8:17 PM Angela wrote:
      I thank you for keeping this blog up. Our father was diagnosed two years ago with ALS and this past last week were given the 'talk' from the doctor about needing to prepare for the end. This has been an incredibly hard week for my sisters and mother and myself and it is painful but also comforting to read others stories and god bless you for sharing your stories.

      Angela

      Reply to this
    • 3/29/2010 2:47 PM Laurie Watanabe wrote:
      Dear Courtney:

      Thank you for keeping this Web site active. I am an editor working on a story about ALS and found your blog while searching for first-hand accounts of what it's like to live with ALS.

      My condolences on the loss of your beloved mother, and I hope it is some comfort that your mother's courage -- and the courage that you and your family have shown -- continues to reach out and touch others in need.

      Best wishes,
      Laurie Watanabe
      Reply to this
    • 4/10/2010 8:47 PM Lezlie wrote:
      Found this site tonight after spending all day in the hospital. Our first trip since mom was diagnosed 11/2007. Very scary, I don't think I am prepared to lose her. Mom's birthday is 7/31, looks like our mothers have close birthdays. So tired, but I plan to come back to this site and read on. Thank you for publishing it.

      Lezlie

      Reply to this
    • 7/19/2010 12:16 PM anthony wrote:
      courtney,

      i really don't know where to begin, other than by saying thank you. you see, unlike the others who have responded i was diagnosed 7 years ago this week, with symptoms a year prior. i am 39 years old with a caring wife and beautiful 2 year old daughter. not to make myself sound naive or in denial but i can count on one hand the number of times I've gone on line to look up anything to do with als, and definitely first time looking up a blog, which is how i found the touching story of your mom, your family and friends. you see from day one i told my wife (we were just married 2 months), my family, and friends, that i didn't want this to consume them everyday because i wouldn't, we have to live our lives, everybody has obstacles in life and this is mine. well its not just mine, and i didn't realize that for a long time. i guess what i am trying to say is from this side, i know my support group is unbelievable, as you were and still are, not that i ever doubted for one second my support group, but when you see in writing your experience i truly see that no matter what i say, or how i try to protect them it will consume them no matter what. i don't know if what i am writing makes sense because i never write, but in life we should touch the lives of as many people as possible and you have touched mine and so many others, so thank you.

      you truly are an inspiration, as is your mom.

      sincerely,

      Anthony
      Reply to this
    • 7/19/2010 12:19 PM sandy wrote:
      My mom was recently diagnosed with ALS - I started journaling everything from trying to find the diagnosis to the current diagnosis, and how we are dealing with it. Thank you for your honesty and compassion.

      Sandy
      Reply to this
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