Monday, April 18, 2011

Welcome!

I am 26 and my father was diagnosed with ALS in August of 2009.   My mother, my 23 year old brother, and I have been the only caregivers for him for some time now and it is getting harder and harder.

I have decided to start this blog in order to address the toll (emotional, etc.) that having a parent with ALS takes on teen/young adult children.

It seems to me that it is difficult to connect with others going through the same situation because, at least in the support group my family attends, a lot of the young adult children live away from home, or the PALS do not have such young children.  I was thinking that it might be easier to connect with more people in the same situation as I am by using the internet.

Maybe if we all shared our experiences, in general and regarding specific topics, in one place we could form sort of a teen/young adult support group.

If anyone who reads this has any ideas for topics, please let me know!

11 comments:

  1. Hi Allison,
    This is a great idea- I'm so glad you started this.
    I'm also 26 and my father was diagnosed with ALS in Jan 2009 (although symptoms started in June/July 09). It's been terrible all along the way, but things have taken a turn for the worst in the last few months with respiratory problems, etc. It's hard to explain to people the toll it takes on the whole family, so hopefully your blog attracts people in similar situations so we can all find support in dealing with this terrible disease.

    ReplyDelete
    Replies
    1. I'm giving a testimony about Dr. Ofure the great Herbalist, he has the cure to all manner of diseases, he cured my ALS DISEASES , though I went through different website I saw different testimonies about different spell casters and herbalist, I was like: 'Many people have the ALS cure why are people still suffering from it?' I thought of it, then I contact Dr. Ofure via email, I didn't believe him that much, I just wanted to give him a try, he replied my mail and Needed some Information about me, then I sent them to him, he prepared it (CURE) and sent it to Airfreight Online Courier Service for delivery, he gave my details to the Courier Office, they told me that 3-5 days I will receive the package and i took the medicine as prescribed by him and I went for check-up 1 week after finishing the medicine, I was ALS DISEASE, if you are ALS patient do me a favor for you to contact him and I will try my possible best to make sure you get cured, when you contact him, make sure you tell him that I referenced you.. contact him via: ofurelovespellhelp@gmail.com or call +2348109756444

      Delete
  2. Hey Allison,

    This is a great cause. My father was diagnosed with ALS a couple years ago, and it has been a trying time for our family. We are grateful that the disease has progressed slowly. However, it is emotionally difficult to anticipate the day it takes a turn for the worst.

    I have watched how this disease can bring the worst and best out of people close to my father. My sister and mother, at times, become selfish and take it personally when my father lets the disease get the best of him. When he was hesitant to have a feeding tube put in, fearing it would mean he had already given in to his fate, my sister said things like, "do it for me." I think it is important to treat the patient with respect, but also to be supportive and not allow him/her let fear determine their actions. I repeatedly told my sister that our father is facing a challenge neither of us can comprehend. As a result, rather than attack him for his behavior, we need to help guide him through his struggles to make the decisions best for everyone.

    I can't imagine how hard it must be to not be self-centered as an ALS patient. Its true that this disease affects everyone close to the victim; however, in their mind, they are the ones who must face the ultimate consequence. That's why it is important for us as family members to not become resentful when we are negatively impacted. We may be suffering, but ours is temporary.

    And, as I said, I have seen the best side of some people since my father was diagnosed with ALS. Friends of our family have really stepped up to be supportive in so many ways. I think it is important for us to also reach out when we are in need. Don't be too proud to ask for help.

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  3. Thank you, Nicki & Steve! I'm so glad to meet more people who are going through the same thing. I would really like to make this a little community/support group just for us. If either of you ever want to do a guest post or anything, please let me know!

    ~Allison

    ReplyDelete
  4. Hey Allison,

    This blog is a great idea. I'm 23, and my father was diagnosed when I was 16. It's a truly difficult thing to watch, but I like to think of the positive aspects, the silver lining inside of this very dark cloud. At an age (late teens/twenties) where many of our peers branch out and lose touch with their parents, this has brought the startling realization that life is fleeting, and has allowed me to really develop and cultivate a relationship with my dad that many in our age group don't have or take for granted. Please keep up the good work, and I hope that this catches on within the community.

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  5. Allison,

    I love your idea! I am 27 and my mom was just diagnosed in Nov. I have also started a blog to document her progress, share memories and bring something to the community of those who are dealing with ALS. When she was first diagnosed I instantly went to the internet in search of blogs and found very little! Keep writing... it brings such peace and hope. Would you mind if I place a link to your blog from mine?

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  6. Tara,

    Sure you can link my blog! And I'd love to read & link yours too :)

    That is exactly why I decided to start this blog, because I couldn't find anything online for people like us!

    Thanks for reading!

    ~Allison

    ReplyDelete
  7. Hi guys,
    I am so glad I found this blog. It's nice to know that you arent so alone, when you really do feel like you are so alone. I'll be 29 in a couple of weeks but my mother was diagnosed in March of this year. It's been a roller coaster of emotions since then. I don't live at home anymore, and as a matter of fact I live about 6 hours away from my mom, so I don't get to be with her too often. So every time I see her it seems like there are such drastic changes. It's now getting to the point that it is difficult for her to speak, and that scares me. I have a 9 year old little girl that I'm also trying to help get through this. People don't realize the toll that this disease has on the family, not just the person with ALS. It's hard to convince a 9 year old that everything will be ok, when you know what the outcome will be. I am so glad I found this blog, I'm hoping that seeing how everyone else is handling this will help me help my daughter and possibly come to terms and be ok with what is going on. I've got a blog on here too, I just use it to rant and rave and get all of my frustrations out there. Thank you for starting this blog, and thank you for helping me feel less alone in such a horrible disease.

    Lindsey

    ReplyDelete
  8. Also here is a link to my blog if anyone is interested.

    http://linzblkr.blogspot.com/

    Lindsey

    ReplyDelete
  9. Hi Allison,

    So glad that you have the strength and courage to be a caregiver to your father. I have listed your link on my website- www.hopelovescompany.com and would like you to check it out. My husband Kevin O'Donnell died of ALS in 2001 and now I am helping children and young adults who have parents with ALS. Please let me know if I can be of help to you and your family.

    Sincerly,
    Jodi O'Donnell-Ames

    ReplyDelete
  10. I'm giving a testimony about Dr. Ofure the great Herbalist, he has the cure to all manner of diseases, he cured my ALS DISEASES , though I went through different website I saw different testimonies about different spell casters and herbalist, I was like: 'Many people have the ALS cure why are people still suffering from it?' I thought of it, then I contact Dr. Ofure via email, I didn't believe him that much, I just wanted to give him a try, he replied my mail and Needed some Information about me, then I sent them to him, he prepared it (CURE) and sent it to Airfreight Online Courier Service for delivery, he gave my details to the Courier Office, they told me that 3-5 days I will receive the package and i took the medicine as prescribed by him and I went for check-up 1 week after finishing the medicine, I was ALS DISEASE, if you are ALS patient do me a favor for you to contact him and I will try my possible best to make sure you get cured, when you contact him, make sure you tell him that I referenced you.. contact him via: ofurelovespellhelp@gmail.com or call +2348109756444

    ReplyDelete