This site is such a great resource for survivors of SCA/SCD (along with ABI) and their family members. In reality, the family members are survivors too. Sometimes the family needs help and insight from others who have been in their shoes. It might help to hear from someone who has "been there, done that." It also might help the survivor to hear from other survivors who have been introduced to this scary, new, and unfamiliar world of brain injury.
I have been very fortunate to come here and post my stories and share my feelings. I've also been blessed because some of the members here have been great in responding to my posts and by sending me private messages of support. I've made some new friends and appreciate hearing their stories and sharing their experiences with me and the Inspire site.
One friend in particular, Bob (an SCA/ABI survivor), has suggested that it might be beneficial for survivors to speak to other survivors and their families either directly over the phone or through emails or letters. In fact, he and I have already spoken over the phone and he even wrote a personal letter to Samantha. He told her about his experiences and that she is not alone in this situation. What a nice thing for him to do! I am hopeful she will read his words and maybe even be able to relate to what he said. I don't know if she will or not, but at least we will try.
We both think this could be beneficial for us and also for others here. We are proposing to start writing to others and to possibly create video email messages, letters, or phone calls. This could all be done through this site and personal emails or telephones. We re not asking for personal information and don't want to know where you live, but are just trying to help in a small way beyond posting on the message board.
If you think you may want to participate, please respond to this post and/or add me (Aaron-Pennsylvania) or Bob (rturri) as friends and we can begin to coordinate our efforts. I look forward to hearing from any and all of you who are interested in sharing experiences and bringing hope to others.
Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Support for Survivors
- By Aaron-Pennsylvania
- Posted October 27, 2009 at 10:10 pm · 5 replies
- In Surviving SCA
- Shared with the public
5 replies
- Oldest first
- Newest first
- By rturri
- Posted November 1, 2009 at 4:27 pm
- Report post
A nice introduction, Aaron.
I believe that many survivors would benefit from meeting others who have gone through the same thing. I think there's a social component to the anoxic injury that has been totally and long ignored, and the ones who can address it are already lined-up here and "qualified". And we don't have to travel cross-country to do it. (Maybe, even some survivors who are doing so well in *CANADA*, for example!)
I hope there will be an interest in this. It may be as good for the 'helper' as it is for the 'helpee'. After all, it's just a matter of friendship.
Thanks for your efforts, Aaron.
Bob Turri
- By rturri
- Posted November 1, 2009 at 8:45 pm
- Report post
To momcaregiver:
Hi there, Mom!
You have a tough and total job to do, I know, and not all can do it.
I'm wondering if your son has met any others with ABI or has had a chance to interact with them in any way. Do you think it would be helpful? Do you think it would help your son in any way if he felt that he was helping someone else to get through the same problems? Good questions, I think.
Well, Heaven must have your photo posted up there as an example of a mighty spirit with a good heart!
God bless you and your son.
Sincerely,
Bob
- By Ivy
- Posted November 2, 2009 at 10:00 am
- Report post
Hi there,
Yes, please count me in to share my story and try to help others. My son, Jim (age 34 now), had a cardiac arrest and resulting brain injury 5-1/2 years ago. We were told he would never walk or have a productive life. He has proved them wrong. Although he has a hard time communicating, his physical health has pretty much returned. He does live with us and has recently begun to practice driving again. We read everything we can get our hands on regarding brain injury and we attend a support group once a month as a family. This has been a tremendous help for us to find out what services and benefits are available for the brain injured individuals. We would be more than happy to receive notes from anyone who is a caregiver or survivor.
- By wdiane
- Posted November 2, 2009 at 4:57 pm
- Report post
I'm in! That is what I have been trying to do. Let me know what we can do and what I need to do. I especially want to be there for the families as I know what I went through and know what a rough time it can be.
Do you want my email and my address or my phone -just let me know!
Diane
- By Aaron-Pennsylvania
- Posted November 5, 2009 at 1:30 pm
- Report post
I wish that some of you would share your personal stories in your journals or on the discussion board. It would be good to hear from people who are themselves survivors as well as their family members. It's ok to describe the bad along with the good to keep these things in perspective for everyone. I know in some ways I am fortunate for what happened to Samantha, and in other ways not so fortunate. We need to accept our lives as they are now and by sharing our stories, it just might help people understand that they are not alone and there are others out there who have been (or are going) through this. Together we are stronger and it helps knowing you are not alone.
Add to the discussion