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ksspeicher

Member
Joined
Mar 27, 2012
Messages
13
Reason
CALS
Diagnosis
03/2012
Country
US
State
VA
City
Culpeper
Hello, I have been lurking here for the past week and thought I would introduce myself, my name is Karen and we recently found out that my brother has ALS. As you all know, this was devastating news for us. My brother is 39 and it is believed that he has ALS due to his military service in the Gulf Wars. I will be my brother's caregiver and feel very fortunate and humbled to be able to help him. I spent the first couple weeks focused on the paperwork for short term disability, social security and VA and now that is taken care of and we have meet with the ALS Society I am not sure what to do with myself! Anyways, I wanted to say hi and look forward to sharing insights and support with you all.
 
So sorry to hear of your brother's DX. Welcome to the forums. You'll find a wealth of info here and a group of caring people.
Please make sure your brother is registered on the CDC's ALS site. Also get him registered with your local ALSA and MDA chapters.
 
Thank you Deb, I didn't realize the CDC had a registry, appreciate your letting me know so that I can register him there too.
 
MDA and ALSA will send you some caregiver guides. MDA mails out a registration form for his physician to sign first. They both offer websites and a news feed. If you're on fb, check out the Robert Packard Bell center at Johns Hopkins for news updates and also the NEALS (Northeast ALS consortium) for news, webinars and info on clinical trials.
 
hi , welcome you have a great group of people here to help you along the way
 
Karen, I'm so very sorry about your brother's diagnosis. What a wonderful sister you are for providing care for him.

This is the best site to find support and information. I wish you both luck in the journey.
 
Welcome
I am in the same boat . My sister was diagnosed 3 weeks ago. It is hard to figure out what to do after the initial frantic scramble to get information and to set up resources. I have this feeling I should be doing something but I too am not sure what to do.

I did read here advice about not letting ALS become your life . Excellent advice I think but it is hard when you want to do everything possible to make it better!
I am so sorry for your brother's diagnosis.
stay strong
love
Nikki
 
Welcome! If you ever have any questions about the VA, I would be glad to help you if I can.
 
I'm sorry about your brother's diagnosis. You're a wonderful sister to be there in such a huge way for him. Yasmin
 
Thank you all for your replies, it means alot knowing we are not alone in this. I appreciate the kind words but don't believe I am doing anything out of the ordinary - family is everything and there isn't anything I wouldn't do for him.
 
Hi Karen,

Welcome! Your brother is lucky to have you! I know that he is family and this is an ordinary thing to do for one you love, but as I am finding out, every change brings new challenges. This is a great place to find information, shoulders to cry on and get hugs and support!

Jen
 
Hi Karen
I tried to post before so if this shows up twice I am sorry!
My sister was just diagnosed in March also. I am feeling some of the same things as you I think. At first frantic digging for information and resources, then a feeling of what next? My sister is not yet really disabled not a lot of caregiving needed but I have this feeling of needing to help...
I am so sorry for your brother's diagnosis.
Wishing you strength in the coming journey
love
Nikki
 
Welcome Karen, Sorry it's under these circumstances that we meet! My hubby is a 30 year vet with ALS. Depending on how far your brother is advanced, if you feel like you should be doing something and have the time, follow the advice others have said plus read, read read, all you can about this horrible disease. It's hard to read about it when you first get the diagnosis, I didn't really want to, denial I guess. I'm learning now though! Best wishes for you and your brother in the days, months, years ahead.
 
Appreciate knowing I can come here and know we are all going through the same issues. Today I feel so grateful that the Paralyzed Veteran's of America is taking over the process of getting my brother his VA benefits - I was at the point where I was so disgusted at the VA for the lack of organization and bureacracy, it was beginning to make me crazy. From here on the PVA will represent us and I have faith that they are going to do an excellent job.

Last night was difficult, my brother was very anxious and felt as if he couldn't talk, he said his tongue wouldn't move. My brother is the guy that loves to tell a story, I can't believe what a cruel twist of fate that eventually he will lose the ability to tell one more story. Today has been good, it always seem as if the evenings are when the fears and anxiety emerge, is it the same for you all?
 
Karen,

Welcome to the family nobody wants to be part of. I wished we could have met under different circumstances.

This is truly the best gift you could give your brother. The gift of YOU! Right now you may think its no big deal, but eventually you will realize how much you are needed. A word of advice, make sure you have other help too! Home Health and Hospice can be a lifesaver. Make sure you take advantage of everything that is offered. And as my GP told my husband and me, you must stay 2 steps ahead of the disease.

Good Luck and ask questions (even ones that you may think trivial), many questions because at least 1 of us has been there. Also, see if your brother will want to sign up here. There is a fountain of knowledge to receive.

Prayerfully,
 
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