Sister Diagnosed 6/25/14

[Leslienu]

My sister who just turned 59 yrs. old, Jill, was diagnosed with ALS on 6/25/14 by Forbes Norris Research Center in S.F., CA. They started her on Riluzole or Rilutek. They recommended she get a stomach tube put in since she had already been having trouble swallowing this whole time as well. The dr said he has only been wrong twice in the last 35 yrs.
My sister lives in Anchorage, AK with her husband. She has 2 adult children and 6 grandchildren all in AK. She is still working. I visited her last summer of 2013 and returned home in October 2013. When I left she seemed fine. Sometime around the holidays things seemed to change. She was noticing different symptoms and we were thinking perhaps she had had a mild stroke because of her slurring speech. She started to go to the doctors and they were performing many tests including MRI's etc. Finally 2 drs agreed that she should go to Forbes Norris Research Center in S.F., CA. She is still pondering going for a second opinion?
I hope someone here can help me to know what to say and ask without upsetting her? I am trying to do as much research on ALS as I can. This is breaking my heart. She is a super sweet wonderful giving woman and I want to be as positive as possible for her without being overbearing. I live in AZ. The rest of our family is in MI. Thank you all for listening to me.

 

[zoohouse]

Welcome to this site, it is full of great people. I think most people of this forum would say that a second opinion is a good idea. All I advise you to say is that you love her and talk or visit her. My husband's large family has basically stopped calling or talking because "they find it so difficult." Well, imagine having a devastating disease that can go on for years, and on top of that you are basically shunned by your family.

My siblings and I have already lost a brother to cancer, and know how important it is to rally around that person. My husband has been overwhelmed by the support and love that he has received from my family, even though we have only been married 3 years. It means so much to him, so again just be there for her anyway you can. If you can't visit her, phone, Skype, email, or text regularly, and it will mean the world to her.
Thank you for asking, and taking the time to find out how best to support her, you obviously love her.

Paulette

 

[MaxEidswick]

>She is still pondering going for a second opinion?

Paulette is right, I always suggest getting a second opinion in such a serious situation.


>I hope someone here can help me to know what to say and ask without upsetting her?

It's an emotional roller coaster for everyone involved. Take it slow. We have a saying "It Is What It Is" (acceptance), but be sure.


>I am trying to do as much research on ALS as I can.

you might start here:







there are what I sent to F & F ...


>This is breaking my heart. She is a super sweet wonderful giving woman and I want to be as positive as possible

slow progression is always possible, this forum really helps a lot of us.


>The rest of our family is in MI.

GO BLUE!

Kind regards,

Max

 

[Leslienu]

Thank You so much for your post, videos and ideas Max. It pains me that any of you have to be on this forum. Yes I love my sister so much and I am having a more difficult time dealing with this ALS than she is for the moment anyways. I have been reading many of the testimonies shared here and it helps sometimes. I am praying for a cure to happen soon. May you feel God's presence all around you! <3

 

[MaxEidswick]

>I am praying for a cure to happen soon.

dream on ... the FDA is a 5-7 year fix for that :-(

 

[DreamsEnd]

As to what to talk to your sister about and to ask her. I think depends upon the kind of openness you shared together before. I'm a "lay it all out there" person but not all are. It sounds as if you and your sister are really close. Ask her how are you doing? How are you feeling? And really LISTEN.
If you haven't yet turned her on to this site, you might consider that. There is so much information and support on here.
The diagnosing clinic can refer her to a place for a second opinion or contact the local ALS association and ask.
My brother, who was my hero, was diagnosed with terminal cancer 12,years ago. I was devastated as you are. All we can do is be there in whatever way you can and just love her.

Sherry

 

[MaxEidswick]

also mda and alsa

http://als.myupsite.com/resources/clinical-trials/alaska/

http://mda.org/locate/state/ak

 

[Janie H]

Talk to her and listen like Sherry said, I have people who have avoided me, I don't blame them but the ones who are here for me mean a lot.
janie

 

[tinyandme]

Be honest but don't overwhelm her with facts! I've researched from day 1 but my PAL can't handle it. I give it to him in small doses, I let him lead the convo, and when he's had enough I shut up. Hard since I'm such a jabbering fool sometimes! Best of luck, be strong, get some counselling for you too!

 

[MaxEidswick]

> I give it to him in small doses, I let him lead the convo, and when he's had enough I shut up

Amy, I am sure that you process just the right amount of information.


>get some counselling for you too

Ditto that. Whether it's a support group, or friends that you can have coffee with, or spiritual advisors is very difficult to walk this path alone and as we lose our ability to speak and communicate, the isolation is not just us.

Sandy does stuff like volunteering to help teach English as a second language, she has a new team group she goes to, etc. not every activity has to be ALS centric.

For what it's worth,

Max

 

[Leslienu]

Thank_you everyone for your comments. They have meant a lot.

My sister just joined this forum under JillinAK. Please check her out and encourage her please. She means everything to me. Yes she did get her second opinion and it was confirmed she has ALS.

 

[azgirl]

Leslie, check out my sister, COsister, on this forum. She has been tremendous support to me and will know exactly how you are feeling.