What to expect?

Hey all,
This is my second post, and a little more specific than my first in terms of what I'm trying to learn. I truly appreciate all of the support I got from my first post - your kind words and the idea that I can always have someone to turn to during this is incredible and I cannot thank you all enough.
My mom has bulbar ALS and has been told that she can expect 1-2 "quality" years of life.. I've done a lot of reading and research on what to expect in terms of the progression of her illness. It's sad and terrifying, but I do feel somewhat comforted by the fact that there is so much literature out there about what to expect.
My concern, then, is the other members of my family. We are all very, very close but we've also never really had to deal with something of this magnitude before. I know we can expect sad days, hard days, etc. By joining this, I've felt a great deal of relief in that there is such a strong support system.
Is there anything I should look out for in the other members of my family? Do many families go to counseling right away? Or is it something you wait for until you feel "depressed"? I think I just worry about what will happen when the shock wears off and the reality sinks in. I'm very new to the idea of antidepressants (and to be honest - a little wary). Are they a good idea as a coping mechanism?
Sorry if this is rambling. I guess I can read and read about what the expect to happen to my mom physically - that, I know, we will deal with. It's all the emotional stuff that I'm afraid of.

Again, thanks for everything. Just writing this makes me feel better. I'm going to encourage my family members to join as well. God Bless.

Hi Nora,

Have you gotten in touch with the ALS Society closest to you? They have a wealth of information about support group meetings and loads of other useful info. We got a huge binder from them full of important info. I will be attending my first support group meeting in a short while (next week I think) and I will keep you posted on how that goes. I think it is important to be in communication with people who really understand what you are going through.

As for your doctor's prediction on "quality of life," I have very mixed feelings about that myself. I think only the person who has ALS can determine if they have "quality of life" or not. My Dad was diagnosed a year ago and yesterday went speeding down the street on his scooter with a smile spread across his face while my Mom ran alongside him laughing. To me, that is a couple with a great quality of life. My Dad can't speak or eat or walk for that matter, but he still has his sense of humour and faces every day with a positive attitude. He has shown me what true courage really is and I can't tell you enough how invaluable I think that is.

My best advice is to take one day at a time, stay one step ahead of the disease, make sure your Mom keeps her weight up, get yourselves as much support as you can and stay as positive as you can. I am happy to hear you have a close family. You have already shown that you love your Mom and are dedicated to her well-being. She is very lucky to have you! It's a bumpy road ahead but there are countless wonderful memories that have yet to be made!

All the best to you and your wonderful family.

Thelma,
Bless your heart, I could just see your mom and dad, how endearing.
Nora, you will be amazed how you can just put one day in front of the next, and just make it. I sometimes cannot believe the strength of the member's here, they take things that a normal person would cave under, and they shine through. Look at Beth, Pam, Mt Pockets, Lori, Granpa Al, Brooksea, Olly, Mare, Marjorie, Rose, Crystal., Joel,. Glenn's.The list goes on and on and on, those are inspirational people they continue to support and provide love for so many who come to this board. You seem like a lovely lady, and I am sure that did not happen by accident, your family will step up, your mom is not gone, she is here, enjoy every second, we will be here for a soft landing.

Hello Nora, Welcome to the forum family!

Like your mom and Thelma's dad, I have bulbar onset ALS, diagnosed in Jan 2008, and can no longer talk intelligibly or eat much of anything at all. After over 2 years since first symptoms my hands and feet are still somewhat functional (I use a cane and walker and have a wheelchair in reserve) but even with all of that I still consider myself to have a good quality of life. The statistics that are freely given out by many doctors have not changed to reflect the new technologies and techniques that we as PALS have been using in the past few years. When your mom can't eat or drink anymore she needs a peg tube, when breathing becomes difficult then she needs a bipap or a trache. Quality of life is all about attitude and making whatever you want out of the lemons that are thrown in your direction. We can still laugh, make jokes, have conversations, read books, watch television, go scooter speeding and do all kinds of fun things. Where there is a will there is a way.

As far as support groups or antidepressants are concerned I can't comment because the former is not available where I live and the latter is not something that I or my family has even considered. But you need to do whatever works for you and your family. My family is not really close but my sisters and I have lost both of our parents and my wife's father was killed in a car accident so we do know what it is like to lose someone that you love and it is never easy to deal with.

I guess that I can't really say that I haven't been involved with a support group because this forum fulfills that function for me and even though I have never actually "met" anyone here it has been really valuable for me to have someone to talk to.

While we all need to plan for the future we shouldn't dwell on it either.

Barry

It's funny, after I sent my message I thought of Barry, and what a helpful, kind member he is, and he posted a helpful message....we really are among the best group of people here, we are a group that is truley a family.

Welcome to the forum Nora. I am so sorry for the reason you have to be here. My Dad has bulbar onset also. When he was initially diagnosed my family and I went through a tailspin of emotions. The first few weeks I felt so much heartbreaking, overwhelming, mind numbing sadness. Now that we have had a few months to adjust we seem to have "settled in" and adjusted. I still get sad and boo hoo from time to time but I have found that my Dad is here and no one knows how much time he has - heck he could outlive us all.

You have come to a great place for information and support. This forum is wonderful. I spent hours going through old threads to make lists and ask questions.

The ALS Society is a great place for information and to learn about resources and support groups in your area. If your Mom has been referred to an ALS clinic, the team includes a social worker who can help you coordinate counseling or other means of support. I have found the ALS nurse to be phenomenal in helping us coordinate things my Dad needed.

Again, welcome to the forum.
Dana

Nora,

My mom was diagnosed early this year, at first I just was numb. Nothing seemed to matter. I cried a lot, was angry and didn't know how I was going to get through the day. Now like Dana said we have settled in and that isn't the main thing we think about. I know that is hard to believe right now, but we don't let that be the most important thing in our lives. We enjoy our time together, laugh a lot and talk about things we never would have. So in some ways this disease has helped us to be closer. So ha-ha ALS you haven't driven us to despair, you have made us better people. Sorry Nora every once in a while I get off track like that. I just want you to know that it will get easier and I debated the antidepressant idea also. I now have a handle on it so have decided I don't need them. Not everyone is the same and there is nothing wrong with admitting you need help to deal with this. Finding this site was the best thing I did, the people here are the best and have helped me so much. All I know is I take each day I have with my Mom as a great gift and I will not waste it. If there is anything I can do to help you please let me know.

Dana

Nora:
Welcome to the forum. I myself am a new memeber as my mother has Bulbar onset ALS . Her symptoms started in May 2008 when I noticed her taking very long to speak. At first I thought she had had a mild stroke as she also has hypertetion but it is under control. We had numerous EMG's and tests done and all came out negative and to this date are negative. But her speech is now totally unintelligible. She can still eat food but very slowly and carefully. She complains of constant Saliva production and inability to clear her chest. I took her to the ENT specialist yesterday and got her Salivary glands botoxed and will let you know if it made a difference.

I am in constant fear , stress and depression over this. I am very close to my mother and I feel paralysed with fear . I cry all the time even now as I am writing this. Being on this forum has helped me alot. I will contact the ALS society near here and that too I found out through this forum.

I don't think it will ever get easier to deal with this but atleast we all have a sounding board. I can not even imagine what my mother is going through. I will keep updating my posts and hope it helps other folks out there with PBP.

Sheena