The ONLY constant in life is change

[indigosd]

Today my husband was diagnosed with Bulbar Onset ALS. You all know what we are going through....every emotion imaginable. I posted in June under the ? ALS forum and I want you to know that this forum has given me such hope and allowed me to be a strong advocate for my husband because of the information that I have found in this Forum. Thank you for your courage and vulnerability in all of your posts. We are going for a second opinion with the Mayo Clinic. I'm not sure why. Is it possible to send private or personal messages in this Forum? We need to tell our 12 year old son tomorrow and I wondered if anyone had a suggestion on how to best support him...there is no easy way but I wondered how the rest of you have handled it with children in this age group. Tonight he is on a overnight with a friend so we have the blessing of time for a prayerful preparation and some much needed down time for DH & I.
Thank you.

 

[pvale]

Hi

Sorry for the reason of being here, but
I wish you the best of God's love and help
in this trying time. I'm in the middle of ALS diagnosis
and I can feel for you for everything you are and will go through.
As, a lot of people here say, keep a positive attiude
and understand that everybody here will help whenever
you have a question. This board and the people on it
have been invaluable in the information here about
all stages of the disease.

Where in SD are you? I moved to Missouri in June of 2006
from Colman SD, just a few miles east of Madison.

Perry Vale

 

[bleonard4]

I am sorry for what you are going through. I had to tell my kids that their Aunt Cath had been diagnosed. I couldn't imagine having to tell my own child. I used a web site I found that seemed to put it in pretty simple terms for kids to understand. We talked and then we sat down and read it together. I wish you the best for what you must go through. The web site is below.

http://www.catfishchapter.org/learn/kids/index.html

Take care,
Barb

 

[GlenBrittle]

I am sad that this is happening to your family. Contact your ALS society if possible , they have people that are experienced on how to handle all aspects of ALS and life with it.

Personally, I would stage the explanation to a 12 year old .

I would tell him that his father is sick , and explain that there is no way of knowing how bad or how fast it will get. Take it right down to "He might end up in a wheelchair requiring help from the family to do the things we find easy today."

If the "D" word is brought up , I would explain in life , eventually everyone must pass , and that he might pass a little sooner.

Make the most of life while you can. Have him explore the computer programs that assist talking with his father , thus contributing rather than worrying.

that's my two cents. Its never easy to say it , even though my 2 kids are 25 & 29.

I hope this helps.

Glen

 

[brooksea]

Very sorry indigo! Group hug for your family...

Glen's got good advice on this. That is the way we have handled it with our 9 year old son. And he did ask one day if he daddy was going to die. I told him almost the same thing Glen has posted about everyone must die some day. Only I did give him hope that the doctors and scientists would find some medicine to help him.

You know your son better than anyone, so go with your instincts on how technical you get. Sometimes their eyes glaze over, but they really are listening.

Oh, one more thing. We waited a while before telling our son, as my husband was still working and we were in too much of an emotional upset to be able to tell him anything without breaking down. We did not want to burden him in that way (he was 6 years old at the time). We wanted to be as positive as we could about all of this.

Good luck to you and your family indigo...

ps- you will need to be on the forum posting a bit longer to private msg.

 

[hopingforcure]

My son was almost 13 when I got sick, he is an only child and smart beyond his years. He already was aware that something was wrong. We just take it one day at a time. Hope this help's. We are here for you.

 

[brooksea]

Just reread my post. I meant to say "Only I did give him hope that maybe the doctors and scientists would find some medicine to help."

 

[GlenBrittle]

You had it right the first time CJ. Think positive.

Glen

 

[indigosd]

Thank you all for your words of advice and heartfelt support. I didn't get your responses but we handled it in the same way that you suggested. Our son is very bright and has known that something was wrong for quite some time. He thought it was Cancer. He is very sad as are we. The first thing he did say was that his Dad was going to die. Apparently they studied ALS/Lou Gehrig in school this year. We told him that everyone is going to die "sometime and no one knows when that is" but the gift that ALS has given us is awareness of how precious and wonderful it is to be in the present moment. That is such a gift! We are putting our energy into positive healing strength. The past is gone and the future is unknown-we are loving today. I am working diligently to keep facts facts and feelings as feelings. We cry when we have too and laugh when we can and think hard about gifts and blessings and absolute miracles. This is so much bigger than us. It isn't just a personal journey. It gives so much opportunity for growth for everyone who life touches our lives.
Hopefully we will get the promised phone call from the Social Worker today from the ALS Clinic. She is suppose to assist us with the application process for SS disability. The financial part is overwhelming. Wayne is our sole support and his job has never had sick time [don't think he has disability either] When the economy went bad we lost our business, our savings, our retirement and investments went to nothing [had them all in high risk] and we have no life insurance. Uffda Isn't hindsight wonderful! lol Who knows...maybe it is better in this situation to be impoverished! I have some questions that I need assistance with from someone on this journey. Where should I post them? We started Vitamins and Nutritional Therapy back in June and I would like to post what I give him and see what the rest of you think. Has anyone tried acupuncture? Does anyone take Rilutek and Lithium? The ALS Neurologist doesn't believe that a PEG helps! Can you even believe that?! We may have to fire her and find someone else. That is over the top! Is there a Teen online forum for teenagers of PALS? I know it is a lot to post in one post but I have soooo many questions!

 

[brooksea]

indigo,

Hope you get the call from your Social Worker soon. I've never heard of a doctor saying a PEG doesn't help! In what century do they exist?

My husband takes Lithium. We have no way of knowing if it slows the progression, but we do know if he stops his cramps are unbearable.

 

[indigosd]

Brooksea-I so appreciate your advice and assistance! I am off to investigate the web site and register. I did not get the call from the Social Worker at the ALS Clinic but I did get to speak with the Nurse from the Minnesota ALS Foundation and she was so helpful-also connected me with their Social Worker who was FABULOUS! South Dakota does NOT have a ALS Foundation but the MDA will will work with us. I began the application process for SSI and will have the phone interview with them on Friday. Guess we will have to wait 5 months before we get a check. Our insurance does not cover medications and I do not have the $900/month for the Rilutek so we will not be able to start that until the medicare kicks in. Really frustrating. grrrrrr So ridulous. I am praying that Obama's Health reform will pass soon! I called his employer and he is on Terminal leave and will receive a small disabilty check from them for 6 months and we will need to pay our copay/month and will still retain our health insurance for that time. Then I will have to apply for medicaid-sounds like Matt will be covered but not me. Oh well. This is quite the journey!

 

[miss91]

Keeping you in my prayers, indigosd - especially for comfort for you son. He sounds like a great boy! God bless. Missy

 

[Al]

online support for teens

Here is a website run by the ALS Society of Canada for teens.

AL.

http://www.als411.ca/

 

[MtPockets]

I like the others am amazed a Doctor would say a PEG tube would not help. I feel like asking him how would you like to starve to death slowly while your mind, will, and emotions are intact? Many on this site are using PEG tubes and I have already been to my appointment for the evaluation to have one put in when needed.
As I have said so many times before I wish some of these Doctors would come read the Forum. There is a wealth of information here about what works and what does not work.
I was told by my Neurologist that Riluetic would possibly only extend my life for 3 to 4 months. At the price it cost, it was not worth it for me.
I have tried acupuncture, bio feedback, most everything and nothing helped me except prayer. Each of us has to work through this in our own way, but know you are not alone. We have all been down the same path you are traveling and felt all the emotions that come with this horrible disease.
My advice is to make memories, good memories by doing the things you can do now before the ALS progresses. I have 4 children and 16 grand children and I am working to give them good memories of Grandpa. Concentrate on the things you can do each day,and not focus on the negative. A positive attitude and prayer can make a world of difference in your life.

 

[Erica]

Hi, I'm so sorry about your husband recent diagnosis.
I know that Rilutek maker(Sanofi Aventis) should provide this medication to you for free based on your financial situation until your husband medicare starts.
Please call the below number and ask for Rilutek care program coordinator.
Your family is in my prayers,Cookie
sanofi-aventis
55 Corporate Drive
Bridgewater, NJ 08807

Tel:800-981-2491