Just Diagnosed Today 6/17/14

[BlueEyesOhio7]

Hello,
I'm joining this club as of today. My Doc is putting me on riluzole. This is indeed an emotional roller coaster! I was diagnosed in less than a month and I'm reeling from all this. I go from denial to despair. My husband, the same.

This is a VERY upsetting time.
I have this picture in my mind of me sitting on the examining table with my feet hanging off my husband sitting in the chair next to me. The Doc is talking about how they diagnose ALS. My hubby asked about 5 times, “Does this mean she has ALS?” He wasn't ready to say it. The Doc. My husband finally said, “Just give it to me straight, is it ALS?” and the Doc said, “Yes” He said there is one more thing it could be Myeloma. He sent me for a blood test. He said without the blood work he was 99% sure, if the blood work comes back negative – he is 100% sure.

Sheesh, what a ride! I'm exhausted!

Is there any articles posted about coping with this and helping my family cope with it?

Lynne :-?

 

[Atsugi]

Welcome back. Sorry to see you here. How old are your children? How old are you? Are you a veteran?

I ask these things because they all make a difference, in my view, of how you look at life from here on out.

For one thing, denial and despair will literally waste your time. My wife had an exceedingly fast progression--eight months. That is rare. Still, even if you have ten years left, denial and despair are a terrible place to stay for long.

When my wife was diagnosed, she (being a doctor) knew exactly what it meant, and burst into tears. I could only say, huh? What? I don't understand.

There are some who would advise you to live life to the fullest, go on vacations, and do the things you always wanted to.

Then there are those who say you can use your remaining time to provide for your family's future.

I'm very practical. Someone's got to focus on life insurance, your will, and preparing your home for the day when you'll need a Power Wheel Chair. My PALS and I coped by keeping ourselves very busy.

For one thing, I believe that the role of the CALS is so important, that he should come on this forum himself, to learn how to take care of you when the time comes.

Sorry if I'm a bit rough. Like I said, I'm more comfortable with the practical side of things. You'll find most other people on this forum are very good at the touchy-feely side.

--Mike

 

[MaxEidswick]

>My hubby asked about 5 times, “Does this mean she has ALS?” He wasn't ready to say it. The Doc. My husband finally said, “Just give it to me straight, is it ALS?” and the Doc said, “Yes” He said there is one more thing it could be Myeloma.

ditto all that Mike said, but I would *always* recommend a 2nd opinion from an ALS clinic or ALS specialist neuro -- oner who has studied under a serious ALS team.

FWIW and kind regards,

Max

 

[BlueEyesOhio7]

Thank you Mike and Max,
I don't mind “to the point” I'm VERY direct myself.

I am grieving and this is a natural process to go through. Maybe you guys didn't need that but I sure do. My hubby and I have already had “the discussion” It was very honest and covered ALL the bases.

I appreciate walking with you guys!

I'm 64 my kids are 45 and 39. No military for me. My will is in place, life insurance, all that stuff.

Yes, I know denial and despair are a waste of time, after a time. Denial is a VERY useful tool (for a short period of time) that helps a person wrap their head around a shock. And this diagnosis is a shock. I believe it's God's cotton He wraps around you until you can accept this, slowly. Very healthy, very normal.

I am NOT one to feel sorry for myself – I will have a good attitude. It's in my DNA.

Lynne

 

[BlueEyesOhio7]

Yikes! Forgot, @Max: This is my 2nd opinion from a Doc who is head of an ALS clinic and written several books about ALS. He has 30 years experience.

Thanks guys!

Lynne

 

[Atsugi]

Dual post. Sorry.

 

[MaxEidswick]

>Yikes! Forgot, @Max: This is my 2nd opinion from a Doc who is head of an ALS clinic and written several books about ALS. He has 30 years experience.

:-(

 

[MaxEidswick]

>Yikes! Forgot, @Max: This is my 2nd opinion from a Doc who is head of an ALS clinic and written several books about ALS. He has 30 years experience.

:-(

 

[Mediasmart]

well, i'm lost.

 

[pearshoot]

there are a lot of posts about copping...just ask your question...you will get answers to help you...that's a job we all are willing to do...success

 

[BlueEyesOhio7]

Thanks pearshoot! I'm feeling much better this morning ;-)

Yesterday was a stressful and roller-coaster day. I'm trying to think of the things I need to do and who needs to know. I have told one daughter and various friends.

My husband and I have had several really in depth "talks" It's all good.

It helps to come on this site and share.

Thanks, Lynne

 

[Janie H]

Welcome Blueeyes, today is my one year anniversary since being diagnosed. I still remember sitting in the exam room and getting the news. Takes time for it to sink in, I thank God every day that I see the sun come up.
Janie

 

[MaxEidswick]

> today is my one year anniversary since being diagnosed

how are you doing, Janie? I have 70 dtg before my 1 year ...

 

[BlueEyesOhio7]

Janie,
It's a "One Day At A Time" disease. When I get to thinking about next week, next month, etc. I have to say, "Whoa, bring it back to today" that's all we have anyway is today.

Thanks for the welcome.
Lynne

 

[BlueEyesOhio7]

Is there a medication that slows down the twitching? Is there a med for cramps? I am taking a muscle relaxer prescribed before diagnosis. It's called Metaxalone or (brand name Skelaxin). I have been hesitant to take it as it was prescribed before diagnosed.
Lynne