ALS Newly Diagnosed

Leon · 07-02-2009, 02:15 PM

Dead End Ahead?

Contracting ALS (amyotrophic lateral sclerosis) is among one of life's most troubling diagnosis, it has no cure. Even a veteran neurologist has a tough time reaching this dreadful conclusion. When the testing begins, your surroundings turn to black and white followed by long sleepless nights. Your stomach is put on notice and your appetite disappears. You're hoping for something to go wrong or a medical error that produces a blessing. After two weeks of searching, hoping, and investigating, you're ready for the torture to stop. To relieve the stress you anxiously beg for any decision. All the while you are asking, "How could this be happening to me?"

This alarming decision has taken on the new look of a crisis and will take you to a new crossroad. You have just been diagnosed with a terminal illness, ALS. Your search for answers has only begun and probably by now you have already pushed the panic button. No one is sure what journey they will have or what their suffering level will be. Could it be that you have been harboring this illness for the last several years? This is your new battle, one you have never fought, but one you seriously need to prepare for.

That old adage "The Truth Will Set You Free" is the sword revealing two blades. You will load your mind with tons of medical information and a majority of that may not even apply to you. The progression of ALS and length of survival after disease onset are both highly variable from one person to the other. All this information may be detrimental to our health and can create an unnecessary lethal panic. We wrap ourselves in emotional fear but we forget one important fact. We still must live our life and we need to hope for better days, whatever the age. How is living life going to be possible?

Your first action plan is based solely on knowledge. How can I mentally prepare to take charge of every change that will affect me? There is a long string of medical definitions related to ALS and questions surround all of them. You should start with two basic categories, what are my physical and medical needs going to be in the next few months.
Action plan number two is based on the fact that you still need to live. The life basics are that you need to, sleep, eat, breathe and laugh. Maybe you have family and friends that will support you as long as possible, maybe you don't. You'll need close ties to a support network, if not you should find one quickly. In your search you'll find that a small percentage of ALS patients have lived more than 10 years. You may even have goals and dreams that haven't been met yet. There are ALS patients alive today that have overcome all kinds of odds and each day of life has had a new beginning.

It's not uncommon for you to be stuck at this crossroad but understand soon you must make choices. The real solution is a peaceful mind followed by your choice of religion or spirituality. If it's any consolation, God is not going anywhere, and he'll always be there when you need his consultation and guidance. Believe in Hope.

hopingforcure · 07-02-2009, 02:21 PM

Wow how inspiring. I think anyone that read's your post will be moved. That was so heartfelt and kind.. I hope all the members on this forum read this..Whatever our belief's we should all have a Spirituality... It is about inner Peace.. Thank you..

olly · 07-02-2009, 03:51 PM

leon that was an amazing heartfelt post that only a pals could write.
i hope the new pals and those panic stricken ones who are not can gain some comfort from your wisdom. godbless

joelc · 07-02-2009, 05:55 PM

I saw that post differently and if I misinterpreted it I appologize. Am I the only person who accepted my diagnosis without falling apart or crying for weeks?

BarryG · 07-02-2009, 06:20 PM

Joel, I'm with you. I have never looked for or received any guarantees about what direction my life would take and when I got my diagnosis a year and a half ago I realized that there was no point in crying or falling apart. It was just something that had to be dealt with and I would make the best of whatever came my way. I just look forward to each day and enjoy the love and support of my friends and family (including all of my friends on this forum). I'm sure that everyone who has a diagnosis has thought at one time or other "why me?" but I have also thought "why not me?". I am not that special!

Anyway, thanks for the thought provoking post. Leon.

Barry

hopingforcure · 07-02-2009, 08:16 PM

Joel and Barry,
I think you guys had amazing attitudes, and I think so much is to be admired about that. I think I worried about my son, husband, and other family members. I just was so guilt ridden, but have finally realized why not me like you guy's said.. Why not us?? You know that is the beauty of this forum, so many views to be taken, so many lesson's to be learned, so much guidance provided, it seem's like all of can find someone we see ourselves in on here.. Thank goodness for this wonderful place..

joelc · 07-02-2009, 08:56 PM

I am also a firm believer that ALS does not have to be fatal or unlivable.

Yes, it definitely has its uncomfortable moments and I have had my share, like severe itching, swelling legs and feet, etc. But they can be overcome and if a person maintains a positive attitude life can be really good. With all the technology available to us today we don't have to live a locked-in existence.

I have always tried to be one step ahead of my progression by installing lifts, modifying bathroom and bedroom, etc. I even got my PEG, and my trache and vent before I jeopardized my health and caused my wife some trauma.

With everything in place before needing it there was no worry for my wife and it did not cause her any undue discomfort. I have always been this way, very practical and pragmatic. I don't loose sleep over things I have no control over.

Sorry for rambling but there have been too many people here lately that have fallen apart at the thought they may have ALS.
For goodness sakes, at least wait until you have an ALS diagnosis.

Life can still be excellent! It is up to you.

brendapals · 07-02-2009, 10:02 PM

Oh yeah, Life CAN still be excellent!

I'm also in the group that says "why not me"-I still tell people all the time that God picked me to have ALS because only He knew I wouldn't shut up about it!

And honestly, 13 months after dx, I'm doing wonderful! Busy with our boys, enjoying every minute of every day. I'll admit, I cried some at first-maybe the girlie thing in me-but now when I cry it's because either I forgot to take my meds, or I'm laughing so hard it just turns to tears!

Yep, I'm gonna keep living!
brenda

joelc · 07-02-2009, 10:10 PM

Oh Ya! ! That's what I like to hear Barry and Brenda!

Who else is part of this crowd?

GlenBrittle · 07-02-2009, 11:18 PM

Well , I think that's great Brenda.

I am going to stick around too. Cant live up to my new rep if I'm not here EH !

Joel, when they trach you , you give up what voice you have left, correct ?

Glen

joelc · 07-02-2009, 11:34 PM

No Glen, that is what they try to tell you but it is not true.

If you could talk before there is no reason you can't talk after.

I have what they call a cuffless trache tube. I am still talking just fine, I also got back my ability to eat after my trache.

GlenBrittle · 07-02-2009, 11:39 PM

Joel,

I am so happy to read this. I will sleep well tonight with your answers in mind.

I am sure Wanda (the better half) will be glad to read this too.

Time to count some ZzzZzzzz

Good Night
Glen

Zaphoon · 07-03-2009, 09:04 AM

I'm not ready to go casket shopping yet. Maybe its only because I'm looking at PLS

PZ

Al · 07-03-2009, 10:53 PM

I'm not ready to check out yet. Was at clinic Tues. and they still think I have ALS Weird type but still ALS. Ya I was hoping that when Doc hit me with hammer I'd wake up but that didn't happen either. I've been really busy doing stuff, visiting, docs, eating out and just enjoying life. Thanks to those of you who pick up the slack for me.

AL.

Leon · 07-14-2009, 04:18 PM

In your search you'll find that a small percentage of ALS patients have lived more than 10 years. You may even have goals and dreams that haven't been met yet. There are ALS patients alive today that have overcome all kinds of odds and each day of life has had a new beginning.

When the shock subsides your mind takes control--As you get weaker you will also get stronger -- at times your caregiver may misinterpret this as stubbornness -- temper your strength--this is only the beginning.