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abnorm

Member
Joined
Sep 7, 2014
Messages
17
Reason
Lost a loved one
Diagnosis
07/2014
Country
US
State
Florida
City
Orlando
You charge way too much to join your club.....but Thanks for being here....We officially joined your ranks July 15, 2014

I'm Doug a CAL to my wife Pam.....we're OLD compared to many posting here.....Pam just turned 63.....she's been a legal secretary in Orlando "forever" .......we've been married for 35 years......no kids, no helpful family nearby

She's always been a little 'sick'.....Skinny, eat's but never gains any weight...... attributed to Crohns......Early 2013 included 3 units of blood as an outpatient....a huge amount considering she weighed about 80 lbs. July 2013 she complained she was weak and could no longer walk into work (garage/highrise/elevators) we sought help and got admitted to the hospital.....the Drs. worked hard to stabilize her fluids (Potassium/Sodium) finally settling on a very expensive drug called Samsca......They shipped her to nursing home rehab as fast as possible......that was brutal but she survived it........Home rehab was another story.....the home therapist had her walking alot with a 4-wheel walker......at this time her head dropped severly....WITH NO EXPLAINATION......with no support her neck became extremely painful and grossly misshapen.....Her spine MRI/CAT showed old damage but nothing recent.....A neck surgeon wanted to install a post......She had injections into the spine for pain......Physical therapy......a crappy brace

It's now about May 2014........Finally a new Spine Dr decided the front muscles were pulling her head foreward......"Let's inject them with Botox"......Yes, so we blindly (wait, I did ask her GP) .....and after many delays......bought the $1000 co-pay and had the injections (with follow-up outpatient physical therapy)......What a disaster! Once the Botox took effect her head hit her chin like a brick.......a scary wound appeared on her Chest and under her Chin.....It took several days and coaching her GP for a referal for a wound care......."Luckily" we ended up at a wound care clinic run by a different hospital group.....a Faith based hospital......They admitted her immediately in a private entry......no ER

The next few days are a blur....at one point a group of eight Drs and helpers are standing around me asking questions....."Who is her Neurologist"....' she doesn't have one'......SILENCE !

The Neuologist gave us the bad news.....ALS.....there was a muscle biopsy.......a referal to Mayo in JAX for confirmation......but she's no candidate for that trip........Dr Oppenheim is respected but WHO knows......

So we're home...one week out....."I Got You Babe".....24/7.....She's bedbound....Catheter .....Oxygen via Nasal Canulla......Trillogy for a couple hours to fluff her up....(at least O2 stopped her smoking even tho she wants ONE).......Nasty butt sores/damn hard mattress/air is ordered.....Eating good.......supplements.....But Depressed!

She was retired Dec 2013....with a company policy retiree health plan (we pay of course) Thank God she has that......and a 401k that's almost gone.......

She also has a LTD plan with the Law Firm.......NONE of her former Drs would fill out the paperwork ? I guess NOW it should be easy?

We have touched base with a local ALS group....Howdy!.....Her neice's daughter and their California ice skating team did the "Ice Bucket" thang in honor of Pam

Well thanks for listening .............dougandpam
 
There is no charge to join this forum. There is a link for donations but you don't have to pay a dime to be here. Few do
 
Dalvin, Think Abnorm was referring to the price meaning you have to get ALS to join- and that is indeed, an awfully high price! Abnorm, sounds like you have already had a long, rough road that won't get easier. This forum is a great place to surround you in understanding, caring, and valuable information. Sorry you have to be here, but welcome.
 
Doug, welcome to the place no one wants to be. You will find caring, loving and very smart people here. Know that we understand all that you're going thru and what you will have to face. You are not alone.

Debbie
 
Sorry Dalvin....I was just trying to say: ALS SUCKS

Thanks Cheerleader for your welcome................dougandpam
 
Misunderstood. Welcome. And your right, getting ALS as an admission charge sucks and so does als
 
Hi Abnorm, so sorry to see you here, but welcome. What a rough road y'all have been on.
 
Welcome, you are so right, the admission charge ia a killer
 
>You charge way too much to join your club

Sorry to see you here, but welcome.

you're right, the price isn't worth it, but iiwii ...


-----
Max - Thursday, September 11, 2014 9:17:50 AM
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onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

.
 
Doug so sorry to read your wife's story. Since you haven't had the second opinion, and if you are able to, please mention Eaton-Lambert Syndrome to the specialist. My neighbour presented with symptoms very similar to your wife's with the sudden weakness and then drooping head. Initially he was diagnosed with ALS and finally Eaton-Lambert Sydrome. Lambert-Eaton syndrome: MedlinePlus Medical Encyclopedia
 
>Pam just turned 63 ... we've been married for 35 years

me 62, Sandy 64 (cradle robber), daughter studying neuro-bio in Germany past 8 years, son married to a SEAL team member stationed in San Diego. more in blog area :)
 
Hi Abnorm, Welcome to the Florida contingent. A dubious honor to be sure but very supportive just the same. You will find lots of knowledgeable people here in many different places on the ALS road. No question is dumb or offensive. Someone has probably gone through it. Ask away. Steph
 
So sorry you find yourself here, the people here are truly lovely and I hope you find some comfort and answers and advice here x
 
Thanks Laurel......I've been reading about LEMS all day now.......wow

She was a smoker and has two small spots on her lung.......dougandpam


And Thanks ALL for the warm welcome......yeah Max....I got me a cradle robber too!
 
Doug glad you figured out which syndrome I was talking about as I reversed the name! Sorry about that. Best regards to you and Pam.
 
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