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
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