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MaxEidswick

Legendary member
Joined
Sep 1, 2013
Messages
5,567
Reason
PALS
Diagnosis
08/2013
Country
US
State
Texas
City
Pinehurst
My husband collects both his SSDI, LTD from his employer and his Veterans disability benefits. SSDI is a cheque every month and medicare, but as a veteran you qualify for 100% coverage, which includes all durable equipment, a mobility van grant, a substantial special adaptive housing grant, HISSA grant, for immediate adaptations for your home, CHAMPUS VA medical benefits for your family, and educational benefits for you children under the age of 27, and your wife. I am surprised that this isn't already set up for you by your PVA representative.
I don't know what we would have done with out the VA benefits. Also they will pay for your home care, even if it is your wife.
Paulette

Thanks for all the info, Paulette. I will follow-up this week. I have to check with HP to see what happens to my company insurance as things go downhill.

I always told Sandy and anyone else who would listen that my 4 yrs in the service and tours in 'Nam were a waste of time. Turns out I was very wrong :)!

Max
 

zoohouse

Senior member
Joined
Jan 14, 2013
Messages
958
Reason
CALS
Diagnosis
07/2012
Country
CA
State
B.C.
City
Salmon Arm
There is a definite connection between military service and ALS, especially people who were in the airforce. Tim did 7 years in the airforce working around the fuel. We met a gentleman the first time he was at the VA who had a very virulent case of MS, and he said that 80% of his squadron was either dead or had MS. He said that they had linked it with a chemical in the de-icer that they used on the jets. Initially they deemed ALS as 30% compensatable, and only a fews years later changed it to 100%.
 

allformom

Member
Joined
Nov 24, 2013
Messages
11
Reason
Loved one DX
Diagnosis
11/2013
Country
US
State
va
City
chesterfield
You're exactly right..it is about quality over quantity. ..it's just getting there..to that place where you don't give up the fight necessarily but coming to terms with that fact that nothing is guaranteed. You all know better than I do how difficult it is to get there. I know in my heart that is where I should be and want to be it's getting the mind to to get there..I pray for everyone one of you on this site bc unless you've been personally touched by it, you don't truly understand. Your words help me step by step, day by day, to remember that there is always hope ..and hope and faith can be so very under estimated.i heed all of your words and thank you all for sharing words or wisdom and kindness.
 

dbltree

Distinguished member
Joined
Jan 3, 2013
Messages
217
Reason
PALS
Diagnosis
01/2013
Country
US
State
Iowa
City
Birmingham
I got fitted for a PWC yesterday, may vary by state but Medicare requires the PWC rep and physical therapist be here at the same time. Then a face to face with MD or nurse practitioner and then roughly 2 week wait for chair to be built and delivered.

I have Medicare which pays 80% and BC supplement which pays the rest, however BC won't cover anything Medicare doesn't so the lift seat option is roughly $450 out of pocket.

Mossy Oak camo is an extra $800 ...bummer! :lol:

I'm getting a Quantam Q6 Edge, center drive so I'll share pros and cons after using it awhile.

If my voice continues to worsen I'll go thru same process with speech therapist for eyegaze communication. Still walking with walker, eating, breathing and talking but better to be prepared for the worst...;-)
 

ShereeB

New member
Joined
Jan 31, 2013
Messages
4
Reason
PALS
Diagnosis
06/2012
Country
US
State
Nevada
City
Henderson
I am also sorry your here too! Make the most of each waking moment . For pain I drink tonic for those awful cramps. I used to also have pain! I rub coconut oil on muscles, and anywhere it hurts! It takes the pain away ! I also take 2 tablespoons twice a day.

Keep moving, keep your faith strong. Also keep an eye on Brainstorm, out of Jerusalem. They are on to something!

God be with You!

Sheree
 

dbltree

Distinguished member
Joined
Jan 3, 2013
Messages
217
Reason
PALS
Diagnosis
01/2013
Country
US
State
Iowa
City
Birmingham
Thanks Sheree and God bless!
 

MaxEidswick

Legendary member
Joined
Sep 1, 2013
Messages
5,567
Reason
PALS
Diagnosis
08/2013
Country
US
State
Texas
City
Pinehurst
Yes it is my favorite exercise tool Max, bought on Amazon for $300 but better quality ones are in $1500 range. Helps with spasticity and atrophy and pretty safe to boot.

We got ours last week and a neighbor came by to help set it up. Fist time I tried it, it would not turn. Turns out the wife turned off the power switch on the base :).

Do you leave yours on? Is it still working for you?

Max
 

dbltree

Distinguished member
Joined
Jan 3, 2013
Messages
217
Reason
PALS
Diagnosis
01/2013
Country
US
State
Iowa
City
Birmingham
Yes we leave it on Max, still working great :)
 

Allendonna

New member
Joined
Sep 26, 2013
Messages
4
Reason
PALS
Diagnosis
09/2013
Country
US
State
NY
City
Huntington
I am diagnosed and confirmed. Does anyone know if there is a correlation between an area where one experiences fasciculations and whether that particular area is on its way to being affected. I have fasciculations all over but I notice my neck and throat are extremely aftive now.
 

dbltree

Distinguished member
Joined
Jan 3, 2013
Messages
217
Reason
PALS
Diagnosis
01/2013
Country
US
State
Iowa
City
Birmingham
We had a new commode installed which is 3" higher then the one we had and fitted it with a Bio Bidet BB 1000 bidet cover. It works very well when hands don't :wink:

A gracious friend loaned us an EZ Way light sit to stand lift which is oustanding, though I don't need it yet it will lift one up to standing posistion or via sling.

We tested it and my wife can lift me from a chair, transport me to bed, over the commode or the shower chair.

Still walking, talking and breathing on the Deanna Protocol and a company has come with 90% of items in one powder mix as well as liquid AKG which makes it a breeze to take. Details in my journal on Winning The Fight

Have a blessed Christmas all
 

tbananna

New member
Joined
Apr 25, 2013
Messages
4
Reason
CALS
Diagnosis
11/2012
Country
US
State
Ohio
City
Bedford
My husband got it from handling agent orange in Vietnam. The Va has been very supportive
 

allformom

Member
Joined
Nov 24, 2013
Messages
11
Reason
Loved one DX
Diagnosis
11/2013
Country
US
State
va
City
chesterfield
If you don't mind me asking how much was the commode with the bide? We've tried several extensions that have been successful. They either don't seem to fit correctly or are unstable.
 
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