Re: Accepting Your Disability

[Guest guest]

" Accept your disability " and " you need to accept your disability " are

too often just code words for " you need to shut up and accept the

injustice, segregation and isolation we're shoving down your throat

and/or want to ignore and be at peace. "

" Acceptance " can be just another way to keep crips from getting uppity

and disturbing the status quo.

I'm sick of the status quo, and, no, I don't want to " accept " it.

Nick

[Guest guest]

Hi Beth,

My progression has been slow...for which I am grateful for..My SMA affects me

from my hips to my feet...I can still walk with my walker....I won't be winning

any marathons anytime..but that's fine with me...lol...I use my 3 wheeled

scooter for longer distances....shopping..appts...vacations.....my breathing and

eating aren't affected.....a friend of mine who also has SMA has her weakness in

the upper trunk...from her waist to her shoulders are affected.....she was

diagnosed several months before I was....

I got sick (very sick) last December which ended up with me having surgery

(none of this was related to my SMA) and it took several weeks for me to get

back on my feet...I had extensive PT & OT .....my determination and positive

attitude...got me back on my feet...as well as the Love & Support from my

husband and our families and friends....I was away ( Hospitals/Rehabs) from

December 20, 2005 until May 4, 2006 and I am looking forward to spending the

holidays at home.....if I didn't have SMA I would have been home lots

sooner..however when I got sick my SMA took my body right down to where I

couldn't stand or walk...I am feeling wonderful and doing great.

I also was diagnosed in Pennsylvania...at HUP (Hospital University of

Pennsylvania) that was in August of 1986... since my 2 brothers & 2 sisters

don't have SMA.. I couldn't answer your question if it is rare for 1 child to

have on type of SMA and a sibling to have another type.

Be Blessed..

Nick Congrats on your Award!

Beth Carollo <mbc543@...> wrote:

Thank you and Robin for your reply. I'm sorry if I am repeating

myself. Apparently, you both are the only child effected by SMA. Your siblings

are not. If anyone has SMA of any type and has a sibling with SMA which is a

different type- could you let me know. I have type 3- my brother was diagnosed

with adult onset back in Pennsylvania. However, my neurologist here in Phoenix

does not feel my brother has an accurate diagnosis. I would like to know if it

is rare for one child to have one type of SMA and a sibling to have another

type. Thank you in advance!

Peace to You,

Beth

P.S. and Robin- would you mind letting me know what your limitations are as

you both have adult onset- I would like to see if my brothers symptoms are

similar? Also, could you explain how your progression has been? Thanks so much.

Re: Accepting Your Disability

I am 47 (soon to be 48 on Christmas Day) I have the Adult Onset of SMA (Type 4)

....I am also married for 22 years to my wonderful husband who isn't

physically challenged..I was diagnosed with SMA 2 weeks before Our 2nd Wedding

Anniversary...

WE have been through everything together...

Be Blessed..

Tomlin <sjtomlin@...> wrote:

Well said, !

Every day is different. Some days when I am in more pain or weaker it's a

struggle and I feel more depressed and I worry about tomorrow and what that

will bring. It also seems the weaker I become the more they cut back the

Home Care Services. My worst fear is ending up in a nursing home while I'm

in my 40's!!

I suffer from anxiety, depression, low self-esteem and

poor self-image also.

Who is the oldest person on this List?

Take care

Bye for now

" All that I am or I hope to be I owe to My Mother & My Father "

Mar

---------------------------------

Want to start your own business? Learn how on Small Business.

[Guest guest]

I am one of 15 children of which six of us were diagnosed with SMA Type 1

(no, that is not a typo). However, as time progressed it became obvious

that, at least, three different types existed within the family. I, along

with two others, never sat without assistance, although the two passed away

at the ages of ten and 11...Type 1. Two others sat unassisted, one into his

mid-twenties when cancer took his life...Type 2. Finally, the youngest

walked until he was around 13 years old...Type 3. Yet, we were all given

life expectancies close to the age of two...one passed at ten, another at

11, still another at 21, and finally another at 26 from cancer. My brother

and I are still hanging in there, he is 32 and I am 35.

Amy M. Marquez

Diagnosed SMA Type 1 (3 Months of Age)

Trach, Suction Machine, Nebulizer, Cough-Assist, BiPap/BiFlex

Married to Steve - Since October 1998

Mom to le Coral, Born July 1999 (SMA Free)

Mom to Harley Jasmine, Born March 2004 (SMA Free)

Service Dog Team - Since July 1995

Re: Accepting Your Disability

Thank you and Robin for your reply. I'm sorry if I am repeating myself.

Apparently, you both are the only child effected by SMA. Your siblings are

not. If anyone has SMA of any type and has a sibling with SMA which is a

different type- could you let me know. I have type 3- my brother was

diagnosed with adult onset back in Pennsylvania. However, my neurologist

here in Phoenix does not feel my brother has an accurate diagnosis. I would

like to know if it is rare for one child to have one type of SMA and a

sibling to have another type.

[Guest guest]

Hi Meg,

Sorry if this post is too late to help, I'm behind on email. I wanted to

answer your email b/c lately I've had these feelings. So hopefully answering

your questions will help me put down in words how I feel and get it off my

chest.

A Question for Everyone:

How do you know whether or not you have accepted your disability?

First of all, what exactly is the definition of acceptance? I mean, I

realize I have a disability that has caused irreversible changes and I can do

nothing about that. Is that acceptance? I think every professional has a

different take on what exactly it is. If it includes being totally content

w/the

way things are then I'm not sure you can totally accept a disability like SMA.

I believe it's an ongoing process for people w/SMA b/c its a progressive

disease. Personally I don't think anyone is totally content w/the way their

life is all the time, disabled or not. Fundamentally I do not think acceptance

is what you need. What you need is good coping skills. I had to learn how

to cope w/losing abilities (and learn how to more and more everyday) . If

you can adapt to the changes, it can make your life closer to being content.

Are there any of you out there having problems with acceptance?

I'd have to answer yes to this question b/c I have my good days and bad

days. Like I mentioned above I think coping is what really matters in the long

run. Some days I cope well and feel like I accepted my SMA. I'll even admit

there were some points in my life where I believed I wouldn't change my life

for anything. I believed having my disability brought me experiences I

valued and would have never had if SMA wasn't a part of my life. But I'll also

admit there are days I cope horribly, especially as I grow older, lose more and

more physical strength, and watch everyone around me have experiences I most

likely will never have. Those days I may have a personal pity party and ask

God " are you torturing me? Why me? It's not fair... " I hate these ideas

and have been trying hard to change my mindset, but it's not easy. I feel like

my head is filled w/negative thoughts sometimes and I'm drowning in them.

What helps me in those times is someone, usually , will remind me what I

do have I'm thankful for that other people I envy may not. Sometimes I'll

even sit at my computer and type a list of everything I'm thankful for or

everything I can do. Sounds kinda elementary, but it does help redirect your

focus on things.

Has acceptance come easy or naturally to any of you?

I'm not sure total acceptance of anything negatively affecting one's life

comes naturally. It's not how society and today's human nature is. No one

wants something negative, we want good things. Maybe it's wrong to think a

disability is a negative thing, but it does stop you from doing things most

people can do. No one likes to be held back from what they want to do. If

they

did, wouldn't they be crazy? Those are the people professionals need to help

IMO, haha!

I hope this has helped and I hope you don't feel alone b/c you aren't.

Smiles,

Kimi

In a message dated 11/1/2006 10:06:35 P.M. Eastern Standard Time,

margrett@... writes:

A Question for Everyone:

How do you know whether or not you have accepted your disability?

Are there any of you out there having problems with acceptance?

Has acceptance come easy or naturally to any of you?

I ask these questions because I've been told by a few professionals

that the reason for my anxiety, depression, low self-esteem and very

poor self-image is because I haven't really accepted my disability. I

keep saying that I have accepted it, I just hate what its done to my

life and how others treat me. But that's the same as non-acceptance.

How do I accept it? How have some of you accepted your disability?

Is it even possible to truly accept being disabled? What does that

mean exactly?

I hope you guys will share your thoughts on this with me.

I don't mean to upset anyone with these questions and I am sorry if I

did.

God Bless!

~ Meg ~