Introduction

[Guest guest]

Hi Randy, I'm Tom, 37 and type 3, also. Sounds like we've experienced a lot of

the same things. Welcome to the group!

-------------- Original message --------------

From: Randy Cormier <randycormier@...>

Hi my name is Randy. I am 41 and have SMA III. I am married and have two

daughters aged 13 and 10. I live in Cambridge Ontario (about an hour west of

Toronto) and work for Sun Life Financial as an Information Technology manager

with a team of business analysts reporting to me. I enjoy working with the

business area to find ways to apply technology solutions to meet their business

needs.

I was diagnosed when I was 19 but started showing symptoms around age 12/13. The

progression was fairly slow for me and I was able to live life fairly normally

for a long time. That was maybe good and bad for me, because I didn't really

deal with what it meant to have this disease. For the most part I ignored it,

made stupid/lame excuses for why I couldn't participate in the few activities

that I was unable to do. Didn't tell anyone outside my immediate family that I

had SMA.

That has changed for me though over the past few years. I use a scooter full

time now and require assitance from my wife for pretty much all daily

activities.

I have been battling depression for the last year or so which is around the time

that I pretty much lost whatever independece I had left. I am working on this,

looking for ways to try and get some independence back. I finally applied to the

wheel chair accessible public transportation in the area. I can still drive with

hand controls, but need to have someone who can take the scooter in and out of

the van. Looking for activities that I can do rather than focusing on the ones

that I can't.

Anyway, I saw a reference to this group on a forum posting on FSMA's website, so

I thought I would join and see what it was about.

Randy

[Guest guest]

For the most part I

ignored it, made stupid/lame excuses for why I couldn't participate in

the few

activities that I was unable to do. Didn't tell anyone outside my

immediate

family that I had SMA.

Boy, does that sound familar. My guess is that most type III's have a

similar story. In High School, the only thing I couldn't pull off were

hurdles in Gym class. I totally hid it from everyone until I was at

least 30. That's how I dealt with it(denial) In a way, it was my way of

beating the illness and I think I kicked it's ass. Now , at 52 there's

no more denial. I found it's best to just explain it right away.

Certainly can't hide it.

But one of the tougher things I've had to do lately was get together

with some old buddies who hadn't seen me in quite awhile. I still have

a really tough time with that. I tend to avoid those situations with

all but a few freinds.

Anyway, welcome to the group.

[Guest guest]

I also avoid people I haven't seen in awhile. I am a type III but I

think my time of onset was a lot younger.... somewhere around 18 months.

Randy - I have a similar problem with getting the wheelchair out of

the car.

>

> sounds a lot like me too when i was younger.. but i finally realized

too that its a lot easier to just be up front about it. but, yeah,

seeing people i haven't seen in a long time is still weird for me.

Robin

> Re: Introduction

>

>

> For the most part I

> ignored it, made stupid/lame excuses for why I couldn't

participate in

> the few

> activities that I was unable to do. Didn't tell anyone outside my

> immediate

> family that I had SMA.

>

> Boy, does that sound familar. My guess is that most type III's have a

> similar story. In High School, the only thing I couldn't pull off

were

> hurdles in Gym class. I totally hid it from everyone until I was at

> least 30. That's how I dealt with it(denial) In a way, it was my

way of

> beating the illness and I think I kicked it's ass. Now , at 52

there's

> no more denial. I found it's best to just explain it right away.

> Certainly can't hide it.

> But one of the tougher things I've had to do lately was get together

> with some old buddies who hadn't seen me in quite awhile. I still

have

> a really tough time with that. I tend to avoid those situations with

> all but a few freinds.

> Anyway, welcome to the group.

>

>

>

>

>

>

[Guest guest]

sounds a lot like me too when i was younger.. but i finally realized too that

its a lot easier to just be up front about it. but, yeah, seeing people i

haven't seen in a long time is still weird for me. Robin

Re: Introduction

For the most part I

ignored it, made stupid/lame excuses for why I couldn't participate in

the few

activities that I was unable to do. Didn't tell anyone outside my

immediate

family that I had SMA.

Boy, does that sound familar. My guess is that most type III's have a

similar story. In High School, the only thing I couldn't pull off were

hurdles in Gym class. I totally hid it from everyone until I was at

least 30. That's how I dealt with it(denial) In a way, it was my way of

beating the illness and I think I kicked it's ass. Now , at 52 there's

no more denial. I found it's best to just explain it right away.

Certainly can't hide it.

But one of the tougher things I've had to do lately was get together

with some old buddies who hadn't seen me in quite awhile. I still have

a really tough time with that. I tend to avoid those situations with

all but a few freinds.

Anyway, welcome to the group.

[Guest guest]

Hi:

Welcome to the group - I think the group is one you'll

find to be pretty cool - helpful, informative, and

with widely varying opinions occasionally on various

topics (which is good). Our son Bryce - age 7 - has

Type 3 and his sister is - age 5 tested positive

for the homozygous SMN1 deletion but is asymptomatic

(no symptoms). My wife and I live near

Cleveland, OH.

I'm just wondering why recent encounters with old

friends seem weird or even avoided? Do your old

friends reactions seem weird - or do you feel weird in

having to offer explainations? Is it a situation

where an old friend see you using a scooter or

wheelchair and doesn't understand why? Just trying to

understand the emotional aspect here a little better.

Bryce was diagnosed at around 3 & 1/2 and walks very

well - can negotiate stairs (and though they're a

challenge - he still will occasionally inform us that

when he's a grown up, he's " gonna have a house with

all kinds of stairs " - he wasn't really happy we moved

from 'his' 2-story house to our current accessible

1-story home 2 years ago). Though we rarely discuss

'life with SMA' per say, my wife and I do openly talk

about SMA - and Bryce understands he has SMA - which

he doesn't necessarilly assign any negative feelings

to at all (at least to me thus far). He's active,

very social, quite the ladies' man, all in all - a

pretty happy kid (and I'm immensely proud of him in

every way - errr uhhh, except when he doesn't listen

to me- )

I'm fairly certain Bryce has only thus far asked

or me about SMA -in one way or another- on 3 separate

occasions over the past two years. And each time he

has asked a pointed question - it practically destroys

me - even though he asks such a question with a smile

on his face. I'd imagine those questions may happen

more often - and I want to be able to answer his

questions as openly and honestly (and

age-appropriately) as possible.

Hopefully I can continue to gleen such knowledge from

all the adults with SMA who are part of this group.

Thanks for joining - Mitch

--- Robin <roses4u@...> wrote:

> sounds a lot like me too when i was younger.. but i

> finally realized too that its a lot easier to just

> be up front about it. but, yeah, seeing people i

> haven't seen in a long time is still weird for me.

> Robin

> Re: Introduction

>

>

> For the most part I

> ignored it, made stupid/lame excuses for why I

> couldn't participate in

> the few

> activities that I was unable to do. Didn't tell

> anyone outside my

> immediate

> family that I had SMA.

>

> Boy, does that sound familar. My guess is that

> most type III's have a

> similar story. In High School, the only thing I

> couldn't pull off were

> hurdles in Gym class. I totally hid it from

> everyone until I was at

> least 30. That's how I dealt with it(denial) In a

> way, it was my way of

> beating the illness and I think I kicked it's ass.

> Now , at 52 there's

> no more denial. I found it's best to just explain

> it right away.

> Certainly can't hide it.

> But one of the tougher things I've had to do

> lately was get together

> with some old buddies who hadn't seen me in quite

> awhile. I still have

> a really tough time with that. I tend to avoid

> those situations with

> all but a few freinds.

> Anyway, welcome to the group.

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

> I'm just wondering why recent encounters with old

> friends seem weird or even avoided? Do your old

> friends reactions seem weird - or do you feel weird in

> having to offer explainations? Is it a situation

> where an old friend see you using a scooter or

> wheelchair and doesn't understand why? Just trying to

> understand the emotional aspect here a little better.

>

Many of my friends picture me as an normal, active, outdoorsy

guy. That's how I grew up... normal almost. When I see someone I

haven't seen in a long time (10 + years) it's tough to discribe how you

feel. It's pretty typical to feel some sadness for a person in a

wheelchair. Right or wrong, it happens and we feel it.It's awkward.

As an adolesenct we try hard to fit in and not be to different and I

think a part of that never goes away.

[Guest guest]

It is a small world. I live in OH as well.

I do not like seeing old friends because I do not want to explain why

I was walking almost everywhere I wanted to go twelve years ago and

now I am not. I may have told them I have SMA but people even some

doctors have never really heard of it and do not know how I will

change. (I did not know how I would change either) Strangers, other

parents, family members will make comments all the time asking me

what is wrong with me or evaluate my walking ability for that day. It

is exhausting. I really just do not know what to say to them

anymore. With that said, I have met people who are not fazed a bit by

how I walk or whether I walk one day or use a wheelchair the next.

I cherish those friendships.

, <mongomustgolf@...> wrote:

>

> Hi:

>

> Welcome to the group - I think the group is one you'll

> find to be pretty cool - helpful, informative, and

> with widely varying opinions occasionally on various

> topics (which is good). Our son Bryce - age 7 - has

> Type 3 and his sister is - age 5 tested positive

> for the homozygous SMN1 deletion but is asymptomatic

> (no symptoms). My wife and I live near

> Cleveland, OH.

>

> I'm just wondering why recent encounters with old

> friends seem weird or even avoided? Do your old

> friends reactions seem weird - or do you feel weird in

> having to offer explainations? Is it a situation

> where an old friend see you using a scooter or

> wheelchair and doesn't understand why? Just trying to

> understand the emotional aspect here a little better.

>

> Bryce was diagnosed at around 3 & 1/2 and walks very

> well - can negotiate stairs (and though they're a

> challenge - he still will occasionally inform us that

> when he's a grown up, he's " gonna have a house with

> all kinds of stairs " - he wasn't really happy we moved

> from 'his' 2-story house to our current accessible

> 1-story home 2 years ago). Though we rarely discuss

> 'life with SMA' per say, my wife and I do openly talk

> about SMA - and Bryce understands he has SMA - which

> he doesn't necessarilly assign any negative feelings

> to at all (at least to me thus far). He's active,

> very social, quite the ladies' man, all in all - a

> pretty happy kid (and I'm immensely proud of him in

> every way - errr uhhh, except when he doesn't listen

> to me- )

>

> I'm fairly certain Bryce has only thus far asked

> or me about SMA -in one way or another- on 3 separate

> occasions over the past two years. And each time he

> has asked a pointed question - it practically destroys

> me - even though he asks such a question with a smile

> on his face. I'd imagine those questions may happen

> more often - and I want to be able to answer his

> questions as openly and honestly (and

> age-appropriately) as possible.

>

> Hopefully I can continue to gleen such knowledge from

> all the adults with SMA who are part of this group.

>

> Thanks for joining - Mitch

>

>

> --- Robin <roses4u@...> wrote:

>

> > sounds a lot like me too when i was younger.. but i

> > finally realized too that its a lot easier to just

> > be up front about it. but, yeah, seeing people i

> > haven't seen in a long time is still weird for me.

> > Robin

> > Re: Introduction

> >

> >

> > For the most part I

> > ignored it, made stupid/lame excuses for why I

> > couldn't participate in

> > the few

> > activities that I was unable to do. Didn't tell

> > anyone outside my

> > immediate

> > family that I had SMA.

> >

> > Boy, does that sound familar. My guess is that

> > most type III's have a

> > similar story. In High School, the only thing I

> > couldn't pull off were

> > hurdles in Gym class. I totally hid it from

> > everyone until I was at

> > least 30. That's how I dealt with it(denial) In a

> > way, it was my way of

> > beating the illness and I think I kicked it's ass.

> > Now , at 52 there's

> > no more denial. I found it's best to just explain

> > it right away.

> > Certainly can't hide it.

> > But one of the tougher things I've had to do

> > lately was get together

> > with some old buddies who hadn't seen me in quite

> > awhile. I still have

> > a really tough time with that. I tend to avoid

> > those situations with

> > all but a few freinds.

> > Anyway, welcome to the group.

> >

> >

> >

> >

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

I've heard the same hesitance to see old friends among some of my type

2 friends also. I've never felt the hesitation or reluctance to visit

people or family I haven't seen in years, but I do recognize when they

notice any ability I've lost. The easiest visits are the folks who are

upfront about it instead of pretending not to notice. My friend Margot

is perfect. She said, " Getting hard to feed yourself...just lt me know

if you need a hand. " It was so easy. It was on the table and we could

talk about it or not. When it's the silent treatment the burden's on

me to break the ice by saying something like, " Yeah, it's gotten

harder, but now I remember to ask the waiter to have the chef cut my

food small " or some such coping strategy. It's annoying having to put

people at ease by convincing them that I'm managing, especially when

I'm struggling with adjusting to a loss myself. But I do the emotional

housekeeping to avoid their uncomfortable pretending that nothing has

changed.

>

> Many of my friends picture me as an normal, active, outdoorsy

> guy. That's how I grew up... normal almost. When I see someone I

> haven't seen in a long time (10 + years) it's tough to discribe how

you

> feel. It's pretty typical to feel some sadness for a person in a

> wheelchair. Right or wrong, it happens and we feel it.It's awkward.

> As an adolesenct we try hard to fit in and not be to different and I

> think a part of that never goes away.

>

[Guest guest]

How weird, I'm a 3 but got in a chair between 6th and 7th grade.

Are all the 3s on here still walking?

Mark Overson <oversonlanding@...> wrote:

For the most part I

ignored it, made stupid/lame excuses for why I couldn't participate in

the few

activities that I was unable to do. Didn't tell anyone outside my

immediate

family that I had SMA.

Boy, does that sound familar. My guess is that most type III's have a

similar story. In High School, the only thing I couldn't pull off were

hurdles in Gym class. I totally hid it from everyone until I was at

least 30. That's how I dealt with it(denial) In a way, it was my way of

beating the illness and I think I kicked it's ass. Now , at 52 there's

no more denial. I found it's best to just explain it right away.

Certainly can't hide it.

But one of the tougher things I've had to do lately was get together

with some old buddies who hadn't seen me in quite awhile. I still have

a really tough time with that. I tend to avoid those situations with

all but a few freinds.

Anyway, welcome to the group.

A FEW RULES

* The list members come from many backgrounds, ages and beliefs So all

members most be tolerant and respectful to all members.

* Some adult language and topics (like sexual health, swearing..) may

occur occasionally in emails. Over use of inappropriate language will

not be allowed. If your under 16 ask your parents/gaurdian before you

join the list.

* No SPAMMING or sending numerous emails unrelated to the topics of

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[Guest guest]

For me, they don't act different. I am kind of embarrassed of how I look now,

especially when moving to reach something or adjust sitting or whatever. But

I'll get over it... I hope.

<mongomustgolf@...> wrote: I'm just wondering why recent

encounters with old

friends seem weird or even avoided? Do your old

friends reactions seem weird - or do you feel weird in

having to offer explainations? Is it a situation

where an old friend see you using a scooter or

wheelchair and doesn't understand why? Just trying to

understand the emotional aspect here a little better.

__________________________________________________

[Guest guest]

I am but just barely. When I was diagnosed at around 15 I was told I would not

be able to walk by age 30. I did pretty good until about my mid-20's, started

using a chair part time around 30 and now that I'm 37, I don't think I have much

more walking in me.

-------------- Original message --------------

From: Joy <j0yeuxx@...>

How weird, I'm a 3 but got in a chair between 6th and 7th grade.

Are all the 3s on here still walking?

Mark Overson <oversonlanding@...> wrote:

For the most part I

ignored it, made stupid/lame excuses for why I couldn't participate in

the few

activities that I was unable to do. Didn't tell anyone outside my

immediate

family that I had SMA.

Boy, does that sound familar. My guess is that most type III's have a

similar story. In High School, the only thing I couldn't pull off were

hurdles in Gym class. I totally hid it from everyone until I was at

least 30. That's how I dealt with it(denial) In a way, it was my way of

beating the illness and I think I kicked it's ass. Now , at 52 there's

no more denial. I found it's best to just explain it right away.

Certainly can't hide it.

But one of the tougher things I've had to do lately was get together

with some old buddies who hadn't seen me in quite awhile. I still have

a really tough time with that. I tend to avoid those situations with

all but a few freinds.

Anyway, welcome to the group.

A FEW RULES

* The list members come from many backgrounds, ages and beliefs So all

members most be tolerant and respectful to all members.

* Some adult language and topics (like sexual health, swearing..) may

occur occasionally in emails. Over use of inappropriate language will

not be allowed. If your under 16 ask your parents/gaurdian before you

join the list.

* No SPAMMING or sending numerous emails unrelated to the topics of

spinal muscular atrophy, health, and the daily issues of the disabled.

Post message:

Subscribe: -subscribe

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List manager: (Sexy Mature Artist) Email: Esma1999@...

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[Guest guest]

I am a type 3 at 59 years old. I only walked between age 5 to 16. Been using a

chair since then. Power chair since age 22.

Lainie

tshindle@... wrote: I am but just barely. When I was diagnosed at

around 15 I was told I would not be able to walk by age 30. I did pretty good

until about my mid-20's, started using a chair part time around 30 and now that

I'm 37, I don't think I have much more walking in me.

-------------- Original message --------------

From: Joy

How weird, I'm a 3 but got in a chair between 6th and 7th grade.

Are all the 3s on here still walking?

Mark Overson wrote:

For the most part I

ignored it, made stupid/lame excuses for why I couldn't participate in

the few

activities that I was unable to do. Didn't tell anyone outside my

immediate

family that I had SMA.

__________________________________________________

[Guest guest]

I am but it is very limited. My walking ability seems to be affected

by what I eat, my weight, how hot it is outside etc......

> For the most part I

> ignored it, made stupid/lame excuses for why I couldn't participate in

> the few

> activities that I was unable to do. Didn't tell anyone outside my

> immediate

> family that I had SMA.

>

>

>

>

> __________________________________________________

>

[Guest guest]

I am a 3. I am 52 yrs old. In a scooter since age 42- just got a power chair

this year.

Peace,

Beth

Re: Re: Introduction

How weird, I'm a 3 but got in a chair between 6th and 7th grade.

Are all the 3s on here still walking?

Mark Overson <oversonlanding@...> wrote:

For the most part I

ignored it, made stupid/lame excuses for why I couldn't participate in

the few

activities that I was unable to do. Didn't tell anyone outside my

immediate

family that I had SMA.

Boy, does that sound familar. My guess is that most type III's have a

similar story. In High School, the only thing I couldn't pull off were

hurdles in Gym class. I totally hid it from everyone until I was at

least 30. That's how I dealt with it(denial) In a way, it was my way of

beating the illness and I think I kicked it's ass. Now , at 52 there's

no more denial. I found it's best to just explain it right away.

Certainly can't hide it.

But one of the tougher things I've had to do lately was get together

with some old buddies who hadn't seen me in quite awhile. I still have

a really tough time with that. I tend to avoid those situations with

all but a few freinds.

Anyway, welcome to the group.

A FEW RULES

* The list members come from many backgrounds, ages and beliefs So all

members most be tolerant and respectful to all members.

* Some adult language and topics (like sexual health, swearing..) may

occur occasionally in emails. Over use of inappropriate language will

not be allowed. If your under 16 ask your parents/gaurdian before you

join the list.

* No SPAMMING or sending numerous emails unrelated to the topics of

spinal muscular atrophy, health, and the daily issues of the disabled.

Post message:

Subscribe: -subscribe

Unsubscribe: -unsubscribe

List manager: (Sexy Mature Artist) Email: Esma1999@...

oogroups.com

List manager: (Sexy Mature Artist) Email: Esma1999@...

[Guest guest]

Robin- Yes, your reply was very helpful! Thank you and

the others for sharing your thoughts/feelings on this!

Mitch

--- Robin <roses4u@...> wrote:

> Mitch, All through high school, I did not yet have

> any symptoms of SMA. So to see people I haven't seen

> since then, and now I use a scooter, feels strange,

> I guess for a lot of reasons. It's hard to explain,

> but it's just an awkward feeling to run into people

> who knew me when I could do anythiing I wanted.

> Physically, I was a completely different person

> then, and like some of the others have explained,

> when my symptoms first showed up ( age 19), I

> ignored them. For quite awhile. I, too , made

> excuses for things I had trouble with. Only in maybe

> the last 8 or so years(43 years old now) have I been

> more open and not so embarrassed about my SMA. I

> only got my scooter a year and a half ago and it

> took awhile for me to feel really comfortable taking

> it places. Now I take it everywhere and I love it a

> ton. I've come a long way emotionally, but it was a

> long road. I must admit, I'm much happier now,

> because not hiding it is so much easier. Anyway, I

> hope that answers your questions. Robin

>

> Re: Introduction

> >

> >

> > For the most part I

> > ignored it, made stupid/lame excuses for why I

> > couldn't participate in

> > the few

> > activities that I was unable to do. Didn't tell

> > anyone outside my

> > immediate

> > family that I had SMA.

> >

> > Boy, does that sound familar. My guess is that

> > most type III's have a

> > similar story. In High School, the only thing I

> > couldn't pull off were

> > hurdles in Gym class. I totally hid it from

> > everyone until I was at

> > least 30. That's how I dealt with it(denial) In

> a

> > way, it was my way of

> > beating the illness and I think I kicked it's

> ass.

> > Now , at 52 there's

> > no more denial. I found it's best to just

> explain

> > it right away.

> > Certainly can't hide it.

> > But one of the tougher things I've had to do

> > lately was get together

> > with some old buddies who hadn't seen me in

> quite

> > awhile. I still have

> > a really tough time with that. I tend to avoid

> > those situations with

> > all but a few freinds.

> > Anyway, welcome to the group.

> >

> >

> >

> >

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

> __________________________________________________

>

[Guest guest]

Where in OH do you live? I've lived most of my life

in NE Ohio (Cleveland/Akron area) - but went to

college near Cincinnati - and have spend countless

weekends over the years in our state's capital.

Regarding walking, riding, etc. - prior to SMA

entering my family's lives 4 years ago, I probably had

a completely different view/understanding (more like a

lack thereof) about walking versus using a wheelchair.

Being the highly enlightened individual that I now am

(hardly) - I now just view either as a means to end -

a mode of transportation. In the past I would have to

admit " fearing " what a wheelchair could me to me -

but now I am quite thankful mobility devices like

wheelchairs and scooters will someday continue to

allow my son to maintain his independence.

My son has been riding horses now at a TRC

(Therapeutic Riding Center) for 3 + years (and he's

awesome at it) - anyway, the TRC has assisted riding

programs, unassisted riding programs, and carted-horse

riding programs for kids who use wheelchairs. At one

of the year-end award ceremonies, Bryce (age 7) - saw

a little boy similar in age to him in a wheelchair

(the boy has CP - a very bright and happy kid from

what I could tell) - and Bryce asked him why he uses a

wheelchair - to which he responded - " it's just how I

get around " - which was good with Bryce's - and the

two went on to talk about their horses, trophies, etc.

While " most " people won't ever " get it " - more and

more hopefully will. My son " got it " at age 5. I

didn't " get it " till I was 35.

Mitch

> Re: Introduction

> > >

> > >

> > > For the most part I

> > > ignored it, made stupid/lame excuses for why I

> > > couldn't participate in

> > > the few

> > > activities that I was unable to do. Didn't

> tell

> > > anyone outside my

> > > immediate

> > > family that I had SMA.

> > >

> > > Boy, does that sound familar. My guess is that

> > > most type III's have a

> > > similar story. In High School, the only thing

> I

> > > couldn't pull off were

> > > hurdles in Gym class. I totally hid it from

> > > everyone until I was at

> > > least 30. That's how I dealt with it(denial)

> In a

> > > way, it was my way of

> > > beating the illness and I think I kicked it's

> ass.

> > > Now , at 52 there's

> > > no more denial. I found it's best to just

> explain

> > > it right away.

> > > Certainly can't hide it.

> > > But one of the tougher things I've had to do

> > > lately was get together

> > > with some old buddies who hadn't seen me in

> quite

> > > awhile. I still have

> > > a really tough time with that. I tend to avoid

> > > those situations with

> > > all but a few freinds.

> > > Anyway, welcome to the group.

> > >

> > >

> > >

> > >

> > >

> > > [Non-text portions of this message have been

> > > removed]

> > >

> > >

> >

> >

> >

> __________________________________________________

> >

[Guest guest]

Mitch, All through high school, I did not yet have any symptoms of SMA. So to

see people I haven't seen since then, and now I use a scooter, feels strange, I

guess for a lot of reasons. It's hard to explain, but it's just an awkward

feeling to run into people who knew me when I could do anythiing I wanted.

Physically, I was a completely different person then, and like some of the

others have explained, when my symptoms first showed up ( age 19), I ignored

them. For quite awhile. I, too , made excuses for things I had trouble with.

Only in maybe the last 8 or so years(43 years old now) have I been more open and

not so embarrassed about my SMA. I only got my scooter a year and a half ago and

it took awhile for me to feel really comfortable taking it places. Now I take it

everywhere and I love it a ton. I've come a long way emotionally, but it was a

long road. I must admit, I'm much happier now, because not hiding it is so much

easier. Anyway, I hope that answers your questions. Robin

Re: Introduction

>

>

> For the most part I

> ignored it, made stupid/lame excuses for why I

> couldn't participate in

> the few

> activities that I was unable to do. Didn't tell

> anyone outside my

> immediate

> family that I had SMA.

>

> Boy, does that sound familar. My guess is that

> most type III's have a

> similar story. In High School, the only thing I

> couldn't pull off were

> hurdles in Gym class. I totally hid it from

> everyone until I was at

> least 30. That's how I dealt with it(denial) In a

> way, it was my way of

> beating the illness and I think I kicked it's ass.

> Now , at 52 there's

> no more denial. I found it's best to just explain

> it right away.

> Certainly can't hide it.

> But one of the tougher things I've had to do

> lately was get together

> with some old buddies who hadn't seen me in quite

> awhile. I still have

> a really tough time with that. I tend to avoid

> those situations with

> all but a few freinds.

> Anyway, welcome to the group.

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Mark, well said!! Robin

Re: Introduction

> I'm just wondering why recent encounters with old

> friends seem weird or even avoided? Do your old

> friends reactions seem weird - or do you feel weird in

> having to offer explainations? Is it a situation

> where an old friend see you using a scooter or

> wheelchair and doesn't understand why? Just trying to

> understand the emotional aspect here a little better.

>

Many of my friends picture me as an normal, active, outdoorsy

guy. That's how I grew up... normal almost. When I see someone I

haven't seen in a long time (10 + years) it's tough to discribe how you

feel. It's pretty typical to feel some sadness for a person in a

wheelchair. Right or wrong, it happens and we feel it.It's awkward.

As an adolesenct we try hard to fit in and not be to different and I

think a part of that never goes away.

[Guest guest]

wow, also very well said!! you guys feel a lot of what I do. Robin

Re: Introduction

> >

> >

> > For the most part I

> > ignored it, made stupid/lame excuses for why I

> > couldn't participate in

> > the few

> > activities that I was unable to do. Didn't tell

> > anyone outside my

> > immediate

> > family that I had SMA.

> >

> > Boy, does that sound familar. My guess is that

> > most type III's have a

> > similar story. In High School, the only thing I

> > couldn't pull off were

> > hurdles in Gym class. I totally hid it from

> > everyone until I was at

> > least 30. That's how I dealt with it(denial) In a

> > way, it was my way of

> > beating the illness and I think I kicked it's ass.

> > Now , at 52 there's

> > no more denial. I found it's best to just explain

> > it right away.

> > Certainly can't hide it.

> > But one of the tougher things I've had to do

> > lately was get together

> > with some old buddies who hadn't seen me in quite

> > awhile. I still have

> > a really tough time with that. I tend to avoid

> > those situations with

> > all but a few freinds.

> > Anyway, welcome to the group.

> >

> >

> >

> >

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

> For the most part I

> ignored it, made stupid/lame excuses for why I couldn't participate

in

> the few

> activities that I was unable to do. Didn't tell anyone outside my

> immediate

> family that I had SMA.

>

>

>

> Boy, does that sound familar. My guess is that most type III's have

a

> similar story. In High School, the only thing I couldn't pull off

were

> hurdles in Gym class. I totally hid it from everyone until I was at

> least 30. That's how I dealt with it(denial) In a way, it was my

way of

> beating the illness and I think I kicked it's ass. Now , at 52

there's

> no more denial. I found it's best to just explain it right away.

> Certainly can't hide it.

> But one of the tougher things I've had to do lately was get

together

> with some old buddies who hadn't seen me in quite awhile. I still

have

> a really tough time with that. I tend to avoid those situations

with

> all but a few freinds.

> Anyway, welcome to the group.

>

>

>

>

> A FEW RULES

>

> * The list members come from many backgrounds, ages and beliefs So

all

> members most be tolerant and respectful to all members.

>

> * Some adult language and topics (like sexual health, swearing..)

may

> occur occasionally in emails. Over use of inappropriate language

will

> not be allowed. If your under 16 ask your parents/gaurdian before

you

> join the list.

>

> * No SPAMMING or sending numerous emails unrelated to the topics of

> spinal muscular atrophy, health, and the daily issues of the

disabled.

>

> Post message:

> Subscribe: -subscribe

> Unsubscribe: -unsubscribe

>

> List manager: (Sexy Mature Artist) Email: Esma1999@...

>

>

>

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> oogroups.com

>

> List manager: (Sexy Mature Artist) Email: Esma1999@...

>

>

>

>

>

>

[Guest guest]

> > >

> > > > sounds a lot like me too when i was younger..

> > but i

> > > > finally realized too that its a lot easier to

> > just

> > > > be up front about it. but, yeah, seeing people

> > i

> > > > haven't seen in a long time is still weird for

> > me.

> > > > Robin

> > > > Re: Introduction

> > > >

> > > >

> > > > For the most part I

> > > > ignored it, made stupid/lame excuses for why I

> > > > couldn't participate in

> > > > the few

> > > > activities that I was unable to do. Didn't

> > tell

> > > > anyone outside my

> > > > immediate

> > > > family that I had SMA.

> > > >

> > > > Boy, does that sound familar. My guess is that

> > > > most type III's have a

> > > > similar story. In High School, the only thing

> > I

> > > > couldn't pull off were

> > > > hurdles in Gym class. I totally hid it from

> > > > everyone until I was at

> > > > least 30. That's how I dealt with it(denial)

> > In a

> > > > way, it was my way of

> > > > beating the illness and I think I kicked it's

> > ass.

> > > > Now , at 52 there's

> > > > no more denial. I found it's best to just

> > explain

> > > > it right away.

> > > > Certainly can't hide it.

> > > > But one of the tougher things I've had to do

> > > > lately was get together

> > > > with some old buddies who hadn't seen me in

> > quite

> > > > awhile. I still have

> > > > a really tough time with that. I tend to avoid

> > > > those situations with

> > > > all but a few freinds.

> > > > Anyway, welcome to the group.

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > [Non-text portions of this message have been

> > > > removed]

> > > >

> > > >

> > >

> > >

> > >

> > __________________________________________________

> > >

[Guest guest]

I have type 3 and haven't walked since I was about 13. I am now 37.

I used a chair for a year or so before I got my power chair. So, I

have used a power chair since age 15. I think the age they walk till

may just vary for type 3's.

> For the most part I

> ignored it, made stupid/lame excuses for why I couldn't participate in

> the few

> activities that I was unable to do. Didn't tell anyone outside my

> immediate

> family that I had SMA.

>

>

>

> Boy, does that sound familar. My guess is that most type III's have a

> similar story. In High School, the only thing I couldn't pull off were

> hurdles in Gym class. I totally hid it from everyone until I was at

> least 30. That's how I dealt with it(denial) In a way, it was my way of

> beating the illness and I think I kicked it's ass. Now , at 52 there's

> no more denial. I found it's best to just explain it right away.

> Certainly can't hide it.

> But one of the tougher things I've had to do lately was get together

> with some old buddies who hadn't seen me in quite awhile. I still have

> a really tough time with that. I tend to avoid those situations with

> all but a few freinds.

> Anyway, welcome to the group.

>

>

>

>

> A FEW RULES

>

> * The list members come from many backgrounds, ages and beliefs So all

> members most be tolerant and respectful to all members.

>

> * Some adult language and topics (like sexual health, swearing..) may

> occur occasionally in emails. Over use of inappropriate language will

> not be allowed. If your under 16 ask your parents/gaurdian before you

> join the list.

>

> * No SPAMMING or sending numerous emails unrelated to the topics of

> spinal muscular atrophy, health, and the daily issues of the disabled.

>

> Post message:

> Subscribe: -subscribe

> Unsubscribe: -unsubscribe

>

> List manager: (Sexy Mature Artist) Email: Esma1999@...

>

>

>

>

> oogroups.com

>

> List manager: (Sexy Mature Artist) Email: Esma1999@...

>

>

>

>

>

>

[Guest guest]

--- ida_iwanier <ida_iwanier@...> wrote:

> Hi,

>

> I'm new to the group. I am a novice. I have not

> tried yet to make

> perfumes, but have always been interested. I saw

> this group and

> thought this would be a great place to learn.

>

> Ida

*********************************************

Hi Ida

Welcome to the group and thanks for introducing

yourself! This definitely is a great place to learn

and the archives (i.e. messages on the home page that

you can search) are chock full o' valuable

information. I also suggest that you get Mandy Aftel's

book, Sense and Sensibilities, as a place to get some

basic info to get you started. She will teach you how

to make solid perfumes that you will really enjoy.

Once you have mastered solid perfumes you can advance

to alcohol-based perfumes that are more complex and a

little less forgiving. At that point you will want to

get one of her other books, Essence and Alchemy, which

gets into more technical details.

Happy blending!

Patty, NP Moderator

________________________________________________________________________________\

____

Don't let your dream ride pass you by. Make it a reality with Autos.

http://autos./index.html

[Guest guest]

edited to correct topposting:

> Hi Ida

> Once you have mastered solid perfumes you can advance

> to alcohol-based perfumes that are more complex and a

> little less forgiving. At that point you will want to

> get one of her other books, Essence and Alchemy, which

> gets into more technical details.

>

> Happy blending!

>

> Patty, NP Moderator

Thanks, Patty. That is great to have a place to start. I was trying to

locate a little booklet that Caswell-Massey offered in the 1970s

(dates me, doesn't it?), " Caswell-Massey's Book of Perfumes and

Fragrances " , but it is out of print, and I haven't found it for sale

anywhere. More that likely the book you are recommending " Sense and

Sensibilities " is a better source anyway. Tnanks so much for welcoming

me into the group. I can tell from the posts I've read already that I

will learn a lot from this group.

Ida

[Guest guest]

Wow. I never thought I would meet such a community. I am a type 3, age 48. I

was diagnosed at 15 months. As a child I walked on my tiptoes, and I could

never really run, walk for long distances or climb things. I'm still walking

but the last year has been really tough. and if I look back, there has been

quite a decline in the last 3 (when my hamsrings went). I started using a

scooter in university, so I could get from building to building. Then I didn't

use one again until I was 38...and this time it was so I could get from building

to building at work. There are days when I am so thankful for my

scooter...because in many ways it gives me even more freedom.

I also use a small, folding manual wheelchair when I travel, and it has meant

that I can go anywhere! Of course, it helps that I have a strong (physically

and emotionally), supportive husband.

I still drive....absolutely adore it! I am quite short, and drive a VW Jetta,

which has relatively high seats. I can pull myself out of the car by hanging on

the door frame, and I do a bizarre one-legged kick-back to get myself into the

car (maybe I will post a picture later!). I pretty much live in wide-legged

trousers now, because I can pull my left leg into the car by grabbing the pant

leg. Isn't it amazing how we find ways to adapt? And don't you find that your

definition of what's normal changes all the time?

I had a bad fall in a shower two years ago. Broke my shoulder. Having the arm

immobilized for 8 weeks really affected me. Had another bad fall this year

(tripped by one of my two lovely cats!), but this time only a sprained ankle.

I'm finding that falls really affect my confidence in staying upright, and this

seems to make me more afraid to walk...so it becomes a vicious circle. I've

also had a condition, apparently unrelated, over the last 15 years...called

Benign Positional Vertigo. I used to get periods of dizzy spells that would

last for up to two weeks. Now, it's more like a sensation that I am going to

tip over at any moment. Does anyone else have dizziness or wooziness?

Anyway, I've decided to go for broke and try and do everything I can to be as

strong as possible. Have been chatting with a terrific SMA researcher based in

my home town, and he says that exercise is really, really important. Recent

studies done on SMA2 mice have shown fantastic results by having them do weight

bearing exercise (increased life expectancy and great increases in strength).

When I turned 40, I started working out with a personal trainer (who had spina

bifida and specialized in adapted fitness), and the results were great. More

stamina, stronger muscles in arms and legs, and I felt great.....but I only kept

it up for about 5 years...then my job got really intense, and I found excuses,

and gradually let things slide.

Well, I'm starting up again...more gradually this time. First is to get my

confidence back, and start walking more. Then it will be more intense exercise.

Sorry for the length of this post, but I'm really happy to have found this

group. I hope we can learn from each other.

yazmine

________________________________

From: [mailto: ] On Behalf

Of Mark Overson

Sent: October 18, 2007 11:58 AM

Subject: Re: Introduction

> For the most part I

> ignored it, made stupid/lame excuses for why I couldn't participate

in

> the few

> activities that I was unable to do. Didn't tell anyone outside my

> immediate

> family that I had SMA.

>

>

>

> Boy, does that sound familar. My guess is that most type III's have

a

> similar story. In High School, the only thing I couldn't pull off

were

> hurdles in Gym class. I totally hid it from everyone until I was at

> least 30. That's how I dealt with it(denial) In a way, it was my

way of

> beating the illness and I think I kicked it's ass. Now , at 52

there's

> no more denial. I found it's best to just explain it right away.

> Certainly can't hide it.

> But one of the tougher things I've had to do lately was get

together

> with some old buddies who hadn't seen me in quite awhile. I still

have

> a really tough time with that. I tend to avoid those situations

with

> all but a few freinds.

> Anyway, welcome to the group.

>

>

>

>

> A FEW RULES

>

> * The list members come from many backgrounds, ages and beliefs So

all

> members most be tolerant and respectful to all members.

>

> * Some adult language and topics (like sexual health, swearing..)

may

> occur occasionally in emails. Over use of inappropriate language

will

> not be allowed. If your under 16 ask your parents/gaurdian before

you

> join the list.

>

> * No SPAMMING or sending numerous emails unrelated to the topics of

> spinal muscular atrophy, health, and the daily issues of the

disabled.

>

> Post message: <mailto:%40>

> Subscribe: -subscribe

<mailto:-subscribe%40>

> Unsubscribe: -unsubscribe

<mailto:-unsubscribe%40>

>

> List manager: (Sexy Mature Artist) Email: Esma1999@...

>

>

>

>

> oogroups.com

>

> List manager: (Sexy Mature Artist) Email: Esma1999@...

>

>

>

>

>

>