Re: a possible can of worms?

February 23, 2006

I am not sure, but is SMA truly progressive?

Personally speaking, as a kid, pre back surgery, my abilities changed. Yet so

did my body ... it got bigger! Arm & leg length increased thus making it hard

to lift overhead or to stand. My movements still felt the same, yet I could

not move about like I did. I attribute all these decreased abilities to my

body growing too big for my MN's to master. From back surgery onward to 35/36

years .... I was level, ability and health wise.

Now, I am on a small down slope loosing some of my stamina and strength, but

doctors tell me its Old Age having to deal with SMA ... not my SMA

progressing.

Is this " progression " tagged onto the children during their natural growth

process? That it progressively beats us up as kids then walks away at an

undetermined time in our mature stage... kind of like Polio, leaving us to

live life with the damage SMA left behind?

This always makes me say " Hmmmm?? "

Angie

--

Angie

Please visit my favourite websites:

for Ford Model A enthusiast

http://www.recap.on.ca

a memorial website of my father

http://www.roybebee.ca

The Monarchs (50's & 60's band my Uncle plays in)

http://www.the-monarchs.ca

a chapter of Model A Owners of Canada Inc

http://www.trilliumchapter.ca

an electric wheelchair hockey league

http://www.cewha.ca

Butterfly Dance Fundraiser

http://www.fsma.org/canada/butterfly.shtml

February 23, 2006

I have to say I believe it is progressive, even though slow at times and

possibly in spurts. I'm 33 and I don't think I am quite at the " old age " level

and have been noticing some changes that are rather freaking me out. I am losing

a lot of strength in my left shoulder now, which scares me because this little

strength is what makes it possible for me to still do so much. I don't want to

lose my job!! Also, I am noticing my jaw is getting tired when I eat. I never

had this problem before!

I'm currently trying to get to see a neuro in hopes for some advice or maybe

some medical advancement that I didn't know about yet?!?!

Angie <angie@...> wrote:

I am not sure, but is SMA truly progressive?

Personally speaking, as a kid, pre back surgery, my abilities changed. Yet so

did my body ... it got bigger! Arm & leg length increased thus making it hard

to lift overhead or to stand. My movements still felt the same, yet I could

not move about like I did. I attribute all these decreased abilities to my

body growing too big for my MN's to master. From back surgery onward to 35/36

years .... I was level, ability and health wise.

Now, I am on a small down slope loosing some of my stamina and strength, but

doctors tell me its Old Age having to deal with SMA ... not my SMA

progressing.

Is this " progression " tagged onto the children during their natural growth

process? That it progressively beats us up as kids then walks away at an

undetermined time in our mature stage... kind of like Polio, leaving us to

live life with the damage SMA left behind?

This always makes me say " Hmmmm?? "

Angie

--

Angie

Please visit my favourite websites:

for Ford Model A enthusiast

http://www.recap.on.ca

a memorial website of my father

http://www.roybebee.ca

The Monarchs (50's & 60's band my Uncle plays in)

http://www.the-monarchs.ca

a chapter of Model A Owners of Canada Inc

http://www.trilliumchapter.ca

an electric wheelchair hockey league

http://www.cewha.ca

Butterfly Dance Fundraiser

http://www.fsma.org/canada/butterfly.shtml

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.

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February 23, 2006

I've been told - that SMA is either 1) slowly

progressive - or 2) SMA is not progressive but causes

slowly progressive loss of function. This is

essentially due to the people in the white lab coats

not knowing or being able to yet figure out exactly

how much nerve (MN) damage occurs, how it happens, and

thus at what rate do the MN's die or decline

(instanteous or over a period of time?).

People in general (SMA or not) suffer some level of

loss of MN's over time - that's why so many elderly

people employ the use of canes, walkers, etc. I know,

as a 37 year old supposed " AB " person, that there are

definitely things I am no longer able to do now that I

was at 18 (thankfully, most of these things are those

that I no longer wish to do anyway!).

Regardless if SMA is either progressive or not - most

of the " experts " will say that over time SMA does

cause some loss of functionality. My response to one

of the doctors we met with initially 2 years ago - was

- " I suppose then I hope SMA is actually progressive -

because if it is not, then how can one hope to have

therapuetic treatments? " Hopefully, with SMA - MN's -

due to insufficient flSMN protein - first become

ill/sick - and thus are able to be resucitated to

healthy levels. No " expert " I've interrogated lately

has been able to answer this question definitively.

BTW - it was 2 years ago to the day - that we received

a telephone call regarding Bryce's diagnosis with SMA

- at just about this same time as well (also happens

to be the same day as my deceased father's birthday &

the same day that I proposed to my wife). What a

frightening / chilling / terrifying moment/day/month

that was - just 2 years ago. Thank God for Bryce -

he's the one who kept us from completely

disintegrating into nothing those early days - and he

doesn't even know it!

Mitch

--- Joy <j0yeuxx@...> wrote:

> I have to say I believe it is progressive, even

> though slow at times and possibly in spurts. I'm 33

> and I don't think I am quite at the " old age " level

> and have been noticing some changes that are rather

> freaking me out. I am losing a lot of strength in my

> left shoulder now, which scares me because this

> little strength is what makes it possible for me to

> still do so much. I don't want to lose my job!!

> Also, I am noticing my jaw is getting tired when I

> eat. I never had this problem before!

> I'm currently trying to get to see a neuro in

> hopes for some advice or maybe some medical

> advancement that I didn't know about yet?!?!

>

> Angie <angie@...> wrote:

> I am not sure, but is SMA truly progressive?

> Personally speaking, as a kid, pre back surgery, my

> abilities changed. Yet so

> did my body ... it got bigger! Arm & leg length

> increased thus making it hard

> to lift overhead or to stand. My movements still

> felt the same, yet I could

> not move about like I did. I attribute all these

> decreased abilities to my

> body growing too big for my MN's to master. From

> back surgery onward to 35/36

> years .... I was level, ability and health wise.

>

> Now, I am on a small down slope loosing some of my

> stamina and strength, but

> doctors tell me its Old Age having to deal with SMA

> ... not my SMA

> progressing.

>

> Is this " progression " tagged onto the children

> during their natural growth

> process? That it progressively beats us up as kids

> then walks away at an

> undetermined time in our mature stage... kind of

> like Polio, leaving us to

> live life with the damage SMA left behind?

>

> This always makes me say " Hmmmm?? "

>

> Angie

> --

> Angie

>

> Please visit my favourite websites:

>

> for Ford Model A enthusiast

> http://www.recap.on.ca

>

> a memorial website of my father

> http://www.roybebee.ca

>

> The Monarchs (50's & 60's band my Uncle plays

> in)

> http://www.the-monarchs.ca

>

> a chapter of Model A Owners of Canada Inc

> http://www.trilliumchapter.ca

>

> an electric wheelchair hockey league

> http://www.cewha.ca

>

> Butterfly Dance Fundraiser

> http://www.fsma.org/canada/butterfly.shtml

>

> 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@...

>

February 23, 2006

I think it is progressive... I have weighed the same

thing for the last 3 years, but I notice loss of

strength in my arms and neck. Im only 23 so I dont

think it is old age! BUT I do believe that if

additional weight is added on, it too can appear to be

that you are getting worse, where as it is just the

added weight.

--- Angie <angie@...> wrote:

> I am not sure, but is SMA truly progressive?

> Personally speaking, as a kid, pre back surgery, my

> abilities changed. Yet so

> did my body ... it got bigger! Arm & leg length

> increased thus making it hard

> to lift overhead or to stand. My movements still

> felt the same, yet I could

> not move about like I did. I attribute all these

> decreased abilities to my

> body growing too big for my MN's to master. From

> back surgery onward to 35/36

> years .... I was level, ability and health wise.

>

> Now, I am on a small down slope loosing some of my

> stamina and strength, but

> doctors tell me its Old Age having to deal with SMA

> ... not my SMA

> progressing.

>

> Is this " progression " tagged onto the children

> during their natural growth

> process? That it progressively beats us up as kids

> then walks away at an

> undetermined time in our mature stage... kind of

> like Polio, leaving us to

> live life with the damage SMA left behind?

>

> This always makes me say " Hmmmm?? "

>

> Angie

> --

> Angie

>

> Please visit my favourite websites:

>

> for Ford Model A enthusiast

> http://www.recap.on.ca

>

> a memorial website of my father

> http://www.roybebee.ca

>

> The Monarchs (50's & 60's band my Uncle plays

> in)

> http://www.the-monarchs.ca

>

> a chapter of Model A Owners of Canada Inc

> http://www.trilliumchapter.ca

>

> an electric wheelchair hockey league

> http://www.cewha.ca

>

> Butterfly Dance Fundraiser

> http://www.fsma.org/canada/butterfly.shtml

>

__________________________________________________

February 23, 2006

My theory is that the motor neurons and the natural hormones released during

childhood and puberty might interact, yet the older we get, the slower those

hormones get. It's just a theory. When I was 5, i would climb all over the

bars in my playground at recess. By age 7 my arms and hands weren't strong

enough to hold onto the monkey bars. Yet in 6th grade (age 11), I had trouble

carrying home a back-pack weighing 10 pounds (I couldn't lift it onto my back or

shoulders.) and yet by ages 12, 13, 14, and 15 I was carrying back-packs

weighing 15-25 pounds. So did I get stronger? Did my body and muscles just

mature more? Did my body just adapt to the weight? I don't know, all I know is

that the decline hasn't been as steady as some doctors have told me. My

neurologist says that whatever I have... it's not syringomyelia, it's not any

form of muscular dystrophy... and that I seem to have hit a period of

stability.... where it isn't getting worse or better. Comments? Thoughts?

Angie <angie@...> wrote: I am not sure, but is SMA truly

progressive?

Personally speaking, as a kid, pre back surgery, my abilities changed. Yet so

did my body ... it got bigger! Arm & leg length increased thus making it hard

to lift overhead or to stand. My movements still felt the same, yet I could

not move about like I did. I attribute all these decreased abilities to my

body growing too big for my MN's to master. From back surgery onward to 35/36

years .... I was level, ability and health wise.

Now, I am on a small down slope loosing some of my stamina and strength, but

doctors tell me its Old Age having to deal with SMA ... not my SMA

progressing.

Is this " progression " tagged onto the children during their natural growth

process? That it progressively beats us up as kids then walks away at an

undetermined time in our mature stage... kind of like Polio, leaving us to

live life with the damage SMA left behind?

This always makes me say " Hmmmm?? "

Angie

--

Angie

Please visit my favourite websites:

for Ford Model A enthusiast

http://www.recap.on.ca

a memorial website of my father

http://www.roybebee.ca

The Monarchs (50's & 60's band my Uncle plays in)

http://www.the-monarchs.ca

a chapter of Model A Owners of Canada Inc

http://www.trilliumchapter.ca

an electric wheelchair hockey league

http://www.cewha.ca

Butterfly Dance Fundraiser

http://www.fsma.org/canada/butterfly.shtml

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@...

February 23, 2006

Both my GP and Neurologist tell me women start to " decline " mid 30's or there

abouts. In " non-SMA " women, the aging process kicks at 1% or less of the

body's MN's, but since they have the proper quota that percentage loss is

hardly missed/noticed. In a SMA woman who has WAY below MN quota that

percentage loss is WAY more noticeable..........Hmmmm.

Angie

41, type 2

On 2006.02.23 13:44, Joy wrote:

> I have to say I believe it is progressive, even though slow at times and

> possibly in spurts. I'm 33 and I don't think I am quite at the " old age "

> level and have been noticing some changes that are rather freaking me out.

> I am losing a lot of strength in my left shoulder now, which scares me

> because this little strength is what makes it possible for me to still do

> so much. I don't want to lose my job!! Also, I am noticing my jaw is

> getting tired when I eat. I never had this problem before! I'm currently

> trying to get to see a neuro in hopes for some advice or maybe some medical

> advancement that I didn't know about yet?!?!

>

> Angie <angie@...> wrote:

> I am not sure, but is SMA truly progressive?

> Personally speaking, as a kid, pre back surgery, my abilities changed. Yet

> so did my body ... it got bigger! Arm & leg length increased thus making it

> hard to lift overhead or to stand. My movements still felt the same, yet I

> could not move about like I did. I attribute all these decreased abilities

> to my body growing too big for my MN's to master. From back surgery onward

> to 35/36 years .... I was level, ability and health wise.

>

> Now, I am on a small down slope loosing some of my stamina and strength,

> but doctors tell me its Old Age having to deal with SMA ... not my SMA

> progressing.

>

> Is this " progression " tagged onto the children during their natural growth

> process? That it progressively beats us up as kids then walks away at an

> undetermined time in our mature stage... kind of like Polio, leaving us to

> live life with the damage SMA left behind?

>

> This always makes me say " Hmmmm?? "

>

> Angie

February 23, 2006

Ian neuro thinks Ian gets weaker because of growth and weight gain. Ian went

for about 3 years weighing the same but growing taller some. He lost quite a

few abilities in the his 8 years of life too. I don't truly believe the

weakness comes from growth and all only. Ian has gained 3-4 pounds in the last

2 months and has not lost any more ability. Could it be the trial he is? I

don't know it is the blind trial right now. But I have noticed with Ian that he

will stabalize at times even with growth spurts, then some time just go down

hill again. But yes I do believe it is progressive, and as Mitch said hope it

is too. IF it is not progressive then this med Ian is going to be on for sure

wouldn't do much for him would it? Over all with watching my sons progression

in the last 8 years, I do believe it is a progressive disease. Does not always

weaken just do to growth spurts. And he is still able to manage his 3-4 extra

pounds just fine. Just my opinion on the progressive vs

non progressive.

Hugs,

Missy