Introduction

October 18, 2007

Yes, I get dizzy too. It started maybe twelve years ago. Just every

once in awhile. I remember it lasting a couple of weeks or sometimes

days. Now, I experience dizziness sometimes with a headache and

sometimes without.

> > 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

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> >

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> >

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

> >

October 18, 2007

Hi and welcometo thr group.

My name is Terry, I am 34 Type III and I still walk good but can see

a major strength difference from just a few years ago. I was dx at

age 30. I first showed a sign at age 8. I am also a Father of 4 and a

single parent.

The depression when you give something up is hard. Even though you

know you have a disease it's kinda a it's not going to happen to me.

I hate giving things up. I took my 8 year old hunting by our house

the other day and 100 yards into a thick grass field i was worn out.

I fell hard and just didn't have what I needed to walk through it.

I was in a car wreck 13 years ago and broke my back in 2 places, my

right femur, torn me knee up and it can't be fixed and internal

stuff. That has made things worse for sure. I have a lot of back pain

but manage it with meds. I have broken my feet 4 times in the last 3

years and toes, well I lost count.

Now the part about hiding it or hiding it from old friends. I feel

badly that you feel that way. I told everyone at my High school

reunion. I got so many " you did everything everyone else did " and so

on. It is why I walk with a limp, am weak and I NEVER hide it.

Normally I don't have a need to tell anyone and have never been

asked. I have gone on many dates lately and don't say anything unless

I think it's someone I will see again. I can also tell you not 1

Woman has had a problem with it.

It's great to have you here, best of luck to you.

October 19, 2007

We're in Amelia, Ohio which is on the east side of Cincinnati.

Milinovich, SMA Type I

Wife to , Mommy to - 6 Months Old!

http://www.myspace.com/kindrana

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]

> > >

> >

> ____________ _________ _________ _________ _________ __

> >

October 19, 2007

Clermont County? or still in Hamilton?

I went to Miami University in Oxford, OH in the late

80's/early 90's.

Nothing like the Queen City!

Mitch

--- Milinovich <dvlwksp@...> wrote:

> We're in Amelia, Ohio which is on the east side of

> Cincinnati.

>

> Milinovich, SMA Type I

> Wife to , Mommy to - 6 Months Old!

> http://www.myspace.com/kindrana

>

> Re: Introduction

> > > >

> > > > For the most part I

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

> > > > couldn't participate in

> > > > the few

>

=== message truncated ===

__________________________________________________

October 27, 2007

On 27/10/2007, Vance Book <vancebook@...> wrote:

> Hello, all. I want to introduce myself; my name is Vance and I'm

> a big fragrance and olfaction fan. I'm not currently connected to the

> fragragrance/beauty industry, but this group seems very interesting

> and I think I could learn a lot here and hope to have something to

> contribute, too. I love using the directory at Basenotes.net, find

> PerfumeCritic.com fascinating and can't live without checking on news

> and reviews at NowSmellThis, PerfumeSmellin'Things and Perfume Posse.

<Snip>

Hi Vance, and all our new members

Welcome to the group.

Vance, you'll find lots in the archives to interest and occupy you

(and keep you away from commercial perfumes) for quite a while ;-)

/

Only problem will be that you might end up in getting lots more

deliveries if NP hooks you in! Once you read about all those wonderful

aromatics and how to blend them yourself the deliveries will increase

- still you can formulate a perfume for your wife to make up for them!

Enjoy..

LLx

October 30, 2007

Vance Book wrote:

> Hello, all. I want to introduce myself; my name is Vance and I'm

> a big fragrance and olfaction fan. I'm not currently connected to the

> fragragrance/beauty industry, but this group seems very interesting

> and I think I could learn a lot here and hope to have something to

> contribute, too. I love using the directory at Basenotes.net, find

> PerfumeCritic.com fascinating and can't live without checking on news

> and reviews at NowSmellThis, PerfumeSmellin'Things and Perfume Posse.

>

Hi Vance

I'm the list mom Anya, coming up for air, and a little break as I get

ready to launch a new perfume this week. Welcome to the group, and it

seems we read a lot of the same blogs and visit the same forums. A few

months ago, Grant of Basenotes contacted me about writing a regular

column on natural perfumery, and it will debut soon, so keep an eye out

for that. In the meantime, you'll get your naturals addiction (I hope

you have one) fulfilled here.

> My tastes frankly run along the nicer side of mass-market which

> is to say I depend heavily on department store releases. Heavy sigh.

> If I was single with no dependents, I would probably gravitate more

> toward niche perfumery, but if I have packages showing up often (I

> live in a remote part of Arizona) then I'm seen as selfish by my wife

> and step-kids, so I usually find myself shopping at Dillard's or a

> local fragrance store called Perfume Gallery, unless I can convince

> them that the scent I ordered was a real bargain...which they usually

> are, like my Silver Mountain Water, Comme des Garcons 2 and Opium for

> men gift set, all of which I got for a song on eBay.

>

I recommend you take advantage of sampling perfumes via the internet. So

many sites, such a little cost, you can sample and still save your

wallet! Hopefully, you'll get inspriration and insight and find your

" niche amongst the niches " :-)

> Anyway, I'm glad to be here and can't wait to start reading the

> other member's posts.

>

> Vance

We have a great archive, so enjoy yourself. Many start a Word document

to c/p stuff of interest.

--

Sincerely, Anya

Anya's Garden of Natural Perfume http://AnyasGarden.com - rare and exotic

aromatics and artisan perfumes,

perfumery classes and consultation

Natural Perfumers Guild http://NaturalPerfumersGuild.com

October 31, 2007

Welcome!

Milinovich, SMA Type I

Wife to , Mommy to - 7 Months Old!

http://www.myspace.com/kindrana

Introduction

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

November 28, 2007

Caine wrote:

> Hi, I just joined this perfumery group. I've briefly browsed the site and it's

extremely informative and I'm going to ask for a book or two from the posted

bibliography for my christmas present this year. I'm an architect but I have

just discovered cold process soap making; I plan on making other body care

formulations and someday when i can afford it I'll attempt to create scents from

precious natural ingredients. I've named my hobby Smells and Bells Organics and

i am inspired by the sensual rituals of world religions.

> I have a question....

> I'm making several bath and body oils and I'd like to contain them in glass

bottles with glass stoppers. Have any of you tried fixing glass stoppers to

bottles with wax string? I'd rather not seal it with wax as it's too difficult

and messy to open up again, but i was hoping that wax string would work and also

be easy to remove...

Hi :

Thanks for introducing yourself, it always is nice to meet and greet a new face

(and nose!)

I had training in architecture, too, but went on to get my masters in landscape

architecture. I so love the design process, and I find a lot of analogies and

procedural methodoligies apply here in perfumery.

First, about the glass bottles -- for use in the bath. Most body care lines shy

away from glass because of the breakage problem in tiled bathrooms. Just a

caveat. If you're determined to go ahead with them, sorry I don't know how to

use the wax string. I've never seen that come up here before. Coincidentially, I

was searching - googling - last week for the French method of tying glass

stoppered bottle necks, but couldn't find anything. I do remember a site from

years ago that had step-by-step illustrations for that. It's probably very

similar to what you want to accomplish. The perfume method also includes a tiny

bit of animal skin, paper thin, in the process. If anyone can help either

or myself with this quest, please chime in. I have a custom perfume

client who is providing the bottles for her fragrance, and I would like to

finish them in that manner, but have already told her I may not be able to.

Sincerely, Anya

Anya's Garden of Natural Perfume http://AnyasGarden.com - rare and exotic

aromatics and artisan perfumes,

perfumery classes and consultation

Natural Perfumers Guild http://NaturalPerfumersGuild.com

November 28, 2007