Hello Everyone!

August 15, 2001

,

Tell your brother that caffeine is probably a personal choice, as far as I

know it has not been shown to exacerbate CMT. Anybody?

I drink 2 mugs of Irish Breakfast Tea in the morning, (about the same

caffeine content as coffee). 2 diet Pepsi's during the day, however no

caffeine after 4pm or I will not sleep well. I also drink close to a gallon

of water a day so I am sure this helps flush out the caffeine. As far as

broken bones go, well I stopped counting at 16. I have put several children

through college, (not mine, my orthopedist's).

Fingers-7-NOT CMT related

Wrist-1-NOT CMT related

Left ankle-3 times-CMT related weakness-fusion and screw insertion 11 years

ago no problems since

Right ankle-1-NOT CMT related

Nose-3 times-NOT CMT related

Collarbone-1-NOT CMT related

All of these injuries are sports related and all healed in a normal time

according to doctors. The only lasting effects are on my left ankle and foot

that are fused which causes a slight limp especially when I am tired.

regards,

BC

----- Original Message -----

From: <blbarnes83@...>

< >

Sent: Tuesday, August 14, 2001 6:00 PM

Subject: [] Hello Everyone!

> Hello Everyone!

> I am writing this to you all at the request of my brother Brad. I wish he

> were writing this himself because I truly believe you all will help him.

But,

> until he is ready all I can do is what he asks. Anyway, do any of you know

if

> you are allowed to have caffeine products? And if he would happen to break

a

> bone will there be a problem with it healing. Please e-mail me with your

> answers and thoughts so I can relay them to him. And I too am excited

about

> the dr's webb sight. What a wonderful thing to do. Thank you and

Dr.

> Paolo from me and my entire family. I sent the address to my brother I

hope

> he uses it!!

> Sincerely with hugs,

>

August 21, 2001

hi allison...welcome to the group... you will find

great support and information here...i have a 2.9

month old son with verbal apraxia...he also sees a ST

2-3x times a week although i am trying to get him

more...i know how you feel about the frustration

must feel...i worry about the same thing for

my son...the older he gets, he is starting to notice

he cannot communicate like other kids and a don't want

his self esteem to be affected...he is playful and

social and " normal " in many ways but he gets so

frustrated when he can't communicate his wants...try

http://www.promptinstitute.com it is a technique that my

developmental ped. recommended my son to receive

through ST...like your therapist, mine is also willing

to learn techniques so she can better help my son...i

am having a hard time finding a ST who knows " PROMPT "

but i'm sure with a little luck i'll find one

soon...anyway good luck....JoAnn (mom to Sky )

August 22, 2001

Dear , I have been on this site for a few months and have learned so

much from these kind and caring parents. Their willingness to help and

determination is unbelievable. I tend to do a lot of reading and only a few

post. There is so much to learn, I am still on the learning curve and

haven't gained enough knowledge to be giving advise. My heart breaks for

your son, , as it is all to familiar. My son will be three next month

and also can't produce the f sound as well as s, c and many others. One of

the first questions someone will ask him is his name, which he cannot say.

His name is Spencer and he is so full of life and excitement. Like your son,

he also does not realize his disability and will begin preschool next month.

Our family shower Spencer with unconditional love and acceptance. He is

rarely without me by his side and I wonder how he will do and how will others

respond to him when I am not there to interpret and protect him. I felt your

fear and concern for your son which prompted me to respond to you because I

have those same feelings. Even though my son was diagnosed three months ago

I still cry often and am very anxious about what the future will hold for our

precious boys.

I also would like to know any helpful information in the best way to teach

Apraxia children. Spencer does not like it when I speak differently to him

by making a letter sound repeatedly and then say the word (example lll log).

He also does not like to attempt any letter sounds for the therapist but will

try to repeat a word he feels comfortable with. Until this last Monday, he

would not try letter sounds at all. The therapist hit on one thing this past

Monday that was very effective for my son. Their play therapy had a dinosaur

theme (which he loves). She kept prompting him to make the f sound and for

the first time ever he tried when she picked up a dinosaur figure and held it

to her mouth and said let dino help you do this. He picked up another " dino "

and held it to his mouth and tried for the f sound. I was afraid to make any

sound because I didn't want to distract him and stop this fantastic moment.

Instead, I held my breath and let my tears of joy fall silently. For some

reason that technique worked for Spencer. We do not see her again until

Friday, but I very excited to get him back in to see if he will try again.

Here is another site and has lots of good information:

www.apraxia-kids.org

I will be happy to pass along any other helpful information that I find.

God Bless,

August 24, 2001

Hello ,

My Name is Lori Roth and as the Speech Pathologist for the CHERAB

Foundation as well as a specialist in Oral Motor and Verbal Apraxia I

am writing to you to see if I can help. Firstly, Give the therapist

this http://www.apraxia.cc website, and have her " join the group " .

Have her post notes to other professionals on the list. The mail is

from both parents and professionals all over the globe.

Secondly, have her check out the PROMPT Institute

<promptinstitute.com> site and inquire about training. It's pricey

but well worth the instruction. (PROMPT is a tactile cuing technique

that helps the therapist clue the child as to the where, how and how

fast the articulators need to be placed.)

Thirdly, many schools for the oral deaf. That is ORAL/AURAL schools

teach children to use their speech skills in a different way than a

typical articulation problem, focusing on oral motor movement rather

than sound production in isolation. Graham Bell

Organization has a home program for families and might be a great

resource for you...make sure you explain that your child is talking

and you need more advanced material.

Fourthly, Kaufman has designed the Kaufman Cards, a wonderful

set of cards that show how to present word approximations to a child

with verbal apraxia allowing for intelligibility first rather than

100%accuracy. I.e., wab-bit vs rabbit = still understandable but not

perfect...so who cares. This is also something you could use at home.

1st rule of thumb for VA: GET THE CHILDREN TALKING

2nd rule: Make them as understandable as possible!!

So I hope this helps.

Call if I can be of additional help. Have her therapist

call if you want.

Lori Roth, MA, CCC-SLP

<lorislp@...>

Northern NJ

973-540-8884

CHERAB Foundation

http://www.apraxia.cc

> Hello everyone! My name is and I have a 3.5 yr old son,

> who was diagnosed with oral-motor apraxia right before his

2nd

> birthday and has been in therapy every since. I only found this

> website a few weeks ago and sure wish I would have had it this

whole

> time! What a wonderful support system this is. It's hard to keep

up

> with you all sometimes but I'm going to do my best.

>

> gets ST 3x a week at the nearest elementary school and

although

> I like the therapist personally, it's clear that she has very

little

> information on how to treat apraxia. I was worrying about it and

> afraid that I was going to have to fight to send to a

different

> therapist but I had a long talk with her yesterday and she seems to

be

> very open to learning more. I don't resent having to find

information

> for her if it'll help . She worked on the " F " sound for the

> last two months of last school year and of course he still can't do

it

> because that's not the way apraxia kids learn from what I

understand.

> So if anyone knows of any other websites with information that

could

> help her, I really appreciate you posting it for me, or email me!

> We're also persuing getting him private ST through our insurance

but

> we're military and their medical stinks so I don't have high

hopes.

> I'm looking for any options I can find seeing how will start

> preschool next year and I want to get him as much help as possible

> before then. I'm so worried about him feeling different once he

> starts school. I don't think he has any idea right now that he is

> different. He gets frustrated with communication of course but I

> don't think he realizes that it's not the same for other kids. He

has

> made HUGE strides this last year but it's still so hard for us.

I'd

> say I can understand him about 70% of the time, if he's speaking in

> context to somthing we've seen or done. For others, including my

DH,

> it's more like 20%. It just breaks my heart to see him give up

when

> he's trying to tell someone something. I wonder what he has

trapped

> in his beautiful head and what kind of person this will make him

grow

> up into. Will he be introverted? Will he tend to keep this

thoughts

> and feelings to himself because that's how he started? Will he

ever

> be " normal " ? I bet some of you have worried about the same things

but

> I've never met another apraxia parent and it's great to be able to

> express these thoughts to people who will (hopefully) understand

and

> not think I'm a worry-wart or a fruitcake! :-)

>

> Well this is a very long post for my first post, or for any post

but I

> had a lot saved up! Believe me, you can expect more from me! It's

> great to meet you all, thanks for listening.

>

January 18, 2003

Welcome to the group, L! Hope you'll tell us more about yourself

soon.

[ ] Hello everyone!

> Hello everyone, I'm new here. I just thought I'd say hello.

January 18, 2003

Hi ...

Welcome to the group... here you'll find a great bunch of people!

I'm Pami - I really don't say much (lol). I'm a young (or try to be) 55 and

I live in Columbus, OH with my partner. I was diagnosed with RA back in the

summer of 1997 - when I was living in Greece (non-military). Until recently,

I was treated with methotrexate (0.7ml/weekly) and prednisone (20mg/daily) -

now, I only take the methotrexate.

I try to take each day as it comes...

Again... welcome to the group...

Pami

-- [ ] Hello everyone!

Hello everyone, I'm new here. I just thought I'd say hello.

January 18, 2003

Hi L., and welcome. This is a great group of friends, as you'll

come to find out. In addition, a and , our moderators, pass on

all the latest articles and info. on our illnesses.

We'd love to hear more about you when you feel comfortable to share.

Welcoming ((((((((((((hugs))))))))

Carol

[ ] Hello everyone!

Hello everyone, I'm new here. I just thought I'd say hello.

August 13, 2003

Nice to hear from you, in OR formerly from WA, LOL!

109 is not my idea of a birthday temperature.

I'm very sorry to hear that you haven't been feeling good. That's a long

time to have an upper respiratory infection. Sounds like Tess all over

again. I hope they're doing all of the tests and thinking that they

should be.

[ ] Hello Everyone!

> Haven't been on the groupsite to much lately, have read a few of the

> messages and Thanks for the birthday wishes, although Iam from

> Central Oregon now rather than from WA.

>

> We were in Washington State for my birthday at a place called Alta

> Lake, on Tuesday the 22nd of July it was 109 degress there. We were

> tent camping and it was still extremely warm at bedtime.

>

> I have taken 3 rounds of Humira and it was helping me the very first

> injection, the doctor said I could probably start backing off Mx in

> a couple of months. Then the first of July I got sick and have been

> sick ever since (upper respitory). I have been taken off the Humira

> and have been on two antibiotics, three different inhalers and

> prednisone taper, first a 6 day one now a month. I have a cough

> which they gave me codeine at night but it is getting old. I am

> hoping they will give me my Humira back after it is cleared up but

> don't know for sure. The prednisone is helping for now, so far

> doesn't seem to raise my blood sugar. The big thing is I am really

> tired of not feeling good. One thing I am drinking lots of water

> and I have lost a few pounds. Sure wish I could enjoy the summer

> more.

>

> I will try to catch up on how everyone is doing, I am in Sherwood at

> my daughters right now and she has DSL so it is much easier to stay

> online. Although there is still 3 little girls that want my

> attention. That is a good thing.

>

> Thanks for listening. in Central Oregon ( in WA)

March 17, 2004

--- In , " grannyfellx6 " <grannyfellx6@y...>

wrote:

I have decided I need to make some life style

> changes, it will probably be slow but I am going to make it.

> in Central Oregon

Hi ,

I highly recommend the book " 8 Weeks to Optimal Health " by

Weil. He makes health improvement changes seem very manageable and

even fun to try. That book is packed with good information. I keep

checking it out of the library but should really just buy a copy--

it's a good reference. Good luck!

Sierra

March 18, 2004

Good luck, !

Sorry about the MTX, but lung involvement is serious. It doesn't sound

like you have much choice but to discontinue it.

It's great that you don't have much damage after all of those years.

Have you seen any of the new research about cinnamon and diabetes? It

sounds like something safe to try, along with the other lifestyle

changes you are making, to bring your blood sugar levels down. Check

this out:

NewScientist.com

17:52 24 November 03

" Cinnamon spice produces healthier blood " :

http://www.newscientist.com/news/news.jsp?id=ns99994413

It would be worth running this by your doctor.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Hello Everyone!

> I have been a bit out of touch but have been busy with my family and

> running to doctors (the story of my life). I feel like they should

> have a chair in the offices with my name on it.

>

> Last September they took me off of Methotrexate because of a lung

> problem, last week I went back to the Pulmanory (sp) Specialist to do

> some tests to see if I could go back on Mxt. the test were good,

> lungs clear, look normal on the CT Scan, but he recommended I don't

> go back on Mxt. because it could happen again. Anyway that one is

> out the window with all the rest. I am still on Humira, taking the

> injections weekly with Arava. Not happy about the Arava but what can

> I say. I also take 400 mg. of Lodine XL three times a day. After

> being on prednisone since Sept., tapering from 40 mg to 1 mg my blood

> sugar is high and I am having trouble getting it under control. I am

> taking 17 pills a day plus injections once a week, I am afraid they

> will want to put me on insulin, I sure hope not.

>

> I am trying to eat right (not an easy task) and I have been doing 35

> min. of exercise (includes warm ups, stretches, weight training for

> arms, sit ups and leg exercises. I ride the bike some times in the

> afternoons for 15 min. Blood sugar has come down some but still not

> good (170-180 range). I have decided I need to make some life style

> changes, it will probably be slow but I am going to make it.

>

> I have some catching up to do so I can see how everyone is doing. I

> did read Tess' message, I hope all goes well with the surgery and you

> are in my prayers.

>

> in Central Oregon

March 22, 2004

Good news, Lissa! The best of luck to you. I hope Enbrel works for you.

I can't remember if you were on oral MTX or injectable. If you were on

oral, it may be worth trying the injectable with folic acid along with

Enbrel.

There is data to suggest that the two work better together than either

one alone.

Arthritis Research & Therapy

Volume 5; Issue 6

October 2003

" Etanercept versus etanercept plus methotrexate: a registry-based study

suggesting that the combination is clinically more efficacious " :

http://arthritis-research.com/content/5/6/R347

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Hello everyone!

> Well, the GREAT news is that my insurance has decided to cover Enbrel

> as it would any of its formularies. I am SO thrilled. THis means I

> only pay $60-80 per month instead of $400. I have been on MTX for

> about 6 months now, but just cannot handle the side- effects, so the

> Enbrel is going to be just in time!

>

> Also, for those of yopu in the San Diego area, or who travel here, I

> found the BEST shoes a couple of days ago. They are truly like

> walking on clouds. You can get them in La Jolla, at

> 1298 Prospect place #1W.

> They are not the most stylish, but not awful either. And let me tell

> you, my feet have never been so pain free for sich a long period.

> Anyway, they are called Opananken diabetic and anti-stress shoes.

> They cost $90-$175 per pair, but should last years and years and

> years.

>

> OK, I guess that's my commercial for the day!

> Take care and happiness to all!

> Lissa

January 9, 2006

In a message dated 1/9/2006 6:19:20 PM Central Standard Time,

i_am_catsy@... writes:

I will fill you in more on my life to date as i post more within the group

but i am here now to learn more about you all especially the new ones that i

haven't met. I have been started on a very low dosage of Medrol twice a day

and have been given the paperwork for Humera...

welcome back! I'm a newbie here. My name is and i'm a married, 27 year

old mom of 2 living with RA. Good luck getting the Humira. it has helped me

so much in just 3 months. Glad to meet you! hugs

January 9, 2006

Glad to have you back, Jan. I for one have missed you. I'm not glad you

have AS, but glad that you have a correct diagnosis. Now maybe you can

get the correct medication that will help your symptoms.

Sue

On Monday, January 9, 2006, at 05:46 PM, JAN TULLY wrote:

> I am back! Only with a new name.....this is CAT/Jan in AZ formerly

> of CA.

January 9, 2006

Jan, I am so happy to see you back with us although not for the reason that

brought you back. I missed your posts.

Hugs

June

----- Original Message -----

From: JAN TULLY

rafamily

I am back! Only with a new name.....this is CAT/Jan in AZ formerly of CA.

I am back for two reasons... one...missed you all! and two...i have a new

diagnosis to add to the FMS that i have had for what looks like at least 18

years (14 before a diagnosis was given).

My new diagnosis is Ankykosing Spondylitis (AS) and i am just beginning to

learn about it....so have come back to where my roots are...from when i was

looking for answers with the FMS.

My thanks go to a as she has always been there for me even tho i left

the family circle for awhile...isn't she awesome? and to my many friends within

the group that have stayed in touch...i really do appreciate you all.

I will fill you in more on my life to date as i post more within the group

but i am here now to learn more about you all especially the new ones that i

haven't met. I have been started on a very low dosage of Medrol twice a day and

have been given the paperwork for Humera...and the Rhuemy did mention the

Embrel...i did not take anything for pain for a couple of years except for

extra-strength Tylenol. Everything i had been given in the past never touched

the pain and i usually ended up with side effects and allergies.

Happy to be back with you all.

Love, HUGGS, Prayers, and positive thoughts...always.

CAT/Jan in AZ =^..^=

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

Photos

Got holiday prints? See all the ways to get quality prints in your hands ASAP.

January 9, 2006

Thank you Sue...and i am glad to be back...i have missed everyone. Have my

fingers crossed (and not just a few prayers) that this time it's gonna work.

Hopefully this will be the year for everyone.

Love, Huggs, Prayers, and positive thoughts...always

CAT/Jan =^..^=

Sue <marysue@...> wrote:

Glad to have you back, Jan. I for one have missed you. I'm not glad you

have AS, but glad that you have a correct diagnosis. Now maybe you can

get the correct medication that will help your symptoms.

Sue

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

Photos – Showcase holiday pictures in hardcover

Photo Books. You design it and we’ll bind it!

January 9, 2006

Thank you, for the greeting....after reading some of these posts on the

price of the Humera and the Embrel....not sure i will be getting them at all.

Does anyone know if the combination of Medicare and Tri-care for Life will

handle the cost somewhat...no way i could afford otherwise.

Again, thanks for the welcome.

Love, HUGGS, Prayers, and positive thoughts..always

CAT/Jan =^..^=

N2kids@... wrote:

In a message dated 1/9/2006 6:19:20 PM Central Standard Time,

i_am_catsy@... writes:

I will fill you in more on my life to date as i post more within the group

but i am here now to learn more about you all especially the new ones that i

haven't met. I have been started on a very low dosage of Medrol twice a day

and have been given the paperwork for Humera...

welcome back! I'm a newbie here. My name is and i'm a married, 27 year

old mom of 2 living with RA. Good luck getting the Humira. it has helped me

so much in just 3 months. Glad to meet you! hugs

January 9, 2006

Hi June...how are you doing? Nice to have been missed. Glad to see so many of

the old familiar faces here. As i mentioned in one of the other posts...maybe

this is the year...fingers crossed...and toes...

Love...HUGGS...Prayers..and positive thoughts.

CAT/Jan =^..^=

June Dixon <juner24@...> wrote:

Jan, I am so happy to see you back with us although not for the reason that

brought you back. I missed your posts.

Hugs

June

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

Photos – Showcase holiday pictures in hardcover

Photo Books. You design it and we’ll bind it!

January 10, 2006

Welcome back, Jan! I missed you.

Sorry about your ankylosing spondylitis diagnosis, but I hope appropriate

treatment will help you.

And, yes, a is awesome!

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Hello Everyone!

> I am back! Only with a new name.....this is CAT/Jan in AZ formerly of

> CA.

> I am back for two reasons... one...missed you all! and two...i have a

> new diagnosis to add to the FMS that i have had for what looks like at

> least 18 years (14 before a diagnosis was given).

>

> My new diagnosis is Ankykosing Spondylitis (AS) and i am just beginning

> to learn about it....so have come back to where my roots are...from when i

> was looking for answers with the FMS.

>

> My thanks go to a as she has always been there for me even tho i left

> the family circle for awhile...isn't she awesome? and to my many friends

> within the group that have stayed in touch...i really do appreciate you

> all.

>

> I will fill you in more on my life to date as i post more within the

> group but i am here now to learn more about you all especially the new

> ones that i haven't met. I have been started on a very low dosage of

> Medrol twice a day and have been given the paperwork for Humera...and the

> Rhuemy did mention the Embrel...i did not take anything for pain for a

> couple of years except for extra-strength Tylenol. Everything i had been

> given in the past never touched the pain and i usually ended up with side

> effects and allergies.

>

> Happy to be back with you all.

> Love, HUGGS, Prayers, and positive thoughts...always.

>

> CAT/Jan in AZ =^..^=

January 10, 2006

And....

I forgot to put in the other half of Team /a...you both are

awesome....!!!!!

Words are not enough to let you know that you are appreciated...both of you

for all the hard work, time, and patience you impart to this family....the one

the two of you have built for us all to share with you. I was bowled over that

the group is now over 1100 members....but not really...everyone knows a good

thing when they find it.

Love...with continued prayers and huggs for everything you do.

CAT/Jan =^..^=

<Matsumura_Clan@...> wrote:

Welcome back, Jan! I missed you.

Sorry about your ankylosing spondylitis diagnosis, but I hope appropriate

treatment will help you.

And, yes, a is awesome!

Not an MD

I'll tell you where to go!

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

Photos

Got holiday prints? See all the ways to get quality prints in your hands ASAP.

January 10, 2006

In a message dated 1/9/2006 11:36:56 PM Central Standard Time,

i_am_catsy@... writes:

Thank you, for the greeting....after reading some of these posts on

the price of the Humera and the Embrel....not sure i will be getting them at

all. Does anyone know if the combination of Medicare and Tri-care for Life

will handle the cost somewhat...no way i could afford otherwise.

Again, thanks for the welcome.

Love, HUGGS, Prayers, and positive thoughts..always

Oh you are welcome I'm not sure how Medicare and your health coverage

will cover your medicine. There are programs that may be able to help you even

if you do have some sort of coverage. Hugs let us know what the doc

prescribes. take care

January 10, 2006

Jan,

So happy that your back! I am sorry for your diagnosis of AS, hope

you can get some meds to help. Just know that your always close in

thought and prayers, Tawny

>

> I am back! Only with a new name.....this is CAT/Jan in AZ

formerly of CA.

> I am back for two reasons... one...missed you all! and two...i

have a new diagnosis to add to the FMS that i have had for what looks

like at least 18 years (14 before a diagnosis was given).

>

> My new diagnosis is Ankykosing Spondylitis (AS) and i am just

beginning to learn about it....so have come back to where my roots

are...from when i was looking for answers with the FMS.

>

> My thanks go to a as she has always been there for me even

tho i left the family circle for awhile...isn't she awesome? and to

my many friends within the group that have stayed in touch...i really

do appreciate you all.

>

> I will fill you in more on my life to date as i post more within

the group but i am here now to learn more about you all especially

the new ones that i haven't met. I have been started on a very low

dosage of Medrol twice a day and have been given the paperwork for

Humera...and the Rhuemy did mention the Embrel...i did not take

anything for pain for a couple of years except for extra-strength

Tylenol. Everything i had been given in the past never touched the

pain and i usually ended up with side effects and allergies.

>

> Happy to be back with you all.

> Love, HUGGS, Prayers, and positive thoughts...always.

>

> CAT/Jan in AZ =^..^=

>

> ---------------------------------

> Photos

> Got holiday prints? See all the ways to get quality prints in your

hands ASAP.

>

January 10, 2006

Thanks, Tawny...

That goes without saying for you and all the rest of the family for me....

Good to see you.

Love, Prayers, Hugs, and positive thoughts...always.

Jan ...=^..^=

tdianaok <tdianaok@...> wrote: