New member

[Guest guest]

Barbara,

I have met twice at crew functions....GREAT guy! You uts make a nice

couple.

Mike in Pittsburgh

At 02:55 PM 8/29/1999 EDT, you wrote:

>From: B2@...

>

>Dear Crew,

>

>I'd like to officially introduce my life partner, ston. I

sometimes

>refer to him as JJ.

>

>Since the crunch is bearing down on me (I have bilateral acoustics - one was

>removed in '96 making me deaf in my right ear and the one on the left ear is

>growing and the surgeon said " learn speech reading " in July to me) I've

asked

> to get more involved in my " neurological / surgical " life. So far, I

>felt I could handle everything on my own, with a lot of help from the crew.

>But now, since I'm confronted with some lifestyle change (speech reading

>classes - maybe sign classes for the 2 of us and more of my time being

>consumed with matters medical) I've asked to really become a partner

in

>what I have to deal with and he's ready to. So he's joining the crew and

>helping me do research on my intervention options.

>

> and I have been together for 12 years. He has 3 grown kids and 3 great

>grandkids who we actively parent and grandparent together. His leading

>medical problem is rheumatoid arthritis which means a lot of walking doesn't

>always feel so good to him. Just to round out the picture, he is an artist,

>pianist, woodworker, graphic designer, book producer (worked in publishing),

>and brochure/ invitation/ newsletter producer.

>

>Together we have hosted several crewbies when they've come to NYC. We also

>went to the Florida Aldacon, the D.C. NF Foundation meeting, and Marie's ANA

>shindig in Pittsburgh so a number of you have met him.

>

>I'm happy to have him join us.

>

>Barbara B., NYC

>

>

[Guest guest]

In a message dated 08/18/2000 7:15:04 AM Pacific Daylight Time,

whimsy2@... writes:

<< This list is particularly focused on low-carbing. >>

Uh oh, before the flames start shooting.....I think it would be better to say

this list focuses on lower carb. 225 carbs is a lot of carbs!

Welcome Roseann! Some of us have found that low carbs work best (under 50

grams a day) some have lowered their carbs (100 grams a day) and some lucky

ones have more and follow the ADA diet.

You have to eat and test and eat and test and find out what works for you.

Meniowl@...

type2,dx7/99,low-carbs & water walking

(last A1c 5.3) Normal range 4.8-6.0

[Guest guest]

Re: New Member

>Hi, Roseann, welcome to the list. Sorry you had to join us but you'll find

>lots of help and support here. There are a lot of knowledgeable and friendly

>people on this list.

>This list is particularly focused on low-carbing. Most (but not all) of the

>people here advocate low carb eating and the amount of carbs you're eating

>are much higher than most of us.

Sorry, but I must be in the wrong place, because I don't follow the Bernstein

book.

I have been following the same basic diet plan for the past 6 years with

excellent results.

It is based on the ADA Food Pyramid Exchange plan, and was developed for me by

a RD here in Houston. I respect any person for whatever diet plan (s)he may

choose, but the most important thing to me is for a person to follow *some*

plan.

I have known a number of people on the Bernstein and Atkins plans, and they

seemed to work for a while, but eventually were abandoned, and meny of the

benefits were reversed. I look upon my diet plan not as a " diet " but as my Way

of Eating that I will observe (with necessary modifications, of course) for the

rest of my life. It addresses more than considerations of diabetes, and

includes provisions for my cardiac condition as well. For example, my 1800-1900

calorie per day plan also limits sodium intake to 2 grams per day, limits fats,

and other cholesterol-related foods, and still tastes good and helps maintain

glucose and weight levels. My most recent HbA1C came in at 6.9, up somewhat from

6.4. My most recent HDL came in at a very low 29, and the LDL was only 89. I

am 6'1 " tall and weign 191 pounds. Both my weight and BFI are within normal

limits. While I am pleased with all these results, this same result can be

obtained with other diet plans, as well. It does show, however, that the ADA

Pyramid Exchange diet plan will work -- in spite of what detractors claim.

There is a very website http://www.dietitian.com/index.html, which is operated

by a Registered Dietitian, that I have found very helpful on diet matters. You

might like to give it a look.

I wish you well with whatever approach you may take to developing your Way of

Eating. Remember, you should stay with it -- no matter what -- modifying it

only when your needs or situation may dictate. BTW, I am a Type 2 injecting

insulin, and I have not needed to lose weight either before or after beginning

my current Way of Eating.

[Guest guest]

Welcome Machelle, I am sure you will love Weight Watchers as much as I do.

Its probably the easiest way to lose weight that I have ever seen, and just

think this is something we can do forever. Hope your first week goes really

well.

Shanda

>

>Reply-To: Serious-Weight-Watchers

>To: Serious-Weight-Watchers

>Subject: New Member

>Date: Wed, 09 Jan 2002 02:47:16 -0000

>

>Hi everyone!

>

>I'm not new to lists or weight loss, but I'm so excited because I

>started Weight Watchers today! I've been wanting to try it for a long

>time and my mom bought me 1 years worth! Isn't that a loving thing to

>do for your daughter? I was a bit disappointed with my weigh in tho',

>my home scales weigh me at 297 and weight watchers says 320 exactly.

>What a shocker!

>

>Looking forward to getting to know everyone!

>

>hugs

>Machelle

>

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

[Guest guest]

Happy Birthday Kim! There has been research that head and neck injuries may be a precipatating factor in developing thyroid disease.Hypothyroidism can vey much be a heredity factor, as is a lot of the autoimmune diseases such as RA, SLE,MS,hashimoto's, graves.......

Love and Hugs

Feisty

Webb Osterlohgroup co-owner http://groups.yahoo.com/group/The_Thyroid_Support_Group/ATP Board Member,Thyroid Patient Advocatehttp://feistytx.tripod.com/

Re: new member> > > > Thanks ,> >> >> > I also have Fibromyalgia and suffer from chronic pain, so I'm sure> > this contributed to my Thyroid problem.> >> > I had a Hysterectomy Two years ago and it seemed to make the Fibro ,> > Fatigue, and weight gain worse.> >> > Hopefully once the Thyroid gets under control the Fibro will follow.> >> > I look forward to getting to know you and all the other members.> >> > Thanks again,> > Kim> >> >

[Guest guest]

Blow out the birthday candles! You're just a baby. I'm already 52!

Re: new member

> >

> >

> > > Thanks ,

> > >

> > >

> > > I also have Fibromyalgia and suffer from chronic pain, so I'm sure

> > > this contributed to my Thyroid problem.

> > >

> > > I had a Hysterectomy Two years ago and it seemed to make the

> Fibro ,

> > > Fatigue, and weight gain worse.

> > >

> > > Hopefully once the Thyroid gets under control the Fibro will

> follow.

> > >

> > > I look forward to getting to know you and all the other members.

> > >

> > > Thanks again,

> > > Kim

> > >

> > >

>

>

>

>

[Guest guest]

Hi ,

Welcome to the group. This is a great group with supportive and caring

members. I hope you enjoy it here as much as I do.

Kay

[Guest guest]

YEA, Tiombe!!!!!!

It is so exciting to here that you have been working out! Keep it up!!!! As for what to eat on a tight budget, I recommend primarily buying food that is as close to its natural state as is possible. Buy the leaner cuts of meat either fresh or frozen. I have had to educate myself on how to read food labels to determine what is lower in fat content. So with chicken, I stay away from the thigh, will eat skinless legs and mainly eat the breast, which is low in fat. I also compare fresh to frozen to ensure that I get the most for my money. I prefer to buy fresh veggies, but at times the frozen veggies are cheaper and I will buy those and combine them with some type of beans or lentils. I am the only person in my family of 4 who needs to lose weight so sometimes, I make a big pot of something that is lowfat and healthy for me and other meals for my family.

At all costs, I avoid eating boxed and prepacked food. It tends to be more expensive for less food, less nutrition and more calories. I find that changing my eating involves a conscious effort to change my behavior. I love when Dr Phil says that you cannot be overweight without the lifestyle to support it. So my goal is to create a lifestyle that supports health which in turn will yield weightloss.

The other thing that I HIGHLY recommend to counter the initial negative self-talk that I had how I felt about my overweight self is affirmations. You have got to get the eye of the tiger about losing weight. I call it getting wild and crazy. Failure is not an option. I get myself psyched about losing weight to the point that when I hear my self-defeating chatter ("Look at how fat you are!" "How could you let this happen?" "I don't even want to look at myself." "None of my clothes fit." "I wish that I looked pretty.") I tell myself that I do not care what I have thought about myself in the past, the truth is that I can DO something about this and I am. I am taking steps to eat healthy and to exercise everyday. Once I am actually doing something, it helps me to decrease the emotion. ENTER AFFIRMATIONS! The first time I had to really work to lose weight, I was 20 years old and had gained my freshmen 15 lbs during my first two years of college. I did not want to get up and exercise early in the morning so everyday I would stand and look in the mirror and tell myself, "I LOVE TO EXERCISE! EXERCISE IS WONDERFUL! I LOVE TO GET UP EARLY AND EXERCISE!" In my mind, I hated to get up and exercise but I told myself this everyday several times a day and before I knew it, I REALLY did LOVE to get up and exercise. When I began to lose weight this time, I did the same thing. I created the following affirmation for myself: "I weigh 153 lbs because I exercise daily, I drink at least half my weight in ounces of water daily and I eat a healthy low-fat, balanced diet consisting of protein, veggies, fruits and whole grains." My formula now is to say my affirmation 3 times each, 3 times per day for 30 days. If I skip a day, then my 30 days starts over. I did that affirmation for 30 days (plus a few more times since I skipped a few times. smile) and now I have created a lifestyle that supports my get healthy, weightloss goals. It is still a struggle. Last week was hard for me but I refuse to give up my eye of the tiger. My thoughts are that this is my life and it is worth fighting for a healthy body.

Tiombe and anyone else who is struggling, YOU CAN DO THIS!!!!! Fight for it!

Much Tae Bo Love

Tyra

Re: new member

thank you so much for your words of encouragment. I worked out so much last week that by Friday I was sore, I am taking a breather. I know I need to change the way I eat, it seems like I do well after I go food shopping but due to my family being on such a fixed budget towards the end of the month it's like I'm eating whatever I can. I know I need to change this somehow. I can slowly feel myself blowing up and I don't want to become emotional about it. Maybe you can give me some pointers. I am so glad you emailed me. I check my email every other day. I hope to hear back from you soon, my god bless you.

Tiombe' (Just in case your trying to pronounce it, it's said like this Tee-om-bay)"

[Guest guest]

Hi Donna, my name is Kay. Before bed my husband performs chest percussion on my sides, back, and front of the chest once a day and I do it myself once during the day. Sometimes we do it three times a day if it needs more. He built a slanted frame for our bed since I also have acid reflux, and I lay on top of two folded king sized pillows on the bed, head down, of course. I take Protonix for the atypical GERD. I was prescribed Spiriva, which my UC pulmonologist says is a wonderful help, but haven't started it yet since I have good exercise tolerance and capacity. I'm not an eager drug taker, but did fill the prescription.

I'm sorry to hear you developed this so early in life. I thought I was young for it at 59! I never smoked, but worked around chlorine at a pool in my teens and my dad smoked a pipe when I was growing up. And I've been under a lot of stress in my second marriage, which precipitated these health problems. Best of luck to you. What do you do on a daily basis?

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

My name is Donna and I am glad to have found this group. I am in mymid-40's, was diagnosed with bronchiectasis about 15 years ago. I aminterested to know what daily routines others with bronchiectasisfollow for their self-care -- specific to the disease, that is! Thanks in advance for your messages.

[Guest guest]

Hello

I have recently been diagnosed with this problem and am keen for the support of a group. Can someone please confirm that this group originates in Australia. Thank you.

Can someone also assist with with some ideas on the following

My problem seems to be caused by MAC. Does someone else have this and if so, what specific problems has this caused.

I am experiencing considerable hair loss and this is causing me more distress that the bronchiectasis. Has anyone else had this problem and if so, how have they dealt with it?

Is having hot flushes and sweating a feature of this problem or is it solely menopausal.

Thanks

Beth

[Guest guest]

Hi Beth

I have had this disease since early childhood & I don't think sweating & hot flushes are a part of it unless you have a fever. Getting fevers is not uncommon as we are very prone to infections at any time.

Keep well everyone. Theresa

Subject: New memberTo: bronchiectasis Date: Thursday, August 14, 2008, 8:43 PM

Hello

I have recently been diagnosed with this problem and am keen for the support of a group. Can someone please confirm that this group originates in Australia. Thank you.

Can someone also assist with with some ideas on the following

My problem seems to be caused by MAC. Does someone else have this and if so, what specific problems has this caused.

I am experiencing considerable hair loss and this is causing me more distress that the bronchiectasis. Has anyone else had this problem and if so, how have they dealt with it?

Is having hot flushes and sweating a feature of this problem or is it solely menopausal.

Thanks

Beth

[Guest guest]

Hi Beth,

I also have had Bronchiectasis since childhood. I agree

with Theresa, the sweats and hot flashes are typically associated with low

grade fevers. I tend to get low grade fevers very frequently, and as a

result I do have the sweats, etc., I am also 44 and know the sweats could

be also associated with hormones (menopause), but I have had the accompanying

sweats with low grade fevers w/ sweats etc, for years and years so I think it

could be associated with the disease as it relates to the fevers, etc.

Janine

From:

bronchiectasis [mailto:bronchiectasis ] On

Behalf Of Thereza Greene

Sent: Friday, August 15, 2008 3:14 AM

To: bronchiectasis

Subject: Re: New member

Hi Beth

I have had this disease since

early childhood & I don't think sweating & hot flushes are a part of

it unless you have a fever. Getting fevers is not uncommon as we are

very prone to infections at any time.

Keep well everyone.

Theresa

From: Beth

Subject: New member

To: bronchiectasis

Date: Thursday, August 14, 2008, 8:43 PM

Hello

I have recently been diagnosed with this problem and am

keen for the support of a group. Can someone please confirm that this

group originates in Australia. Thank you.

Can someone also assist with with some ideas on the

following

My problem seems to be caused by MAC. Does someone

else have this and if so, what specific problems has this caused.

I am experiencing considerable hair loss and this is

causing me more distress that the bronchiectasis. Has anyone else had

this problem and if so, how have they dealt with it?

Is having hot flushes and sweating a feature of this

problem or is it solely menopausal.

Thanks

Beth

[Guest guest]

Hi Jan

Your comments on the Bronch and MAC are interesting because I have been told by my respiratory physician that the MAC caused the bronch. He describes it as a non infectious cousin of TB. I'm not on any medication for it other than one puff of Alvesco daily which is really to address the possibility that I have asthma as well (that one's not clear). I can't relate the hair loss to anything specific. I had pneumonia last year and an infection. The infection did not clear until March this year. I noticed hair thinning in January. It's still falling out and I'm terribly worried about it. I am due to see a dermatologist as well as a tricologist - I'll try anything at this point.

Would be pleased to hear of others with a similar problem and how this resolved itself.

Thanks

Beth

Re: New member

Hi Beth,

I was diagnosed with bronch in 1992. I am 58 years old and I also had (Yea! I can say had now and not have!) MAC. My last sputum culture in June came up negative so hopefully I will be off my 3 meds by the end of December of this year. MAC will cause night sweats which I did experience before going on the medication, but haven't had any for a few years now. Another symptom I had was fatigue and also had pneumonia a few times. I'm not sure about the hair loss, but I had told my pulmonary physician when I first started on the meds, that I thought they were making my hair fall out. The dermotologist could not find anything wrong. It seemed the more he increased the dosage, the more my hair fell out. I guess I won't find out if that is the cause until after the first of next year. If anyone in this group has any remedies for growing hair besides "Rogaine," let me

know.

Jan in St. Louis, Missouri

Beth <neddieboyyahoo (DOT) com> wrote:

Hello

I have recently been diagnosed with this problem and am keen for the support of a group. Can someone please confirm that this group originates in Australia. Thank you.

Can someone also assist with with some ideas on the following

My problem seems to be caused by MAC. Does someone else have this and if so, what specific problems has this caused.

I am experiencing considerable hair loss and this is causing me more distress that the bronchiectasis. Has anyone else had this problem and if so, how have they dealt with it?

Is having hot flushes and sweating a feature of this problem or is it solely menopausal.

Thanks

Beth

[Guest guest]

hair loss is prob just from stress

many people when stressed phys,or mentally lose hair

It's only a deal if it's where you want to go. Find your travel deal here.

[Guest guest]

Kat,

Not only do we get confused about the drugs for LBD, you have to deal with the

stroke.

The main message with all drugs for LBD is only start one at a time, and go " low

and go slow. " One at a time allows you to know the effects of that drug rather

than to guess which one is the problem.

Drugs are just a problem as each patient does so differently on any of them.

Some drugs are worse than others and most here would say they didn't work.

Unfortunately some are deadly and I wish MDs knew which ones those were.

Hugs,

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

New Member

Hi All,

I have kinda been observing how things work. Here is my intro:

My Mom has been seeing a Neurologist since her hemmoraghic brain stem

stroke in Feb '06. Zolpidem was given during her stay in rehab for a

week after the stroke. She was misdiagnosed with side effects from

medicines and low vision (which causes hallucinations). She is also

dealing with double vision and balance issues from the stroke. 20

months after the stroke, she had learned to walk and do the stairs

both with assistance. At 86 years young, she told her

Neurologist, " I'm an old lady now. I'm 86 you know. " Clonazepam was

considered the wonder drug that helped control her anxiety and

uncontrollable movements of her left leg allowing her to walk with

little assistance. She has had care 24/7 since her stroke and thinks

I hold her back by not allowing her to walk by herself, " And when are

you going to let these girls (caregivers) go and leave me alone? "

In 10/07 her complaint was a man singing in her head. He didn't have

a bad voice. He just sang the same songs over and over. Neurologist

started with Seroquel then switched to Zyprexa. Mom had problems

walking on these meds and was trying to perform in rehab for her

stroke in order to qualify for more rehab. I chose rehab over the

singing in the head. At this time we could explain away the

hallucinations. She had several bouts with pneumonia all cured at

home with antibiotics. Levaquin was ruled a contributor to her drug

induced hallucinations. A neuropsych eval in 2/08 showed lewy body

disorder without dementia. Neurologist put her on Namenda in 4/08.

She suggested a Geriatric Psychiatrist, who took her off Namenda and

put her on Abilify and Exelon. No mention of the Clonazepam by the

Psychiatrist. I worked to get the dosage up on the Clonazepam to

help with the tremors in her left shoulder and uncontrollable kicking

of her left leg which seemed to be getting stiffer and she complained

that her foot was stuck on the floor (both stroke or so I thought).

I then started the Abilify. I received a call at work that an

ambulance had been called by daycare because my Mother was

unresponsive. The Psychiatrist told me no way the Abilify would

affect her walking. ER said she was over medicated. Hmmmm

Stop Abilify; lower Clonazepam; call Psychiatrist. He pats me on the

back. Now he says Clonazepam is not good for someone hallucinating.

Thanks. Neurologist confirms I should follow the Psychiatrist now

that she is diagnosed. Note to self: time to accept clinical

diagnosis of LBD any more proof will come in symptoms...until death.

Today she is on her second week without Clonazepam. I always hated

that drug. It's not covered by any insurance. Look forward.

Prozac, Abilify, Exelon are the mix of the moment.

Kat

Caregiver for Jane, Mother, 86, diagnosed 3/08 LBD

[Guest guest]

Hi , I didnt have the exact issue you had, mine was mostly pain at the time

of my surgery. But I can tell you that it takes months and even up to a year for

the nerves to settle back down after surgery. So the fact that you are sensing

changes and getting more sensation would to me be an excellent sign that you

will get full function back. Just hang in there and stay positive!! 

Subject: New Member

To: tetheredspinalcord

Date: Monday, May 3, 2010, 12:47 AM

 

Hi,

My name is , I am 27 y/o male who surgery on 4/13/10 to remove a lipoma and

detether my spinal cord. I am currently doing pretty good, I have no pain (but I

didn't have pain before surgery) my biggest concern currently is that I am

unable to void on my own yet so I have to perform intermittent catherization. My

NS and Urologist believe this a transient problem due to the nerves becoming

denervated from being handled during the surgery. I think this is getting better

as in the last couple of days my bladder sensation has been improving. I am now

able to feel as my bladder starts to get full. Still don't have urge just feel a

pressure. Prior to surgery, I was diagnosed with a spastic bladder. So I went

from spastic bladder prior to surgery to complete shutdown after. This is very

frustrating for me. If any members have some insight or similar experiences I

would appreciate it. I'm trying to stay patient, be positive and give it time

like my doctors

said.

God Bless,

[Guest guest]

,

Hello. I am also a new member and my boyfriend of 6 years has been recently

diagnosed. It is such a struggle and I also feel the same sense of isolation.

One book that I am finding most useful is " Asperger Syndrome and Long-Term

Relationships " by Stanford. If you would like someone to correspond

with who is in a similar situation, please let me know.

Annette

>

>

> Hi,

>

> My name is and my husband has just been diagnosed with high

> functioning Aspergers. We have been married 3 years and together 5 and

> have a 17 month old son. I'm very excited to find this group and I'm

> hoping others will help me understand my husband better. This last few

> years have been really rough for us, had a really hard time

> holding a job. But since the diagnosis and help for our therapist he is

> doing much better. Our son was born with a heart condition that required

> surgery at 6 months old and during the whole process I didn't understand

> why he was vacant? He would say inappropriate things and caused a lot of

> drama within the family. The worst part was that he was unable to bond

> with our son, out of fear. I won't lie that I almost gave up on him, but

> I'm thankful that I didn't. For those other spouses, please tell me how

> you have delt with the lonliness that comes with this diagnosis? Thanks

> so much

>