Fatigue

[Guest guest]

Hi Barb,

 

I too listened to Lenka's podcast. She's so articulate, it was wonderful

hearing the stories.  In addition to fatigue, Lenka also talked about the

backlash of activity that follows in the days after doing too much.  Two

different issues, both of which I also experience.  I would add lack of

stamina to the list as well.  In my experience, I've become aware of these

three issues at different times in my life.

 

Stamina - inability to keep up with what others are able to do - has been a

problem my entire life.

 

Backlash - body pain &  fatigue (like the flu) for 2-3 days or more following

doing too much - is something I've faced my entire adult life.

 

However, fatigue wasn't something I became acutely aware of until I reached my

40's. At the time, my daily activities were becoming more and more difficult to

accomplish.  I didn't identify it as fatigue until one day when I woke

up, after a full night's sleep, and as I walked away from the bed I felt

the waves of fatigue moving up and down my core and then extending out through

my limbs.

 

Since then, fatigue has become a daily part of my life.  Some days I feel the

fatigue more than others, but it's always there.  Sleep doesn't alleviate it. 

Too much time in bed actually makes it worse, because, in my opinion, the

problem originates with muscle weakness.  I can push myself despite the

fatigue, but when I do I'm guaranteed a few backlash days.  It's a constant

challenge trying to figure out the right balance, especially because it feels

like a moving target.

 

The feeling of fatigue I experience is total body and runs through me in waves

that give me an overwhelming feeling that I need to stop moving.  The best

way I can illustrate it is to relate it to the feeling I used to get years ago,

when I was stronger and able to work out with a personal trainer.  After

working out a particular muscle group, just finishing that final repetition, a

rush of fatigue would flow through the limb as I relaxed the muscle.  It was a

good feeling, knowing I'd worked out the muscle well and it would recover

shortly and be stronger.  The difference now is that the fatigue is total

body, it doesn't follow some activity, I don't get stronger with rest, and it

never completely goes away.  It's my new reality.

 

In the spirit of this week's 'all that's positive' theme, I would add:

 

Not everyone with CMT will experience this level of fatigue.  My own family

members who are a generation older than me don't experience this.

 

If you do begin to experience this problem, It's still possible to live a happy

and satisfying life despite it by adjusting to the new reality with a positive

attitude, staying focused on the things you can still do rather than the things

you can't and making full use of assistive aids. Fear of the unknown and

dwelling on the negative is frequently worse than reality.

 

From: Barb Bartz <bartz.barb@...>

Subject: Fatigue

Date: Thursday, September 23, 2010, 11:48 AM

 

I have been listening to the interviews on Lenka's blog where she

interviews 3 people with CMT. Quite a bit was shared about fatigue.

So I am wondering what causes the fatigue. Is it just a general

tiredness such as is experienced by people with fibromyalgia or

similar illnesses. Or is it tied to the fact that so much energy is

used up in using arm and leg muscles that aren't as efficient due to

the nerve damage which then affects the muscles. I have absolutely

no fatigue- but at this point I also have no problems with walking or

using my hands (its mostly sensory at this point). So I'm wondering

if all people with CMT experience extreme fatigue (like was talked

about in the interviews), and if so, at what point it occurs in the

progression of the disease.

Blessings,

Barb

[Guest guest]

I have not listened to Lenka's blog as yet. How do I find that? I

am, however, experiencing a lot of fatigue. I work in a high school

with special needs students as an assistant and I am on my feet all

day. When my day is done, I am overcome with fatigue. One day, I

said to a teacher, I'm too tired to go home right now, I need to sit

a little just to go my car. Most days, I can get to my car, but when

I get home, I need to rest before even thinking of doing anything,

else. I am 63 and won't be able to retire until age 66. I have good

health insurance and both my husband and I need it. My fatigue has

increased over what I felt last year, and I was worn out at the end

of the day, then, as well. I've decided I need to do whatever it

takes to keep working, so my housework is taking a hit. That

provides more stress because I feel like I can't keep up and I can't

afford a cleaning lady. On a positive note, I like the students I

work with and I feel I am a positive influence in their lives, They

are seniors and will be graduating and then I will get a new

assignment next year. So, there is a possibility my position next

year won't be quite as taxing as my schedule this year. Any thoughts

or help is appreciated.

Bonnie

[Guest guest]

Hi everyone- sorry not to chime in earlier, of course I got knock-down sick this

week- bronchitis and sinus infection, ouch!

My experience with CMT and fatigue was that I didn't notice it until I had a

crash in my early thirties with worsening symtoms. All through college and my

twenties I kept up with demanding schedules. At one time I was commuting an

hour each way to teach five days a week with first and second graders in LA, and

going to night school and Saturday classes. Of course, I could watch a lot of

movies in the evening back then, but today I couldn't repeat that schedule.

I always needed lots of sleep and my parent say I was the best baby because I

loved napping so much .

My 2 year old found me, I'll try to post more soon. My main message is that it

wasn't an issue for me until serious weakness set in, it feels like I push so

hard to get through the day, my system just can't keep up. Some days I wake more

tired than when I went to sleep the night before. Of course, I also have

little ones who keep the day very entertaining (no downtime for mama) so that

contributes, too

[Guest guest]

Thanks Gretchen, BB, and for your comments regarding my

question on fatigue. I can see that it affects people differently

and can even come and go throughout the course of one's life. BB,

you asked about my age so thought I would give a bit of a background.

I am 52 years old and was diagnosed with CMT 2 weeks ago due to

numbness and tingling in my hands and feet. I had a pretty normal

childhood, although I was definitely the slowest runner in my class

and really didn't like physical activity. At age 22 I was diagnosed

with a mild case of scoliosis, which I have never pursued since then

but I don't think it has gotten any worse. I have played tennis

since I was about 10 years old up until this day. In my 20's I got

hooked on aerobic exercise and have done dance aerobics, step

aerobics, kick boxing, Tae Bo etc off and on for the past 30 years.

At the moment I am walking briskly 25 minutes a day, 6 or 7 days a

week, as well as doing stretching and situps. I do not get winded

with workouts, and it actually energizes me at this point.

About 6-8 years ago, I experienced the same symptoms as I have now

with my hands and feet, along with weakness in my right hand. Docs

gave me an EMG but didn't know what I had. Symptoms went away until

they reappeared about 3 months ago.

I am volunteering 3 days a week at a radio ministry (mostly computer

work) and doing housework, laundry, grocery shopping, etc the other 2

days. I try to keep the weekends and evenings free to do things I

enjoy. We used to live in the Philippines (tropical heat), where I

developed the habit of taking a 20 minute " power nap " after lunch

every day to make it through the rest of the day. I still do that

here in South Africa 4 days a week when I'm not at work, but do not

really need to like I did when the tropical heat would completely zap

my strength some days. I have always placed a priority on sleep. My

usual day is getting up at 5:30 a.m. and going to bed by 10 p.m. I

usually sleep well and wake up well rested.

So I guess at this point I will just count my blessings and hope for

the best. And if I get to the point where I start to have

stamina/fatigue issues, I will know the importance of slowing down

and pacing myself.

Blessings,

Barb

[Guest guest]

Bonnie,

Ask your doctor about the medication Provigil (it seems to help some people with

CMT combat fatigue. There may be other medications also that may help.

Housework - well, I don't waste my time on that. Sometimes only do one room at a

time (one day at a time) somedays I dust everything, but no vaccumming, other

days I only vaccum. Other days I only do the baths. Another day I do the

kitchen. But when I clean these areas it is perfect.

My place is very well organized - no piles of papers or magazines lying around,

everything has it's place and is tidy to start.

Then there is my garden and yard. I have a guy who mows the lawn, otherwise I do

the rest. Planting, pruning, pulling weeds, etc. I work in one hour segements,

as I loose all track of time out there. I still get alot done in a very short

period of time with all this.

For me, the key has been to work smarter, not harder. I make " To Do " lists and

as one thing gets done, I cross it off and go on from there.

Gretchen

[Guest guest]

Hi Bonnie,

 

How about an assistive device, such as a scooter for hallway travel or

maybe an adjustable folding cane with a seat, so you can open it and sit

whenever you need and keep it tucked away when you don't.  Sometimes just a

quick respite, i.e. sitting, can reinvigorate.

 

As for Provigil, I'd try samples first, if your doctor has them, to see if it

helps you or not, since the medication is expensive.  For me, it simply

aggravated my nerve pain in my arms/legs.  The medication is a stimulate used

by people, like pilots, to stay awake.  It's like drinking too much coffee

where the caffeine stimulates and makes you feel awake (and for some -

nervous), except this stimulates the nerves in a bigger way...at least it did

for me.  For some it helps, just try samples if you can, so you don't waste

money if it doesn't work.

 

You may also want to try CoQ10.  For some, this has helped with fatigue.  I

take 100 mg x 2 a day.  I have less fatigue issues with my breathing/throat

muscles when I'm taking it.  I recently ran out for about 10 days and started

getting headaches every morning again.  As soon as I was back on it, the

morning headaches went away.  So I know it's helping in some way.  Everyone is

different, but it may be worth a try.

 

From: Bonnie Engel <bengel@...>

Subject: Re: Fatigue

Date: Saturday, September 25, 2010, 7:32 AM

 

I have not listened to Lenka's blog as yet. How do I find that? I

am, however, experiencing a lot of fatigue. I work in a high school

with special needs students as an assistant and I am on my feet all

day. When my day is done, I am overcome with fatigue. One day, I

said to a teacher, I'm too tired to go home right now, I need to sit

a little just to go my car. Most days, I can get to my car, but when

I get home, I need to rest before even thinking of doing anything,

else. I am 63 and won't be able to retire until age 66. I have good

health insurance and both my husband and I need it. My fatigue has

increased over what I felt last year, and I was worn out at the end

of the day, then, as well. I've decided I need to do whatever it

takes to keep working, so my housework is taking a hit. That

provides more stress because I feel like I can't keep up and I can't

afford a cleaning lady. On a positive note, I like the students I

work with and I feel I am a positive influence in their lives, They

are seniors and will be graduating and then I will get a new

assignment next year. So, there is a possibility my position next

year won't be quite as taxing as my schedule this year. Any thoughts

or help is appreciated.

Bonnie

[Guest guest]

From: <agraham2k@...>

Subject: Re: Re: Fatigue

Date: Saturday, September 25, 2010, 10:17 AM

Hi Bonnie,

 

How about an assistive device, such as a scooter for hallway travel or

maybe an adjustable folding cane with a seat, so you can open it and sit

whenever you need and keep it tucked away when you don't.  Sometimes just a

quick respite, i.e. sitting, can reinvigorate.

 

As for Provigil, I'd try samples first, if your doctor has them, to see if it

helps you or not, since the medication is expensive.  For me, it simply

aggravated my nerve pain in my arms/legs.  The medication is a stimulate used

by people, like pilots, to stay awake.  It's like drinking too much coffee

where the caffeine stimulates and makes you feel awake (and for some -

nervous), except this stimulates the nerves in a bigger way...at least it did

for me.  For some it helps, just try samples if you can, so you don't waste

money if it doesn't work.

 

You may also want to try CoQ10.  For some, this has helped with fatigue.  I

take 100 mg x 2 a day.  I have less fatigue issues with my breathing/throat

muscles when I'm taking it.  I recently ran out for about 10 days and started

getting headaches every morning again.  As soon as I was back on it, the

morning headaches went away.  So I know it's helping in some way.  Everyone is

different, but it may be worth a try.

 

From: Bonnie Engel <bengel@...>

Subject: Re: Fatigue

Date: Saturday, September 25, 2010, 7:32 AM

 

I have not listened to Lenka's blog as yet. How do I find that? I

am, however, experiencing a lot of fatigue. I work in a high school

with special needs students as an assistant and I am on my feet all

day. When my day is done, I am overcome with fatigue. One day, I

said to a teacher, I'm too tired to go home right now, I need to sit

a little just to go my car. Most days, I can get to my car, but when

I get home, I need to rest before even thinking of doing anything,

else. I am 63 and won't be able to retire until age 66. I have good

health insurance and both my husband and I need it. My fatigue has

increased over what I felt last year, and I was worn out at the end

of the day, then, as well. I've decided I need to do whatever it

takes to keep working, so my housework is taking a hit. That

provides more stress because I feel like I can't keep up and I can't

afford a cleaning lady. On a positive note, I like the students I

work with and I feel I am a positive influence in their lives, They

are seniors and will be graduating and then I will get a new

assignment next year. So, there is a possibility my position next

year won't be quite as taxing as my schedule this year. Any thoughts

or help is appreciated.

Bonnie

[Guest guest]

It takes so much energy to walk, stand, etc that you just get worn out. I

am sure there is more to it like poor circulation etc..

J

In a message dated 9/23/2010 4:11:30 P.M. Pacific Daylight Time,

bartz.barb@... writes:

I have been listening to the interviews on Lenka's blog where she

interviews 3 people with CMT. Quite a bit was shared about fatigue.

So I am wondering what causes the fatigue. Is it just a general

tiredness such as is experienced by people with fibromyalgia or

similar illnesses. Or is it tied to the fact that so much energy is

used up in using arm and leg muscles that aren't as efficient due to

the nerve damage which then affects the muscles. I have absolutely

no fatigue- but at this point I also have no problems with walking or

using my hands (its mostly sensory at this point). So I'm wondering

if all people with CMT experience extreme fatigue (like was talked

about in the interviews), and if so, at what point it occurs in the

progression of the disease.

Blessings,

Barb

[Guest guest]

While you're still working, pay someone to clean your house every week or two.

It's not terribly expensive and taking both the work and stress off your back

will be a big help. Look at it this way: would you be better off to stop working

and go on Social Security or paying for help.

PS: Does your husband help with the housework?

>

> I have not listened to Lenka's blog as yet. How do I find that? I

> am, however, experiencing a lot of fatigue. I work in a high school

> with special needs students as an assistant and I am on my feet all

> day. When my day is done, I am overcome with fatigue. One day, I

> said to a teacher, I'm too tired to go home right now, I need to sit

> a little just to go my car. Most days, I can get to my car, but when

> I get home, I need to rest before even thinking of doing anything,

> else. I am 63 and won't be able to retire until age 66. I have good

> health insurance and both my husband and I need it. My fatigue has

> increased over what I felt last year, and I was worn out at the end

> of the day, then, as well. I've decided I need to do whatever it

> takes to keep working, so my housework is taking a hit. That

> provides more stress because I feel like I can't keep up and I can't

> afford a cleaning lady. On a positive note, I like the students I

> work with and I feel I am a positive influence in their lives, They

> are seniors and will be graduating and then I will get a new

> assignment next year. So, there is a possibility my position next

> year won't be quite as taxing as my schedule this year. Any thoughts

> or help is appreciated.

>

> Bonnie

>

[Guest guest]

True, walking is more effort for us, but I've been working with a Physical

Therapist to learn proper gait techniques. I think it will not only help me walk

better and longer, it takes the stress off of some joints before they're shot.

>

> It takes so much energy to walk, stand, etc that you just get worn out. I

> am sure there is more to it like poor circulation etc..

> J

>

>

> In a message dated 9/23/2010 4:11:30 P.M. Pacific Daylight Time,

> bartz.barb@... writes:

>

>

>

>

> I have been listening to the interviews on Lenka's blog where she

> interviews 3 people with CMT. Quite a bit was shared about fatigue.

> So I am wondering what causes the fatigue. Is it just a general

> tiredness such as is experienced by people with fibromyalgia or

> similar illnesses. Or is it tied to the fact that so much energy is

> used up in using arm and leg muscles that aren't as efficient due to

> the nerve damage which then affects the muscles. I have absolutely

> no fatigue- but at this point I also have no problems with walking or

> using my hands (its mostly sensory at this point). So I'm wondering

> if all people with CMT experience extreme fatigue (like was talked

> about in the interviews), and if so, at what point it occurs in the

> progression of the disease.

>

> Blessings,

>

> Barb

>

>

>

>

>

>

[Guest guest]

Hi Bonnie,

You didn't mention what parts of your body are fatigued... is it mainly your

legs? Is there any reason why you couldn't use a wheelchair to take some of the

stress off your legs for part of the day? (Like traveling distances down

hallways? or rolling around the classroom.) Using a wheelchair doesn't have to

be an all or nothing proposition. It can be a very useful tool, but one can

still walk and be active.

Mine has changed my life and enhanced my horizons. (The main obstacle to using

a chair is emotional, I KNOW! Been there. Once I got past that hurdle, I am

justifiably proud of myself for the grace, courage, beauty, and strength I

exhibit as a chair user. I kinda think I am changing the world for people with

disabilities by being a classy, outgoing, productive, fashionable chair user.

Wheelchairs don't have to be synonymous with old, infirm, used-up.) Anyhow, just

my two cents worth.

One other thought: Is this something for which an occupational therapist could

help? It seems a shame to forfeit benefits so close to retirement. There has to

be ways to make it work! Please share what you find helps... to help us, too.

Lynna

From: no_reply

Date: Mon, 27 Sep 2010 16:48:42 +0000

Subject: Re: Fatigue

While you're still working, pay someone to clean your house every week or two.

It's not terribly expensive and taking both the work and stress off your back

will be a big help. Look at it this way: would you be better off to stop working

and go on Social Security or paying for help.

PS: Does your husband help with the housework?

>

> I have not listened to Lenka's blog as yet. How do I find that? I

> am, however, experiencing a lot of fatigue. I work in a high school

> with special needs students as an assistant and I am on my feet all

> day. When my day is done, I am overcome with fatigue. One day, I

> said to a teacher, I'm too tired to go home right now, I need to sit

> a little just to go my car. Most days, I can get to my car, but when

> I get home, I need to rest before even thinking of doing anything,

> else. I am 63 and won't be able to retire until age 66. I have good

> health insurance and both my husband and I need it. My fatigue has

> increased over what I felt last year, and I was worn out at the end

> of the day, then, as well. I've decided I need to do whatever it

> takes to keep working, so my housework is taking a hit. That

> provides more stress because I feel like I can't keep up and I can't

> afford a cleaning lady. On a positive note, I like the students I

> work with and I feel I am a positive influence in their lives, They

> are seniors and will be graduating and then I will get a new

> assignment next year. So, there is a possibility my position next

> year won't be quite as taxing as my schedule this year. Any thoughts

> or help is appreciated.

>

> Bonnie

>

[Guest guest]

Poor circulation has very little to do with fatigue unless circulation is SO

POOR that muscles cramp while walking normally. The syndrome known as

intermittent claudication is connected with peripheral arterial disease which

infers significant atherosclerotic blockages resulting in arterial

insufficiency. Neurogenic claudication presents as a symptom of spinal stenosis,

but a CMT is a demyelnating disease fatigue shouldn't be attributed to either

syndrome.

I my view, fatigue present in CMT is a mechanical problem. Each leg comprises

15% of normal body weight. With 30% of ones body weight being moved by

compromised motor nerves and attached compromised muscles, fatigue is an

expected result. Fatigue isn't just caused by ambulation, but is also caused by

the small corrections required to maintain balance.

The solution: exercise to strengthen what musculature exists. In many cases the

word strengthen means waking up tomorrow with the same strength one woke up

today.

What should never be done is to exercise muscles to exhaustion. One may never

recover to the original strength. I speak from experience as I was forced to

exercise to exhaustion twice this year due to medical emergencies with my wife.

I don't think I recovered my strength from the first episode, and as the second

is still ongoing, I hope I careful.

Regards.

--Larry

[Guest guest]

I have to agree...twice, in 1997 and 2001, I had to return to the USA from

Europe due to insane fatigue caused by being too heavy, by living atop 52

stairs, and by having a bicycle as my means of transit.

It took some years after 2001 to get back to the level post 1997, pre 2001, and

I don't believe I have ever recovered from the 1997 bout with what

Crabtree told me was likely " nervous exhaustion, " even counting the loss of 50

pounds and the radical strengthening of my whole body with the yoga I pursue.

Maybe it has to do with being 44 and not 30, but I do believe there are points

of exertion one can reach that cannot be recovered from. So trying to prevent

over exertion in CMT patients is of critical importance, in my experience.

On Sep 28, 2010, at 5:25 AM, Larry wrote:

>

> What should never be done is to exercise muscles to exhaustion. One may never

recover to the original strength. I speak from experience as I was forced to

exercise to exhaustion twice this year due to medical emergencies with my wife.

I don't think I recovered my strength from the first episode, and as the second

is still ongoing, I hope I careful.

>

> Regards.

>

> --Larry

>

>

>

> Reply to sender | Reply to group | Reply via web post | Start a New Topic

[Guest guest]

Hello Bonnie!

The podcast interviews are here: http://lenkaland.com/podcast24/ You can also

download it to iTunes here:

http://itunes.apple.com/podcast/disability-community-podcast/id357433420

I wasn't even planning to talk about fatigue when I decided on me interview

questions . Just kinda kept resurfacing.

I retired from teaching at 33 years old. I don't know what state you live in,

but in CA, the State Teacher's Retirement System has disability insurance. It

wasn't easy to get, but if you can, it gives you 50% of your salary for life,

that same as if you have taught 25 years. It has saved me. The only problem is

that the 50% is based on you last year teaching, and I was still pretty low in

the payscale (I'd be earning a lot more now). But my health challenges didn't

give me a choice. I needed 5 years of teaching to qualify.

Worth checking into, anyway. Good luck!

Lenka

>

>

> From: Bonnie Engel <bengel@...>

> Subject: Re: Fatigue

>

> Date: Saturday, September 25, 2010, 7:32 AM

>

>

>  

>

>

>

> I have not listened to Lenka's blog as yet. How do I find that? I

> am, however, experiencing a lot of fatigue. I work in a high school

> with special needs students as an assistant and I am on my feet all

> day. When my day is done, I am overcome with fatigue. One day, I

> said to a teacher, I'm too tired to go home right now, I need to sit

> a little just to go my car. Most days, I can get to my car, but when

> I get home, I need to rest before even thinking of doing anything,

> else. I am 63 and won't be able to retire until age 66. I have good

> health insurance and both my husband and I need it. My fatigue has

> increased over what I felt last year, and I was worn out at the end

> of the day, then, as well. I've decided I need to do whatever it

> takes to keep working, so my housework is taking a hit. That

> provides more stress because I feel like I can't keep up and I can't

> afford a cleaning lady. On a positive note, I like the students I

> work with and I feel I am a positive influence in their lives, They

> are seniors and will be graduating and then I will get a new

> assignment next year. So, there is a possibility my position next

> year won't be quite as taxing as my schedule this year. Any thoughts

> or help is appreciated.

>

> Bonnie

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Thank you for that, Gilles, you are another postive relativly new menber, like

Tom.

We don't talk about fatigue all of the time, because it is a given and we would

all

soon grow tired of hearing it, because we all live with it. You have to know

your

limitations and try to do something with the energy you do have. I have to do

things

in steps, a little today and a little tomorrow. I may do more than some and

less than

others, but baby steps are better than none. I had foot surgery in '03 and the

doctor

told me I would be in a wheel chair in 2 years because the bones in my feet are

not

all connected and they would keep breaking. My expiration date has come and

gone

and my wheel chair is gathering dust in a corner and I don't look at it or even

think about it. Sometimes I think the data spewed about is speculation, so it

shouldn't scare us away or allow us to become paranoid. One day at a time.

Carpe Diem,

Lottie Duthu

[Guest guest]

Hello all,

well its nice to see how many of us are truly blessed with each and every hour

given us.

I remember well that dull December afternoon, 33 years ago.  It took me a

couple

of years and a soul awaking to remember all I did have. 

I continue to be a very lucky man,  I have a home, food, Children, and

Grandchildren

I think I have more than my share, unlike at least 80% of the world population

struggling.

I look at all the good in my life... you all can see  them ... look in the

mirror

SkipD

dx'ed 33 years ago.

 

________________________________

From: Lottie Duthu <lotajam@...>

CML < >

Sent: Tue, January 25, 2011 1:09:11 PM

Subject: [ ] Fatigue

 

Thank you for that, Gilles, you are another postive relativly new menber, like

Tom.

We don't talk about fatigue all of the time, because it is a given and we would

all

soon grow tired of hearing it, because we all live with it. You have to know

your

limitations and try to do something with the energy you do have. I have to do

things

in steps, a little today and a little tomorrow. I may do more than some and less

than

others, but baby steps are better than none. I had foot surgery in '03 and the

doctor

told me I would be in a wheel chair in 2 years because the bones in my feet are

not

all connected and they would keep breaking. My expiration date has come and gone

and my wheel chair is gathering dust in a corner and I don't look at it or even

think about it. Sometimes I think the data spewed about is speculation, so it

shouldn't scare us away or allow us to become paranoid. One day at a time.

Carpe Diem,

Lottie Duthu

[Guest guest]

Your are so right.  Just found out we have another great grandbaby on the

way.  Mom to be was 14 when I was dx, now I shall live to see her baby.  Life

is good.  I have another great grandbaby his mom was in the 5th grade and had

her entire class pray that I get into the STI571 trial and she stills feels

responsible for me still being here.  Every day is a blessing, treat it as

such. Bobby

a ( Bobby ) Doyle, dob 12/17/29

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

02/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

01/2009 PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.01

11/2009 PCR 0.034

02/2010 PCRU

#840 Zavie's Zero Club

From: Skip Duffie <skipd_2002@...>

Subject: Re: [ ] Fatigue

Date: Tuesday, January 25, 2011, 3:00 PM

 

Hello all,

well its nice to see how many of us are truly blessed with each and every hour

given us.

I remember well that dull December afternoon, 33 years ago.  It took me a

couple

of years and a soul awaking to remember all I did have. 

I continue to be a very lucky man,  I have a home, food, Children, and

Grandchildren

I think I have more than my share, unlike at least 80% of the world population

struggling.

I look at all the good in my life... you all can see  them ... look in the

mirror

SkipD

dx'ed 33 years ago.

 

________________________________

From: Lottie Duthu <lotajam@...>

CML < >

Sent: Tue, January 25, 2011 1:09:11 PM

Subject: [ ] Fatigue

 

Thank you for that, Gilles, you are another postive relativly new menber, like

Tom.

We don't talk about fatigue all of the time, because it is a given and we would

all

soon grow tired of hearing it, because we all live with it. You have to know

your

limitations and try to do something with the energy you do have. I have to do

things

in steps, a little today and a little tomorrow. I may do more than some and less

than

others, but baby steps are better than none. I had foot surgery in '03 and the

doctor

told me I would be in a wheel chair in 2 years because the bones in my feet are

not

all connected and they would keep breaking. My expiration date has come and gone

and my wheel chair is gathering dust in a corner and I don't look at it or even

think about it. Sometimes I think the data spewed about is speculation, so it

shouldn't scare us away or allow us to become paranoid. One day at a time.

Carpe Diem,

Lottie Duthu