Re: in a hurry

[Guest guest]

When I was younger, everthing was about hurry, but gradually I learned that at

worst this disease is slowly progressing, and in my situation, mildly or not at

all.

With some wisdom now, I can see that being in the state of " hurry " was the wrong

road. Now, I live a day at a time. Sure, I " plan " what I want to do, travel I

want to do, goals I set, accomplishments I want to achieve, etc. But I get out

of the way of the results and leave them to happen. I don't project the

outcomes.

Each one of has has ONLY TODAY. Best to enjoy it to the MAX. Achieve a steady

path, go forward one step at a time, smell the flowers, feel the wind, laugh and

have fun on the way.

Smile too!

Gretchen

[Guest guest]

Better to live for today then put off until tomorrow.

Lori

[Guest guest]

Thanks so much for sharing what you are feeling. (It seems to me like you

articulated something very well that I have also experienced.)

First I find myself curious: Will you tell us more, please, some of the specific

things you are trying to do that you don't want to regret later.

I want to add that, while losses are difficult (and always must be grieved),

I've found there are always new things to embrace and life can continue with

fullness in spite of the losses... there are gains to be had. For instance, I

thought I had to travel to Europe before I became so disabled that I wouldn't be

able to travel. (I never made the trip.) I find now that in a wheelchair, I can

still go to Europe, it will just be different than if I was walking. But, more

importantly, I find my desires changing, and I can find just as much enjoyment

through other activities that are more accessible... I enjoy and appreciate

traveling across town to spend time with friends at a restaurant, for example.

My desire for planting huge flower beds all over my yard has transformed into

delight in nurturing a couple of plants on my deck and really " seeing " them. My

desire to run and to dance has transformed into delight in being able to

strengthen my disabled body through riding a recumbent bike and a desire to use

my strength to help others. I can see that well-being is an inner-directed

focus and not so dependent upon external circumstances. For that reason, I know

that as there are fresh losses, I will always be able to access contentment. In

very real ways, I am living more fully and more alive than when I " passed " for

normal.

At the root, I think we all fear that life is only good as long as we are

able-bodied enough to enjoy it. The truth is, enjoying life is possible for

everybody, regardless of ability level... it's a matter of letting go of

expectations, honestly acknowledging and grieving the pain of the losses, and

holding out our hands to be filled with new desires and delights.

Lynna

[Guest guest]

i know exactly what you mean. i lost my abilities to do a lot of things right

after college (early 20's).  since i was " lucky " that it happened at that late

stage, the only regret i had was not going waterskiing. BUT, the cool thing is,

5 years ago i did go water skiing through a disabilites group. Don't fret, you

will be surprised at what you will be able to do even when it appears that you

would be too weak to do it. There are so many things we can accomodate our

bodies to do.

Jackie

[Guest guest]

Hello All,

I've felt that way for many years now. Gave up sports first then flying

airplanes and eventually the unmentionable. I've been collecting my favorite

movies and videos of past activities against the day I am invalided and have

hundreds of them.

EdM from NH

[Guest guest]

Yes..., but I have been able top reverse the progression, sending the pain

levels downward and the ability, dexterity, strength, stamina, balance,

proprioception tom levels never seen before, making life in motion what I call

" unknown ease. "

From walking on the (uneven) lawn barefoot to intimate relations, everything is

now easier than it was 2 years ago. I am also 40 pounds lighter.

The secret is yoga tune up, which can be found at www.yogatuneup.com.

This is not standard yoga. It is Physical therapy using yoga inspired moves with

the stated purpose of correcting imbalances and helping, teaching or training

various muscle groups to work well together.

As CMTers, we have huge imbalances in many cases, and this this a great way to

change things.

Your first lesson I believe is free at the website.

Gretchen... I have no commercial affiliation with Yoga Tune Up save that I pay

Jill , its developer, to be my personal trainer 2 hours per week.

>

>

[Guest guest]

Yeah, I bought a ATV quad & a boat. I'm making the most and when I can't get in

or on anymore............I wont wonder what if.

defman

From: slbill@... <slbill@...>

Subject: in a hurry

Date: Tuesday, August 17, 2010, 5:40 AM

 

This isn't always easy, but I am going to try to communicate something I am

feeling.

As this is a progressive disease, I feel like I am in a hurry to do some things

(or to do some things a lot right now) so won't have any regrets when I start

losing the ability to do them later in life.

Anybody else?

[Guest guest]

I do agree that we can all have a rich, fulfilling life regardless of physical

limitations.  However, because I have young children, I do find myself

" hurrying " to do the more physically demanding activities (such as hiking or

rock climbing) while I still can.  I don't value these activities (or

memories)

more than those I will have later; however, I definitely don't want to miss the

opportunity to create the memories!

Ann

 

 

________________________________

From: " slbill@... " <slbill@...>

Sent: Tue, August 17, 2010 8:40:26 AM

Subject: in a hurry

 

This isn't always easy, but I am going to try to communicate something I am

feeling.

As this is a progressive disease, I feel like I am in a hurry to do some things

(or to do some things a lot right now) so won't have any regrets when I start

losing the ability to do them later in life.

Anybody else?

[Guest guest]

Oh boy, do I ever hear you! Thank you for making me think about this topic

again. I needed to do some serious soul searching!

I have believed for a long time that I need to go to Ireland and England ASAP

because as I lose my mobility, I will lose my ability to traverse the ancient

significant sites, like the Hill of Tara, Newgrange and Stonehenge.

Unfortunately, lack of funding has kept me home, so far! (I now have a specific

savings plan and goal for a trip date). The same goes for buying a house. I SO

want one, but while I am working to earn the money, my physical capabilities are

declining, and honestly, how can I keep up the yard work, and even house work by

myself?

I have been working to change my perspective, however. A friend of mine was

paralyzed from the waist down in a riding accident earlier this summer. Very

quickly she adopted the attitude that while this may make some serious changes

to the way she lives her life, it is not going to stop her from living! She has

short and long-term lists of goals, and one of them is to go to England. She

plans to keep teaching at the University where she is a professor, and intends

to go about her life to the best of her ability.

In the face of such courage and positive attitude, how can I continue to feel

sorry for myself, about what MIGHT happen to me? (Not judging others here, just

being real about the " victim " role that I am traditionally so good at playing).

I have long watched my father and sister's CMT progression ahead of mine and

mentally put myself in their shoes, ahead of where I really was.

Do I still want to travel abroad? Yes! Will I be able to access all the sites

I want to, once I finally make it over there? We'll see! Will I make the best

of what I can do? Yes! Will I lose faith at times? Absolutely. I have been a

glass half-full kinda person for too long to just turn it all around immediately

and permanently. However, I will remember what my friend said about herself: " I

thought I would be concerned b/c I tend to be a glass half-full kind of person,

but since the accident it seems to me that it is more important what is in that

glass, rather than how much! "

>

> This isn't always easy, but I am going to try to communicate something I am

feeling.

>

> As this is a progressive disease, I feel like I am in a hurry to do some

things (or to do some things a lot right now) so won't have any regrets when I

start losing the ability to do them later in life.

>

> Anybody else?

>

>

>

[Guest guest]

More so now than ever, I was diagnosed just three years ago and within those

three years the disease was progressing faster than I liked but always hoped ok

this was as bad as it may get, wishful thinking, well just in the past few

months I am finding it harder and harder to walk, my balance is getting worse

I'm really scared now and feel like its to late to do a lot of things I have

been wanting to do because my mobility is getting limited. I work out 5 days a

week and bike 8 miles 3-4 nights a week. Although it doesn't help stop the

progression I do it because one day I know I won't be able to. So yes if there

are things you have been wanting to do, DO IT!! before you can't, I woke up one

day and have found I couldn't.

[Guest guest]

I live every day for the day and do everything I possibly can. I know I am

limited, but there are few things I miss or wish I could do that I don't do. I

know someday walking Disney World will come down to riding a scooter, but it

will not stop being from being there beside the love of my life. (We are

regulars there). I do what I can with my sons and even though I cannot do all

the things with the young one that I did with the older one, I will not let that

stop him from having everything the older one had. I will not have regrets and

will never stop having adventures.

The one " obsession " I have... When I have had enough and have to sit for a while

when we are Disney, I find myself looking at people's shoes. It amazes me how

people can spend an entire day walking a theme park in flip flops! Imagine that!

Crocs get me too! I tried a pair once - they are like walking on marshmallows!

Problem with something that soft is how easy it is to twist the good ole ankles

in them! So the once worn marshmallows went in the trash rather than break my

neck. That is one thing that gets to me is shoes! It is not fair other people

can wear something so comfortable or nice. I've been known to wear black

sneakers with a tuxedo! How sucky is that?

Guess I got off track....

Mark

>

>

>

[Guest guest]

Mark,

I know what you mean .....I get to wear slippers!

Geri

>

[Guest guest]

There are things in my life I would love to do while I am still fairly

mobile..my " bucket list " I guess you could say. The list no longer includes

dare devil type activities. I decided about 4 years ago that I wanted to go

snowmobiling one last time in northern Wisconsin where I grew up. I ended up

dumping the sled and landing flat on my back on snow packed blacktop. I thought

I was ok, just a little sore. About 3-4 days later my leg just crumbled and I

lost control of my bladder and off to the e.r. I went. I had fractured my left

sacral wing tip. I have had rather severe back issues for quite some time prior

to this and had a steroid injection planned for after I returned from my

trip...so I figured it would just take away any pain/discomfort from

snowmobiling " one last time " I pray that I ACTUALLY did earn from this mistake.

(I still have pain from this daily)

JoAnn

>

> This isn't always easy, but I am going to try to communicate something I am

feeling.

>

> As this is a progressive disease, I feel like I am in a hurry to do some

things (or to do some things a lot right now) so won't have any regrets when I

start losing the ability to do them later in life.

>

> Anybody else?

>

>

>

[Guest guest]

You guys crack me up! It's so nice to have a group of people who " get " little

things like flip flops. I have a favorite pair of croc's that are

flip-flop-like, they cross over the top of the foot and don't go between the

toes (I HATE that -- no idea why). I love them because they are so light and I

feel like I'm barefoot and I kind of like that slap-slap-slap sound they make.

Unfortunately, lately they sound more like SLAP-<tap>-SLAP and everytime I try

to step up on a stair the left one goes sailing no matter how hard I concentrate

on it. My sister took to rubberbanding hers on. I'm about there. My poor

husband. He just looks at me, shakes his head, retreives my shoe and puts it on

my foot for me. What a good guy.

Holli

>

>

> Mark,

> I too have sat on the Disney bench and questioned the same thought. Heck, I

find myself watching people walk in shoes often and can not understand why they

stay on their feet and not mine. I have a pair of flip flops and I sometimes

wear them around the house to hear that flip flop sound I remember from the day,

until they fall off. I may someday just duct tape them to my feet and go about

my business with my head held high! I am at the point that I have to wear high

top sneakers with my professional clothing. A cute look for a 13 year old

skateboarder rather than a professional 47 year old woman! I have a very unique

look and have noticed people inquisitively looking at me like " why does she wear

those shoes " , just as I too inquisitively wonder why when they can wear any

shoe they choose and they have chosen such ugly ones!

>

>

> From: mrwillis@...

> Date: Thu, 19 Aug 2010 01:22:05 +0000

> Subject: Re: in a hurry

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> I live every day for the day and do everything I possibly can. I know I

am limited, but there are few things I miss or wish I could do that I don't do.

I know someday walking Disney World will come down to riding a scooter, but it

will not stop being from being there beside the love of my life. (We are

regulars there). I do what I can with my sons and even though I cannot do all

the things with the young one that I did with the older one, I will not let that

stop him from having everything the older one had. I will not have regrets and

will never stop having adventures.

>

>

>

> The one " obsession " I have... When I have had enough and have to sit for a

while when we are Disney, I find myself looking at people's shoes. It amazes me

how people can spend an entire day walking a theme park in flip flops! Imagine

that! Crocs get me too! I tried a pair once - they are like walking on

marshmallows! Problem with something that soft is how easy it is to twist the

good ole ankles in them! So the once worn marshmallows went in the trash rather

than break my neck. That is one thing that gets to me is shoes! It is not fair

other people can wear something so comfortable or nice. I've been known to wear

black sneakers with a tuxedo! How sucky is that?

>

>

>

> Guess I got off track....

>

>

>

> Mark

>

>

>

> >

>

> >

>

> >