Running with dystonia

Leafing through rec.running, I read MaryO49's message of 12 Oct 2004:

> But oh, if I can run. A 55 year old taking up running again? Seems
> unlikely, but, I am going to try! Tomorrow morning. Just a few
> miles. I feel like this is what they mean when they say "this the
> first day of the rest of your life."

That is great news Mary! I'm looking forward to following your progress.

Phil M.

--
"What counts in battle is what you do once the pain sets in." -John Short,
South African coach.

Phil M. wrote:
>"What counts in battle is what you do once the pain sets in." -John Short,
>South African coach.
_______________
Thanks, Phil! I like your quote! That's a keeper!
Mary

Some folks never learn.

<< As you know, I wrote (lamented) >>

Me too.

<< dreary tale on here, >>

Au contraire!

<< Long
story short, my doctor at the University hospitals told me today that
(shock)...he wants me to run. Not walk. >>

Great!

<< But oh, if I can run. A 55 year old taking up running again? Seems
unlikely,
but, I am going to try! >>

Are you accustomed to any aerobic? If not, i'd say ramp up first with cycling;
and then be very careful about introducing your running routine.

DonVon is quite helpful on this topic. Hopefully he'll chime in.

_______
Blog, or dog? Who knows. But if you see my lost pup, please ping me!
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HREF="http://journals.aol.com/virginiaz/DreamingofLeonardo">http://journal
s.aol.com/virginiaz/DreamingofLeonardo</A>

I never learnt nuthing

On Tue, 12 Oct 2004 21:52:48 -0400, [email protected] (Miss Anne
Thrope) wrote:

>Some folks never learn.

<< Some folks never learn. >>

Gentle instruction helps.
You can quote me.

_______
Blog, or dog? Who knows. But if you see my lost pup, please ping me!
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HREF="http://journals.aol.com/virginiaz/DreamingofLeonardo">http://journal
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Hi Mary,
Glad to see you finally got a Dr with a brain. ;?)~
TheBillRodgers

[email protected] (MaryO49) wrote in message news:<[email protected]>...
> Hello, rec runners. The last I checked, no one else on this newsgroup has
> dystonia. It is a rare disorder, particularly in the foot. I have it. It
> stopped my running...I almost said..."stopped my running, cold", but, it was a
> long process to get it "stopped." As you know, I wrote (lamented) many a
> dreary tale on here, about trying to figure out what was wrong with me . Well,
> I thought that I would never run again... nor, really, even walk far. Long
> story short, my doctor at the University hospitals told me today that
> (shock)...he wants me to run. Not walk. Not swim. Run. It seems that when a
> person has been running nearly half her life, and then she stops, the muscles
> do ugly things. They tighten. The tendons shorten. And any other problem she
> has exacerbates. So, if I'm understanding this correctly (it is a bit
> muddled), I have not just a neuro muscular disorder, but also a skeletal
> muscular disorder at the top of my leg which makes the dystonia more painful.
> Running does not make dystonia worse in itself, unless I overdue (hmmmmm....);
> thus, if I run, the muscles will strengthen and the tendons will lengthon. Or
> something like that. But, the doc wants me to run. I also have more in the
> regimen of activities they suggest I follow at the Spine Center. I now have a
> "team" of specialist to help me with this.
>
> Dystonia is an awful thing. I have primary focal dystonia in the foot. The
> foot can be fine for about 8 hours, during which time you think
> (dream)...aaaaah, I'm all better now. And then, it is "attacked". The attack
> lasts for two days, and those two days are hell. During that time, the muscles
> twist, and the foot feels like it is in a meat grinder. There's much more, but
> that's enough. Some people have this in their whole body. God help them.
>
> But oh, if I can run. A 55 year old taking up running again? Seems unlikely,
> but, I am going to try! Tomorrow morning. Just a few miles. I feel like this
> is what they mean when they say "this the first day of the rest of your life."

[email protected]entary (Brilliant One) wrote in message news:<[email protected]>...
> << As you know, I wrote (lamented) >>
>
> Me too.
>
> << dreary tale on here, >>
>
> Au contraire!
>
> << Long
> story short, my doctor at the University hospitals told me today that
> (shock)...he wants me to run. Not walk. >>
>
> Great!
>
> << But oh, if I can run. A 55 year old taking up running again? Seems
> unlikely,
> but, I am going to try! >>
>
> Are you accustomed to any aerobic?

Umm Virginny? She said in her post she's been a runner all her life.
Think that qualifies as ever doing any aerobic exercise before? She's
a long time poster here, although infrequebtly since she got hurt.

[email protected] (MaryO49) wrote:

>Hello
>
>But oh, if I can run. A 55 year old taking up running again? Seems unlikely,
>but, I am going to try! Tomorrow morning. Just a few miles. I feel like this
>is what they mean when they say "this the first day of the rest of your life."
>
>


Wow, that's fantastic, Mary!

Imagine, a doctor ordering someone to run?!?!

Starting over at 55 ain't all that bad. Just forget about any previous
PR's and go for a whole new set of post-dystonia ones.

Good to have you back.

Mike Tennent
"IronPenguin"

Mike wrote, encouragingly...
>Good to have you back.
>
>Mike Tennent
>"IronPenguin"
~~~~~~
thanks, Mike
Mary

MaryO49 <[email protected]> wrote:
> I thought that I would never run again... nor, really, even walk far. Long
> story short, my doctor at the University hospitals told me today that
> (shock)...he wants me to run. Not walk. Not swim. Run.

Hi Mary,

Glad to hear the good news.
Pleasantly shocking indeed.

> But oh, if I can run. A 55 year old taking up running again? Seems unlikely,
> but, I am going to try! Tomorrow morning. Just a few miles. I feel like this
> is what they mean when they say "this the first day of the rest of your life."
Cool. And miles to go before you sleep.

Good luck,
jobs

MaryO49 wrote:

> Long
> story short, my doctor at the University hospitals told me today that
> (shock)...he wants me to run. Not walk. Not swim. Run. It seems that when a
> person has been running nearly half her life, and then she stops, the muscles
> do ugly things. ... if I run, the muscles will strengthen and the tendons will lengthon...
> But, the doc wants me to run.

That's really good news and makes sense, Mary. Glad to hear it sounds
like they're getting some things figured out.
>
> But oh, if I can run. A 55 year old taking up running again?

Why? Helen Klein started at 55 and has since set several age group world
records in distance running (marathons and ultras), including at least
one since she turned 80.

Seems unlikely,
> but, I am going to try! Tomorrow morning. Just a few miles. I feel like this
> is what they mean when they say "this the first day of the rest of your life."
>

Go for it!

Dot

--
"So many people get stuck in the routine of life that their dreams waste
away. This is about living the dream." - Cave Dog

Thanks, Jobs and Dot..

I did two miles tonight and will do two miles tomorrow morning. I am at the
"good" side of what I call the cycle, so, I am fine now. My foot muscles
follow a twisting pattern that repeats about every three days, almost like
clockwork. Today was the good day, so, I would expect I could do fine today.

When I told my friends and coworkers what the doctor said, about me being
encouraged to run, as long as I don't overdo it...they rolled their eyes and
said "yeah, like, THAT"s not going to happen." I am desperately afraid, tho,
of the pain.. and of this darkening my future...so, I am going to be
disciplined to stick to only three miles. It's not like I should be able to
"work up to longer distances."

I might be surprised, tho... we'll see. Who knows...this could even be an
experiment that will fail miserably. I've had many disappointments with this
disorder so far...lots of ups and downs.

Tonight, after I ran, I sat with my right leg folded across my left leg and
pushed down, to stretch out the muscle at the top of the leg. That is the
muscle that needs to be stretched.

So far, so good...but, it's only the beginning. Thanks, rec.runners.

Mary

Mary,

Look forward like the others of hearing of your progress.

Great little article:
http://www.goanimal.com/newsletters/2004/enquiring_bodies/enquiring_bodi
es.html

"If you've followed the controversies of back pain, you know the story
by now. In the dark ages of the mid-to-late 20th century, physicians
commonly prescribed bed rest for back pain. Doctors really had no
clear idea of what actually caused back pain, but they assumed that
the best course would be to treat it like other orthopedic problems
such as fractures. If you break your leg, it makes sense to cast it
and stay off of it for a few weeks."

" Unfortunately, this approach was spectacularly ineffective and often
counter-productive. Study after study has now confirmed that bed rest
is no more effective than simply getting on with life and moving as
best you can. And, because bed rest also deconditions the muscles of
the trunk, it can delay recovery even further. So, activity seems to
be the best medicine."

After you read the article especially the part about back pain and
exercise over bed rest, you might want to subscribe to goanimal.com

I'm reading through his book right now: Play as if your life depended
on it.


In health and on the run,
Ozzie Gontang
Director, San Diego Marathon Clinic, est. 1975
Maintainer - rec.running FAQ
http://www.faqs.org/faqs/running-faq/
Mindful Running:
http://www.mindfulness.com/mr.asp


In article <[email protected]>,
Dot <dot.h@#duh?att.net> wrote:

> MaryO49 wrote:
>
> > Long
> > story short, my doctor at the University hospitals told me today that
> > (shock)...he wants me to run. Not walk. Not swim. Run. It seems that
> > when a
> > person has been running nearly half her life, and then she stops, the
> > muscles
> > do ugly things. ... if I run, the muscles will strengthen and the tendons
> > will lengthon...
> > But, the doc wants me to run.
>
> That's really good news and makes sense, Mary. Glad to hear it sounds
> like they're getting some things figured out.
> >
> > But oh, if I can run. A 55 year old taking up running again?
>
> Why? Helen Klein started at 55 and has since set several age group world
> records in distance running (marathons and ultras), including at least
> one since she turned 80.
>
> Seems unlikely,
> > but, I am going to try! Tomorrow morning. Just a few miles. I feel like
> > this
> > is what they mean when they say "this the first day of the rest of your life."
> >
>
> Go for it!
>
> Dot

In article <[email protected]>, MaryO49
<[email protected]> writes
>Oz was his always-encouraging self when he wrote:
>
>>Mary,
>>
>>Look forward like the others of hearing of your progress.
>~~~~~~~
>Thanks, Oz. Always good to hear from you.
>
>It's a lovely fall day here. I ran my two miles this morning. This so very
>much puts me back in touch with the "runner" in me.

You don't need to put "runner" in quotes like that. Try this:

This so very much puts me back in touch with the runner in me.

Isn't that better?

The weather is lovely today here, too. I only took up running less than
6 months ago, so I've run in the spring, summer, and autumn. Autumn is
my favourite so far, as long as it stays dry and I can run during
daylight.
--
Mel Rimmer

Oz was his always-encouraging self when he wrote:

>Mary,
>
>Look forward like the others of hearing of your progress.
~~~~~~~
Thanks, Oz. Always good to hear from you.

It's a lovely fall day here. I ran my two miles this morning. This so very
much puts me back in touch with the "runner" in me. I am so very glad to be
doing this. Two miles doesn't seem like much to the rest of you... but, it is
enough to get all those good feelings going. Hopefully it will always be
enough, and that I won't take the chance on more... unless the doctor says for
sure I can do that.

Yesterday was a bad day in the cycle (pattern) of the dystonia. The pain
during those days is so very terrible that you go to a dark place, and that's
what you have to fight against. If it has reached this point in just a few
years, where will it go from here? What is the future of this? Those are the
thoughts I have to push out of my mind. And, those are the kinds of things the
University hospital will help me with next month when I go up for the full day
of information, assessment, introduction to services, etc. Fortunately, I am to
still run even on the bad days. I wouldn't have thought that is possible, as
the bottom of my foot has an uneven platform, from the twisted muscles...and,
the top is twisted, too. I thought that I would only injure things more. But,
the doctor says to run. And I am glad.

As I was running this morning, I wondered if maybe the running itself could
strengthen the muscles and lengthen the tendons in my FOOT, and that in turn
would fight against the involuntary movement and twisting that is so painful.

I'll just keep doing what the doctor tells me. I'm so grateful to him for at
least diagnosing it, even though there is no cure or even successful treatment
other than "management the best you can" for neuromuscular disorders. None of
the doctors around here had a clue what this was.

I am sorry to sound bleak... I'm considering starting a blog on aol to write
about the good days and the bad days.

Well, it's a beautiful day out there, and I'm off to a wedding with my family.
Now then, what to do about a shoe...

Mary

Mel wrote...
>You don't need to put "runner" in quotes like that. Try this:
>
>This so very much puts me back in touch with the runner in me.
>
>Isn't that better?
>
>The weather is lovely today here, too. I only took up running less than
>6 months ago, so I've run in the spring, summer, and autumn. Autumn is
>my favourite so far, as long as it stays dry and I can run during
>daylight.
>--
>Mel Rimmer
~~~~~~~~
Well, Mell...that was mighty inspirational, and what rec.running is all about,
yes? Thanks. Yes, that is better. What I recall is that when Laurie (some
of you know Laurie) was struggling with her breast cancer, she had a wonderful
spirit. What an amazing person she was. I want to capture that spirit, and I
think that running can bring me back to that.
Mary

"MaryO49" <[email protected]> wrote in message
news:[email protected]...
> Hello, rec runners.

Hi Mary, good to see you back.

Just a thought (and probably not a helpful one) but I vaguely recall that
MS sufferers (multiple sclerosis/disseminated sclerosis) who have painful
muscle spasms have benifited greatly from cannabis/cannabinoids. In some
countries/states, they can get it on prescription. Although you've not got
MS it might still help.

Have a google on muscle spasm and cannabis and you'll see lots of info,
positive and negative. Might be worth having a chat with your doctor about
it.

Take care.

Tim

Leafing through rec.running, I read MaryO49's message of 16 Oct 2004:

> Well, Mell...that was mighty inspirational, and what rec.running is
> all about, yes? Thanks. Yes, that is better. What I recall is
> that when Laurie (some of you know Laurie) was struggling with her
> breast cancer, she had a wonderful spirit. What an amazing person she
> was. I want to capture that spirit, and I think that running can
> bring me back to that. Mary
>

I just googled for some of my posts to Laurie from 1999. That was some
hilarious stuff. And to think what she must have gone through in the end.
She had an amazing attitude. What a wonderful person.

Phil M.

--
"What counts in battle is what you do once the pain sets in." -John Short,
South African coach.