Training update, week 12

I think my legs are trying to tell me something.  After 2 slow, painful runs in the rain this week, I skipped the long run I had planned for Sunday in favor of resting and hopefully feeling more like myself again sometime soon.  The timing is obviously not great, but at this point I think it's better to rest than keep slogging on to Patriot's Day.

This reminder came in the mail Saturday.

It was challenging week outside of running, too.  I'm just doing my best to deal with things as they come my way.  Like leaving helpful notes for my neighbors.

I like running water!

2 questions with Aunt C

Aunt C is Garrett's mother.  At the start, I was pretty apprehensive about this blog project, particularly writing about Garrett.  Aunt C's early support and encouragement really inspired me to give it a try!  And she agreed to be the next email interviewee.

Aunt C and baby Garrett, 1977

I should have asked how her Farrah Fawcett hair looks so good after having a baby!  
Instead I went with this:

Question 1: When did you suspect that Garrett had FA?

Garrett was diagnosed with FA in 1997 when the gene test was run by Dr. Pandolfo at the University of Montreal. We had met the doctor at an FA seminar right after the gene was discovered. The question about FA had always been there since Garrett’s aunt had FA. The doctors could not say for sure, however, until the test was developed. Garrett had some acute illnesses when he was 6 years old and that always conflicted with the diagnosis of FA early on.  

Power hitter!

FA did not slow Garrett down from living life as a young person should. While it was generally clear that his balance and coordination were off, the “what to do” did not have an answer. His class cheered when he completed the required number of laps around the school for gym in elementary school, even though he was the last of the last. He loved sports and played Little League for a while. When a teachers’ strike hit in the fall of his eighth grade year, street hockey became popular and the hockey stick gave him balance and a chance to play with his buddies.

Why didn't my teachers ever go on strike?

Sports continue to be Garrett’s favorite pastime.  He will be following the Boston Marathon and looking for AT!

Question 2: Can you share an experience of working with FARA?

FARA has been instrumental in bringing together researchers and doctors to investigate treatments for FA and to learn more about the pathways of this disease. In the last 5 years, there were more scientific conferences dedicated solely to FA then ever before. Conferences to update families and patients, and to provide open dialogue about concerns, have been held the last couple years in Philadelphia. FARA has a registry for FA patients so they can be notified of any new information or have the opportunity to participate in a study. Garrett has responded to questionnaires and provided detailed records for a cardiac study. FARA’s fundraising efforts, along with many family/patient participants, have raised millions of dollars for research. We are fortunate to have an organization pursuing a cure for FA with such vigor. We can only be optimistic!
 

Aunt C, Garrett, and crew at Ride Ataxia PA 2010



Thanks Aunt C!  I'll be thinking of you on Patriot's Day, too!

Training update, week 11

Happy Anniversary Mama T and JPT!

Palo Alto Courthouse, March 21, 1969

We are all a little weird and life's a little weird, and when we find someone whose weirdness is compatible with ours, we join up with them and fall in mutual weirdness and call it love. ~ Dr. Seuss

Fun fact - Dr. Seuss and I have the same birthday!  He'd be 107!

In honor of the happy couple, I ran 42 miles this week:

Tuesday - 7 miles on the track with TRIbe
                warm up, drills, strides
                4 x 1200m, descending
                cool down, stretch
Thursday - 8 miles on the roads (Mountain View)
Friday - 5 miles in the wind and rain, not cruisey! (Baylands)
Saturday - 6 miles in the rain (Steven's Creek Trail)
Sunday - 16 miles (only miles  4-16 in the rain!) (Alma Bridge Rd)

Spring is officially here and it's starting to look like it at my house!

Pretty white flowers outside my front door

And it's light outside at 6pm!  But dark again on morning runs.
  

Still pretty in the dark

At least I get to see the sun (when it's not raining), unlike my favorite M.D./Ph.D. student.  But she has cookies to fuel round-the-clock studying! And tote bags!

the glamorous life of CMT



Badger and Rocky

Patti in 1968

My Aunt Patti was a horse person.  You'd never know it by looking at my life now, but I still consider myself a horse person, too.  Growing up, my time was as consumed with riding horses as it's recently become with racing triathlons.  Patti's horse was Badger.  He was her opportunity for strength, responsibility, freedom, and companionship.

Badger and friends in Hamilton, MA

My horse was Rocky. I guess he brought me a lot of those same things.

AT and Rocky, 1998

Rocky in action

I don't know what it feels like to get a diagnosis like Friedreich's ataxia and hear that you have no treatment options.  Or what it feels like to slowly lose the ability to do the things that you enjoy.  I know how frustrated I've been over relatively minor injuries that prevented me from doing everything I wanted to do, exactly when I wanted to.  But I also know just what it's like to be a horse-crazy preteen girl!  And I love that this is something Patti and I shared.

Badger's shoe came to live with me when Patti died.

  

Training update, week 10

© Punk Rock Racing 2011

My California running last week:
 
Tuesday - 7 miles on the track with TRIbe
                warm up, drills, strides
                3 x (800m tempo, 2 x 400m fast)
                cool down, core, stretch
Thursday - 8 miles on the levy trails (Baylands) plus drills and strides
Friday - 4 miles jogging on trails (Baylands)
Sunday - 20 miles on the Sawyer Camp Trail, details here

My favorite outfit for running in overcast 50 degree weather - short sleeves and gloves.  And I like stripes!  You've seen the pictures.

warm hands = happy runner

My second 20 miler was followed by my first ice bath of 2011.  Misery.

Brrrrr!

Speaking of ice, I also went to my first Sharks game of the year.  Thanks GG!  I had much more fun watching other people smash themselves into the ice than sitting in it.

Sharks vs. Canucks on Thursday night

And finally, my stylish post-run outfit for recovering on Sunday afternoon.

Comfy compression socks!

3 questions with Grandma T

My Grandma T (mom to Patti and JPT) agreed to be the first in what I hope will be a series of three question "interviews" with Timbies.



Grandma T and AT

 Question 1: Can you share a memory of Patti?

Patti's animals were the center of her world during her illness, especially her horse, Badger.  He was a mustang trained to be a school horse at a nearby riding stable. Patti learned to ride on Badger and became very fond of him because he had such wonderful gates.  Later, when we moved to Hamilton and had a barn, Patti asked his owner if she could buy Badger.  She was told she could have any horse in the barn, except Badger, because he was such a valuable school horse.  Badger was gentle and safe for a rank beginner, yet could give an experienced rider a good ride.  Finally his owner relented and let Patti buy Badger.   For three years Patti rode him all along the trails in town and even over to Crane's Beach.  She gave up only when her illness had progressed so that she was no longer able to keep her balance. After that we got a pony cart and a mule for her to drive until that too became too difficult to continue.  Badger is buried at Ledgard Farm. 

Patti in the barn at Hamilton

And driving around Hamilton

Question 2: When did you suspect that Garrett had FA?

I think I suspected Garrett had FA, or something like it, early on.  He developed the classic FA unstable gate when he was about four.  He held his head down when he walked and I noticed his arms moved with a jerky motion. I had watched Patti's illness slowly develop and the similarities between her symptoms and Garrett's were inescapable.  However, I kept my thoughts to myself, even when Garrett's parents were talking about Gillian Barre or other causes. 

AT, Garrett, and a kitten, 1986

Question 3: Can you share an experience of working with FARA?

The Advocate has been a great source of information about FA for me.  FARA's expanded research and clinical trials have encouraged me to believe that sooner or later there will be helpful drugs and treatments, or an eventual cure for this devastating disease.  Although it was too late for Patti, I know Garrett has participated in several clinical trials.  I contribute to FARA regularly and will continue to do so. 

Garrett at Ride Ataxia, October 2010

Thanks Grandma T!  I'm looking forward to seeing you marathon weekend!

Visiting Grandma T on Cape Cod, 1988

Editor's note: The Advocate is FARA's newsletter.  It's a terrific resource and provides regular updates on FARA-supported research, scientific news, and fundraising efforts. You can read the Winter 2010/2011 issue here.  Maybe Sunnyvale-to-Boston will make the Spring edition?

Training update and "race" report

The results are in!  I feel a little guilty that I mislead the guessers, but I got sick at the end of the week (too much birthday revelry!) and when I still wasn't 100% on race day, I had to adjust my strategy from "racing" to "working hard but not digging myself into a big hole".  I ran 48:16 which makes CMT the big winner!  Congrats!  I promise I didn't rig it just because she's one of my very favorite blog readers.  For what it's worth, it was a tough course!  Lots of ups, downs, and changes of direction.  The overall women's winner ran ~44 minutes.  I was 7th overall, 4th of women age 30-39. 

A bag full of FARA goodies and a batch of homemade oatmeal-chocolate chip-cranberry-walnut cookies are on their way Boston.  If you're jealous of CMT, you still have another chance to claim your own prize by guessing my Boston Marathon time.  Stay tuned.

In addition to 6.2 miles for Jenny's Light, I also ran the following last week:

Tuesday - 7 miles on the track with TRIbe
               warm up, drills, strides
               3 x 1600m descending from #1 to #3
               cool down, core, stretch
Thursday - 7 miles on trails (Baylands) plus drills and strides
Friday - 4 sickly miles on trails (Baylands again)
Sunday - 12 miles - 3 mile warm up, 10K race, 3 mile cool down

The other important objective of the race was to try out my Team FARA jersey before Boston.  The team jersey alone is a little skimpy for my taste.  It's a loose-fitting, see-through white tank top!  So I've been experimenting with different base layers I feel more comfortable running around in.  This combination worked pretty well.

Extensively sweat tested post-race

The back - also a good message to girls trying to pass me!

Here's to good health and a final big training block before April!

How do you find a cure?

FARA's mission is to develop treatments, and ultimately a cure, for Friedreich's ataxia.  Where would you start?

Understanding the exact cause of FA, and the cellular disfunctions that lead to symptoms in FA patients, was a huge breakthrough!  FARA is currently supporting a range of work aimed at treating each specific mechanism of damage.  FA researchers believe that treatment will ultimately come in the form of a "cocktail" therapy - that multiple therapies aimed at different sources of damage can be used in conjunction with one another to successfully treat FA.  The chart below displays the different treatment approaches current being explored with FARA's support. (Click on the chart to make it bigger.)

FARA research pipeline as of February 1, 2011

The treatment pipeline depicts the progress of research and development in leading therapeutic candidates. On the horizontal axis, therapies are grouped based on their means of action (where/how they might work in the cell), the technological approach, or the problem being addressed. The vertical axis shows the current stage in the development process. The first two stages, research and pre-clinical, take place in the lab and represent early discovery and development. The stages “Phase 1” through “available to patients” are clinical trials or studies.  

Garrett can no longer participate in a clinical trials because his advanced symptoms make it impossible to measure a treatment effect on standard metrics like balance or hand coordination.  But he is currently one of only 20 people to receive an experimental, pre-clinical drug aimed at treating mitochondrial disease.  Since FA is a rare disorder, it's important that FA patients participate in the search for a cure.  Garrett will be a part of that achievement, when the day comes.  And we can be too by making financial contributions to FARA that allow them to support this effort.

Garrett in 2005, a better year for the Eagles

Final Contest Reminder!

You still have 2 days to enter a prediction in the Jenny's Light 10K contest!  Just leave a comment back over here with your best guess at my finishing time.

And thanks!

In other news this week, I'm another year older. And hopefully wiser and faster! Thanks for all the nice birthday wishes. They made for a great day!

My cube on Wednesday morning!

More cube decorations arrived.  I do love flowers!

It takes courage to grow up and become who you really are.
~ e.e. cummings