Team Blazeman

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Hi all,

 

As an ironman finisher and a sport adict I am not sure how much should I train and should I race after diagnosed with ALS.

Some doctors say do everything you can, some say do a little - don't get to your maximum as your recovery is poor.

I will be very happy to know what others knows. I don't think I can make another Ironman but if you dont train hard your limits goes backwords all the time.

What do you think?

 

Another thing I wonder - I think I know about some 7 Ironman finishers who got the ALS, and all of them died within a year and a half from being diagnosed. That is way below the average 3-5 years. Will be happy to get any comment / thoughts on that as well.

 

Thanks friends,

 

Shay 

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anyone?

Shay...I did not want to comment on your question...I see your request again...i will give you what I learned and know about Jon...but before...he was told heavy exercise would not be good...a # of reasons, the one that was most concerning to Jon was "recovery"...that seems to be factual, again a # of reason, we are doing work on this concept at "Wake forest Univ"...see our reseach page...and Wake Forest.

Secondly, my perssonal observation and discussion with Jon...exercise caused him "extreme exhaution"...slow recovery...and much "muscle dysfunction"...his words, "after an out-put of activity. I never seen to be where I was before that out-put"...fits a concept in (oxidative -stress)...thus he stopped totally "taining activity"...if you look at the 2005 video...prior to the race, he did streching...trying to stay as limbor as possible...did lot of "visulization" of the race, and what his options would be...without long discussion, this is what his preparation was...also include "message"...stiffness was a problem and concern...all during this time he continued to lose muscle and limb function...enough.

Third...comment on post pace recovery and function...immediately after the race...whitin minutes...much physical problems...spent 2plus hours in the (med-tent)...all forms of ( muscular disability), he also had this during the event...lack of feeling in the limbs...hands...arms and legs...had some difficulty swollowing???
Post race recovery was slow...especially just after we got back to the condo..."long hot shower" to relive stiffness...followed by a series of messages...we had brought his own "message therapist"...night and most of the day...spent the whole day resting...was complete spent.

Forth...my observations days and weeks post event...never functioned again as he did prior to the race...my belief is his level had fallen off...seemed the ALS in terms of functionality was made worse...

Shay...this is my observations...Mary Ann and I spent everyday with him...we saw changes that were day to day...

Shay...your situation is different...how different I do not know...you have a family and other obligations...no one can tell you what you should or should not do...your decision...my heart is with you...your decision is what is the important one...hopefully, you understand these were my observations...much more could be described, but would serve no purpose...and from a fathers point of view this was not easy...I just relived what I would call were his most trying time...given the athlete he was...bdad...jon's dad.

 

In Strength, Honor and Freedom,

"Remember the -blazeman...Ironman's Braveheart"

bmom and bdad...jon's mom and dad.

 

Shay

While the only thing I can say is listen to your heart and what your soul tells you. From this Blazeman Warrior you have my 110% support and if there is ANYTHING that I can do please let me know.

Todd Jennings

Hi Shay,

I agree with Todd... listen to your heart and do what you feel is best for you! 

Seems that exercise tends to worsen the odds...  My Grandfather had ALS and exercised to the point of falling down all the time.  People thought he was drinking until they realized he was not!  Eventually he could not walk walk anymore and had only lived about about two years after being diagnosed...  I thank God every day that he had kept all his faculties.  He was like a father to me as I grew up with him.  This year is the 30 year anniversary!  

Good luck my dear and may God bless!  All my best to you!  <3

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