Comments on: McArdle’s Disease Precautions http://mcardlesdisease.org Information About McArdles Disease or Type V Glycogen Storage Disease Sun, 06 Jun 2010 18:04:01 +0000 http://wordpress.org/?v=2.9.2 hourly 1 By: Niki http://mcardlesdisease.org/living-with-mcardles-disease/mcardles-disease-tips-for-a-better-life/comment-page-1/#comment-1545 Niki Thu, 01 Apr 2010 22:49:34 +0000 http://mcardlesdisease.org/?page_id=11#comment-1545 I am a 24 year old female, married, mother of two, diagnosed at 18 after what seemed life a lifetime of talking to deaf ears(doctors), shouting into the dark, and feeling invisable. But as you all must have known, as well as i knew then, something was wrong. And it is good to share this life obstacle with so many others. All i can say is i completely agree with the above article and the only thing not mentioned (probably due to the non-medical nature)that i feel i can add is: on the flip side, tell the people you care about that you have a reason; a good reason when you "break" or possibly go into "muscle failure" (your legs lock up). Everyone else in the world doesn't need to know, (ex. the guy stareing blankly at you from the department store window) but always know pain is fleeting and also that the ones who truely care dont mind waiting the extra minute or three. My husband said to me once it, "gives him time to smell the roses". It made me feel better instantly. and i have seen more then my fair share of shooting stars that way...xo I am a 24 year old female, married, mother of two, diagnosed at 18 after what seemed life a lifetime of talking to deaf ears(doctors), shouting into the dark, and feeling invisable. But as you all must have known, as well as i knew then, something was wrong. And it is good to share this life obstacle with so many others.
All i can say is i completely agree with the above article and the only thing not mentioned (probably due to the non-medical nature)that i feel i can add is:
on the flip side, tell the people you care about that you have a reason; a good reason when you “break” or possibly go into “muscle failure” (your legs lock up). Everyone else in the world doesn’t need to know, (ex. the guy stareing blankly at you from the department store window) but always know pain is fleeting and also that the ones who truely care dont mind waiting the extra minute or three.
My husband said to me once it, “gives him time to smell the roses”. It made me feel better instantly.

and i have seen more then my fair share of shooting stars that way…xo

]]> By: Emile Thebaud http://mcardlesdisease.org/living-with-mcardles-disease/mcardles-disease-tips-for-a-better-life/comment-page-1/#comment-1442 Emile Thebaud Fri, 26 Mar 2010 20:28:49 +0000 http://mcardlesdisease.org/?page_id=11#comment-1442 I among others do have McArdles disease it sucks when i was young and it sucks even more at the age of 48. I among others do have McArdles disease it sucks when i was young and it sucks even more at the age of 48.

]]> By: Jan Weekley http://mcardlesdisease.org/living-with-mcardles-disease/mcardles-disease-tips-for-a-better-life/comment-page-1/#comment-1338 Jan Weekley Sun, 14 Mar 2010 01:16:27 +0000 http://mcardlesdisease.org/?page_id=11#comment-1338 Once again, this is SOOOOO like me, except I've never really thought much about covering up the "stopping and resting" problem. When I ran out of steam, I just naturally stopped!! If someone objected to it or said something negative, that was THEIR PROBLEM. It can be embarrassing, though. For as long as I can remember, I've had this, but I never associated it with a disease. Having just been on a tour, it was very obvious that I couldn't keep up. I sat out many places that involved hills or a lot of walking ( walking for me ). I just naturally decided to get a "head start" before the group where I could ( which wasn't many places, unfortunately). It's funny that you should mention Atlanta's airport. It is a real challenge. What I did is walk a little and then sit a little at the different boarding areas. There was NO WAY that I could have made it any other way. Keep posting things about McArdle's Disease, because. I bet, there are other people who have this and don't know it. I'm going to get brave and see if I do have a diagnosis of this. THANKS! Once again, this is SOOOOO like me, except I’ve never really thought much about covering up the “stopping and resting” problem. When I ran out of steam, I just naturally stopped!! If someone objected to it or said something negative, that was THEIR PROBLEM. It can be embarrassing, though. For as long as I can remember, I’ve had this, but I never associated it with a disease.

Having just been on a tour, it was very obvious that I couldn’t keep up. I sat out many places that involved hills or a lot of walking ( walking for me ). I just naturally decided to get a “head start” before the group where I could ( which wasn’t many places, unfortunately).

It’s funny that you should mention Atlanta’s airport. It is a real challenge. What I did is walk a little and then sit a little at the different boarding areas. There was NO WAY that I could have made it any other way.

Keep posting things about McArdle’s Disease, because. I bet, there are other people who have this and don’t know it. I’m going to get brave and see if I do have a diagnosis of this.

THANKS!

]]> By: Jay http://mcardlesdisease.org/living-with-mcardles-disease/mcardles-disease-tips-for-a-better-life/comment-page-1/#comment-567 Jay Fri, 03 Jul 2009 19:54:56 +0000 http://mcardlesdisease.org/?page_id=11#comment-567 These are great. I concur with all of them, especially staying out of deep water (I had two close calls in gym classes) and avoiding non-power steering (apart from the concern about emergency situations, one of the worst muscle strains I've ever had was from trying to parallel park a car without power steering). I also want to praise the invention of the cellphone. What a blessing for people with McArdle's! You can stop dead just about anywhere, dig out your cellphone and pretend to listen to it, push buttons like you're texting, etc., and no one will think anything about it. I love it. These are great. I concur with all of them, especially staying out of deep water (I had two close calls in gym classes) and avoiding non-power steering (apart from the concern about emergency situations, one of the worst muscle strains I’ve ever had was from trying to parallel park a car without power steering).

I also want to praise the invention of the cellphone. What a blessing for people with McArdle’s! You can stop dead just about anywhere, dig out your cellphone and pretend to listen to it, push buttons like you’re texting, etc., and no one will think anything about it. I love it.

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