PXE LAB

PXE International promotes research that is driven by, and centered on, people affected by PXE. PXE LAB is a forum for PXEers and researchers to brainstorm, collaborate, and develop a research study on nutrition and exercise.

Exercising is fun!!

Stacey Mokalis's picture

Topic

ast year I took up pilates.I felt great.Unfortunately I got eye bleeding during summer so i never got back to it.L

 

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Sharon Terry's picture

Hi Stacy, When you think about what might motivate you to get back to it, what sort of support would you consider important?

Stacey Mokalis's picture

don't know if anything can motivate me anymore.After the loss of my central vision in the left eye (I am 46years old md a teacher)I am too scared to continue.I never had health issues connected to PXE.I have always had a serious problem with anemia.I do feel desperate.I

4juls's picture

Was this your first eye bleed at 46? I do pilates and have not had a bleed yet. I am 40 years old. What excercise will you do then? You will want to stay active for all of the many other positive benefits. I hope you find something you love again! Keep looking!

Stacey Mokalis's picture

Yes this was my first eye bleeding and it was a shock to me.I enjoyed pilates but I am too afraid to take it up again because I finally lost my central vision.I was thinking of swimming Have you had any bleeding?

Y

4juls's picture

I have not had any eye bleeding yet. I am anxious that it may happen to me since I am now in my fourties. With one bleed did you lose all central vision? Can you drive? No, I have not taken up swimming but its on my list of tries this year. One of my daughters just started lessons and loves it so I will try.

Stacey Mokalis's picture

t was my first bleeding and I let my central vision in the left eye.I am trying to see if I had changed sth in my daily life.Before the bleeding I was eating ice cream every day and I was in the sun (I live in Greece) for at least 3-4 hours for almost a month.Maybe this helped the bleeding.I can drive but I find reading difficult.I only had one shot in the eye.Maybe more shotswould help but I can't get another one in Greece.I

ScholarRR's picture

I found a good source with more info on PXE on Everipedia.

nini's picture

Hi I am new to this forum, I have extremely weak muscles, legs feel like lifting stone to lift and very sore - just had my heart and eyes checked and so far so good - my doctor recommended I start excercise, I have booked into a pilates class this evening - do you think I will be ok to do this?? or should I start by walking first? really confused and scared scared to start because of the pain I am going to feel after.  I still work full time (it is a struggle sometimes) but my doctor keeps pushing me to keep going!!!  

Anne's picture

Hi: I understand your fear but let me tell you that physical exercise is the fouontain of youth for the body.  All bodies want to move and all muscles will get stronger when they are moved.  Walking is the best exercise to start with try just 10 minutes at a time and build to 30 minutes and go from there. PXE or not all of us need exercise to avoid muscle waist as we age.  I wish you well on our journey to move your body, fist clear your activity with your Dr. and then find out how you like to move your body and then get out there and do it.  After a few weeks you will begin to feel stronger and more energetic.  Your body will thank you and respond with less pain and more energy!

 

nini's picture

THank you for your comments and advice, really appreciate it - I start tonight!!

 

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