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.

Ideas tagged as Exercise

Ideas (8 total)

Displaying 1 - 8

exercise recommendation

nini's picture

Topic

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.

PXE study idea

SBT's picture
Hi everyone! I'm Sophie and I'm about to enter graduate school for public health. Both my dad and my aunt have PXE, but their lifestyles and the progression of their disease are quite different! I was surprised to learn that there haven't really been any formal studies that characterized the role of exercise and overall nutrition on PXE.

What would you like to study in nutrition and exercise?

Sharon Terry's picture

Hi all,

OK - let's imagine we are going to study whether or not PXE is affected by diet and exercise? If you could measure some movement or exercise and see how that impacted your experience of PXE, what would you measure?

If you wanted to chart what you eat - what do you think makes a difference in how your PXE progresses?

I look forward to your thoughts!

Best,

Sharon

PXE

Tuan To's picture

I were diagnosed with PXE in the 1980's . Now I am 61 years old and fortunately, my PXE condition is under control.

I am checking amsler grid daily and check up every year with my opthalmologist. I am watching my diet and daily exercise - 40 minute brisk walk at lunch time and 30 minutes of stationary bike and elliptical after work. My plan is to burn at least 300 calories with walking and exercice per day. I do indulge myself with eating out occasionally.

Tuan

stopping intense exercise may help reduce bleeds

Alex's picture

Topic

I had been exercising intensely for the past 10  plus years and had to have frequent shots of avastin.  I began to wonder if the types of exercise I was doing were contributing to my bleeds so I stopped very intense ab exercises that seemed to pump blood into my head.  I also stopped doing yoga with my head below my heart.  This seems to have helped as I haven't had a bleed in almost a year.  Now the challenge is to keep motivated with my new, less intense exercise routine.

 

Nutrition & Exercise

Mary-Elizabeth Garcia's picture

I try and follow a balanced diet to maintain a healthy weight and keep my blood pressure and cholesteral in check. I have blocked femoral arteries and take Plavix. My main form of exercise is walking. I walk and walk and walk.  According to my vascular surgeon, the walking has enabled my body to "create its own bypass" which assists in my circulation. My left foot still gets numb while walking, usually after one mile. But there was a point where I could not even walk a very short distance without numbness and pain. 

Running hurts!

Elizabeth Terry's picture

Topic

I was diagnosed with PXE when I was 5 and have always struggled with my weight. I used to try to get fit by running. I wouldn’t last long because of really severe leg pain. I learned that it was called “intermittent claudication” and it was caused by PXE.