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.

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. 

I also have angiod streaks and after being thrown from a horse last year, I have given up horseback riding due to the increased risk of a bad bump on the head leading to further eye issues. I am still fortunate in that I do not need injections at this time. 

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Stacey Mokalis's picture

i Mary!I was wondering.Hve you had bleeding in any of your eyes?Have you had injection after bleeding?

Mary-Elizabeth Garcia's picture

Hi Stacy,

no bleeds of injections. I do see wavy lines on the Amsler grid and there is distortion in my right eye when reading books. 

Josanne McLean's picture

I too have vascular blockages in both leg arteries. I was down to 70 meters of walking before onset of pain.  By increasing my walking I too have created natural bypasses.  My last two annual ABPI tests have shown improvement, with my range reverting to close to normal.

Stacey Mokalis's picture

i once again!Does anyone have a problem with his /her teeth?My dentist says that mine are extremely fragile!!!possibly because of a concentration of calcium????H

jodie's picture

I have not had any trouble with my teeth being fragile.  I do have osteopenia so my bones are fragile but so far teeth ok. 

Mary-Elizabeth Garcia's picture

No dental issues. Do have osteopenia but doctor states is more age related (I'm 63) than PXE. 

Kirk Waters's picture

 Has anyone reported  calcification of the grey matter in the brain that are actual TIAs/CVAs  causing light strokes/memory  Loss.  My heart and arteries are in descent shape... but something is causing light strokes...The  Docs are putting it all on PXE. I am not sure that I agree with them. I can deal affectively with the Legal Blindness and skin stuff...but I am now fighting these brain issues. (I worked at the Denver VA  in Blind Rehab & TBI and I see what is coming.Thanks?,

 

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