On the days when the answers don't seem so easy to process and the challenges are even greater, I know that the folks at PMG Awareness Organization are there to help me. We celebrate the milestones together and sympathize in a way that no one else can. I have made connections with others who have helped to navigate this road.
Wonderful and compassionate organization. I have worked with Brandy and Catrina in the beginning and was floored by their level of commitment to the cause and to helping others. They have grown this organization into something much more than simply a nonprofit. They genuinely care about each child, family and donor. I don't think you can work with a better group.
i am an adult with bps pmg epc hit when i was 55yr old 2009
i am /was a nurse but am now a pt . disabled
what i have gone through has been a rollercoaster ride of reports and emotions
each month something new attacked my body and still is .
trying to understand what was happening to my body and deal with the barrage
of tests and horrible meds has been a nightmare that no one else seems to be able to comprehend
all i get is " you look good" while the intractable neuro pain burns my Lt face hand and foot .
one month in i lost the ability to talk , spent a yr working at home every day and still have difficulties with S's , or any sound that requires a smile as 1/2 the face tongue larynx and trachea are frozen - muscle moves - nerves do not send correct message .
the worst part for a child i think is my epiglottis does not close , EVER , so saliva pools at my vocal chords and i must stop and take a breath in and then swallow , thousand times a day !
NEVER lay on your back !!! on affected side to sleep and drool onto pillow .
never feed mixed textured food eg require chewing and swallowing at the same time - soup w/ noodles . stay away from grapes , tart oranges or drinks , watermelon , keep head bend down so fluid stays in mouth until ready to swallow .
good foods , bananas , avocados , thick power drinks , grains , meat , sandwiches if not too wet ,
i use a straw to drink water , get it in fast and down the right tract . bolis of foods are good
i had diff. eating as i couldn't move the food around in my mouth properly / has improved with exercise . hearing loss , strange sounds , buzzing clicks hissing . crowded rooms VERY uncomfortable , hurricane in my head 24/7 pain pills help ?5% not worth the side effects and kidney damage. no longer feel my skin ,pain was so great shut off all sensation , pain internal now, plus allodynia in hand , touch anything cold or smooth glass, metal SCREAM ! must keep affected side warm . 2 yrs later can't feel muscles , and last yr , ligaments and tendons ! torn rotator cuff because i could not tell how much i was lifting . any extra pain experience to LT side is held onto for days longer . having balance issues , Lt leg does not lock into place very tiring to stand and limited walking . acute motor skills lost in hand , cannot tell diff. between hot and burning temps
people ask " what do you do all day"? it take twice the time to do anything and you must be aware of everything you are doing at all times . i aspirate all the time , usually the first bite when i am not ready , or the last bite when i put my guard down my life is all about concentration just to get through my ADL as an adult i have the knowledge to comprehend some of this and had the skills i lost to relearn , but as a parent with a child my heart goes out to you with their inability to communicate their pains and needs i wish you all the love and success required to bring you child through this difficult time
This group goes above and beyond to get families together and to research all kinds of information and support for families with children who have been diagnosed with PMG. The organizers are driven by their liove and dedication to their own children and by their desire to gather up and help all families who have children in the same situation.
I am both a parent of a child with PMG and a professional in the field serving children with developmental disabilities. This group helps parents share information they would not other wise have access to. This group is wonderful!
Thank you so much for taking the time to share your experience with our organization! As we grow, we plan to continue to do more to fulfill our mission.