2015 awareness

This board is for adults and teens to discuss issues relating to BPI since birth (OBPI).
Posts: 557
Joined: Fri Nov 02, 2001 11:59 am
Injury Description, Date, extent, surgical intervention etc: Right arm OBPI One surgery at age 40 Ulnar nerve retransposition
Location: Florida

2015 awareness

Post by Judy-T »

As awareness week starts for Brachial Plexus Injuries, I thought I would share some of my life experiences. My personal motto is “if there is a will there is a way”! Life has thrown a lot of challenges at me and I think I am a stronger person because of this injury. As a child my mother would let me try anything I wanted to and let me discover for myself if I could do things. I played basketball, softball, and even football with my brothers and cousins. I tried ballet (left after 1st class). But the thing is I tried, some I did well and some not so well. As I got older in my teens I experienced pain that has not left me. I bite my lip and move on. Now my challenge is over use of my good arm. I was warned in my 40’s from a dear friend, Kath to take care of your good arm. So I am writing to you on awareness week to do the same.
I want to talk to you about someone I met 15 years ago. I admire her strength and stamina in dealing with this injury . Her name is Kathleen Mallozzi. She has been my rock and has always been there to support me thru some very rough times and I asked her if she could write something for awareness week that I could share with the community. So here it is:
Growing up OBPI
Over the last 15 years, as I age with OBPI, I have learned many things that I hope will help
others. There is a price to pay for compensatory movements, both on our unaffected arms and our spine. I am still happy that I let nothing stop me from doing everything I wanted to do. We OBPI need to be aware that we have some limitations but they don't have to disable us. We need to be aware of the way we compensate and how we use our bodies. We must also realize we have nothing to prove to anyone but ourselves.
Each stage of growing with OBPI have a set of challenges and they differ during the many
stages of our life.
Early childhood is filled with constant frustration and challenges. We see other children doing things we want to do our brain says go for it, our body won't let us. We have rude and curious people making hurtful remarks.
Teenage years are truly difficult for the average teenager, add OBPI to it and it's a double
whammy. Our self esteem, our desire to be totally independent of our parents and especially our hormones and the pain issues. Added to these issues is the lack of understanding and limited knowledge of the schools and adults, in our life, regarding true BPI issues. They have no idea of the physical limitations, pain and physiological issue we deal with that are not typical teen issues.
Once we reach our twenties many of us have pain issues due to compensatory movements.
Our peers cannot understand them because they are at peak energy. So we tend not to share
our challenges and issues because we don't want sympathy. If anything we try to put up a truly brave front that we can do anything and our arms are no big deal.
We want to begin our lives and most worry about finding a spouse and starting a family and how will they manage. I was very naive and never worried about having children or my ability to care for them. It was a rude awakening to discover feeding and caring for babies created a new creativity and safety problem. I solved it and manage to care for my babies but there was a price for all the lifting and carrying required when you have three children. I would happily do it all over again. The price I paid was the toll it took on my back, neck, arms spine and shoulders.
Now that I am much older the osteoarthritis has taken its toll on my body. The lack of educated competent medical advice regarding OT/pt issues has caused me to pay a high price for living a full life. I wish my PCP were even interested in my OBPI and used their medical expertise to advise me to get the advice of an OT . Most often they just offered pills for the pain issues instead of ways to avoid future repetitive issues. The mechanical functions of our body is different than common back and neck injuries. I hope that soon more and more doctors will no longer ignore the elephant in the room, our arms. Other than my family doctor, as a child and young adult, only two doctors check my ROM OR MENTION MY ARM and that in my late sixties.
The major problem adult and aging OBPI face is the lack of good medical care and interest.
Once released by pediatric BPI-specialist we are on our own and constantly searching for
physicians who take the time to understand our true medical issues and needs. We must truly be our own doctors and seek to remind physicians we have specific issues relating to our arm.
When we are birth injured it is not just our arms but often many other parts of our body. We
need to remind doctors that compensatory movements have resulted in secondary injuries. The hard part is trying not insult doctors ego regarding medical issues. Most have not studied the long term results of this birth injury because there are no long range studies on the life long issues facing adult OBPI and aging.
Kathleen Mallozzi ( adult/ROBPI)
Posts: 759
Joined: Tue May 05, 2009 11:51 am

Re: 2015 awareness

Post by Master DIVER TOM »

I wish I could of wrote this, :shock: :)
It us , in life trying our way, There is all ways the starting point in trying ;)
When I say its Tough being us.it is us, Posting here to :shock: Really ;) :D