Seeing BPI specialist is KEY: think about KKI in Baltimore

[marylandmom]

Inspired by many of the stories I have read on this website, I decided to see a BPI team in near my home at the Kennedy Krieger Institute in Baltimore, Maryland. My intent was to get hooked up with the OT/PT that this facility had to offer and that is exactly what happened.

I have met the most amazing OT's who I have seen for the past 8 weeks and I have gained 15-20 degrees of mobility in my affected shoulder: extension and abduction. They have now offered me pool therapy and electrostim (though due to my tendon transer at age 6 when they applyt his to my L shoulder I feel the sensation in my L abdomen which is kind of funny....)

I am so pleased on so many levels and am learning more every week.

I am a physician and I NEVER knew what a difference seeing therapists trained to work with BPI's could make: it DOES make a HUGE difference!

The exercising I am doing now is because I want to not b/c my mother is making me. THis is not to make moms feel bad but to say that this is a lifelong injury and that when the affected person starts to take care of it, the therapy changes (my injury was largely ignored and the elephant in the room so it is only in my adulthood that i have been brave enough to seek care for it). I cannot imaging doing the types of therapy that I am doing now as a child and I talk to my OT's about this (b/c I am a pediatrician and work with kids, obvioiusly) and they confirm that the therapy changes as kids mature. I wish that I had been given the message that "this part of you deserves care too" But I was not, so some overcoming of shame had to happen also. I think the best thing parents can do for kids is to help avoid shame, make this a part of their lives but not to overly dwell on it and LET THEM OWN IT so that someday, they will have the tools and the presence to know what to do to take care of themselves.

I have been successful in life and people don't usually see my injury everyday b/c in my day job, they don't notice my arms are different lengths and that I can't supinate or raise my arm above my head b/c they do not see me struggle: I have so many compensating maneuvers.... But, my unaffected side has taken its toll and that is part of the motivation for me seeking this care. The surprising thing is that even so, with specialty therapists and my motivation, there is so much that can still be done to help me. This is above and beyond what my local PT could do for me and she was really good. The people who "think" this injury are really amazing. What a surprise that there is more improvement that I can make. My elbow will always be contracted and my arms will never be the same length but the tightness and the muscle pain and strain and ROM can be better.

So this is a plug for people to be seen by BPI specialists. Even as a medical professional I did not realize how key this was until I learned about this UBPN website. And I will put in a plug for the Kennedy Krieger Institute: check them out on line. the Team that I saw at my appointment were all great (except I thought the ortho guy was a bit of a gruff toad...but my resources tell me this is his personality and not personal). Really liked the rehab doc.
Sara

[F-Litz]

Sara - thanks for your post. I'm so glad to see that you are a doctor. Maia (my 13 year old who has a bpi) wants to become a doctor so I'm excited to tell her about you. She wants it but she has doubts about it. With Maia, all the interventions she had as a young child were so intense and so invasive that there came a point where she had to get mainstreamed into normal life with normal activities. And ever since then she wants no part of doing anything specifically for her arm.... I figure that one day she'll understand that she still has to work on it -- as she matures but until then at least her activities involve her arm in certain ways but her function has dropped to the ground to 10-20 percent on a good day. I can't force her to use her arm or force her to stretch or massage or force her to do anything -- teenager on board.

[marylandmom]

Dear Mother of Maia-
She absolutely can pursue medicine, though there will be challenges. I suppose that I ultimately became a pediatrician because I was on a quest to make children in difficult (health/body) situations feel heard and understood based on what I went through on the early part of my BPI journey.

And as for teenager-ness~ living that at home too. Got it. Take comfort in knowing that I did very little to take care of my lefty until adulthood. Dabbled in it in past 10 years but really only got serious about it this year and the results are phenomenal in the hands of specialists. Having said that, I did stay active. My interest in yoga was something that helped pave my way back into focussing on my BPI. I still struggle with a young version of myself when " it is time to do your exercises" but that is getting easier too with time.

A little something we used to say on overnight call comes to mind re: the teen years....."they can hurt me all they want, but they can't stop time!"

Sara

[Carolyn J]

Sara,
It would be wonderful if you'd come to Camp 2012 in July & talk to girls Maia's age. . There are a number of them.
Carolyn J
LOBPI/73+

[Jedi2859]

To Sara,

I too am going into Medicine. I'm in my second year of Med School and that is what prompted me to seek out ways to improve the functionality in my left arm. I would love to be a surgeon but I know might be a stretch. I starting to focus on Peds surgery. I know our injures are vastly different because of my CP. I am a left sided hemi quad, it now really only affects my left arm. I'm actually going to see a specialist this come Monday to be evaluated for a procedure xalled a Sective Motor Fasciculotomy down Miami, it is the sister procedure of the Selective Dorsal Rhizotomy done for spasticity. However, because of my goals of being a surgeon this is a step I needed to do.

Any advice on questions I should ask?

To the Mother Maia,

I know exactly how your daughter is feeling about her problem right now. I went through those exact feelings and motivation problems. Hope she will start to come around soon but, it has to be her call. If, you push to hard, she will push back doubly hard again what you are asking for. I wish you all the luck in sirviving her teenage year and know this the motivation will return.

[marylandmom]

Dear Jedi2859,

I have to say that the procedure you cite is way out of my league/knowledge base.

In general, make sure the potential gains are worth the risks and that there is a strong rehab system in place to support you afterwards. Making new "muscle memory" and "undoing" compensatory/"bad" muscle habits is the hard part for me. You will need good therapists to help you with this after your procedure.

In addition, be sure that you want this procedure for your own personal quality of life and not only b/c you anticipate a career as a surgeon.

Best of luck to you. It's a hard road and you are doing it!
Marylandmom

[Jedi2859]

Thank you for all your advice and sorry for not responding back to you sooner. I just got back from Miami early this morning after seeing a specialist about my arm down there. That appointment didn't go as I wished. However, the doctor referred me to Dr. Grossman down there and even went so far as to call his office and to check to make sure that Dr. Grossman did the procedure that can help me. Today I am getting together some of my medical records to email them to him as to avoid taking a four hour trip down to Miami if, I am not a canidate for the surgery.

As to your advice about making sure that I'm doing this for the right reasons, I am. I'm at an age where I'm getting more and more frustrated with the limited use of my left arm and it's functionality is actually decreasing and I just can't let it become useless.