United Brachial Plexus Network, Inc.

Two years ago at the urging of a former poster here (Tina Baby) I applied for a handicap parking tag. I did not want to get one I would have to admit that I might be disabled. That word I was sure did not apply to me… I considered myself (in my mind) almost handicapped but not quite, oh well it made me feel better. I began to realize I stopped shopping; I was not going to places I had to carry anything because of the conditions of both arms due to overuse. I would only shop if someone was with me to help. I was loosing my independence. Tina wrote me a note that said “repeat after me- I am disabled” (she wrote it about ten times) she told me to get over it and go for the tag. I did and it was the best thing I ever did. I can go anywhere and not worry about carrying heavy stuff back to the car. I always preferred to park as far as possible from the store to get in the extra walking time. My PT suggested I not carry anything over 10 lbs… yikes that’s my pocketbook! It is filled with cell phone, pda, water bottle... duh too much stuff.

There is a reason for this long story. I had a conversation with an adult/obpi today and that person does not have a tag and she is keenly aware that overuse starts early with us obpi kids.

I was just wondering how many adult/teen/obpi have handicap parking?
Do you realize that overuse begins early and we need to protect our healthy arms because they have to perform for a lifetime? I could be the poster girl for over use -- that is if I was still a girl... LOL..

Jumping/stepping off the soap box.
Kath

Yes, I have one.
I got it about 3 years ago. All I needed was for my doctor to sign the form. He doesn't want me carrying things and he esp. doesn't want me falling anymore. The carrying of anything adds a level of difficulty to my balancing act and I have fallen and broken bones more than enough in my lifetime already.

Nancy

I just got one, but one person told me that I should take my Mom or leave my daughter with somebody if I needed to go somewhere LOL. I use it only if I have my daughter with me she is only 6 months and I have to carry the car seat or stroller.

No...actually I have never thought about it.

over here in the Uk they are getting harder to get hold of - they will really only give them out to people who have mobility difficulties - Gavin used to have one about 4 years ago, but they took it off him.
It was very useful when he had a hospital appointment as parking is very difficult at the site due to the large number of staff cars.
I do think its a good idea to help with carrying heavy loads etc - even a plastic jug of milk over here weighs about 3 kilos - Gavin's school rucksack weighs 6.4 kilos !!!! ( we weighed it for him)
I hate to think what it is doing to his shoulder carrying all that weight all day.

Karen

As you can tell I really did not want to go for one. I felt I could walk; in fact I walk many hours a week. I did not want to hang the tag from my front window and besides it’s hard to tell until you look close what is wrong and I think I was a bit embarrassed.

Well if I had it to do over I would have asked for one 20 years ago. It would have saved my so much pain and also prevented some of the secondary injuries. Perhaps your group should try to see if something could be worked out for obpi/tbpi especially adults who have to lug bundles , books or small children. It really does put such a strain on our unaffected arms, neck and our entire body to be lifting and carrying.

This maybe something to speak to your bpi specialists about ... do you think they could help to push for this as a necessity to prevent the loss of the unaffected arm and secondary injuries including overuse.
Kath

Kath,
I never asked for one because I walk so much. I think I asked years ago and the dr. told me I could push a cart. I'm thinking about asking for one again as sometimmes the walk to the car with package is terrible.
I have an appointment with a hand surgeon later this month. My thumb is finally going and my middle finger is bent dowm on the tip--not to mention all the other fingers and the swan nexk deformitiy. That'a the good hand. Wish they could transplant the finger joints from the erb's hand to the other one.
I was wondering if there were any clinical trials for osteoarthitis and finger joint replacement. It's getting so I dread washing my hands sometimes because my fingers hurt so bad. How about you????????? and what are you up to lately???? Pat Q

Pat
Get that tag. I love to walk but I was warned about falling because I will never put my arm out to save myself and I have the spinal compression.

Let's not talk about my hands... wish they had hand transplants! I saw a hand specialist and he told me when I had no quality of life left then he would do the joint replacement. The operation is not a great thing and does not work real well from the things I have read and the hand specialist said it is a last resort.

I hear what your saying about hand washing... warm water only... but try to keep those fingers working as much as you can.

For a Handicap parking tag all the doctor has to do is fill out the form for you. Erb's Palsy is a reason to get a sticker. You can pick up the application at your town hall and/or some doctors have it right in their offices. You do have one arm that does not function. I felt silly at first but I love it when I shop. As far as pushing a cart - I put both hands on the cart but only one does the pushing and stearing so again it throws my body out of whack. Get the tag!
Kath

I put the palm of my hands on the cart. the finger and thumb pain has been so bad lately that I really thought about the joint replacements--also about maybe getting that first joint fused. I had surgery 5 years ago on the first finger. It was supposed to give me more mobility .Instead it is fued. the Dr. said I have absolutely no cartilage in there and he took out the bone spur,cleaned it out and there is nothing more to be done. My middle finger tip is also numb and get really painful in cold weather. I worry about the circulation. Sure wouldn't want to get gangrene in it.
Wish they'd come up with a realistic finger joints. Wonder why they can't use cadaver joints?Pat

O.k. I am still having a hard time with this. I don't consider myself handicapped. I guess I need to look in the mirror more. I know what you are saying about protecting the good arm ,it's just hard for me to take that step in getting a tag. When Dr. Nath spoke Friday night at our meeting and said about all the adults he has seen that are 45 and over that are disabled., it kind of scared the sh*# out of me. I know I need to wake up and get on the ball. O. K. I really need a cattle prod to get me moving into thinking about my future. My next step I guess will be talking to rehabilitation doctors to point me in the right direction. I know y'all will keep pointing me in the right direction also LOL.