Living with BPI Handbook
Living with BPI Handbook
I have been on this board for a bit now after discovering it by accident, and after 20 years of dealing with bpi pain and one handedness by myself, I can’t tell you what a benefit it has been to my life to see that I am not alone. In return, I want to contribute to this community. I want to compile a book of the many techniques that we use to get through the day. I know that there is a book available that gives hints for one-handed living, but I intend for this to be a pbi focused book that is available for free download from this site. New members can learn from the rest of us and, hopefully, use this to adjust to this life in a positive way. And, hey, who knows, maybe we old timers will learn something new.
I have discussed this with Nancy Birk and the board has endorsed this project, so here is what I need from you.
Pay attention to how you go through the day; and then tell me how you cook, work, get dressed, do hobbies, yard work, etc. Nothing is too minor to record. Write them down in this thread or email them to me at hvandelinde@personainternet.com. Also, for the material already published, I would also appreciate volunteers who will go through the archives and pull out the material.
I will gather them, organize them, and then publish a PDF file for free download. I will maintain this file and will update on a regular basis.
I am a professional technical writer with a Ph.D. in English literature. I write for a living and look forward to putting this together over the winter.
So come one, come all. I’m posting this on the other UBPN discussion groups too. I look forward to hearing from all of you.
Henry
I have discussed this with Nancy Birk and the board has endorsed this project, so here is what I need from you.
Pay attention to how you go through the day; and then tell me how you cook, work, get dressed, do hobbies, yard work, etc. Nothing is too minor to record. Write them down in this thread or email them to me at hvandelinde@personainternet.com. Also, for the material already published, I would also appreciate volunteers who will go through the archives and pull out the material.
I will gather them, organize them, and then publish a PDF file for free download. I will maintain this file and will update on a regular basis.
I am a professional technical writer with a Ph.D. in English literature. I write for a living and look forward to putting this together over the winter.
So come one, come all. I’m posting this on the other UBPN discussion groups too. I look forward to hearing from all of you.
Henry
Re: Living with BPI Handbook
Hi Henry...what a terriffic idea! We started something similar, although not in a book form on the TBPI Group website. Bathing a baby and tying long hair back are just two everyday tasks that people with a TBPI have unconventional ways of carrying out....check out these pages;
http://tbpiukgroup.homestead.com/baby_bath_bucket.html
http://tbpiukgroup.homestead.com/yeti_hairtie.html
(the last page is a bit slow to load, but worth the wait!) I am also hoping to get some pics of a friend of mine wallpapering using her head, and other info will be uploaded as soon as I can get it organised. If this is the type of thing you are looking for, you are more than welcome to use any part of these articles or pictures as long as there is a reference somewhere in your Handbook to the original source i.e. the TBPI Group http://www.tbpi-group.org
Best wishes
Liz B :0)
http://tbpiukgroup.homestead.com/baby_bath_bucket.html
http://tbpiukgroup.homestead.com/yeti_hairtie.html
(the last page is a bit slow to load, but worth the wait!) I am also hoping to get some pics of a friend of mine wallpapering using her head, and other info will be uploaded as soon as I can get it organised. If this is the type of thing you are looking for, you are more than welcome to use any part of these articles or pictures as long as there is a reference somewhere in your Handbook to the original source i.e. the TBPI Group http://www.tbpi-group.org
Best wishes
Liz B :0)
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jennyb
- Posts: 1183
- Joined: Fri Nov 02, 2001 5:24 pm
- Injury Description, Date, extent, surgical intervention etc: January 1980 Yamaha RD200 vs 16 wheeler truck, result, 1 totally paralysed right arm. I was 21, now 54. I had no surgery, I don't regret this. Decided to totally ignore limitations (easily done aged 21) adapted very quickly to one handed life, got married, had 3 kids, worked- the effect of the injury on my life (once the pain stopped being constant) was minimal and now, aged 54, I very rarely even think of it, unless I bash it or it gets cold, then I wish I'd had it amputated :) Except for a steering knob on my car, I have no adaptations to help with life, mainly because I honestly don't think of myself as disabled and the only thing I can't do is peel potatoes, which is definitely a good thing.
Re: Living with BPI Handbook
Great idea Henry! I bought that 'One Handed in a Two Handed World' book a couple of years back and was amazed at how I did most things completely differently than the author. I therefore assumed the book was of no use, everyone does things differently etc etc, but of course I've been reduced to one hand for a very long time and have worked things out my way-a book like this when I was newly injured would have helped not so much by telling me 'how to....' but by letting me know I could DO IT AT ALL!
I'm wondering if you'll be doing things just from a flail arm (or amputee) perspective or if you'll include stuff for people who actually have some use of the bpi arm as most birth injured people seem to-could end up being a long book....
As well as the sources of info mentioned by Liz, the Erbs Palsy Association site has a great section on how to do stuff.....they are at www.nbpepa.org
.....while I'm writing, anyone with a flail dominant arm know how to shave that armpit? It's been a long time.........propping the arm up against the side of the shower/wall doesn't work with a flaily, the dead weight and slippy wall prevent it staying there. Maybe amputation will let me get in there at last........:0)
Good luck with this Henry, give us a kick if you want any help
Jen NZ
I'm wondering if you'll be doing things just from a flail arm (or amputee) perspective or if you'll include stuff for people who actually have some use of the bpi arm as most birth injured people seem to-could end up being a long book....
As well as the sources of info mentioned by Liz, the Erbs Palsy Association site has a great section on how to do stuff.....they are at www.nbpepa.org
.....while I'm writing, anyone with a flail dominant arm know how to shave that armpit? It's been a long time.........propping the arm up against the side of the shower/wall doesn't work with a flaily, the dead weight and slippy wall prevent it staying there. Maybe amputation will let me get in there at last........:0)
Good luck with this Henry, give us a kick if you want any help
Jen NZ
Re: Living with BPI Handbook
Hi Henry! I think that I am still the "grand old man" of tbpi. My accident that started things off was on the playground and I was about 6 years old. That was 49 years ago. One of the first things that I learned about being one-handed is that you have to be patient and intensely creative. Growing up I played cornet/trumpet in the marching band, worked as draftsman (long before CAD), was an Eagle Scout and did almost everything that I set my mind on doing. I am working as an archaeologist and can dig with the best of them. I would be happy to contribute any and all of my "secrets" to your book.
Good luck!
Bill
Good luck!
Bill
Re: Living with BPI Handbook
Henry, good luck with the book. I know your efforts will be appreciated by everyone. I'm fairly new to this injury, I just dread the upcoming winter season here in Canada as I haven't mastered the art of zippering up a jacket yet! I still can't tie a shoelace - but here's my biggest concern at the moment. I can put a dish/casserole/roaster into the oven when it's cold, but how the heck do you get it out when it's 375 degrees??? I think a basket type device that fits around the roaster with a single upward handle would work, or sliding it onto a large pizza pan with a handle? But I don't have that kind of strength yet to lift due to injured good hand. Any thoughts out there? Thanks people.
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jennyb
- Posts: 1183
- Joined: Fri Nov 02, 2001 5:24 pm
- Injury Description, Date, extent, surgical intervention etc: January 1980 Yamaha RD200 vs 16 wheeler truck, result, 1 totally paralysed right arm. I was 21, now 54. I had no surgery, I don't regret this. Decided to totally ignore limitations (easily done aged 21) adapted very quickly to one handed life, got married, had 3 kids, worked- the effect of the injury on my life (once the pain stopped being constant) was minimal and now, aged 54, I very rarely even think of it, unless I bash it or it gets cold, then I wish I'd had it amputated :) Except for a steering knob on my car, I have no adaptations to help with life, mainly because I honestly don't think of myself as disabled and the only thing I can't do is peel potatoes, which is definitely a good thing.
Re: Living with BPI Handbook
Hi Allison
I've been caught out by this more times than I can say, and it's still happening! Luckily now my kids are big enough to help but before they were I tried some drastic measures to get round it. I have stabbed a roast with the carving fork and lifted it out without the roasting dish, I have emptied a caserole into a serving bowl with a ladle without taking it out of the oven......as Bill says you have to be inventive but that's half the fun! I have to admit that I've dropped at least 2 roasts on the floor too..... :0( Don't know about Bill, but I don't own a single piece of adaptive equipment at home, this wasn't a conscious thing, i just worked out how to do stuff before anyone suggested a gadget for it-we just do it!
I've been caught out by this more times than I can say, and it's still happening! Luckily now my kids are big enough to help but before they were I tried some drastic measures to get round it. I have stabbed a roast with the carving fork and lifted it out without the roasting dish, I have emptied a caserole into a serving bowl with a ladle without taking it out of the oven......as Bill says you have to be inventive but that's half the fun! I have to admit that I've dropped at least 2 roasts on the floor too..... :0( Don't know about Bill, but I don't own a single piece of adaptive equipment at home, this wasn't a conscious thing, i just worked out how to do stuff before anyone suggested a gadget for it-we just do it!
Re: Living with BPI Handbook
Thanks to all for the support and the references. I will gratefully use these resources and will give full credit.
My plan is to see what comes in, organize it, and then petition for the areas that need more info.
Allison, zippers are doable but the larger the better and lube them to make them work easier. I can tie laces one handed, but prefer to use the spring loaded lace clips found on coats and kid's clothes. My local leather repair shop carries them in a variety of colours.
Oven pots are generally not a problem. I'm strong enough that I can hold on, but am still nervous about it.
As for the real old timer, I'll take it all and look forward to seeing what you have.
Henry
My plan is to see what comes in, organize it, and then petition for the areas that need more info.
Allison, zippers are doable but the larger the better and lube them to make them work easier. I can tie laces one handed, but prefer to use the spring loaded lace clips found on coats and kid's clothes. My local leather repair shop carries them in a variety of colours.
Oven pots are generally not a problem. I'm strong enough that I can hold on, but am still nervous about it.
As for the real old timer, I'll take it all and look forward to seeing what you have.
Henry
Re: Living with BPI Handbook
I am currently working on a gadget to help with zips. In the meantime, this is an idea:
use a freezer clip (like a clothespeg, but smaller and stronger) with a hole drilled in one side. Thread a piece of strong cord through the hole and tie it tight. Clamp the freezer clip to the bottom of the jacket next to the zip, and stand on the cord. You've then anchored one side of the jacket, and can tug upwards on the zip. Once done, take it off and store it in the jacket pocket.
These things are really cheap, so you can make up one for each jacket.
Hope this helps.
Jacko
use a freezer clip (like a clothespeg, but smaller and stronger) with a hole drilled in one side. Thread a piece of strong cord through the hole and tie it tight. Clamp the freezer clip to the bottom of the jacket next to the zip, and stand on the cord. You've then anchored one side of the jacket, and can tug upwards on the zip. Once done, take it off and store it in the jacket pocket.
These things are really cheap, so you can make up one for each jacket.
Hope this helps.
Jacko
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jennyb
- Posts: 1183
- Joined: Fri Nov 02, 2001 5:24 pm
- Injury Description, Date, extent, surgical intervention etc: January 1980 Yamaha RD200 vs 16 wheeler truck, result, 1 totally paralysed right arm. I was 21, now 54. I had no surgery, I don't regret this. Decided to totally ignore limitations (easily done aged 21) adapted very quickly to one handed life, got married, had 3 kids, worked- the effect of the injury on my life (once the pain stopped being constant) was minimal and now, aged 54, I very rarely even think of it, unless I bash it or it gets cold, then I wish I'd had it amputated :) Except for a steering knob on my car, I have no adaptations to help with life, mainly because I honestly don't think of myself as disabled and the only thing I can't do is peel potatoes, which is definitely a good thing.
Re: Living with BPI Handbook
Blimey Jacko, i'd never have thought of that......I can now actually hold the zip together with some fingers and pull the zip up with yet others, all on the one hand, don't know how I do it but it works. However, I can only do it in daylight and sober, so in other circumstances I just ask any person standing near me to do it. I find asking strangers to help actually helps my self esteem and also seems to make the person I asked happier too....anyone else found this?
Re: Living with BPI Handbook
Yeah, that's the way I've been doing up zips as well Jen, but one day old age will set in and my fingers won't be that nimble. Thought I'd work on the problem while I've still got some marbles.
