Glenn
On Sat, 19 Mar 2005 23:14:43 GMT, "jim chivers" <jimch...@mchsi.com>
wrote:
>Nothingin particular, I just wanted to hear about others experiences with
>phantom pain, the treatments involved, about prosthetic experiences and what
>limbs others have lost, how their recoverys is going, and shit like that you
>know
Hi Jim. Why don't we start by you telling us something about your
situation. Are you an amputee? What kind? How recent? I'm assuming
you're a fairly recent amputee. Do you have a prosthesis yet? How
are you adjusting to being an amputee? What is the most important
thing you want to know. Tell us so we know what subjects to relate
to. Then we can tell you our experiences. You might also want to
read back through some of the recent messages. We've recently had
discussions on getting dressed, getting fitted for a prosthesis,
driving cars, riding motocycles, etc. These discussions start by
someone either asking a specific question or relating something
personal regarding that subject.
--Penpoint
"Penpoint" <Penp...@hotmail.com> wrote in message
news:brup31dg7af58t44e...@4ax.com...
I don't think any of us would like to have had the option to choose
which body part to remove, they're all bad.
I've only met 1 or 2 Hip Disartics that were able to move around very
well with a prosthesis. Very ambulatory with crutches though. Of course
the hands were full of crutches and your stairs & winter environment
just combine to ratchet up the challenge you face.
I don't have much to add as you've pretty much summed up all the
associated problems with sudden lifestyle/mobility changes.
I doubt it would be a whole lot different in an urban area versus your
location.
Hang on to your job and let the angst fade away. The trick now is to
start working with what you have left and get over what's not.
As quiet as this board is, most of the regular contributors are pretty
busy with getting on with their lives. For the most part, the limb loss
is more of a nuisance that has not stopped the typical cycles of life's
experiences from happening too much differently than they probably would
have evolved before.
Check with your MD, PT, & prosthetist for information about local
support groups or programs nearby to contact. Do some online searches
for programs such as DSUSA.ORG for a variety of activities throughout
the country. Most will probably be youth focused or originated, but
there are adult activities out there, you just have to search them out.
I was driving around an area frequented heavily by the weekend pseudo
outlaw bikers 2 weeks ago. There were about 300 bikes in the area.
During the trip, I spotted a couple of sidecars driven by females and
the sidecar riders were males with either folded up wheelchairs or
crutches strapped on the back sticking up. I surmised incomplete paras.
As we passed the biker destination of choice, Cooks Corner, El Toro,
California, there were a bunch of folks dressed up in all the regalia
moving about with walkers, very slowly I might add. It struck me odd at
first as this is not where I'd expect to see a large number of disabled
folks to be or an activity for them to be participating. So much for
stereotyping eh?
Further down the road, I came up on a very grim scene. I missed it by
30 seconds. A female biker in front of me missed the curve and
broadsided a very large and stout oak tree. I believe she survived, but
while I was reporting this to the 911 folks, I had visions of a life
time of recovery and serious lifestyle/mobility challenges.
I'm not trying to make any point about bikes. Whether we're in our cars
or just walking down the street, we're all only an instant away from
undesirable trauma or a very dreaded medical diagnosis. It's living with
the results that tests our character and make up.
It's your choice.
>I've only met 1 or 2 Hip Disartics that were able to move around very
>well with a prosthesis.
I've met a couple who walk VERY WELL but with a cane. They lead very
normal lives and have families.
>As quiet as this board is, most of the regular contributors are pretty
>busy with getting on with their lives. For the most part, the limb loss
>is more of a nuisance that has not stopped the typical cycles of life's
>experiences from happening too much differently than they probably would
>have evolved before.
This is very well said. I check this forum a couple of times a day
along with rec.windsurfing, alt.hi-po.mopars, and sci.astro.amateur.
All of the amputees that I know lead quite normal lives.
>Check with your MD, PT, & prosthetist for information about local
>support groups or programs nearby to contact.
Just beware that your support group may or may not be suited to your
lifestyle.
>I'm not trying to make any point about bikes. Whether we're in our cars
>or just walking down the street, we're all only an instant away from
>undesirable trauma or a very dreaded medical diagnosis. It's living with
>the results that tests our character and make up.
It was a car for me. I got hit by a runaway flat bed trailer that
slammed into my car, tongue first.
I know several amputees who still ride their bikes but also a few who
quit riding because of the dangers. To each his own.
I do not have much to add about the phantom pains.Mine are relatively
minor. They hurt, they hit me almost every day, but I can manage with
no meds. My heart goes out to those who have the heavy burden of
constant pain. Although my pain is manageable, what pain I do get is
very severe, it just lasts for a couple of seconds and it's gone
almost before I can react to it. Somtimes it lasts longer but still
it's usually a matter of seconds.
Glenn
>the pain is draining and
>emotionally devastating.
If you keep swallowing pills for the pain, it'll get worse and your
general health will suffer further. Generally speaking, phantom pains
do not go away. You can spend hours if you like concentrating on the
pain and faffing about with rubbish such as mirror boxes and healing
crystals but I've found the best thing to do is to have a passion for
something, to be really interested in something, you keep busy and
you'll learn to ignore the pain. The sensations are still new to you
and all the more intense because of that. Give it a little more time,
dude. Things will get better.
There seems to be two main types of phantom pain - the constant
'buzzing' and pins and needles and then the sudden sharp stabbing
pains that can actually make you say 'ouch' out loud. The latter will
become less frequent but you'll probably never get rid of the former.
You just have to live with it until some genius figures out how to
stop the brain thinking it still has a limb where there isn't one. Can
you honestly say the pain is as bad while you are busy on your
crutches on your way to the shops? Or when you meet someone and are
interested in what they have to say? Or when you're caught up in some
deep thoughts about something? Right now, if I think about my missing
leg, the buzzing and pins and needles is almost overwhelmingly intense
but if I'm doing something, I hardly notice it.
What do you do all day? What do you do in the evening? What engrosses
you?
btw - best of luck with your C-leg fittings. Hope it goes well.
b
>On Sun, 20 Mar 2005 05:56:39 GMT, wrote:
>
>>the pain is draining and
>>emotionally devastating.
>
>...but I've found the best thing to do is to have a passion for
>something, to be really interested in something, you keep busy and
>you'll learn to ignore the pain.
In my case it's not that I ignore it but it actually goes away. It's
when I try to relax that they get the worst. Keeping my mind and body
occupied is the best thing. Of course you have to relax at some point.
> There seems to be two main types of phantom pain - the constant
>'buzzing' and pins and needles and then the sudden sharp stabbing
>pains that can actually make you say 'ouch' out loud. The latter will
>become less frequent but you'll probably never get rid of the former.
My experience exactly.
>You just have to live with it until some genius figures out how to
>stop the brain thinking it still has a limb where there isn't one. Can
>you honestly say the pain is as bad while you are busy on your
>crutches on your way to the shops? Or when you meet someone and are
>interested in what they have to say? Or when you're caught up in some
>deep thoughts about something? Right now, if I think about my missing
>leg, the buzzing and pins and needles is almost overwhelmingly intense
>but if I'm doing something, I hardly notice it.
Agreed!
Glenn
>On Sun, 20 Mar 2005 18:37:20 +0000, Bellatrix wrote:
>
>>On Sun, 20 Mar 2005 05:56:39 GMT, wrote:
>>
>>>the pain is draining and
>>>emotionally devastating.
>>
>>...but I've found the best thing to do is to have a passion for
>>something, to be really interested in something, you keep busy and
>>you'll learn to ignore the pain.
>
>In my case it's not that I ignore it but it actually goes away. It's
>when I try to relax that they get the worst. Keeping my mind and body
>occupied is the best thing. Of course you have to relax at some point.
My phantom pain pretty much comes and goes of its own accord. Doing
something, or not doing something, doesn't really have much bearing on it.
It's going to hurt the same whether I sit around and think about it or get
out and do something fun and/or useful. Being distracted is better!
That said, I have noticed that swelling in my stump will make the pain
worse. Wearing my prosthesis or a shrinker helps with that. Going on
crutches for a day with no stump support is comfortable, but it really
brings on the phantoms as the day goes on.
I have found that heat and massage help reduce my phantoms. I'm fortunate
enough to have a whirlpool spa, but anything from a heating pad to a nice
warm soak in your bathtub can do the trick.
To the original poster, remember that four months is still pretty early in
the recovery process. It takes a long time to fully heal a major
amputation. I'm coming up on three years myself, and things are just now
settling into a predictable pattern. It's a pain in the ass, no doubt about
that, but time *does* make things better.
-Scott
Yea I have those spikes too, they are off the chart, but usually for a split
second. I have noticed that the amytryptyline, reduces the frequency of the
spike. But they happen at night as well, and instantly stop sleep. I do not
have the bike anymore. it was repossesd by Harley Davidson, while I was in
a coma. My sister had sought power of attoney from a judge in Davenport, Ia.
and upon being granted it, she called them and told them to come get it.
Thank you for your response, I am not adjusting well to being different now,
and the constant paindrains me.
Jim
"Glenn Woodell" <letsrig@!!cox!!.net> wrote in message
news:hohr31hjerb1ue6he...@4ax.com...
>
> I live in a small town in northern Iowa, and it's 8 steps down into my
>apartment. I can manage the trip ok on crutches, but I don't have anyway to
>get groceries down here, or thrash out, or check my mail. Hospice or
>anything like that is not available here, this has turned into a real
>nightmare. I have agood job, and have been employed there fro 2 decades, and
>I can't just quit and move to the big city, I now have limitations, few
>physical skills, and what a mess this has turned into. No Family, few
>friends, none close, by the way, did anybody see who hit me ? No I wasn't
>drunk, no I'm not drunk now, I might try it though, does it help?
> The pain is really limiting my ability to take care of myself, I don't
>know what to do
Jim, others on the board have responded regarding phantom pain and I
agree that the only way to deal with it is to get your mind on
something else. Not always the easiest thing to do when you're trying
to fall asleep at night!
Because your family and friends are not local, you need to develop a
support system for your living needs. And this may mean paying for
some help. A couple of ideas: Get someone to come in for a few hours
once a week to help with cleaning your apartment, laundry, changing
the sheets, and other things that you can't manage. Get a teenager
or retired person to stop in on a regular basis to get your mail,
dispose of the trash, and accompany you with grocery shopping. Check
the local high school or church for possible leads, or put an ad in
the local newspaper or on a public bulletin board in town, in the
library. Or ask someone where you work if they know of a person who
can help you and earn a little money.
The accident and amputation is probably one of the most traumatic
events in your life. It happened recently and you're dealing with
lots of changes, but you can't let this be the only thing that
consumes you. If you don't have some important interests in your life
now, you've got to develop some. You've got to get involved in
something outside of your problems -- politics, community
organizations, church, a hobby, a side business, night classes,
anything. When you're dealing with people, certainly acknowledge your
amputation and your problems, but then turn the conversation to
something else. Try humor, put others at ease with your leg, but
don't dwell on it.
It's going to get better.
--Penpoint
Penpoint wrote:
> On Sun, 20 Mar 2005 05:56:39 GMT, "jim chivers" <jimch...@mchsi.com>
> wrote:
cut for brevity;
>
>
> The accident and amputation is probably one of the most traumatic
> events in your life. It happened recently and you're dealing with
> lots of changes, but you can't let this be the only thing that
> consumes you. If you don't have some important interests in your life
> now, you've got to develop some. You've got to get involved in
> something outside of your problems -- politics, community
> organizations, church, a hobby, a side business, night classes,
> anything. When you're dealing with people, certainly acknowledge your
> amputation and your problems, but then turn the conversation to
> something else. Try humor, put others at ease with your leg, but
> don't dwell on it.
>
> It's going to get better.
>
> --Penpoint
>
It's tough dealing with change, but when you don't have a choice, you
just have to make the best of it.
PenPoint, Gary, & Glen have all made good and strong points regarding
the pain and varying degrees of frequency & intensity.
As PenPoint stated about putting others at ease has to start with you
first. I'm pleased to see your tone has settled down to more realistic
level.
As for support groups and activities, there are lots of options and as
Glen noted, keep your eyes wide open so you do not develop expectations
that will not be realized. We wouldn't want to hear about you being
absconded by a group like that one in Oregon a few years ago headed by
the Bagwan ShreeWasneesh. He liked every body. Where was that Glen,
Antelope, OR?
I personally ws never around other amputees until I started skiing
again, 7 years after my limb loss. From that experience and all the
other times I've been around amputee groups, the one thing you will
always see is the humor and what you won't is a bunch of folks
commiserating about their lot. You will also see the wild eyed amazement
in everyone's eyes when they first come in. We're all unique, just like
everyone else, right?
Trough these interactions or web discussions you will discover some of
the lessons we've learned about dealing with odd situations, stairs,
ice, prosthetic failure at inopportune moments, and other aspects of our
daily lives.
The pain is very much individual and has been described well already.
Time is the best healer, as is refocused energy and mental distraction.
The pain may come & go, but as you move on, it seems less frequent and
usually less intense. There will be those odd & occasional moments
though where you'll go WTF!
I've been watching this group for years and contributed a very long time
ago. The spam stuff chased me away from posting until I created an
account that manages it for me.
Of all the forums and web sites with this kind of title, this specific
one is clean, spam free, and the folks are always dead on with their
feedback and sincerity.
When folks like yourself reach out, these guys are there.
You may not have chosen to be in this unique & select group, do know
that you are in good company. I was going to say there aren't any dues,
but I forgot we've already contributed.
You didn't say what field of engineering you were in, but if it as I
suspect, it shouldn't be too difficult to finally get around to some
aspect of it you've been putting off for a moment when you truly had the
time to devote to it.
Sorry about the bike. I was asking to see if it was in a repairable
condition. It always surprises me how the body can rebound, but cars &
bikes don't fair so well.
MrBill
>Your absolutely right Glenn, the buzzing pain is constant, but is forgotten
>during periods of intense occupancy.
>I cannot watch TV anymore, surfing the net or reading mail is more relaxing,
>because it takes my mind of of the leg that got, let's say pulvarized by a
>ford pick-up.
Oh yeah? Mine got ripped off and laid next to me by a trailer hitch.
Just kidding. Wel,l not really. Just made me think of two kids
standing around comparing scars. :)
Glenn
>A couple of ideas: Get someone to come in for a few hours
>once a week to help with cleaning your apartment, laundry, changing
>the sheets, and other things that you can't manage. Get a teenager
>or retired person to stop in on a regular basis to get your mail,
>dispose of the trash, and accompany you with grocery shopping. Check
>the local high school or church for possible leads, or put an ad in
>the local newspaper or on a public bulletin board in town, in the
>library. Or ask someone where you work if they know of a person who
>can help you and earn a little money.
Good ideas. Made me think that the Girl Scouts or Boy Scouts might be
a good organization to approach since they often encourage such
community service.
Glenn
>As for support groups and activities, there are lots of options and as
>Glen noted, keep your eyes wide open so you do not develop expectations
>that will not be realized.
Or even the opposite. Get into a group that wants to treat you like a
cripple and gets you to thinking that you are. You don't need to be a
superman but don't let anyone else bring you down deeper than you
already bring yourself on your own.
> We wouldn't want to hear about you being
>absconded by a group like that one in Oregon a few years ago headed by
>the Bagwan ShreeWasneesh. He liked every body. Where was that Glen,
>Antelope, OR?
I must have missed that one.
>Trough these interactions or web discussions you will discover some of
>the lessons we've learned about dealing with odd situations, stairs,
>ice, prosthetic failure at inopportune moments, and other aspects of our
>daily lives.
Like the time my knee pin broke as I was walking down the mall. My
knee hyperextended and I know it looked painful. I didn't fall but I
know I must have looked strange. I managed to hobble into a shoe store
and found a seat and started to think about how to manage the best
situation. I ended up getting a hex wrench and sliding the pin just
enough that it would work, allowing me to get home to my spare parts.
That was a long time ago with one of my early legs. Mine has a pretty
sturdy setup now.
>The pain is very much individual and has been described well already.
>Time is the best healer, as is refocused energy and mental distraction.
>The pain may come & go, but as you move on, it seems less frequent and
>usually less intense. There will be those odd & occasional moments
>though where you'll go WTF!
Yep. I have those still with absolutely no explanation.
>Of all the forums and web sites with this kind of title, this specific
>one is clean, spam free, and the folks are always dead on with their
>feedback and sincerity.
I agree fully. Here people lead normal lives. They don't run marathons
and push their sponsors' products.
>You may not have chosen to be in this unique & select group, do know
>that you are in good company. I was going to say there aren't any dues,
>but I forgot we've already contributed.
Many times over. Personally I get a lot of satisfaction by being able
to share my experiences. I surely hope someone gets something out of
the drivel that I type here.
Glenn
> Great feed back and suggestions, thank you all kindly, Mr. Bill,
>Penpoint, Glenn, and Scott. The questions. the bike faired better than I
>did, $2500 damage, and your right, I've got a slight handicap now, but I'm
>not a cripple, I work inthe hydraulic crane industry.. I'll figure out how
>to get some help. temp of course, I'll figure it out, that's what I do I
>figure out how to do things.
That's the right attitude. I didn't start windsurfing until 11 years
after my accident. All I wanted to do was to be able to stand on the
board and drift around a bit. Now. I'm jumping, doing back loops, and
sailing 8 foot breakers in hurricanes. I never dreamed I'd be doing
this well.
I've also done snowboarding, been roller skating for two years, and
biking now.
> The pain needs to settle down though, to a manageable level, right now
>it's indecent as hell. And I will and do generally stay occupied anyway,
>that's what the motorcycle was for. Soon as I get a prosthetic and make some
>changes, I'll have a motorcycle again. there's a farmer and an Insurance
>company that's going to be paying for it.
You got the right attitide now!
> No disrespect intended to farmers, they are hard working, innovative,
>faithful and honest people, key word being people, and that means they make
>mistakes too. I'm still mad as hell at one of them, forgiveness and
>understanding is a long ways down the road, and I am a mean, vindictive
>bastard.
Understand completely. In my case some turd didn't know how to connect
a trailer properly. This was not the first time he had lost his
trailer. The first time it had just ended up in a field.
> The hip disarticulation, may be the controlling issue here,
>and I may be unable to walk again sufficiently to carry groceries down a
>flight of stairs.
Don't start counting your chickens yet. I figured I'd never be able to
carry a child if I ever had one. Well, she was born in 1997 and I
cried as I carried her from the delivery room to the nursery because I
realized that I thought I'd have to get someone else to do that for
me.
Same thing when teaching her to ride a bicycle except that I didn't
cry this time. Just almost. :)
> But I was told it would be 12 to 18 months before I
>returned to work. I went to work last week, that's just over 6 months since
>the accident, so I believe my determination is still functioning ok...
That is wonderful. I did the same thing. Drove a car again the night
after I got out of the hospital and went roller skating on crutches.
(I had been roller skating the night I had my accident.)
I went back to school a week later when clases started, carrying my
books in a back pack and walking with crustches because my temp was
uncomfortable.
>couple
>other things are not working right, but there are ways around them, like
>throwing the bag of groceries down the stairs, or cooking in the parking
>lot.
That's the spirit! I like this guy.
> I would like to hear about some experiences with prosthetic devices,
>durability and cost.
Poor and expensive. Actually what I have now is pretty durable but
I've been afraid of the C-Leg for durability reasons.
> Experiences with insurance company's and pre-existing
>conditions regarding prosthetics, if I change jobs, in the future.
Hasn't been a problem for me at all.
>I notice
>some price tags of 23 to 56 thousand bucks, so I need to know how these
>expenses are covered, and what agencies or government programs may or may
>not be available.
My insurance has been paying 90%.
> I thought driving with my left foot, would be uncomfortable, but with no
>right leg inthe way, it aint that bad. Does anyone ever move the throttle
>pedal to the other side of the cabin, or would that screw you up, in a pinch
>?
There was a recent thread on just this. Continue with the left foot.
Been doing it for 22 years and dependingon the vehicle, I use my
prosthesis. Tried assistive pedal but hated the flexing in it besides
rental cars don't have them and in a drag car I would have bent quite
a few. :)
Glenn
>Girl Scouts ? Hell next thing you know you'll have some silly ass legal
>issue going, and be pasted all over the tv news
Just don't eat the Brownies and you'll be alright. Sorry, couldn't
resist that one.
Just tell them you are not a threat because anyone could get away from
you by just walking fast. Works for me. :)
Glenn
those are just the kinds of things I need to hear about. it's not like you
can just go see a neighbor that has one. People with like situations are
scattered all around, and it's a big country. Clark and Associates in
Waterloo, Ia. is doing my prosthetic, and I understand they are a cutting
edge company, so hopefully determination and desperation will carry me
forward to the hoped for goal, of adequate mobility. Funny word to suddenly
start using, Mobility, I'd of never thought I'd be using that word
"Glenn Woodell" <letsrig@!!cox!!.net> wrote in message
news:2ncs31h9c7hgcqnrd...@4ax.com...
That's funny, I don't care who you are!! lol :)
> Just tell them you are not a threat because anyone could get away from
> you by just walking fast. Works for me. :)
>
> Glenn
I was going to respond but, everybody is doing a fine job (of stealing
all the good answers.. :) :) ) of giving advice.
Jack
>Glenn Woodell wrote:
>> On Mon, 21 Mar 2005 02:06:53 GMT, "jim chivers" <jimch...@mchsi.com>
>> wrote:
>>
>>
>>>Girl Scouts ? Hell next thing you know you'll have some silly ass legal
>>>issue going, and be pasted all over the tv news
>>
>>
>> Just don't eat the Brownies and you'll be alright. Sorry, couldn't
>> resist that one.
>>
>
>That's funny, I don't care who you are!! lol :)
My daughter is a Brownie so I can tell that one.
Glenn
Northern Iowa? I'm from NW Iowa originally. Got moved out west to
enjoy WA now. Hope you get to feeling better.
Dug~
Mine got lopped off while riding my RoadStar to work. See if I drive
the speed limit ever again!! Been 6 months since my accident from a
driver gunning it trying to get into traffic and not seeing me.
Dug~
P.S. I'm new to this news group and want to thank the moderator for
having somewhere to discuss what we all are looking for to know. Having
a limb amputated is a life changing experience. You can either learn
from it and people like that are on here about what works for them or
you can shut yourself off from the rest of the world and fret over it.
I find this group quite rewarding at the moment. I'll have other
questions down the road. I'm looking at getting a hydraulic knee soon.
Any comments on that?