18 replies to this topic

[Suekay]

I am interested in hearing from other wheelies is it normal for our bodies to start to having more problems. Everything seems to be coming harder.
My legs are getting realy stiff and hard to stretch. I have pain in my arms and shoulders when transfering and at night. My bladder has shrunk [used to do sc but when I had to do a cathetor every hour.....] so I've had to get a spc. Spasms have increased. etc etc...

[E-DOG]

Reminds me of an old '58 Chevy I had a long time ago.

Time. Use. Abuse. They all take their toll.
In the end, we all putter to a slow grinding halt. Exhausted.

Shhhh..... listen close.
I do believe the fat lady's warming up.

E

[CrazyLucky]

E-DOG, on Dec 4 2009, 03:02 AM, said:

Reminds me of an old '58 Chevy I had a long time ago.

Time. Use. Abuse. They all take their toll.
In the end, we all putter to a slow grinding halt. Exhausted.

Shhhh..... listen close.
I do believe the fat lady's warming up.

E

Thank God there's an optimist around here...

[HiltonP]

I've been permanently in a chair now for 35 years, and yes, it is taking its toll.

If I cast my mind back 20 years I never had issues with pressure points, or stomach problems, or leg and body pain . . . but now they are part of my everyday life. In a way I guess it's just part of the aging process, but I think it is given more impetus by the lack of mobility.

I've looked after my body pretty well, never smoked, don't really drink much alcohol, and no junk food at all. I believe this has helped keep the proverbial wolf from the door to a large extent.

[Avocado Baby]

Thanks for that cheerful thought E-Dog!
I've been paraplegic for all of my 28 years and I've found the same thing, although alot of the aches and pains have improved with a postural support and better seating. My bladder definitely doesn't hold as much as it used to and I get the spasms too.

[Scribbler]

Suekay, on Dec 4 2009, 06:47 AM, said:

I am interested in hearing from other wheelies is it normal for our bodies to start to having more problems. Everything seems to be coming harder.
My legs are getting realy stiff and hard to stretch. I have pain in my arms and shoulders when transfering and at night. My bladder has shrunk [used to do sc but when I had to do a cathetor every hour.....] so I've had to get a spc. Spasms have increased. etc etc...

I've been C4/5 for over 50 years and never had a pressure sore. My bladder was like an AB's; I could pee when I wanted, using sheath and leg bag. Up to 15 years ago I was really quite fit, could push my chair outside and even down the road. I could drive a car, and went to Scotland a few times, so I am lucky.

I now have to use an electric chair. My body aches everywhere, which is a bummer when you have full sensation like I do. I've also had a SPC fitted, which doesn't work very well, as I get urethral leakage.

I'm now having problems holding the top of my body upright; (easy way to describe it) its from were a girls bra strap would be, upwards. The top of my body just falls forward when I'm really tired and I have a problem holding my head up.

Like Hilton, I've lived a healthy life, but you cant beat the ageing process. Your body aches more, your spine crumbles or gets very stiff. It doesn't matter how much physio I do, I cant stop any of it, especially my fingers, which have gradually curled into the palms of my hands.

All you need to know is this........... Ageing with SCI ain't for wimps!!

I've learnt to adapt otherwise you'll go mad; although some friends say I am.

Mike

[Suekay]

E-DOG, on Dec 4 2009, 08:02 AM, said:

Reminds me of an old '58 Chevy I had a long time ago.

Time. Use. Abuse. They all take their toll.
In the end, we all putter to a slow grinding halt. Exhausted.

Shhhh..... listen close.
I do believe the fat lady's warming up.

E

Hi E-DOG, There's a fact of life and that is the fat lady sings for everyone eventually. You know one thing I learnt in 1981 when I had my accident that you better make the most of what ever you are given in life because it can be oh so short. You see, the 3 other people in the car I was traveling in were killed [burnt alive]. And when you think of your old Chevy I hope its how I look back on my life WHAT A RIDE!

[Boggs52]

I have been a T-7 para since '88. I am now 57 and have most of the general aches and pains I expect. While I never intend to be a bummer, I am well aware that my life expectancy is shorter than that of a walkin' around 57 year old. When (not if) the day comes when i can no longer live alone or care for myself, I will check myself out, a decision I made years ago. And
I have always made sure I had the means to do so.

[Mac na Ceardadh]

I've been doing this paralyzed/wheelchair thing for a bit over twenty years now and, as was already said, aging with a disability is not for sissies. I was just retired from a career in the US Marines when I got hurt so was still quite fit on that momentous day. Now, twenty and a bit years on and banging on the door of being 60 years old, the spasms I had seem to be diminishing and my "Programs"still work; have had only two pressure sores and both those were very early on. Yeah, I hurt now more than I used to but that pain is still manageable without the use of heavyweight drugs.
But, I do get tired more easily than I used to and tend to slump to the left when that happens. My wife tells me to "stand attention" when I get slumpy. *L* Five years ago we moved to the UP of Michigan and winters here are keeping me indoors more that I like. The fact that we live in the most disability unfriendly town on the planet is also a factor with the lack of curb cuts and busted up sidewalks and busted up streets that all make riding a wheelchair an adventure. No wonder I hurt after a day "walking" around this town!

[Tetracyclone]

Boggs52, on Dec 20 2009, 12:22 AM, said:

I have been a T-7 para since '88. I am now 57 and have most of the general aches and pains I expect. While I never intend to be a bummer, I am well aware that my life expectancy is shorter than that of a walkin' around 57 year old. When (not if) the day comes when i can no longer live alone or care for myself, I will check myself out, a decision I made years ago. And
I have always made sure I had the means to do so.

Boggs- I've felt similarly for many years, since long before i was hurt. Nice to hear another say so out loud.

[Sean's Mom]

We have come a long way in the last eight months and have been feeling lucky to be where we are today. The above posts are extremely difficult for newly injured to read. The people here have amazing strength.

[Sky54]

Mac na Ceardadh, on Dec 20 2009, 01:50 PM, said:

I've been doing this paralyzed/wheelchair thing for a bit over twenty years now and, as was already said, aging with a disability is not for sissies. I was just retired from a career in the US Marines when I got hurt so was still quite fit on that momentous day. Now, twenty and a bit years on and banging on the door of being 60 years old, the spasms I had seem to be diminishing and my "Programs"still work; have had only two pressure sores and both those were very early on. Yeah, I hurt now more than I used to but that pain is still manageable without the use of heavyweight drugs.
But, I do get tired more easily than I used to and tend to slump to the left when that happens. My wife tells me to "stand attention" when I get slumpy. *L* Five years ago we moved to the UP of Michigan and winters here are keeping me indoors more that I like. The fact that we live in the most disability unfriendly town on the planet is also a factor with the lack of curb cuts and busted up sidewalks and busted up streets that all make riding a wheelchair an adventure. No wonder I hurt after a day "walking" around this town!

[Sky54]

Mac na Ceardadh, on Dec 20 2009, 01:50 PM, said:

I've been doing this paralyzed/wheelchair thing for a bit over twenty years now and, as was already said, aging with a disability is not for sissies. I was just retired from a career in the US Marines when I got hurt so was still quite fit on that momentous day. Now, twenty and a bit years on and banging on the door of being 60 years old, the spasms I had seem to be diminishing and my "Programs"still work; have had only two pressure sores and both those were very early on. Yeah, I hurt now more than I used to but that pain is still manageable without the use of heavyweight drugs.
But, I do get tired more easily than I used to and tend to slump to the left when that happens. My wife tells me to "stand attention" when I get slumpy. *L* Five years ago we moved to the UP of Michigan and winters here are keeping me indoors more that I like. The fact that we live in the most disability unfriendly town on the planet is also a factor with the lack of curb cuts and busted up sidewalks and busted up streets that all make riding a wheelchair an adventure. No wonder I hurt after a day "walking" around this town!

We live just outside of Detroit. The winter is killing us and we are thinking of moving to a better climate. Can't decide where that might be but doubt it will be the UP!

[axl from down under]

Here's a snap shot of my aging with SCI exeperience

Paraplegic = 25 yrs
Age=40
0-20 years in chair= healthy, fit, working fulltime, independent, driving, put own chair in car, independent transfers, push on any surface, sand, gravel and grass
21-25 years in chair= carpal tunnel syndrome, elblow tendontis, shoulder bursitis in both arms, skin problems from indwelling catheter-changed to SPC,
torn rotor cuff right shoulder, healthy weight, hard to maintain fitness, dependent alot more on assitance with household and social activities
driving distance limited, now use car hoist for chair, rely on slideboard for transfers
working 30 hrs per week- wonderful employer who has set up home based work environment and allows me to attend office once a week.

What have I learned and hindsight= If identified and advised earlier I would have not used my arms for overhead transfers, used a slideboard,would not have lifted my own chair in and out of car for 20 years and gotten a hoist from day one, would have not pushed my body too hard to prove that I could be as good as any ablebodied person when it came to activities and asked for help alot more often

For all you "oldies" out there, we will continue to tackle what ever speedbumps we come across in regards to aging with SCI and go down fighting!!

For all you "newbies" don't push your body too hard it's the only vessel you have, it needs to be looked after and if you can change the way you do things or take help when offered, DO IT, it may give you an extra 10 years of avoiding the inevitable.

Cheers everyone and take care

Tanya

[Zoo]

Damn I have alot to look forward too... Thankyou for all the info on what to do and what not to do...

[Scooby Gimp]

My long time wheelchair story

Bad A Mother F's only. I'm 50 years old and 29 years post T-4 SCI with a left brachial plexus stretch (My left arm and hand don't work to well). The majority of my life has been lived from a chair. I've never had an skin ulcer but after 15 years the pain intensified. At 44 I had lived 22 years as an AB and 22 year as a gimp. I was no longer an AB who had a motorcycle accident in 1981. I was a gimp who was able bodied the first 22 years of life. It is a new and excruciating normal. But all problems are the same size to their possessor, gimp or not. I played sports as a new gimp, which may have worn out my shoulders. But I believe in living in the moment so I would not just try to preserve my body for old age by not being active. That is my personal opinion because I do not believe quality of life is based on length. When you are young you can do more and have more endurance Of course, I had carpal tunnel surgery, on my good right wrist, six short years after my accident from playing tennis and pushing my chair--but it never recurred. Rehab has to be a way of life for me if i want to make it to 66--or three full 22 year lifetimes in my book. Stretch daily.

I was active for 28 years and BOOM. Intercostal Neuralgia put me on my back. i could not even sit--a curse for a wheelchair user. These deformity complications are things that are hard to foresee and prevent. Scoliosis, which accompanies an SCI often, finally curved my spine so far to the right it caused my ribs to pinch a nerve. Not being able to sit, because my upper body sagged onto my ribs, was a major bummer. Long term SCI is like cancer--its going to get you. I have experienced increasing neuropathic pain, increasing deformity, bones spurs all over, and a lot of good weed. Cannabis is my savior. I don't get high or abuse. I use marijuana responsibly for the relief it offers my spastiscity and tight muscles. I love the loose "spaghetti legs" it gives me. Puff. Puff what a relief it is.

But you have to understand how powerful the mind is if you want to roll this road very long. If you understand you are not your body, a little suffering--or a lot, is just life. Pain and pleasure are two sides of one coin.

Do what you have to do to prevent deformity. I lay on my belly every day to stretch my pelvic girdle because I've seen too many chair-shaped quads and paras who look like tables when they try to lay in a prone position. If you sit all day your pelvis will freeze in that position so be wary. Daily rehab must be your life if you have the eggs to see where this experience goes. We unique SCIs are a small percentage of the population and few ABs can understand. Live free, and when you can't stop. "If you can't make 70 easily, don't go," said Sam Clemens AKA Mark Twain on his 70th birthday. What do you consider easy? Life is a difficult fickle bitch for everyone. What has always given me the ability to face the next day is having made friends with death. I know I can go when I want but I'm a curious about tomorrow. But knowing you have some control over life, via the big end, has been empowering to me. I've been off the boards for almost a year, down and out but I'M BACK. I am perfectly healthy, except for pain. And E-Dog is again correct. Gallows humor, accepting death, and living one day at a time (like an alcoholic in a 12 step program) is the only way to beat this sentence. Pessimism can shine a light on reality. This sucks but the only choice is to stop sucking altogether.

Bottom line--the pain intensifies mentally and physically but what doesn't kill you immediately either 1) makes you stronger or 2) kills you slowly. "No one gets out alive," Jim Morrison.

Cheers

William (Scoob)

I feel better just trying to articulate this message. E-Dog and I need a smoke break now to make this all more tolerable so we will see you guys after we kill these hydro-buds. Then we'll be back to....What were we going to do E-man? A short-term memory impairment can be a blessing sometimes. I hate remembering how I shit everyday. Ever heard of digital hemorrhoids? Me neither, yet. Hey. Pass it or put that out. Dave isn't here.

Edited by Scooby Gimp, 06 February 2010 - 12:30 AM.

[Trinity]

Scooby Gimp, on Feb 6 2010, 12:09 AM, said:

But I believe in living in the moment so I would not just try to preserve my body for old age by not being active. That is my personal opinion because I do not believe quality of life is based on length.

I agree with this statement wholeheartedly give me quality over quantity every time.

Great post Scoob

[StillFingers]

Trinity, on Feb 5 2010, 04:35 PM, said:

Scooby Gimp, on Feb 6 2010, 12:09 AM, said:

But I believe in living in the moment so I would not just try to preserve my body for old age by not being active. That is my personal opinion because I do not believe quality of life is based on length.

I agree with this statement wholeheartedly give me quality over quantity every time.

Great post Scoob

Thirty two years rollin come May 7th, if you don't live now given this second chance, see with different eyes, feel/love with a different heart, get everything you can out of this MOFO...then you're not really living, you're just existing...how sad. Quality indeed. Opinion of an aging old .

More pain, stiffness, spasms, less bowel/bladder predictability, uncomfortable days/nights, less sleep, more skin care, joints that scream...yep, I'm getting older, nearing 53, three decades of kicking as much ass as is possible with a quadie body...what should I expect, I'm not that young 21 year old care-free, no-fear surfer any more.

Older, perhaps a bit wiser, I now enjoy a fine wine, a fine piece of chocolate, living life with a beautiful woman, even the sound of rain drops outside my window, and on occasion, well every opportunity I get, flirting with all the lovelies on this earth...live now, if you find someone beautiful, mysterious, attractive, speak up, let them know...

Edited by StillFingers, 06 February 2010 - 01:32 AM.

[Scooby Gimp]

Still Fingers understand the beauty of the infinite now. Life's Only Valued Experience.


Scoob