9 replies to this topic

[harlton]

Hi Guys,
This is to Introduce myself and pose a question I am having a problem with and To see if any others can fill me in on what I might expect.
My name is Ian, Harlton on the forums, I was injuryed in an accident back in 1990. I have been dealing with the problems ever since. Luckily for me I have always been into working out and fitness, so when I was injured I had a strong upper body to help my transition.
I had 2 surgeries following the accident, 1st to repair the damage and the 2nd to fix the 1st. The 2nd surgery consisted of 4hrs of cutting hard adhesive scar tissue off my cord, plus grinding away lots of bone to clearance it.
Structurally my spine was never fixed and floats, with an audible clunk, before I almost pass out. I was told the opp went well, but not to expect the use of my left leg and my right would be very weak. To cut a long story short, 2yrs in a chair, several on crutches, followed by a period on fairly normal ability, but never without lots of meds to cope with pain and spasm. Meds were mainly Gabapentin and diluadid, plus diazapam and temazapam.
I brought up my two sons as a single parent, my wife left when the boys were little, and I was just in and out of the chair. A bad period, my most challenging to date, fatigue levels were very high and I live alone in a small town with no real friends or family around. I managed and slowly my fitness levels returned and things got better. I found it easier to deal with the day to day we have all dealt with.
The pain has never eased, but when the gabapentin was added, the diluadid amounts came down and coping with and bringing up my two boys easier.
We struggled to live a normal life on my disability pension once it came thru, which was lucky as all of my savings were exhausted. Still I count myself very lucky, my boys have done well, one having just finished uni and the other nearly done. One is a finacial analysist, the other will be an engineer, as I once was.
I decided to try and start a small business at my life long passion, motorcyces. I purchased some stock and equipment, sponsored a racer, who I tuned for and all was finally going well. The racer new of my disability and the extra time I needed, we were very sucessfull at first, then his demands became unreasonable and I had a heart attack. The business is now in tatters as well as my health and finaces.
The problem was by ignoring my body, my imflammation levels went thru the roof, plus the stress, and the heart problems just the tip of the iceberg.
Spasm and weakness has increased in my legs, plus my arms and shoulders and the 8 other disc's now involved. Bedrest plus anti-flammatories, the increased pain and fatigue, The agony was incredible.
I lost my fittness and struggle today, the weakness has persisted, and I just had a stress test for my heart by injection and they had to stop it. My legs were totalled and the new bus stop moved to my chest.
So that's my life, I still manage to walk but really only around the house, I feel the old pain and deadness returning, my knee and ankle jerks have been missing since the accident. My cardiovascular system can not have fell off the map in a year, as now I'm winded very easily.
I've introduced my self now, and sadly hope there any others out there, who have had similar experiences. I get blank looks from my Doc's, It would really help if someone could give me some idea of what I might expect good or bad. I would like some information on which to base my decisions.
I have lost so much money, because I've tried not sat back and done nothing, only to get that well we knew this was going to happen look or lecture. I cannot afford anymore failed medical experiences, due to lack of imformation.
I am now 56 and if I live long enough, I will need some money soon, my income replacement was half of my salary, I lost my benifits and it ends at 65. My health care costs are increasing rapidly. I wish I had not done into debt for the business, but I wish I could make it work more.
It's great someone started this forum and there is somewhere I can even pose this question, so thank you very much, I wish I had found you sooner.

Regards Ian

[greybeard]

Hi Ian. Welcome to the forum. I have the same levels as you; not as severe yet, but things seem to be inexorably heading that way.

The majority opinion here seems to be that the older you get, the more our conditions are likely to deteriorate. The best we can hope for is that we will still be able to function at a reasonable level with the aid of medication and/or surgery.

However, the good folks here can make life better with their advice, support and humour. Just ask specific questions and you are bound to get a variety of helpful answers.

[wheeliebear75]

Well aren't we "3 peas in a pod"?

I was also hurt in 1990.....I'd say the 1st 5yrs were hardest mentally, but the last 5 yrs have been the most difficult pain wise....wish I could say otherwise.

[davjed]

Well, the saying goes, "getting old is hell" but with a disability to start with "getting old must be hell south". I was blessed to have done well up to 60, but between 60 and 70 it has really caught up with me. We are all different and unique physically and emotionally. Constant overuse and wear and tear finally catch up with anyone. I just have to take it one day at a time now. My pain levels are higher, my strength and energy are much lower. It's a push to get into and out of bed now. Yet, things seem to fall into place if I can just let everything go except for the here and now. Do what you can to preserve and increase what you have physically and financially to take care of yourself. Then just let tomorrow come as it will knowing you will cope with whatever it brings......

[nomis]

Well, I'm nearing my mid60s with more than 40yrs in the chair. I've got a few badges from age, such as osteoarthritis in the hands and I'm leaning a bit to the right. But overall, I'm still reasonably sound.

I got rid of my car a few years ago which means I now have to do lots more wheeling for shopping, visiting, etc. I'm fitter than I've been for many years and better for it. I make a point of plenty of light exercise like shopping and gardening. I'm better if I keep moving.

Of course, I don't know what tomorrow will bring and whatever it is I'll just have to accept and go with it. That seems a growing reality with age.

If I dwell on it I can quickly come up with plenty of frightening scenarios of what the future may hold for me but I deliberately try not to do that, preferring to focus on the immediate now...which is fine (even if my tummy is telling me I've just eaten too much).

We each have to play the hand we've been dealt. But you can help your odds by living healthily through moderate exercise and good food. It'll still be the same old, battered body but better maintained to keep running.

[harlton]

wheeliebear75, on 28 October 2011 - 11:11 PM, said:

Well aren't we "3 peas in a pod"?

I was also hurt in 1990.....I'd say the 1st 5yrs were hardest mentally, but the last 5 yrs have been the most difficult pain wise....wish I could say otherwise.

Thanks for the reply, I'm new to forums in general, so I am still figuring it out. I agree with your statement fully.

Regards Ian

Edited by harlton, 31 October 2011 - 05:27 PM.

[harlton]

greybeard, on 28 October 2011 - 10:30 PM, said:

Hi Ian. Welcome to the forum. I have the same levels as you; not as severe yet, but things seem to be inexorably heading that way.

The majority opinion here seems to be that the older you get, the more our conditions are likely to deteriorate. The best we can hope for is that we will still be able to function at a reasonable level with the aid of medication and/or surgery.

However, the good folks here can make life better with their advice, support and humour. Just ask specific questions and you are bound to get a variety of helpful answers.

Hi, many thanks for the response, I am finding the same, the last 2.5 yrs for me with increasing pain and stiffness, they have upped my meds etc. I do not want to take more really, as it's affecting my memory more. Plus I had plans, that's what I am finding most frustrating. I've dealt with this once, I'm angry at having to deal with it again, prematurely from how I see it. So I'm trying to get my mind around what's to come, and it seems to be coming fast.


Best regards Ian

[harlton]

nomis, on 30 October 2011 - 10:26 AM, said:

Well, I'm nearing my mid60s with more than 40yrs in the chair. I've got a few badges from age, such as osteoarthritis in the hands and I'm leaning a bit to the right. But overall, I'm still reasonably sound.

I got rid of my car a few years ago which means I now have to do lots more wheeling for shopping, visiting, etc. I'm fitter than I've been for many years and better for it. I make a point of plenty of light exercise like shopping and gardening. I'm better if I keep moving.

Of course, I don't know what tomorrow will bring and whatever it is I'll just have to accept and go with it. That seems a growing reality with age.

If I dwell on it I can quickly come up with plenty of frightening scenarios of what the future may hold for me but I deliberately try not to do that, preferring to focus on the immediate now...which is fine (even if my tummy is telling me I've just eaten too much).

We each have to play the hand we've been dealt. But you can help your odds by living healthily through moderate exercise and good food. It'll still be the same old, battered body but better maintained to keep running.

Hi, Thanks for getting back to me. It a real help for me to hear from others especially with more experience. I have found this a very frustrating process, if it isn't bad enough, the false optimism I get, often from the medical profession, gets me into trouble. I understand they mean well, and I have no clue what I would say in thier shoes.
At this point accurate input is what I need. Thanks.

Best regards Ian

[harlton]

davjed, on 29 October 2011 - 12:47 AM, said:

Well, the saying goes, "getting old is hell" but with a disability to start with "getting old must be hell south". I was blessed to have done well up to 60, but between 60 and 70 it has really caught up with me. We are all different and unique physically and emotionally. Constant overuse and wear and tear finally catch up with anyone. I just have to take it one day at a time now. My pain levels are higher, my strength and energy are much lower. It's a push to get into and out of bed now. Yet, things seem to fall into place if I can just let everything go except for the here and now. Do what you can to preserve and increase what you have physically and financially to take care of yourself. Then just let tomorrow come as it will knowing you will cope with whatever it brings......

Hi, Thanks for responding to my plea, I'm heading for towards 60, 56 very soon, and I thought I could make it there myself. My Dr's have actually been telling me for a long time it gets better with age, as we would be ahead of the curve, and therefore already adjusted to the changes. So I could be like a stud in the geriactric's home. Oh glee I say a stud again no less.
Problem being, what do I believe when I have no stick to measure with. This forum is great, I have found so much out, many thanks to all you guys.

Best regards Ian

[gimpygarygirl]

My husband is a 24 year paraplegic, T-12 complete and we are facing some of the same things. We have been married 13 going on 14 years. He was a para when I married him. He recently had staff infection and a rod in his leg go bad from a surgery in May 11'. This last time in the hospital was almost 3 months. It has been hard on him especially getting up after being down that long of time. His employer has been understanding, and he is anxious to get back to work. But his legs are busting open and now dealing with new issues. It is tough on him and myself. Thank goodness we are doing ok, financially at this time. But it doesn't take too many setbacks to put you in a spiral downward.

I wandered if there is some advice for us regarding his pressure sore/skin. He is eating PROTEIN, PROTEIN, PROTEIN. Watching what he eats, so not to gain weight.