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Health implications of SCI in old age

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  • #16
    Originally posted by Mize View Post
    This thread is both insightful and a bit ominous for a new SCI like me. I'll tell the OP that the adage that love conquers all is true. That said, I'm curious if someone here in Care Cure has compiled a list of recommendations for staving off the most common and disabling problems of living with an SCI.
    Eat healthy - this is a convoluted area without great expert agreement but at the least: control the calories, eat plenty of vegetables and some fruit, eat more protein than the USDA recommends (say 100g per day), drink mostly water
    Reduce stress - a good woman is ideal here (EDIT - really for this whole list, in fact)
    Exercise some (al)most every day - include strength as well as cardio type workouts
    Get vaccinated and screened as recommended
    Pay close attention to your skin and bladder management
    Use assistive devices whenever they improve quality of life - power chairs and sliding boards aren't for the 'weak'
    Manage alcohol and drug use appropriately
    Get enough sleep - 7 or 8 hours per night for most of us
    Keep your mind active - reading, puzzles, hobbies
    Do something with your time that interests and fulfills you
    Avoid asshats and nimrods
    Foster supportive friends and family

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    • #17
      [QUOTE=faji_tama;1798089]I would like to echo the sentiments of Mize here, and would also love to see a list of recommendations for best practices and things we can do to (reasonably) prevent a degraded quality of life later down the road. I'd heard the shoulder thing before, and never paid it much attention, but like Mize noticed, it sounds like many folks have switched BACK to slideboards later on, which is something I haven't used in a good 20-some years. The shoulders guide in SCIfor55yrs's signature was super informative, and I'd love to see more resources on this and other matters: i.e. should I switch back to slideboards?, should I try to reduce the number of times I self-cath in favor of manually voiding, even if it might not be as complete?, etc etc.

      I did an internet search "living well with spinal cord injury." Actually there is quite a body of literature that is available. The information is not neatly compiled into a one-stop, singular list, but there are some good resources and ideas for living healthy and well with a spinal cord injury.

      Anything you can do to preserve shoulder mobility and health will serve you well as you age. Reducing the number of times you transfer without a slideboard per day may help preserve your shoulders. It couldn't hurt to stay in practice with the slideboard technique.

      The whole increase risk of bladder cancer due to catheterizing is news to me, and like Mize, rather concerning. From the Googling a reading I did yesterday around the topic, it sounds like that type of cancer (bladder and urinary tract) are pretty rare to begin with, so even with an increased risk for SCI folks, the risk is still low compared to other forms. There seemed to be a bit of disagreement over the actual numbers/percentages of likelihood, however. Knowing that it's a risk though, I'm curious what steps can be taken to reduce it even more: what if, say, I went from my current 5x a day ISC down to 3x, and manually voided the other two times? (and so on)

      It is highly unlikely that reducing the number of times you self cath per day will have a impact of any degree on your risk of bladder cancer over your life time. And there are immediate risks associated with "manual voiding" that make that practice unacceptable at spinal cord rehabilitation centers. Supra pubic and indwelling urethral catheters are the bladder management techniques most associated with bladder cancer risk, along with smoking, and frequent and recurring urinary tract infections that increase bladder irritation and inflammation.

      Longer as in the amount of time you've spent in the chair in a given day, or longer in the sense of over the course of your life? Pressure sores were definitely an issue for me when I was younger, but ever since I switched to a Roho cushion, things have been dandy. But, are you saying that as I age, it could become an issue again? I don't think "Lynnifer" was referring to how many hours a day you spend in a chair. She most likely was referring to the number of years of being spinal cord injured and the probability that you will get a pressure sore. Posture and skin changes as we age making us more susceptible to pressure problems.

      I only recently heard about our susceptibility for pneumonia too! My PCP actually brought it up a few visits back and suggested I get vaccinated every so often to prevent against the preventable strains. Thoughts on this?[QUOTE] Here are some guidelines for pneumonia vaccination (Web MD):
      "When Should Adults Get a Pneumococcal Vaccine?


      The pneumococcal vaccine can be given at any time of the year.
      ***The pneumococcal polysaccharide vaccine (PPSV23) is recommended for the following adults:

      Adults ages 19 to 64 with certain medical conditions (for example, certain kidney diseases, cigarette smoking, asthma, chronic heart or lung disease, asplenia, and conditions that cause weakening of the immune system) should receive one or two doses of PPSV23 given five years apart.
      ***The pneumococcal conjugate vaccine (PCV13) is recommended for the following adults:
      Adults ages 19 and older with asplenia, sickle cell disease, cerebrospinal fluid leaks, cochlear implants, or conditions that cause weakening of the immune system.
      It's now recommended that adults ages 65 and older get both vaccines.

      Adults age 65 or older who are need to get both should get the PCV13 vaccine first, followed by PPSV23 6 to 12 months later. If an adult was already vaccinated with PPSV23, he or she should receive the PCV13 vaccine a year or more later."

      I'm sure physicians can make a case to insurance companies and Medicare to administer these vaccinations to someone with a spinal cord injury, especially in higher injuries where there can be serious respiratory complications.


      All the best,
      GJ
      Last edited by gjnl; 04-27-2016, 05:15 PM.

      Comment


      • #18
        Originally posted by SCIfor55yrs. View Post
        Faji_tama, you can piece together all the possible harmful things that can happen to people with SCIs, as JamesMcM has a tendency to do, and paint a bleak picture of the future. But the reality is that that picture does not represent any given SCI?s future. There are genetic, environmental and other factors that come into play throughout our life trajectory. For instance, I can say with confidence that love and marriage have contributed substantially to my longevity and quality of life. I have known and worked with over a thousand SCIs during my lifetime, and know that stories similar to mine are not a rarity. I have two C-5 friends whose injuries date back to the early 1960s who have fared as well as I both career and marriage wise. Others have fared poorly. The fact is that none of us come into life with a warranty.
        You have a good many sci years under your belt. How well you have fared up to this point is the best predictor of how you will fare from here forward. I reached my functional peak when I was in my forties. I would likely be in better shape if I had paced myself better. Life is a marathon, not a sprint. Read the shoulders manual linked at the bottom of my post. One other observation I made was that the further up the career ladder you go, the easier work life gets from the standpoint of physical demands. When perks start piling up like a car and driver available for use, aides standing by, first class travel, etc. work life is easy.

        How do your family and your girl friend?s father look at your situation? My family and my father-in-law were very supportive. My FIL only wanted his daughter to be happy. In sum, losing a mother-in-law was not that bad. I wish you the best.
        No the reality is not, I'm not just painting a bleak picture I'm explaining the other side that you're trying to pretend it isn't real,as it's not pleasant. I got a 95-year-old great-grandmother who is probably in better shape than you, in certain ways she's better shape than me, our skin is probably as fragile same as our bones, she goes to the bathroom herself no suppositories are catheters needed, she doesn't have chronic infections or a neurogenic bladder! fact is there will be no SCIs in that good of shape at her age. She got there but never drinking, watching her water, eating properly her body isn't riddled with disease and damage,and most importantly she walks on a daily basis keeps your body moving as much as possible which is extremely important in the elderly! Did she get lucky, sorta she's got a few friends she grew up with, but let's not forget that she grew up in a time where lead poisoning was abundant, they were exposed to much worse carcinogenic's that we are today. You speak as if because you know of 10 peoplethat are relatively healthy after a long run with SCI that that makes it fact, small numbers. The actual statisticsbased on large numbers healthcare checks are there and just like SCI-nurse and myself said The full implications of ageing with spinal cord injury is not not yet determined; it probably never will be; there's too many factors as I explained in my last post, there's no conclusive evidence on long-term implications of dysreflexia for god sake's one simple aspect of SCI! Here's a fact the average 60-year-old will not have osteoporosis, muscle atrophy, incontinence, reliance on catheters, serious joint damage, contractors, past history of bone fractures, damage to the central nervous system, autonomic dysreflexia, blood pressure issues, weak skin with history of bedsores, minor/mild/severe scoliosis,history of chronic infections etc. etc. An SCI who has been in the wheelchair for 25+ years at the age of 60+ will have all of that! You have all of that unfortunately, I'm 24 4 years post and I have all of that,there are very few minor very low SCIs that are blessed with a very flaccid bladder among other things that May not be riddled with all that! Your average able-bodied 60-year-old would maybe have two or three of those probably too much lesser degree, in all likelihood the average person does not have any of those conditions I have a huge family, a majority are 60+ and my one uncle had knee surgery that's it other than that they all still snowmobile in the winter, hunt and farm;I'll point this out there's no none of them make the healthiest choices ever in their life.I have lost two aunts to cancer but that disease he get any of us... it's a simple as this if you were to take 500 people age 60 and up, group 1 250 able-bodied, and group 2 250 spinal cord injuries all being in a chair for longer than 20 years (meaning they aged with the disability) you then take these 500 people do full medical checks, including comparing medical history,New bone density scan's, MRIs of the joints, range of motion test, biopsies, CAT scans, ultrasounds,blood tests, skin examination etc. It's self-explanatory that the results would be staggeringly One sided, they would be completely daunting to new injuries! Both groups would have illnesses, abnormalities etc. but the ratio in Group 2 would be un comparable, not one patient in that group would come out scot-free. A "study" like that would be so useless and pointless because it's self-explanatory. If group 2 only consisted of cervical complete injuries The results would be very dark ill call it. This is why SCI so desperately deserves a treatment, not just for the obvious implications of all the of life, but for the extreme damage to the human body and very serious health implications!

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        • #19
          Originally posted by JamesMcM View Post
          No the reality is not, I'm not just painting a bleak picture I'm explaining the other side that you're trying to pretend it isn't real,as it's not pleasant. I got a 95-year-old great-grandmother who is probably in better shape than you, in certain ways she's better shape than me, our skin is probably as fragile same as our bones, she goes to the bathroom herself no suppositories are catheters needed, she doesn't have chronic infections or a neurogenic bladder! fact is there will be no SCIs in that good of shape at her age. She got there but never drinking, watching her water, eating properly her body isn't riddled with disease and damage,and most importantly she walks on a daily basis keeps your body moving as much as possible which is extremely important in the elderly! Did she get lucky, sorta she's got a few friends she grew up with, but let's not forget that she grew up in a time where lead poisoning was abundant, they were exposed to much worse carcinogenic's that we are today. You speak as if because you know of 10 peoplethat are relatively healthy after a long run with SCI that that makes it fact, small numbers. The actual statisticsbased on large numbers healthcare checks are there and just like SCI-nurse and myself said The full implications of ageing with spinal cord injury is not not yet determined; it probably never will be; there's too many factors as I explained in my last post, there's no conclusive evidence on long-term implications of dysreflexia for god sake's one simple aspect of SCI! Here's a fact the average 60-year-old will not have osteoporosis, muscle atrophy, incontinence, reliance on catheters, serious joint damage, contractors, past history of bone fractures, damage to the central nervous system, autonomic dysreflexia, blood pressure issues, weak skin with history of bedsores, minor/mild/severe scoliosis,history of chronic infections etc. etc. An SCI who has been in the wheelchair for 25+ years at the age of 60+ will have all of that! You have all of that unfortunately, I'm 24 4 years post and I have all of that,there are very few minor very low SCIs that are blessed with a very flaccid bladder among other things that May not be riddled with all that! Your average able-bodied 60-year-old would maybe have two or three of those probably too much lesser degree, in all likelihood the average person does not have any of those conditions I have a huge family, a majority are 60+ and my one uncle had knee surgery that's it other than that they all still snowmobile in the winter, hunt and farm;I'll point this out there's no none of them make the healthiest choices ever in their life.I have lost two aunts to cancer but that disease he get any of us... it's a simple as this if you were to take 500 people age 60 and up, group 1 250 able-bodied, and group 2 250 spinal cord injuries all being in a chair for longer than 20 years (meaning they aged with the disability) you then take these 500 people do full medical checks, including comparing medical history,New bone density scan's, MRIs of the joints, range of motion test, biopsies, CAT scans, ultrasounds,blood tests, skin examination etc. It's self-explanatory that the results would be staggeringly One sided, they would be completely daunting to new injuries! Both groups would have illnesses, abnormalities etc. but the ratio in Group 2 would be un comparable, not one patient in that group would come out scot-free. A "study" like that would be so useless and pointless because it's self-explanatory. If group 2 only consisted of cervical complete injuries The results would be very dark ill call it. This is why SCI so desperately deserves a treatment, not just for the obvious implications of all the of life, but for the extreme damage to the human body and very serious health implications!
          Without question, "SCI deserves a treatment." There are any number of studies and projects in the works to that end today, and many more in the future before we see "a treatment" (probably more like quite a few treatments given the diversity of the injury). Knowing the risks that we face with a spinal cord injury is important and imperative to living with a spinal cord injury. That said, we can't spend what life time we have dwelling and perseverating on these risks. We've got to take the risks into consideration as we live our lives and try to make the right choices to live as well as we can. As with everything in living a life, the key is weighing the risks/rewards in a balance. That is good advise for any one, no matter if they are aging with or without a spinal cord injury.

          All the best,
          GJ

          Comment


          • #20
            Originally posted by gjnl View Post
            Without question, "SCI deserves a treatment." There are any number of studies and projects in the works to that end today, and many more in the future before we see "a treatment" (probably more like quite a few treatments given the diversity of the injury). Knowing the risks that we face with a spinal cord injury is important and imperative to living with a spinal cord injury. That said, we can't spend what life time we have dwelling and perseverating on these risks. We've got to take the risks into consideration as we live our lives and try to make the right choices to live as well as we can. As with everything in living a life, the key is weighing the risks/rewards in a balance. That is good advise for any one, no matter if they are aging with or without a spinal cord injury.

            All the best,
            GJ
            Agreed, but what is troubling is the ways we are given to manage those "risks" that are caused by the injuryoften just opened the door to more damage long term, such as catheters, biphosphonate's the list goes on Youth is no shield either, and ageing greatly exasperates this.

            I agree mostly, but I'm going to fixate on them as with my injury ( high complete cervical) that's the only way I can actually somewhat prevent them, it's a full time job.would I recommend that for everyone; no, would I recommend that for anyone trying to have substantial recoveryin the future; yes as you'll need a body to recover.

            However pretending that ageing has the same implications with or without SCI, is straight up stupidity!!you have to be one hell of delusional to actually believe that I'm sorry but that is fing true. That's not healthy, you need to be very aware of the reality of the situation to manage it!

            One thing that troubles me is if regular catheterization does increase the likelihood of bladder cancer,because of frequent irritation, inflammation etc. we pretty much are more susceptible to cancer in general,again nothing is proven, as it's too soon ( although not ejaculating may increase risk of prostate cancer, prostate cancer being one of the most common). But our body is in a constant state of shock, fight or flight even when we are calm cortisol is more than likely riddled through our body from nerve pain, spasm's, just inescapable unrepairable damage to the central nervous system in general . The stress hormone has been hypothesized to cause numerous problems in the body, susceptibility to cancer being one of them. When we hear eat healthy, I don't think enough emphasis is given you have to Really eat healthy with SCI,Poor health choices with food actually cause cortisol release wheats, sugars etc. our bodies can't process it well! after SCI our digestion is affected, so it's safe to assume we process things even worse. Also Inflammation is much more common in our body, from the injury, frequent infections, bacterial colonization, joint damage,foreign objects etc. and we'r obviously much more susceptible to it. We also have to be very wary of autonomic dysreflexia there's no telling the full damage it can have on the body and the brain! Frankly I believe that there is cellular implications after a severe paralyzing injury, everything alters The entire body is affected how would it not be. There's just no literature out there, and there's too many possible threatening implications that we're only barely starting to realize! let's not forget SCI's haven't been surviving that long, not even a century yet and life expectancy has always been lower, just from simple observation. The obvious things like osteoporosis, bladder pressure etc. there are no truly safe ways to manage them, it's scary. Be rigorous, be religiouswith your diet, ( personal nutrition deserves your time to be researched) that's our best bet and hope luck is on your side... I don't care what anyone says it's important to know The full implications of the injury especially with aging, and to study this stuff, while more is being discovered.
            Last edited by JamesMcM; 04-27-2016, 09:02 PM.

            Comment


            • #21
              The woman's parents sound rather narrow minded in my opinion. I would just ignore them and hopefully the woman will too if she really loves you. Eventually they will probably come around. Anybody can have health issues, I think a lot of it is genetic in nature such increased risk of Cancer and that sort of thing. I know a lot of Para's and Quads who are healthy in their 50's and 60's and even older. Just go about your life and live it the best you can and don't worry about things, life is too short to worry.
              "Life is about how you
              respond to not only the
              challenges you're dealt but
              the challenges you seek...If
              you have no goals, no
              mountains to climb, your
              soul dies".~Liz Fordred

              Comment


              • #22
                Originally posted by Curt Leatherbee View Post
                The woman's parents sound rather narrow minded in my opinion. I would just ignore them and hopefully the woman will too if she really loves you. Eventually they will probably come around. Anybody can have health issues, I think a lot of it is genetic in nature such increased risk of Cancer and that sort of thing. I know a lot of Para's and Quads who are healthy in their 50's and 60's and even older. Just go about your life and live it the best you can and don't worry about things, life is too short to worry.
                The whole genetic disposition is controversial at best! My aunt just died of an extreme case of leukemia, we don't even have any indication of either side of her family having any cancer actually ( One case of lung cancer I believe, smoker). And her daughter was just diagnosed with MS, again no known member of either side of her family having it! Her brother and father are Whistlin Dixie's, her great-grandmother almost 100 years old living on her own, you know. My grandpa lays in bed constantly, and eats the greasiest food you can imagine lots of meat no greens and drinks like a fish no cancer but plenty of kidney stone's, I'm not more likely to get kidney stones as none of his children; one being my mother have had any, nor have I it's just an overlapping of bad habits and poor choices! And in rare cases bad situations hazardous workplace, exposure,sudden disability etc.

                Comment


                • #23
                  In any case, the first 15yrs were gravy. The next ten were me working and school etc so I was very busy.

                  I started to notice bladder issues at 25yrs in.

                  Bowel care will change for sure. I attended a seminar on aging at a rehab centre years ago and it was mentioned that things you use today will lose their effectiveness in the future.

                  Life is about risks. If she's willing to risk with you, go for it!
                  Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                  T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

                  Comment


                  • #24
                    Faji_tama, it seems like the crux of your problem is the cultural divide. If you could prove that you are the healthiest SCI in the world your GF's parents would still disapprove of your relationship. In their eyes you are flawed. You can try to try to slowly move closer to them but I have doubts about that happening. I would bet that there will be increasing pressure on your GF to seek a a non-disabled marriage partner. You may be in the predicament of having to chose between pursuing the relationship and becoming estranged from the family, or terminating your relationship with your GF and moving on with your life with the hope of finding a new love.
                    Last edited by SCIfor55+yrs.; 04-28-2016, 12:43 PM.
                    You will find a guide to preserving shoulder function @
                    http://www.rstce.pitt.edu/RSTCE_Reso...imb_Injury.pdf

                    See my personal webpage @
                    http://cccforum55.freehostia.com/

                    Comment


                    • #25
                      I think that SCIfor55years is probably right. Although the discussion here was eye opening for many, I think that many who stated you need to know the risks, deal with them the best you can and live your life, is probably the best advice. Unfortunately, there are many disease processes that we can not control. Yes, SCI may exacerbate them, but health care providers are trying to come up with ways to either treat or prevent them. Unfortunately, there is only so much time in the day and all of this takes time.
                      Good luck in whatever your decision is. No one but the two of you can figure out what is right for you. Let us know what happens!

                      ckf
                      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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                      • #26
                        Thanks again for all the feedback, advice, and opinions everyone! I have no idea how things will turn out with the girlfriend, but I'll give it a try and see how things go. At the very least, it got me looking into and aware of these issues that us SCI folk face, so I can at least start doing what I can to mitigate the risks! (Better 27 years late than never and too late, right?)

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