Hello,
I was born with mild CP and am now 37yrs old. My disabilities resultant from CP include balance and coordination problems. I had my achilles tendon stretched when I was seven and for the most part, have been managing well. This summer we visited the Great Smoky Mountains and went on a hike that I thought was 21/2 miles but turned out to be 5miles. I had a good deal of pain in my left hip, knee, and foot after that and recently am having difficulty walking as my left leg doesn't cooperate. It is as if it stiffens and drags when I try to walk. I also experience knee tremors when walking down stairs. I have also had MS for 18yrs and that affects my right side. I feel this new problem is related to the CP due to the weakness and lack of muscle tone on that side. My question is, did I further weaken that leg when we went on our hike, or am I just getting older and that side is deteriorating faster than is normal? Thanks for any input you have to offer. Kristine
Hi, I am 38 with mild CP (hemiplegia). I had very few problems as a child and had my achilles tendon lengthened when I was 17. My problems started a year ago with lower back pain, and a decreased range of motion. I went to PT and there they discovered that I was also dropping my foot a lot and leg getting stiff.
I now wear a leg brace to help with that and I get botox shots in lower leg. The botox gives mixed results for me but the brace really has helped with my gait, the dropped foot and I am able to stay up on it longer with the brace. This summer I went to the Rockies and did some climbing and biking and had a good time. I am not a doctor, but your situations sounds verry very much like mine. I am being told that it is age related and the body is having a harder time with the compensation mechanism. I have a whole regiment of stretches that I do now and I go to the gym twice a week to keep the range of motion from getting worse. I still get episodes of pain, tightness and fatigue that I wish someone would help me with so tomorrow I am trying a massage therapist to see if they can push back the pain levels.
It probably wouldn't hurt to foolow up with your doctors on this especially since there is MS involovement as well. Good luck Kristine and keep me posted on how everything goes for you. There actually are quite a few of us all in the same age range with similar issues on this healthboard so you are not alone. Welcome aboard!
Lastramy,
Thank you for the reply, and I apologize for being slow in responding. The start of the school year has slowed me down. I appreciate your input and thank you again for taking the time to answer my question. I will bring this subject up at my next appointment with my neuro. Until then, I will be careful and try not to fall.
Sincerely, Kris
This is just a suggestion you may want to "retire" from walking. If you do retire from walking and get a wheelchair then you should be good to go. You won't be wasting energy on walking. You won't get tire midday anymore.
Have any of you tried accupuncture for pain relief? I am 60 years old, have had "mild" CP for the first 25-30 years, and as I grow older, my body is in rebellion!
I have accepted using a cane for walking, and use a mobility scooter around the office (gets me to the rest room faster!) but am functioning pretty well.
The problem giving me the most problem now is disc compression in my lower back, plus upper and lower arthritis in the back. I have been taking a pain medication for a couple of years now (Lortab) which gives surprising relief with no bad side effects. I've also had steriodal injections in the lower back, without much relef. Accupunture seems to give some relief, but I'm only on the 4th session, so the jury is still out.
What the heck - you take what life brings you, and deal with it! But my goal is to stay OUT of a wheelchair if possible.
Hello,
Thank you Kurt, Vicent, and Big Dog for your input. Kurt, my problem with walking has not yet reached the point where I need to consider a wheelchair. I am still able to walk though with some concentration required and with thus far, endurable pain. As a person with MS as well however, I do understand the need to conserve my energy. Again, thank you for taking the time and consideration in answering my post.
Vicent, Your question is answerable, but only in regards to my youngest years. My achilles tendon was stretched when I was 7yrs and did in fact help for awhile though I have no personal memory to compare pre and post stretched tendon. I only knew that I could go barefoot and not be heard coming due to my brace. I was supposed to have it stretched again when I was 18yrs, but when scoliosis was discovered at age 14, the doctor at that time advised my parents to forego the second surgery which they did. In hindsight, I feel I should have had the second surgery because by then my growth would have been complete. I did see an orthopedic surgeon about 5yrs ago and he advised against any surgery because our recovery time as we grow older is longer and harder. Also, in his opinion, the surgery risks outweighed the benefits. I question that wisdom today. Hope this answer helps you and thank you for answering my post.
Big Dog,
I understand what you described. My neuro told me two years ago of my degenerative osteoarthritis in my cervical spine. I tried neurontin for pain management but found that it interfered with my studying, so I stopped. I have been practicing yoga through the NMSS for a year and a half now and find that i feel less pain and a sense of personal power; I am being proactive in my own care. I have not tried accupuncture, but must admit that one shot a week (for MS) is enough!LOL I thank you as well for responding and must say, I like your moxie.
Sincerely, Kris
Kristine1
You'd be surprised how painless accupunture is - my Pain Management MD administers it, and every 40-45 minute session is rather relaxing. I am thinking of trying and inversion table - my doc says it won't hurt me, and stretching the spinal cord compression might give some relief, but he says maybe we'll try traction in the PT department first, and if it works, go ahead and buy the inversion table. I have seen a powered model, as it might be laughable to be stuck upside down! So if I waste a few bucks, I can add it to the treadmills,stairmaster, etc that I accumulated over the years!
Don't give up - never give up! I find that attitude in the face of adversity really does impact how one's body behaves. CP to me is nothing more than one of life's "wrinkles" - not an insurmountable barrier.
When I was born, my folks were told to put me in ad institution (that was back in the early 1940's), but they refused, and kept looking for ways to improve my mobility. My dad quit a great job with a huge electronics company, bought a dairy farm in NY, all because he found a doctor that said "move this kid to the country, throw away those braces, and let him learn to walk on uneven ground". Make a long story short, I grew up cleaning barns, baling hay, working just like my older brother, who had no inpediments. Graduated small town HS, went to college, married, have a grown son, and am the CFO of a company now, with no plans to retire. CP to me does NOT mean 'couch potato'!!
Kristine1
You'd be surprised how painless accupunture is - my Pain Management MD administers it, and every 40-45 minute session is rather relaxing. I am thinking of trying and inversion table - my doc says it won't hurt me, and stretching the spinal cord compression might give some relief, but he says maybe we'll try traction in the PT department first, and if it works, go ahead and buy the inversion table. I have seen a powered model, as it might be laughable to be stuck upside down! So if I waste a few bucks, I can add it to the treadmills,stairmaster, etc that I accumulated over the years!
Don't give up - never give up! I find that attitude in the face of adversity really does impact how one's body behaves. CP to me is nothing more than one of life's "wrinkles" - not an insurmountable barrier.
When I was born, my folks were told to put me in ad institution (that was back in the early 1940's), but they refused, and kept looking for ways to improve my mobility. My dad quit a great job with a huge electronics company, bought a dairy farm in NY, all because he found a doctor that said "move this kid to the country, throw away those braces, and let him learn to walk on uneven ground". Make a long story short, I grew up cleaning barns, baling hay, working just like my older brother, who had no inpediments. Graduated small town HS, went to college, married, have a grown son, and am the CFO of a company now, with no plans to retire. CP to me does NOT mean 'couch potato'!!
Keep the faith - all things are possible.
I applaud your parents for giving you the wonderful outlook. I just hope that I can help to make my son as confident as you are when he is an adult, and go from the gusto.
Thank you
What a great insperation.
I applaud your parents for giving you the wonderful outlook. I just hope that I can help to make my son as confident as you are when he is an adult, and go from the gusto.
Thank you
What a great insperation.
Thanks, but I really don't consider myself an inspiration. My parents really were a driving force - and I'm sure it was hard on them when I was younger. But without that determination to make me independent and self-sufficient, who knows what I might have become.
What may seem hard-hearted as a parent really will pay huge dividends in your child's development - trust me! Be strong, and make them strong. I thought my parents were heartless at times - driving me to do things when I felt tired or incapable of doing them (within reason), but you would be surprised what the human mind and body are capable of when challenged.
Thanks - and good luck with helping your son be all he can be. GEEZ - that sounded like an ARMY commercial!
Have any of you tried accupuncture for pain relief? I am 60 years old, have had "mild" CP for the first 25-30 years, and as I grow older, my body is in rebellion!
I have accepted using a cane for walking, and use a mobility scooter around the office (gets me to the rest room faster!) but am functioning pretty well.
The problem giving me the most problem now is disc compression in my lower back, plus upper and lower arthritis in the back. I have been taking a pain medication for a couple of years now (Lortab) which gives surprising relief with no bad side effects. I've also had steriodal injections in the lower back, without much relef. Accupunture seems to give some relief, but I'm only on the 4th session, so the jury is still out.
What the heck - you take what life brings you, and deal with it! But my goal is to stay OUT of a wheelchair if possible.
Good luck!
Hey BigDog,
do you think a 60 year old AB is in any better shape than you are? CP certainly is tough, but should we really blame it for all of our ageing ills? Talk to a few older AB's without CP. You'll find that they are suffering too. If you've been able to stay out of a wheelchair till now, you're doing damn good! I don't like the streroidal injections... they will aid the bones of the spine to disintegrate at a faster rate if given too often. I use the injections in the first joint of my right thumb for an osteo-arthritis treatment. I get one a year. Have you considered surgery for your back. With the disc compression, I would think surgical intervention now before it gets any worse, would be a better course of action. Activity is the best remedy for the Arthritis pain. A little activity is better than no activity. I take 100Mg's of Diclofenac daily for my Arthritis pain. I use a UBE (Upper Body Exerciser) for my daily workout. You can see one at [url]www.scifit.com[/url]. Please watch the use of prescription pain killers including Lortab. It's been good for 2 years... This will change, and then you'll go to something stronger, then... Believe me I know!
Good luck to you! Us old gimps must stick together...
Last edited by musicmaker650; 01-07-2004 at 08:48 PM.
Hey BigDog,
do you think a 60 year old AB is in any better shape than you are? CP certainly is tough, but should we really blame it for all of our ageing ills? Talk to a few older AB's without CP. You'll find that they are suffering too. If you've been able to stay out of a wheelchair till now, you're doing damn good! I don't like the streroidal injections... they will aid the bones of the spine to disintegrate at a faster rate if given too often. I use the injections in the first joint of my right thumb for an osteo-arthritis treatment. I get one a year. Have you considered surgery for your back. With the disc compression, I would think surgical intervention now before it gets any worse, would be a better course of action. Activity is the best remedy for the Arthritis pain. A little activity is better than no activity. I take 100Mg's of Diclofenac daily for my Arthritis pain. I use a UBE (Upper Body Exerciser) for my daily workout. You can see one at [url]www.scifit.com[/url]. Please watch the use of prescription pain killers including Lortab. It's been good for 2 years... This will change, and then you'll go to something stronger, then... Believe me I know!
Good luck to you! Us old gimps must stick together...
Musicmaker 650 - thanks for your reply.
Sorry, but I don't know what an 'AB' is? And I don't blame CP for all of my aging ills either. As a matter of fact, I really don't complain about ANYTHING in life. I learned as a child that it really changes nothing, so why bother. You know the old cliches - play the hand you're dealt, etc. Well, I guess I just practice it.
If the Lortab becomes something that stops giving relief or requires a higher daily dose, you can bet I'd do something else. But so far I am sustaining a minimum level (3 a day) in combination with exercise and Arthrotec 75 mg for my arthritis. Using a treadmill daily, watching my diet, and adequate rest seem to work for me. I won't consider surgery for the compressed disc - my doc advises against it, as by the gait I have - it may increase the pain, etc. or decrease my mobility.
And I gave up after two steroidal injections - not enough relief. Same for accupuncture. No long-term benefits
Sorry, but I don't know what an 'AB' is? And I don't blame CP for all of my aging ills either. As a matter of fact, I really don't complain about ANYTHING in life. I learned as a child that it really changes nothing, so why bother. You know the old cliches - play the hand you're dealt, etc. Well, I guess I just practice it.
If the Lortab becomes something that stops giving relief or requires a higher daily dose, you can bet I'd do something else. But so far I am sustaining a minimum level (3 a day) in combination with exercise and Arthrotec 75 mg for my arthritis. Using a treadmill daily, watching my diet, and adequate rest seem to work for me. I won't consider surgery for the compressed disc - my doc advises against it, as by the gait I have - it may increase the pain, etc. or decrease my mobility.
And I gave up after two steroidal injections - not enough relief. Same for accupuncture. No long-term benefits
Thanks....and have a good day!
BigDog
Hey BigDog,
it does sound like you know what you're doing. An "AB" (Able Body) is one of the "other people" that don't know what its like to walk with a cane or use a wheelchair... Does your doctor expect your compressed disc to heal itself? I had serious painful back pain at 30, that did heal with exercise and thearpy, but 30 is 30 and 60...
Hey BigDog,
it does sound like you know what you're doing. An "AB" (Able Body) is one of the "other people" that don't know what its like to walk with a cane or use a wheelchair... Does your doctor expect your compressed disc to heal itself? I had serious painful back pain at 30, that did heal with exercise and thearpy, but 30 is 30 and 60...
Have a great day!
Thanks - one never knows if what they're doing is right or wrong for sure, but I'm comfortable with my decisions.
And thanks for letting me know what an 'AB' is - I should have guessed!
No, the disc compression will not "heal" itself. My doctor is concerned that disc fusion will make my gait - which you might describe as a "controlled fall" might suffer or be made worse by spinal fusion. He called it the surgery of last resort - only if the pain were not manageable. Right now, it is.
And by the way - Montana IS beautiful - I was snowmobiling in West Yellowstone a few years ago, and it was really nice!!
we're 2 hours East of Yellowstone. I'm not a Winter Sports person, but our trip to the Park last fall was wonderful. If only I could get my wife to stay away from getting too close to the wildlife. A 3000 pound bull elk can be dangerous! The past fires in the Park were devastating, but new growth is all over!
I understand about the fusion. If I had gone ahead with my surgery, me and my feet would be distant friends for sure. As it is, being over 6 feet, makes it tough enough to put my shoes and socks on now... I already use two canes to walk and I carry a 20 year-old Quicky basketball outfitted sports wheelchair in my cars trunk... Oh the wonderful life of a Spastic CP! I bet you and I have many stories to tell...
we're 2 hours East of Yellowstone. I'm not a Winter Sports person, but our trip to the Park last fall was wonderful. If only I could get my wife to stay away from getting too close to the wildlife. A 3000 pound bull elk can be dangerous! The past fires in the Park were devastating, but new growth is all over!
I understand about the fusion. If I had gone ahead with my surgery, me and my feet would be distant friends for sure. As it is, being over 6 feet, makes it tough enough to put my shoes and socks on now... I already use two canes to walk and I carry a 20 year-old Quicky basketball outfitted sports wheelchair in my cars trunk... Oh the wonderful life of a Spastic CP! I bet you and I have many stories to tell...
Take care
Hell, and I thought I was the only one finding it to be physical exercise to put on my shoes and socks! At least I have an advantage - I'm NOT over 6 feet!
Yeah, lots of interesting things over time in my life - and I'm sure you have had a lot of experiences that are memorable, too.
What I find now is that all my "AB" friends ( I picked that up from you) are now showing signs of health problems that are actually putting me in better shape! And what really is ironic - a few of them do nothing but COMPLAIN about what they can and can't do anymore!! I'm REEAALLL sympathetic!!!
difficulty walking 
