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Camptocormia (bent spine syndrome or BSS): Looking for others
I have been diagnosed with Camptocormia ( bent back syndrome ) recently and having a hard time doing what I used to do caring around a rollator and a cane. Finding information and people besides medical terms has been difficult if not impossible. Only found two people and neither one will talk about it. I have a mild case of CP but that has never really been an issue until now and it gets in the way since being diagnosed with Camptocormia. I also have venous statious in my legs and have to be careful not to even brush them up against anything. Add to that being diabetic also with a weight problem because of inactivity. I am looking for solutions to the Camptocormia as meds have not worked and trying the botox injections again coming up in a few weeks with a new Doctor. Also looking or starting to look for some kind of brace that might hold me up if the botox doesn't work or does not work fully. Found a brace support system but they have not found a producer for the manufacture of them yet so hanging in there for that to happen. Suggestions or comments welcome..........
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John,
Thank you for taking the time to welcome me and share your experiences. Exercise does not change my symptoms so much but it surely strengthens what muscles I have. It is my understanding that exercise is essential for slowing PD down. I have never been one to exercise much, so this is a constant struggle for me, even though I know it helps. My feet have some issues that tend to discourage as well. As a result of surgery a long time ago on an extremely painful arthritic toe, I have a hammer toe on that foot. On my "good" foot, I had the tendons cut on four of my toes so that they lay flat and allow me to walk without too much pain.
Early on I started using the Nordic walking sticks. I really like them. Now I use just one of them on my "good" side for walking without my walker. Parkinson's has stolen the "swing" needed for balanced walking so I kind of gave up using the pole on that side. Every once in a while I get it out to practice. As with all other exercise, I need to do it more often. We have a stationary bike that I use sometimes.
I will check out the sand dune stepper and the exercise site you mentioned. Variety helps!! As always, I am in awe of folks like you that suffer from more than I have ever known, yet still stay positive and press on.
Thanks again for your help.
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1 ReactionHello @rnj09,
I would also like to welcome you to Connect. I would also like to invite you to our Parkinson's discussion group. Here is the link, https://connect.mayoclinic.org/group/parkinsons-disease/. As you look at all of the conversations there you will probably find one about exercise.
I have also been diagnosed with a mild form of PD and I find exercise to be the best medicine! It does strengthen muscles, improves gait and balance. Have you ever tried seated exercises for PD? They can be quite helpful when the weather is bad and there is a fall risk from wet or icy walkways. Here is a link to a Youtube video that demonstrates seated exercises for PD.
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3 ReactionsWhat is canptocomia? I am so sad you suffer so and hope you get better. Have you had you back seen by a pain doctor or Surgeon at Mayo. You may need surgery, but I'm not a doctor. Good for you going out for short walks. Bless You.
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2 Reactions@hopeful33250 I like those exercises and using the breath . Even though our group here doesn't have P.D. I think they are great and maybe some people who do have PD will join us when we get started back . I didn't time this how long is it ? We go for 45 minutes but if its not that long I can use another one also . Thanks for sharing .
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1 ReactionCamptocormia is otherwise known as Bent back syndrome. It is a forward flexion of the spine such that one tends to be looking down at the floor instead of facing forward. Thank you for your good wishes. Surgery is not an option. But I will be working on getting a better exercise routine to help keep me strong.
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2 ReactionsThanks Teresa. I will check it out.
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2 ReactionsHi @lioness,
Thanks for pointing out that most members on this site do not have PD, however, I mentioned the PD exercises to this new member with camptocormia because she indicated that she was first diagnosed with PD. Often PD and camptocormia go together. Here is an article from the NIH website that discusses PD and camptocormia,
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6174367/
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2 Reactions@hopeful33250 I liked the site and exercises glad it is helping you exercise is good for anyone but particular for people with problems like you have or with back problems anyone has . I wonder if she has a DVD I could get ? Will look into it . I will check out the nih. website .
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1 Reaction@lilypaws. I am so sorry. It sounds like you are handling it well. When did this come on? I will always think about you rnj09. Good job exercising. I can't because I'm in pain and going to have a fusion on my low b ack. Take care.
I'm sorry to hear you are in so much pain, lilypaws. Hopefully the surgery will help lessen it significantly. I really can't remember just exactly when the onset of camptocormia was, but it has been several years. It's just nice to find people who know what I'm talking about and experiencing.