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……….
Hi @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/
Liked by John, Volunteer Mentor, lioness
@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 .
Liked by Teresa, Volunteer Mentor
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.
Thank you for posting the nih website. The information was helpful. I have PD and "something else". In 2018 recovering from extensive back surgery, I had a pulling down sensation, pulling my chest forward and then becoming short of breath. I assumed it was from the surgery and that PT would take care of it. Two years later and it is getting worse. My PD doctor has come up with 3 different diagnostic names: abdominal dystonia, camptocormia, and diaphragmatic myoclonus. Two weeks ago he injected Botox into rectus abdominus muscles. I have had no improvements nor side effects. I think the reason I don't have back pain is because I have such a hard time breathing that I sit down quickly before the back gets involved. I have felt a pulling sensation in my lower back but the breathing difficulty trumps the back tightness. If Botox doesn't help I assume I will be confined to a wheelchair in the near future.
Liked by Teresa, Volunteer Mentor
@sadnancy All surgery creates scar tissue in the fascia and that can create a lot of body restrictions. I wanted to share this post of mine where I was talking about breathing problems and myofascial release which releases fascial restrictions. I have a lot of experience doing MFR therapy and it helps me a lot. https://connect.mayoclinic.org/discussion/mysterious-shortness-of-breath/?pg=82#comment-401008
Hi @valeriestrydom, oh, I hear your frustration. Can you tell me more about the severity of your bend and your mobility? Do you use a walker? Have you ever tried a brace?
Yes I use a walker when I go out which is seldom because my arms get very tired, I have used about 4 braces specifically made for me, but they either hurt me or do not keep me upright. I am very small boned but the test show that my spine is fine, My tummy muscles are extremely strong but the specialist says botox will not help, I dream of walking upright,
@rnj09
Thanks Teresa. I will check it out.
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