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Camptocormia (bent spine syndrome or BSS): Looking for others

Spine Health | Last Active: Jun 7 11:43am | Replies (114)
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@rnj09

Thank you, Colleen. I just found this site today and while there seems to be no really encouraging news regarding camptocormia, it is good to find people like me who can understand issues that arise from having this condition. I was diagnosed with PD in 2009 and retired in 2011. I can't remember exactly when I was diagnosed with camptocormia. It took a while to find someone who knew what it was. Before diagnosis I had x-rays, but was told there were mild arthritic changes, nothing more. As my condition worsened, I was fitted for a brace. The brace provides a measure of support, but is no real advantage in walking. I use an upright walker outside for short walks which I try to do every day. My arms get tired, so emphasis on short. I'm thankful to have found this forum. If any breakthroughs occur, I hope we will be the first to hear.

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Replies to "Thank you, Colleen. I just found this site today and while there seems to be no..."
John, Volunteer Mentor | @johnbishop | May 2, 2020

Hi @rnj09, I would like to add my welcome to Connect along with @colleenyoung and other members. I haven't yet been diagnosed with camptocormia but believe I have all of the classic symptoms. I also have polymyalgia rheumatica, osteopenia and small fiber PN. I too have trouble walking very far and tend to lean forward when walking. I had always attributed this to lower back pain due to degenerative disc disease. I recently ordered some Nordic walking sticks to see if they would help me walk more upright. Like you I try to exercise some each day. I do at least 45 minutes each day on an elliptical machine I have at home but I really want to get back to walking outside when it's nice. I had planned to discuss all of this with my doctor at my annual exam but COVID-19 pushed it out until things get back to normal for scheduling appointments.

Have you tried any exercises to help with the symptoms?

I recently found a device called a sand dune stepper which is basically 2 memory foam pads for walking in place type exercise that helps with balance and leg strength and is supposed to have some benefits for people with Parkinson's Disease - here are some videos with examples/exercises - https://www.sanddunestepper.com/videos/

I also found a site with some exercises to help with posture which I have a real problem with. I don't go through them every day but I'm trying to do them more a little at a time -- https://movementdisorders.ufhealth.org/2012/03/01/physical-therapy-tips-for-posture-improvement-in-parkinsons-disease/

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lilypaws | @lilypaws | May 3, 2020

What 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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