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Topic spine & posture issues - possible treatments? Go to previous topic Go to next topic Go to higher level

By Reflection On 2012.12.31 17:06
Dear friends - this topic arose in the DBS/not DBS recent thread, and I'd recently asked if anyone had advice on treatments that might help an increasing "lean". I don't recall seeing this issue addressed before - perhaps it has been but I don't remember, because it's only recently become an issue for us.

I tend to research issues.
Thus far, my research has found that
a) these issues are quite common in advanced PD, but
b) there seems to be no consensus on what causes the issues, how to treat, or even much good research.

That said, I'd very strongly urge anyone contemplating surgery to do their own research - as best as I can tell, these issues do NOT seem to respond well to surgery, and the surgery can introduce further complications.
"Conclusion. Patients with Parkinsonís disease undergoing spine surgery in a single tertiary referral center had a very high reoperation rate associated with technical complications. Patients should be appropriately counseled regarding the increased risk of operative complications and closely followed for incipient failure."

Terms I've tried to google, with some success: "parkinson's spine surgery"
"lewy lean" "parkinson's pisa syndrome"
"parkinson's Pleurothotonus" (pisa syndrome, lewy lean and Pleurothotonus are all terms for the tilt to the side that looks like this See, eg,
"parkinson's camptocormia" (this is the leaning forward from the waist).

Here's a discussion of risks of surgery - any surgery - for folks with PD:

I"m no doctor, so take this for what it is worth - not much, but well intentioned.

I wish I could suggest alternate treatments that might work. So far, I haven't found ones. The sideward lean seems to be more common with folks who had greater asymmetry in their Parkinson's - one side is lot worse than the other. For some folks, the spine/leanig issues come and go, and may be associated with neurotransmitter imbalances - perhaps associated with cholinesterase inhibitors (though my guy isn't taking those - he does have significant asymmetry)

The best I can suggest is to do your own research - you know your loved one better than anyone else (including his doctor) and you are more motivated than anyone else to see if there's anything that might help.

This is too long - but I have to add that spinal issues are common, even with out PD, and may be incidental, not directly related to the PD. I sure don't think that living with pain is a good solution for anyone, and in some cases, surgery might be a very good solution. But where the spinal/postural issues are related to PD, as best as I can tell, surgery does little to help, and can end up actually harming the patient. Experimenting with changing drugs might help - and carefully observing when the issues occur might help your doctor pinpoint what medication changes might help. For some, the best solution may be to live with it, especially if it is not painful or disabling (sometimes it seems to bother the caregiver more than the person with PD- it sure LOOKS painful, but apparently, it sometimes isn't.)

I wish there were a better answer - and there may be - each individual is different.

May this coming year be blessed, for all of us, our families, our loved ones. And may devoted researchers make progress on this wretched disease!

By Knoosy On 2013.01.05 19:51
This is a very good post. I'm looking at the links and using the phrases to do my own research.
My PD friend has been leaning to the right side for a few months now. Sometimes it goes away, but when he has it, it's impossible to get him straight. If he's sitting down on an arm chair, he drops the right elbow and leans almost down to his knees. I keep propping him up but he goes right back to leaning. It's starting to get quite serious. He is at the ER for the second time now because he suffers from unbearable constipation and his doctor said it may be related to the spine and his back problems affecting the intestines. I do body work and yoga therapy and worked on him last week. According to him, the pain he felt in his lower back and right leg was gone after that. He also felt vibrations inside his body after the treatment as we worked on releasing blockages and tension held in his body. After a couple of days it started to get worse again because he gives in to the leaning. He was always a brain person and never exercised his whole life. At 70 y/o his back muscles are too weak to compensate or counteract to that pull to the side.

I have a question about the term "lewy lean" that you mentioned. Could the leaning be a sign that he actually has Lewy Body disease and that he wasn't properly diagnosed yet? Thank you.

By LOHENGR1N On 2013.01.05 20:39
Koonsy. A lot of our leaning has to do with our muscles contracting and twisting (dystonia) and is part of Parkinson's Disease or sometimes aide-effect of our medicines. Dystonia can come and go daily or for longer periods. It might help if you try to think of it like a charlie horse? so all the strengthening of muscles on the other side won't help much. The vibrations inside might be a internal tremor we have them. The ER doctors and many Doctors in general don't seem to realize that Parkinson's Disease effects our whole bodies the autonomic nervous system included. This system regulates all our functions which we don't have to think about doing, heart beating, breathing, going to the bathroom (bowel movement) etc, etc. There are more than a few threads here on the forum, past posts on constipation and Parkinson's.

Lewy body disease presents differently than Idopathic Parkinson's Disease as it affects different parts of the brain than Parkinson's. While similar symptoms might occur at onset it differs over time. It can be confusing though because upon autopsy lewy body's are found present in Parkinson's, In fact it is just about the only way the diagnosis of Parkinson's can be absolutely sure is finding them post mortem.

Hope this helps some. Take care, best of luck and hang in there.

By Knoosy On 2013.01.05 22:10
Thanks Al. This helps. My friend just called me from the hospital. They are keeping him overnight. He was finally able to go to the bathroom. We need to find an Aide for him because he is having so much trouble on so many levels. Even nursing home was mentioned already, but I feel that he might decline even faster if he had to leave his home. He loves his independence and friends coming by. Many of whom are young. The only younger people at the nursing home are the staff. He has a very young mind and he accepts that one day he may have to live in a home but now it would feel like an early death sentence to him. So far we may be able to manage with additional help. I'm learning to take things one step at the time instead of getting overwhelmed by what "could" happen. It's good to plan for the future, and also good to trust in a higher guidance as if events are playing out according to a script and one has to surrender to it without fighting it or driving yourself crazy from fears and worries. That only weakens everyone in mind, body and spirit. It helped me to allow myself to grieve a lot accepting that impending increasing loss of a loved person and out of it gather the strength to be clear to do the right thing and be of assistance without my emotions draining the sh.. out of me.
Best Wishes to All.

By Reflection On 2013.01.05 22:33
I'm no expert on the leaning issue -I was moved to post because I'd done a little research, and felt strongly that spinal surgery should be approached with great care. But I don't feel I understand the issue yet. What most worried me for my loved one is a possible "cascade" - that is, he leans, making falling more likely, or he leans, screwing up his spine and torso, causing pain.... I was hoping that someone might have insights that would help us avoid the lean causing further issues (like your friend's constipation) - by itself, the lean doesn't seem to much bother my loved one, so I'm trying to chill out about it.
The Parkinson's Disease Foundation has an on-line seminar scheduled January 15 on gait/balance/falls given by a physical therapist - I'm hoping that perhaps that might provide some insight, or maybe she'll take questions on the Leaning issue:

On "Lewy Lean" - leaning is especially common in Lewy Body Disease - search for "Lewy Lean." But - it also happens with various other neurological diseases, and some medicines seem sometimes to cause it. I don't think my loved one has Lewy Body Disease. Leaning may mean that the neurodegeneration is impacting more parts of the brain - but alternatively, may be because if he takes enough medication that the side most affected by PD is OK, that's too much medication for his less affected side - so he gets dystonia. Or - who knows?
On the larger issue of Lewy Body/PD - there's a spectrum, and they kind of blend into each other. To me, there's a kind of "angels dancing on the head of a pin" scholastic argument about distinguishing between them - but I think each person has their own unique version, with their own speed of progression, their own portions of the brain impacted, and it all changes over time. If you don't see signs of Lewy Body (and, as I said, while my guy has some cognitive issues, they aren't really Lewy Body-like) - I don't think a lean necessarily makes it more likely that those issues will emerge.
Good luck with it all. I do think that if our loved ones can live independently, it's often better for them, and good for you helping him be independent as long as possible.

By Knoosy On 2013.01.05 23:05
Thank you Reflection. PD seems to be a very complex disease. Everything is somehow co-affected and becomes apparent at different times. Even the mind plays a prominent role. My friend always freezes at the supermarket register. He is at his best when he is excited about something work-related or about being the center of attention at a party. He loves to dress up and can look quite dapper. Salsa music gets him going. One minute he is almost catatonic and the next he spins someone around on the dance floor and no one could ever tell that there is anything wrong with him. Sadly the disease is taking over and we treasure these moments when he is enjoying life so much more. Those times are precious. I'm a Reiki Master and for a long time the energy work helped so much that his family who hasn't seen him in two years and remembered him being in bad shape, told me that they didn't recognize him. He appeared to be healthy. That was two years ago. Since I do a lot of time consuming caregiver work for him, I didn't do Reiki on him anymore. Neglecting my own work I got overwhelmed and worried due to his rapid worsening and what it meant for our lives that have become so interconnected. As I mentioned earlier, I allowed myself to grief. The pain was so deep that I had to seek out an energy healer myself. It helped so much so that I could release a big part of the fear and pain. Emotions get stored in the body and that eventually make us sick if we don't attend to them. It's healing to cry. Just don't worry and don't be afraid. You must take care of yourself first just like you have to put on the mask first on the airplane in case of an emergency before helping others.

By parkinit On 2013.01.12 23:00
I've asked my spouse when he is leaning - Why? His response didn't seem to imply dystonia. He indicated that it just "felt right." I could straighten him up and he didn't complain that it hurt, but he would be right back in that position within a few minutes.

No idea why, but it is benign compared to many symptoms, so we really haven't worried too much about it.

By Rempt2 On 2013.02.26 20:05
my husband is in rehab and has had recent issues with leaning. He had been able to walk with a walker on his own. Now he is leaning to the side and needs someone to hold him while he "walks". He had an increase of his sinemet last week which was supposed to make him walk better. He's supposed to be coming home in a week.

By dans316 On 2013.02.26 20:41
My PWP often leans to the right when sitting in a chair. If I tell her to sit up, she says she didn't know she was leaning.
Not surprising in the 3 times she's fallen in the past 6 months, it's always been to the right although she was using a walker each time. She was having pain in her shoulder in the back and the doctor thought maybe therapy would help. We never did go for the therapy as extra strength Ben Gay and extra strength Tylenol alleviated the pain.

By jcoff012 On 2013.02.26 22:56

You have tried so many things to help your friend, but it sounds as if you aren't being mindful enough of your own health and well being. This disease seems to take many casualties, including the one(s) who put so much of their live(s)on hold in order to find answers. As you stated in your last post, remember to take care of yourself first. No one wants to see another caregiver be consumed by PD. it seems so many are. Rest when you can and recharge your batteries often by immersing yourself in pursuits unrelated to PD.

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