Gait and balance issues
 

My wife has now had PD for about 5 years. For the first four years the Parkinson's was more of an annoyance than anything else. In the last year it has become appreciably worse. She is seeing a pretty decent MDS, although his availability is generally minimal between visits.

Susan has no tremor, but has rigidity. The rigidity is generally pretty responsive to Sinemet. She is on 25-100 four times per day. She is also taking Mirapex 0.5 1 tab two times a day and 1.5 tabs two times a day. In addition she is on Azilect 1 mg.

Recently the rigidity has become far worse at night than what it was previously. But the most difficult problem is that her gait and balance have deteriorated dramatically over the last month or so.

The other complicating issue is that she has had a severe back problem (sciatica) that causes excruciating pain for which she has gotten a series of steroid shots. They helped for a short period, but would begin to "wear off" after a few weeks. For the back problem she will be having surgery this coming week and has already started working with a great physical therapist who is expert in working with PD.

To some degree it is hard to differentiate the back from the PD regarding gait and maybe balance and I am sure we will get things clearer after rehab from the surgery.

I wanted to ask people what your experience has been with gait and balance problems: have you seen things deteriorate this rapidly? is there any helpful treatment for gait and balance? Right now more than anything else (other than the pain from the back problem) gait and balance are really the worst things that she is dealing with regarding the PD. These are becoming severe and really are affecting her ability to work and function on a daily basis.

Any advice would be most welcome.

Howard

Howard,
Good morning! Your wife's PD symptoms are very much like mine. I was diagnosed with PD in 2003, and first 3 years were ok, just as you said more of an annoyance than anything else. within a period of 3-5 months after that, suddenely all my symptoms got worse, gait and balance problems became severe and was having trouble with day to day activitiies. I also have stiff body, backache which makes me stoop a little and to keep balance i bend forward.

When I look back for reasons, for me, Stress was #1 factor.We moved from USA to India and I wasnot happy with my work situation. Everytime, I got into a stressful situation, my body would get stiff and my balance was off, I started to walk backwards and unless someone holds me or i hit a wall I couldnot stop myself. As strange as it sounds its true. The point of this is: Is your wife under a lot of stress?

How am I dealing with these things?
It took sometime to get out of my rut, anti-anxiety meds were helpful and I was able to focus on whats important to me. Got out of stressful job. Got azilect added to mirapex, amantadine and sinemet, regimen. Azilect made a huge difference to my rigidity and balance. gait is still bad, I am working on that. Yoga and phyisotherapy and acupuncture re are working well for rigid muscles. I try not to get stressed and do whatever I like to do. I take a day at a time, enjoy my time with my family, participate in this forum and cut down on my work load. SO far so good! Havent walked backwards in a couple of months!

Hope it helps!
Girija

Howard,

I agree with girija about the stress, yoga stretches and other calming activities - well about everything she said. I've also had neck surgery and back problems that luckily responded very well to the shots. Things can get pretty confusing about what's causing what when there are disc and other muscle problems. I gained back a good bit of the movement loss and eliminated most of the pain after treating these other problems.

My PD is just getting to where I have pretty severe postural instability and gait problems. I don't think DBS is recommended for these symptoms alone, or at least it doesn't help with balance [charlie correct me if mistaken please], so that leaves her med regimen to be fine tuned.

It's upsetting to be in pain and to feel like you could fall, which produces stress and the resulting cycle can perpetuate things. Glad to hear she is in physical therapy. This can help a lot.

wishing her improvement,
paula

Gait and balance issues
 

The thing that I have read is that there is now DBS being done that targets an additional part of the brain. Standard DBS targets Subthalamic Nucleus (STN) area of the brain. This apparently does relatively little for gait and balance. A new approach targets STN and pedunculopontine nucleus (PPN) and appears to benefit gait and balance. Is anyone familiar with this approach?

Thanks for the replies so far,

Simon

1) Don't underestimate the effects of stress. It may well be the main culprit here. Sciatica can be one of the worst pains imaginable and chronic pain can be one of the worst stressors. Her "ability to work"? Most of us work well past the point that we should have quit.
2) Steroids can be very bad news. Her body pumps them out in response to stress and the shots added a surge. How was the timing vis-a-vis her gait and balance problems?
3) Is her sciatica definitely caused by disc problems warranting surgery? Anyone showed you an X-ray that convinced you? Sciatica can also result from stress causing a spasm of a muscle in the upper hip called the piriformis. For many people, the sciatic nerve passes through the muscle which clamps down harder with the pain. A massage therapist can help if that is the problem.
4) If surgery is unavoidable, use the search tool here and find a post I put up a year or two ago about anesthetics and PWP. I think it is in one of the "sticky" threads. Make sure that all concerned read it.

Ppn
 

You are right - may have seen this.
Bilateral deep brain stimulation of the pedunculopontine and subthalamic nuclei in severe Parkinson's disease

Alessandro Stefani1,2, Andres M. Lozano6, Antonella Peppe2, Paolo Stanzione1,2, Salvatore Galati1, Domenicantonio Tropepi1, Mariangela Pierantozzi1, Livia Brusa4, Eugenio Scarnati3 and Paolo Mazzone5

1IRCCS Fondazione St Lucia, 2Clinica Neurologica, Dipartimento di Neuroscienze, Università di Roma Tor Vergata, 3Unità Operativa di Neurochirurgia Funzionale e Stereotassica, Ospedale CTO ‘A. Alesini’, ASL RMC, 4Unità Operativa di Neurologia, Ospedale S. Eugenio, Roma, 5Department of Biomedical Technology, University of L’ Aquila, L'Aquila, Italy and 6Toronto Western Hospital, Research Institute, University of Toronto, Toronto, ON, Canada Corresponding to: Alessandro Stefani, MD, Department of Neuroscience, University of Rome Tor Vergata, Roma, Italy
Email:stefani@uniroma2.it


Gait disturbances and akinesia are extremely disabling in advanced Parkinson's disease. It has been suggested that modulation of the activity of the pedunculopontine nucleus (PPN) may be beneficial in the treatment of these symptoms. We report the clinical affects of deep brain stimulation (DBS) in the PPN and subthalamic nucleus (STN). Six patients with unsatisfactory pharmacological control of axial signs such as gait and postural stability underwent bilateral implantation of DBS electrodes in the STN and PPN. Clinical effects were evaluated 2–6 months after surgery in the OFF- and ON-medication state, with both STN and PPN stimulation ON or OFF, or with only one target being stimulated. Bilateral PPN-DBS at 25 Hz in OFF-medication produced an immediate 45% amelioration of the motor Unified Parkinson's Disease Rating Scale (UPDRS) subscale score, followed by a decline to give a final improvement of 32% in the score after 3–6 months. In contrast, bilateral STN-DBS at 130–185 Hz led to about 54% improvement. PPN-DBS was particularly effective on gait and postural items. In ON-medication state, the association of STN and PPN-DBS provided a significant further improvement when compared to the specific benefit mediated by the activation of either single target. Moreover, the combined DBS of both targets promoted a substantial amelioration in the performance of daily living activities. These findings indicate that, in patients with advanced Parkinson's disease, PPN-DBS associated with standard STN-DBS may be useful in improving gait and in optimizing the dopamine-mediated ON-state, particularly in those whose response to STN only DBS has deteriorated over time. This combination of targets may also prove useful in extra-pyramidal disorders, such as progressive supranuclear palsy, for which treatments are currently elusive.

more here

dear howard?
 

Hello Dear Howard,

I have a few questions, as a young onset Parkie? :)

does she have tight muscles cramping in her shoulders and neck?

does mirapex cause her to have low blood pressure?
Mirapex is a double dipping drug - it can cause many side effects,
none of them are good...
please - research Mirapex side effects...

Is your doctor a neurologist/ a movement specialist/ or just a family physician?

What happened to your wife the year or two before her dxd -
did she lose a friend/ or parent/ was she depressed?
was she in a car accident,

you do not have to answer these out loud
just think about them...

what I would like to know is what is her diet contain (what does she eat and drink)-
thank you!

Gait, etc
 

Yes, I have walking and balance problems that worsen w/ falls, bumps, bad chiro adjustments, overly vigorous massage, anything that upsets the precarious musculo-skeletal status quo. Used to walk backwards, then didn't, now i"m doing it again. My advice, seek expert physical therapy/body work. The benefits are subtle but real. Good Luck!

Same here
 

Ibken says what I was going to say as I scrolled down the thread: physical therapy can do wonders. It cured my chronic back and leg pain of four-plus years COMPLETELY and ever so gently.
Also try Amantadine. Without Amantaine I fall, and my feet go on strike..
birte

Ive found that nothing works better for me than balanced meds and exercise, with a minimum amount of stress..Exercise is a major contribution to getting my symptoms, gait etc under control, which is wny I have not completely retired from commercial fishing..Ive discovered that the more body strength I can muster up, the better I can manage symptoms..I went through a period where I went into the "retirement" mode..I didnt go out of my way to push myself, and rested on my laurels so to speak, and my symptoms progressed, and that caused me to indulge in less strenuous activity, because I thought I simply had to accept the fact that I was getting worse, and that was that..This year I went back to digging shellfish, one of the most physically challenging methods of commercial fishing..It took a while to get in shape..it took about 6 months..but I have never since my dx in 2004 felt better, or walked more normally

Having a back problem certainly can compound getting enough exercise..I hope the physical therapy helps..And being rid of stress is a must..Stress brings me down every time I let it get the best of me

Meds:..

Sinemet CR 50/200 x 3

7 am, 12 pm, 5 pm

Mirapex .5 x 2

7 am, 12 pm

Best of luck Howard