Dramatic improvement in walking
 

I have had PD for 4 to 5 years. These years have been marked by stiff walking, no arm swing, shuffling to some extent. I am on 4 carbidopa/levadopa pills per day. No other meds. For some reason my walking has improved over the last couple of months dramatically. So much so that my husband said if I lost my right hand/arm tremor no one could know I had PD. My massage therapist noticed it. When I walked down the hallway at the office, my neurologist kept smiling at how "loose" I walked. With an UNINTENTIONAL arm swing. The arm just started looking like a "normal" arm. I am completely at a loss as to why or how this is happening. I KNOW that PD causes a slow decline and does not improve. I keep trying to think if anything changed....diet, exercise, etc. but I can't think of any explanation. Has anyone heard of this....dare I say....type of remission??? It FEELS so good to walk normally again!

KNPV,

I'm pleased that your walking is improved.

Can you put some numbers on your walking improvement, e.g. time to walk a mile?

Does your walking ability change much during the drug cycle from "off" to "on" and back to "off" again?

Interestingly, my GP noticed a lack of arm swing on my first presentation, but in spite of this my walking has been almost unimpaired, even 12 years post diagnosis. So, for instance, I can walk at 4mph. I used to be able to keep at this speed for 3 to 4 hours, but now I'm getting dystonic pains after 6 or 7 miles.

You say that the improvement started about 2 months ago. Was this when the weather improved? I perform better in the summer.

I think one could use a brain plasticity argument to suggest that the more you repeat an action the lower the unit cost of dopamine that is required. I find that I walk well even when I'm "off". However, things are different with my arms: my side-to-side tap test scores are greatly affected by my position in the drug cycle.

I don't see my PD as relentlessly deteriorating on all fronts at the same time. For me, one symptom comes to the fore and gets worse for perhaps a year before it stabilizes. But, this is followed by a new symptom, or by an extra deterioration of an old symptom. For instance, my present worst symptom is constipation. Until now, I've had very little pain from my PD, but this is gradually beginning to come to the fore.

John

Thanks very much. When I say my walking improved I mean that when I just do "normal" walking (not "exercise") I am loose. Just relaxed walking, even if a bit brisk. I go to a massage therapist every other week and he was amazed. Said my pelvis, legs, etc. were all relaxed and not rigid. Compared to my walking these last 4 or so years which was rigid and stiff. He said my trapezius muscles used to feel like "bricks." Now they are soft and relaxed. As to "on" and "off" issues, I don't seem to have on and off periods. It's always the same. I can take the Sinemet and feel the same an hour later or three hours later. I don't seem to "freeze" at all. The weather here in south Florida doesn't change a great deal season to season. I miss sweater weather! I would love it if I could wear a sweater a few times a year rather than once or twice. I still do grocery shopping and zoom down the aisles. I still drive. It sounds like you have shifts and changes in your symptoms so I guess I am pretty "ordinary" in that regard. I used to nap every day or two but now I don't nap except for perhaps once a week or so. Thanks for your reply!

tomorrow the skate board!!!
 

Dear KNPV,

How refreshing it is to read your post! I would suggest reading Janice Walton- Hadlocks' several publications. Recovery From Parkinson’s She identifies chi flow patterns typical in idiopathic PD as "rebellious" ....when this pattern corrects rigid soft tissue softens like jello which I too have experienced this in my shoulder towers although for me it comes and goes.. (she uses a very gentle touch technique called Yin Tui Na to achieve this). John Coleman (author of "Stop Parkin' and Start Living" recovered from Parkinsons' and he used a form of massage therapy called "Bowen' technique. Perhaps your massage therapist is helping you ! I am so happy for you!!!!!!!

It has been my experience that some of the pd sx I experience have resolved such as stooped posture, some of the arm rigidity but not all and foot drop (thx to a chi gong method called arrow and bow walking I used to develop new neural pathways). PD has NOT been a consistent decline - I feel on some level like PD teaches me to slow down at times - get intentionally into gear at others along with countless other lessons in humility and judgement. As I am able to integrate these the sx don't capture my attention so much.

Why take the med if it does not make a difference? Personally I look for every opportunity to reduce my med.....currently 1/2 pill of 10/100 sinemet + 1/2 tsp. mucuna powder 3X/day (yesterday only twice!!) also currently homeopathic causticum, black seed oil, vitamin C and papaya enzyme. Working in my garden seems to take my focus to a place that allows me to release pd memory pattern grooves in neural pathways.

Good Luck and Kind Regards!
MD

Thank you for your info! In fact I have read Janice W.'s book a few years ago, and I will revisit it. I am going to slowly cut back on the carbidopa/levodopa as well. I have not tried Mucuna powder yet either. I guess I really am slow! I do get around to things but not too quickly....having nothing to do with PD. I just turned 70 years old. I used to be an avid gardener in PA, but now live in south Florida and we have pygmy rattlers and coral snakes in our yard so I avoid anything that is not screened in. The closest hospital that has the antivenom is two hours away so I don't mess with that. Thanks again!

Moondaughter, one more thing....my massage therapist is "into" ChiGong. It's an hour from me so I can only go once every two weeks, but I do KNOW whatever he is doing it is helpful!

KPNV -jjust curious :) ..does your massage therapist work on your stomach and abdomen? This practice is known as chi nei tsang.....very very potent. Also, Janice Walton -Hadlocks' work has evolved and she has presented some new findings...you live in south Florida? nice.... I know of a very good therapist there that works with light therapies.

Kind regards,
MD

No he does not work on my abdomen or stomach. I will ask him about it. Thanks! South Florida IS nice but not in hurricanes. The last one I was in was Wilma at 130 mph winds. Hope we don't have a repeat. I watched out sliders actually BEND! Didn't know glass could bend.