Hi everyone. I’m about 7 years in now and doing reasonably well up until recently when the notorious ‘shuffling’/stutter steps made their grand appearance. I loathe this symptom and feel such a prat as I mooch about the house looking like God knows what. But my question is this: why do the vast majority of my symptoms disappear when I take levadopa yet this one remains? I’m a little puzzled by this phenomenon and wondered if the community had any thoughts? Thanks 🙏
Shuffling and meds : Hi everyone. I’m about... - Cure Parkinson's
Shuffling and meds
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jeeves19
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Hi , have you thought about contacting a specific neuro physio? John has been working with one , once a week for about a year now she has improved posture balance straight line walking , and best if all for John he can now run 5k 😀
I’ve been dealing with the same issue. I’m also 7 years since diagnosis. I’m doing great using high dose B1 and a list of ever changing supplements plus exercise,etc. But for the past 6 months I have been experiencing stutter steps at doorways, when I am startled (car comes around corner when out walking) or when carrying groceries into the house. Mostly I’ve treated them as curiosities but recently I tripped but caught myself before falling as a result of my feet freezing.
The interesting thing is that I only experience this when I am taking Sinemet or Mucuna Pruriens. I usually only take Sinemet or MP until early afternoon and I never experience freezing before taking first dose or later in the day after last dose has worn off.
I have recently started taking B6 (P-5-P) at night thinking that the Sinemet may be depleting my B6. It’s too early to tell but I don’t think I have had any freezing lately so maybe it’s helping.
Im pretty sure that if you take a b6 supplement you're defeating the point of Carbidopa, which is to prevent b6 from peripherally metabolizing L dopa into dopamine and allowing more to reach the brain. But if it makes you feel better then never mind me!
B6 is essential. See here re how to avoid disabling carbidopa:
healthunlocked.com/cure-par...
The Hinz protocol.... I have mixed feelings about that .... why is it so controversial? Is it really true that Carbidopa increases "the death rate "? Why has so much effort been put forth to discredit Hinz? Big pharma conspiracy?
I do not have answers to these questions. My point in the writing at the link is it suffices to leave a two hour interval between taking vitamin B6 and C/L.
Thanks PB. I know you already know this and I don't want to beat this to death, but I want to mention to the group that in the Hinz protocol, B6 is a cofactor and it is taken at the same time as mucuna L dopa, NAC, & 5HTP+ everything else found in neuro replete. (Neuro replete can be found on Amazon under the name 5htp supreme, it's identical.) Of course, there's no Carbidopa, but the amount of mucuna taken for l dopa is a lot more than in sinemet. The funny thing is , you start the protocol by taking the prescribed amount of nac and neuro replete, plus increasing amounts of Mucuna until you get extremely nauseous. Then you increase the mucuna just a bit more till the nausea goes away and the Parkinson's symptoms abate. Typically this will be more than 16 mucuna capsules a day. Sometimes 20, 30 or more!
Jeeves my bro, I've been shuffling more in recent months as well and I'm at about the 7-8 year point myself. I did physical therapy and it is still an issue. All I can tell you is try to consciously keep your toes up. I'm not sure how much that will help. I still drag my feet anyway. It's due to extreme tightness and stiffness in my lower back , posterior leg muscles. All the stretching in the world doesn't do enough. Very frustrating!
Stretching often seems to make sense Bass but whenever I do it, I always seem back to being tight the next day. I kind of get disillusioned to tell you the truth! 😂
I’m in a similar situation- aged 58, 6 years in, not doing too badly except for the shuffling and freezing and consequently falling over. Can’t play tennis anymore though I keep trying with unfortunate results.The only thing that has helped is ironically reducing the meds. For a while I was topping up with madapor and was on a high dose of sifrol.
Has anyone else found this symptom gets worse with sifrol?
I’m now trying CBD oil which is possibly helping but jury still out.
I am 72 years old and was diagnosed in 2013. I have problems with ‘shuffling’/stutter steps, with the voice and memory. If I take Sinemet on empty stomach - it improves my balance and steps (gait) almost by 100 %, but makes my speech terrible, if I don't take Sinemet - my speech/voice is OK. I have to balance: If I need my voice understandable (a Zoom meeting, for example) I don't take Sinemet for a few hours before the meeting; but if II need my gait looks fine - I take Sinemet 30 minutes before. I don't have a similar technic to address my memory problem. btw - I take 2-3 Sinemet a day (or mucuna), B1 - 2 gr, and everything else (a long list 
I am having the same issues I’ve had Parkinson’s for about 20 years, I have been on meds for 13 of those years, and I too have discovered that reducing my sinemet helps but…..Also when it comes to the shuffling, I try and be mindful of lifting my feet up more when stepping, kind of like marching, and with the freezing, I will hum or turn to the side and then step. There are canes out there that have a laser light on it to shine in front of you which helps the brain to re engage, breaking that frozen cycle. Blessings
jeeves19 in reply to
20 years eh? You deserve a medal my friend. Thanks for sharing your experience and hang on in there. 👏
JAS9 in reply to
Good tips! I've found that it's worse when there is little light, so I wear one of those headlights to light up the floor and obstacles ahead of me. Of course, crowded floors and entering rooms seem to be the worst. BUT I get in this condition only when I'm NOT on my meds. If I'm late taking them I have to be extra careful.I was reading an interview with MJ Fox, and even he fell down and broke his arm 2-3 years ago. If I had his money I could afford to put handrails everywhere! He did say that he has to be sure that he has thought everything through; where he's going and (important for me) which foot is going to be dominant and move first.
Also, I read somewhere that walking from one room to another can be a problem. This happened to me once and I fell over. The only time I've actually fallen. The theory is that non-PWP brains normally would"map" a new space, even if it's not really new to us. It figures out the obstacles and subconsciously creates a path through them. We have to do it more consciously.
Jeeves,
If you haven't tried Citicoline yet, this systematic review may interest you relevant to this discussion on slowness of movement, rigidity, cognitive decline, motor function, levodopa dosing and Citicoline has shown memory benefit in other studies :
sciencedirect.com/science/a....
Here are quotes from the review that are relevant to this conversation :
>>> ' Citicoline adjuvant therapy has positive effects on the improvement of motor function, delay of the progression of cognitive impairment, and reduction of bradykinesia, rigidity, and, to some extent, tremor in patients with PD. Citicoline also has a levodopa-sparing effect that allows the delay in initiation of and reduction of required dosage of levodopa therapy, thereby reducing the levodopa-associated adverse effects. Furthermore, citicoline had negligible adverse effects. ' <<<
>>> ' Consistently, improvements also caused effective 50% reduction of dose of levodopa. In addition, scores on the drawing test improved in 26% and 36% in both treatment groups, respectively.9 The handwriting test scores improved by 13.5% on day 15 and by 19.7% on day 30 (P < 0.05) of citicoline treatment.8 The time to walk 10 m was also reduced by 8.1% at day 15 and 17.5% at day 30.8 All these improvements were statistically significant. ' <<<
Art
in reply to chartist
Art, my Dad is 83 with stage 4-5 pd. He just started Citicoline (he is unaware of this) and he has definite improvements!
jeeves19 in reply to
😊
chartist in reply to
Very good to hear that about your dad, ccr! At such an advanced stage(4/5) any help seems useful.
Art
What quantity to take Art?
The range I have seen used in various studies is from 250 mg/day up to 2 grams day. In PD studies I have seen 1500 mg typically used in three divided doses of 500 mg each for a total of 1500 mg/day. I have seen at least one study that used 1000 mg/day for PD, but 1500 seems to be the norm for PD. I reported a study the other day that used Citicoline for glaucoma that used 250 mg/day. The reason for that post is because PwP are at increased risk for glaucoma. Here is a link to that :
healthunlocked.com/cure-par...
Art
The Citicholine is much more expensive than the Choline which is predictable eh? Do you sense any virtue in the latter or is it the former that is required?
Sounds awesome Art. Thanks 🙏 . But maybe too good to be true? I’ll look into it though for sure.
Well, I guess it depends on how you look at it. It does not make these problems go away, it only helps to reduce the symptoms to varying degrees. There are a huge number of studies regarding Citicoline and if you look at them you see they are all positive results when it comes to PD, cognitive function, traumatic brain injury, glaucoma and more. If you notice in this systematic review that I linked to, positive results started to show at 30 days. I can't speak for anyone else, but if I had PD, I would definitely give it a 60 day trial given its very good safety profile. There simply doesn't appear to be much downside to a two month test, but there certainly seems to be potential upside. I don't know what it would cost to do a 2 month test, but I am sure it is well under a hundred bucks.
Art
Jeeves,
One other thought looking at the rest of your life picture. If Citicoline has these CL sparing effects that might be an important consideration as the nature of CL seems to be that over time, more is required to maintain the effects that it offers until eventually the effects may diminish to a point where CL is no longer able to maintain the benefits at even higher dosing. If Citicoline can further delay this process because of its apparent CL sparing effects, that would be another useful feature to consider. On the other hand, it is just a theoretical idea since no very long term studies have been done to prove or disprove this theory and those length of studies are highly unlikely to ever take place.
Art
Walking can be something that needs brain attention. Teach your body [sometimes talking as you walk] Take big steps, pick up your feet. Finding a tune you really like and walking while listening to it or singing. Pick a catchy one with a good beat and make sure you are swinging your arms and moving to the beat. Have someone walk with you can help too. Some people like to tap a leg with your hand to the beat. Good to find signals and command your body to do what you want. Sometimes , walking with hiking sticks helps people. If you can't figure it out get a coach....check out this website
Here is site neurochallenge.org/I couldn't get it to copy to my reply
Have you tried taking Vitamin B2 (Riboflavin) - There was a trial and participants saw benefit sustained over months with improvement month-over-month. I am giving my mother 50mg dose, 3 times a day. Her walking improved a LOT and whatever initial shuffling/ freezing she had is almost gone now. Saw improvement in less than 3 weeks of taking the dose. No side effect; only yellow colored urine and that is to be expected. ( Very difficult to give 4 doses, 6 hours apart for each dose as in the trial, so I am giving 3 doses, but 50mg instead of 33 mg, every 6 hrs.).
Please note that I am just sharing info. Not a doctor and should not be taken as advice.
This is very interesting John. It seems that the B vitamins play an enormously important role when it comes to PD. I’ll look into it. Thanks very much for the suggestion.
And have you tried the B1 on your mum?
Yes, currently givingon a daily basis : B1, B2, B5, B6 and B12 and True Niagen too. Plus Ginger juice, Lemon juice, NAC, Acetly -L-Carnitine, DMAE, Vitamin D, Kefir, Omega3 & Saffron
Oh to be rich enough to be able to afford Tru Niagen John! 🤔😂
I know; it is costly. The stock market has been kind to me over the years. LOL
Does she sleep well? I find the B vitamins interfere with my sleep but I might be talking myself into that.Sounds like B2 might help my falling.
She sleeps really well and better than me once she goes back to bed. I can hear her snore for good 20-30 minutes before I sleep. She gets almost 2 sessions of 4 hrs. of uninterrupted sleep during the night, with a break in between.
Riboflavin plus getting rid of Red Meat in the diet.
pubmed.ncbi.nlm.nih.gov/145...
scielo.br/j/bjmbr/a/BM4WLJB...
ncbi.nlm.nih.gov/pmc/articl...
John. These figures are amazing. Why isn’t B2 up there with Thiamine B1 in terms of power to ameliorate symptoms? This should be taken seriously by clinicians. Any danger in large amounts of any of these vitamins?
I skip all the vitamins except Riboflavin (Vitamin B2) during the weekend. No vitamins on Saturday and Sunday. That way the body is getting a break. (No exercise/walking for her on Sundays either). Other than that, I give the usual dosages during various times of the day ( early morning 6.30am, 9.30am, 11.00am 2.00pm, 6.30pm)
Please bear in mind that I am not a doctor. Intent is to share information. Hope it helps.
Kefir Plain 1% fat - not Strawberry or any other flavor(Lifeway Brand) - 125 mg and diluted adding 100 ml of water. Just once a day and has other vitamins mixed as indicated below; given at around 11.00am after I do physical therapy for my mother for 35-40 minutes.
Saffron - just a pinch, not much; 5 grams box is good for 20-25 days.
(mixed with Kefir)
B1 - (As Thiamin HCl): 500mg x2 capsules at once
(mixed with Kefir)
B2 - (The Vitamin Shoppe Brand) Riboflavin - 50mg x 3 times for a total of 150 mg
(1 dose mixed with Kefir, 1 dose mixed with water and 1 dose mixed with Ginger Juice)
Tru Niagen : 300mgx1
(mixed with Kefir)
B5 - (now brand)Panthethine 600mg, 1 capsule with water
B6 - (Thorne company) Pyridoxal 5 - Phosphate : 1 Capsule - powder - 33.8mg
(mixed with Kefir) ,
B12 -(Sams Club Member's Mark) MethylCobalamin : 5000mg x1 with water
Vitamin D (Sams Club Member's Mark) : 125mcg (5000 IU)
( with water, combined with B12)
NAC (now Brand) - 1000mg x1 ;
Crushed and mixed in water 250ml along with the two supplements listed below - all given at around 9.30am)
Acetyl-L-Carnitine (now Brand) 500mgx1
(crushed to powder)
DMAE(The Vitamin Shoppe Brand) - 130mgx1
(crushed to powder)
Ginger Juice extract from raw ginger using water in a blender : About 100-125ml with half squeezed lime juice and a pinch of salt; Given at around 6.30pm along with her PD medicine after I make my mother walk for at least 30 minutes
PD medicine given at 6.30am; 11.00am, 2.00pm and 6.30pm ( each time -1 Extended release CL 25/100 and 1/2 Normal CL 25/100 )
Very comprehensive profile there matey. What’s the aim though? It seems to be a ridiculously rhetorical question but I notice that your mum is still taking quite a bit of CL? You must presumably have a goal In mind for her and I imagine a reduction in medication would be part of this? How long has she been on this regimen John and - other than the reduced shuffling that you mentioned ( and what a tremendous result eh? Not an inconsiderable achievement by any means), what other benefits have there been or is it too early to say? Thanks for your generous support and insights btw . 🙏😊
I am trying to see if I can reduce her CL dose and also slow the progression of PD - trying to buy time, so that in a couple of years if she does not deteriorate much/further, and if there is a cure or some medicine that can stop the progression of the disease, then she will be ready and benefit from that. She has been on this regimen for almost 5 years now, with some supplements like Saffron , B2 being recent - a few months, and then Ginger since 5 years, NAC, B1 and other B Vitamins since a couple of years .
Benefits - she has improved in the strength dept. a lot; ginger stopped nausea; her constipation is more or less gone. No more shuffling/freezing; She can walk for good 30 minutes without a break - walks straight and at a decent pace. Good sleep - wakes up once, and very rarely twice to pee in the middle of the night but goes back to snoring mode immediately; has good appetite. But she is still adamant and does not want to walk - LOL.
Simple goal - but very uncertain and time is not on her side given her age and the disease as such.
John,
Have you ever considered Citicoline for its potential CL sparing potential among its many other PD useful effects?
Art
No not yet. Will have to stop a few supplements that I am giving, before I try it out. Already giving her quite a few. May be by summer, I will try that. Thanks for the tip and will do my research.
in reply to John_morris71
Chartist is right. Citicoline is very beneficial and it is very safe. If you research what Acetylcoline does in the brain you will want to supplement with the precursor Citicoline. My 83 year old father is taking it.
John_morris71 in reply to
Will give it a try.
John_morris71 in reply to
Is Citicoline that is available in Vitamin Shoppe good enough? Or are you using any other brand?
Your input is appreciated.
vitaminshoppe.com/p/jarrow-...
in reply to John_morris71
Some sources are Thorne, Jarrow and nutricost. Expensive but trustworthy. I do no trust most supplements. I used to.
Best of luck. Sadly I don’t think there’ll ever be a g CT cure. I think it’s too multi factorial and systemic.
At least it they can stop the progression and get rid of some symptoms, I will take it. Keeping an eye on Anavex Life Sciences that is conducting trials.
You’re very kind and compassionate to do all of this for your mum. Good for you 😊
Just doing my duty - that is the way I see it. Compared to what she has done for me starting from carrying me in her womb, putting her needs last and mine first every time, etc. I am doing nothing.
I am trying different things hoping that some change in her microbiome will benefit her and improve/reduce some symptoms. Also using a Red light helmet on her head twice a day; wrapping a Red light belt around her waist twice a day. Looking for that one spark that will make her better - not a cure though. (Needle in a haystack!)
Some of my relatives think I am overdoing it and a bit crazy - LOL, as I am always reading about PD or trying to do something extra .
I never felt that the red hat did much for me actually John. I’m hoping that your combination might bear fruit. The thing with me and the micro biome theory is that I’ve never felt bloated, am hardly ever constipated and in the bowel area have never felt discomfort which generally- from what I’ve read - are the sorts of things you experience if all is not well in this area. 🤔
I received mine in the post today 😊👍
I’ve been diagnosed 8 years now. I find I shuffle when going to the toilet during the night. Also when I’m carrying shopping in and squeezing past things. I try to stop in case I fall (not so far but nearly) My toes curl when I’m “off” which also makes me shuffle. It’s horrid I agree. But if I make myself pause and deliberately try to lengthen my stride it’s manageable.
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