It's been quite a while since we asked if anybody is having success with slowing progression, holding progression at bay, improving symptoms, or reducing meds.
If anybody is having some success, and feels like sharing, please let us know about your success and what you think is contributing to success.
Thanks, Bolt.
Citicoline (1000mg/day) - introduced last Oct or Nov (I think) - remains the standout success story about these parts.
My mum's gait and walking capacity is markedly better now than it was last Sept.
Sinemet 25/100cr down to 2 or 3 tabs per day from 4.
sciencedirect.com/science/a...
researchgate.net/profile/Gu...
garygjs,
Can you answer the following questions please?
1. How long did it take for citicoline to effect the changes in your mom?
2. Did she try other dose levels?
3. Did she have any apparent side effects?
Thank you!
Art
1) Within a day or two.
2) I'm pretty sure we started with 1000mg and have - rather unimaginatively - stuck with it. (I started with a rather fancy version..Cognizin..and have recently introduced a cheaper effort available through Amazon uk which seems to be working just as well.)
3) Zero side effects, best I can tell. Safety is discussed here, pg4:
balafive.com/wp/wp-content/...
Cheers.
Thank you for your quick reply!
I have one other question. In studies using citicoline in PwP, it is often mentioned that the Sinemet/Levodopa dose can be reduced by 50% with the potential to increase the long term response to levodopa in its various forms.
My question is, how did you determine how much to reduce her dose and when did you do it?
Thank you!
Art
Having introduced the citicoline, I noticed that she was becoming flushed, a little agitated and, perhaps, a touch dyskinesic (a thing she had never suffered from) after the third and fourth Sinemet doses of the day.
I reduced the Sinemet and that agitation etc went away. Frankly, it seems to make little difference whether she has 2 or 3 Sinemet tabs per day.
I did try stopping the Sinemet altogether but her functioning suffered very obviously.
(Worth noting here that mum has never had classic ON and OFF episodes. Her functioning slowly deteriorates in the prolonged absence of exogenous dopamine. She sleeps well and is revived by naps.)
Yes, in one study they found that keeping levodopa at a reduced dose and adding citicoline produced better symptom benefit that using levodopa or citicoline alone.
So basically you started to see levodopa overdose symptoms and then reduced her dose approximately 40 to 50%. It isn't proven yet, but this levodopa sparing effect of citicoline is thought to potentially lengthen the long term effectiveness of levodopa or extend the time that the patient will be able to use levodopa effectively to treat their symptoms.
Any other benefits that you would attribute to the use of citicoline in your mom besides the improved gait and walking capacity?
Art
Excellent! Thanks for sharing!
please tell us about the timing of taking Citicoline. Does she take the Citicoline along with sinemet dose or some time apart
First dose (500mg) at c. 10.30...30/40 mins after her first dose of Sinemet.
Second dose (500mg) at c. 19.00...30 or so mins before her third dose of Sinemet (if I give it).
Of note: Mum is at her most physically capable at c 18.30 each day, 30 or so mins before her second citi dose.
My feeling - possibly wrong - is that timing is not absolutely critical here. Citicoline appears to provide neuroprotection through a number of mechanisms...is more than a mere fuel.
I'm now 18 years post diagnosis. Still on the same meds as 7 years ago: 5x75mg Stalevo; 8mg ropinirole; 1mg rasagiline per day. The good news is that I frequently walk 10 miles in a day. The bad news, is that the last third is often in pain: dystonia, Pisa syndrome, side ways lean, backache. Apart from the effect mentioned above, walking is a big help to me.
That's great to be on the same meds for 7 years. Is there a secret to your success?
I think it likely that the major cause of my relatively slow progression is due to genetics. But, nevertheless, PwP do have agency, which I seek to maximize.
I have already mentioned walking. I would add that my drug regimen has been designed to reduce the variability of levodopa and levodopa equivalent plasma levels. The ropinirole has a far longer half-life than levodopa with carbidopa (360 vs 90 minutes). I have no dyskinesia.
Given the advantage of it having a higher half-life, why don't I take more ropinirole and less Stalevo? I find the quality of the ropinirole induced "on" to be lower than the levodopa induced "on". There is also the danger of higher levels of compulsive behaviour with the agonist.
Yes, I have completely reversed my symptoms of stage 4 PD and early stage MSA.
It took years, was very hard work and involved changing everything in my life - attitude, lifestyle, food, relationships, activities.
But, 28 years later, I am still free form symptoms at 80 years old.
The story is too long to be published here (the brief version is 12000 words) but can be found in "Shaky Past" and "Rethinking Parkinson's Disease" - both available on Amazon.
Just curious what was the changing relationships about? Thanks
I realised that some of my close relationships were actually quite abusive in a subtle way.
I either managed to change the way I related to those people to allow my voice to be heard and opinions honoured, or walked away from the relationship.
A few years later, I reconnected with most of those I had left, but established the relationship in a way that honoured my health.
Thanks for reply i find aspects of my family toxic they know how to press your button,however i dont want to fall out with them difficult
Yep, it can be tricky. One of the main strategies is to make sure we care a lot for ourselves and understand our worth.
I found counseling, EFT, meditation, visualization and flower essence therapy all helpful in this.
I like how you think. You have to put the work into this recovery. Not that people who are not recovering are not putting the work in. I hate it when the sick are blamed for being sick. I just like this holistic approach. As they say, mileage may vary.
Thank you so much for sharing John! I see your book is at my local library. I will be heading over there today!
I look forward to your frank comments after reading 
Shaky Past is only $3 on Kindle! Got it! amazon.com/SHAKY-PAST-John-...
The proof is in the pudding!
I have been on and on about fast walking and everybody is sick and tired of me talking about FAST WALKING!
So! why is the proof in the pudding?
Over the past five or more years I have had several other health problems requiring hospital visits. The side effect of all these other health problems, at the age of 88 is that I have not been able to keep up the fast walking. So What? Well, as it happens, my PD symptoms have returned with a vengeance. My feet scrape the ground as I walk, if I am not concentrating on what I am doing. My right hand trembles badly and I am unable to write or type too well. I have had two falls but was not badly injured because I rolled over as I fell.
I am only able to walk for 1.5 kilometres at present, but an slowly increasing the time, hopefully back to one hour, but my body is not what it used to be and my knees are gib=ving me problems. At 88, what do I expect?
So, not doing much FAST WALKING has set my health back quite badly. I have not given up yet, although the temptation to do so is very strong!
For those of you doing the FAST WALKING, just keep it up and hang in there!
Good luck.
Hang in there John and keep up your spirits. I'm never sick of hearing your story and it inspires me to keep walking.
Thanks! It is always my pleasure
Thank you John! You have helped so many people. I am praying for your recovery.
I hope I make it to 88. Good for you.
Thanks! If you are doing the fast walking you stand a good chance of getting there!
John
Mr. Pepper, please know I am cheering you on from the USA. You are one of my heroes.
Hi John,I’m my wife’s caregiver who was diagnosed in 2015. She noticed early on when in an off episode and had the freezing gait, she could however, walk backwards. We never understood that phenomenon until I saw your information about consciously thinking about your movements. I assume you have to consciously think about the act of walking backwards because it’s not something you normally do. That showed me you know exactly what you’re talking about and deserve a huge amount of credit for what you have contributed to this wonderful community. Ignore the naysayers and hater’s. You have inspired and enlightened us and made our lives better. Thank you so much and please don’t ever give up.
Prayers for you, John. Thank you for inspiring so many!
what is Fast Walking ? Is it just what it says or is there a special knack do you use a stick or poles sorry for sounding dumb and would slow jogging bring the same effects ?
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