I Have To Be Honest

[Farooqji]

I Have To Be Honest

perkyparkie.com/2023/07/i-h...

[Jmellano]

great blog, thnx for sharing.. I can totally relate to what she is saying. For me, pd is a disease of loss… the simplest of things we could always do easily without a second thought (like tying shoes or getting dressed without putting things on backwards or inside out) are all lost. I mourn those little losses just as much as the big losses like training like an athlete, being able dance like I used to…

[gomelgo]

What if we were all to be perfectly honest here? I would llove that so much. Even more honest than we already are .... Also I wonder if she is taking the meds.

[Jmellano in reply to gomelgo]

R u wondering if I am taking meds? Yes, I have been on meds for several years, I feel like crap on them and feel like really bad crap if I don’t take them. I suspect I am treatment resistant

[Esperanto in reply to Jmellano]

You may not be taking the right dose? After all, overdose doesn't really feel right either. And I would like to point out again, without wanting to be sexist, that women (on average) benefit from 50% of C/L medication compared to men.

[Jmellano in reply to Esperanto]

My mds is pretty good with meds. I was on c/l IR until he put me on rytary. On c/l IR I had so much off time by the time a dosage took affect (taking 5x per day) my on time was minimal. I had bad akathisia on c/l in my off time

[Esperanto in reply to Jmellano]

That makes the situation very complicated and painful... Fortunately, you have a good neurologist.

Still a (probably superfluous) advice. Given the relationship between akathisia and vitamin B6, but also the interaction between B6 and PD medication, it may be advisable to have your blood tested for your B6 value if that is not already done. Always wise with PD anyway! In any case, I wish you all the best 🍀

[Jmellano in reply to Esperanto]

Thanks Esperanto, funny u mention B6, i am low normal;3.0, lab range (2.1-21.7). i am taking a b6 supplement and will test againin a few weeks

[Esperanto in reply to Jmellano]

Of course that's not entirely coincidence😉 B6 deficiency is a big underestimated problem with us PDers. If the neurologists have a B6 test done immediately when diagnosed, it could prevent a lot of misery. The interaction with carbidopa can strengthen the problems with B6 deficiency. That seems to be the case with you, so your medication probably doesn't work properly either. With the necessary supplementation with B6, make sure that you choose the P5P form, stay at least 2 hours before/after the C/L intake and also watch out for overdose. The consequences of this were just as bad for me as the deficit. I'm testing myself every 3 months now and it seems that some kind of balance has only been found after a year. At the time I posted a few times about it and the comments may also be valuable to you.

healthunlocked.com/cure-par....

[Farooqji in reply to Esperanto]

Thanks for sharing your valuable experience. BTW which type of complications were you facing bcoz of b6 deficiency

[Esperanto in reply to Farooqji]

Of course you are not really sure which complications are due to PD and which are to the vitamin B6 deficiency. But I hereby express the suspicion that the PD may have been caused or triggered by the severe B6 deficiency. The almost equal development of a peripheral neuropathy (PN) confirms that picture. Unfortunately, we will never be sure because my first test was only done a year after the diagnosis. From that test came an extremely low B6 value, almost nil. My complications were too serious for a novice PD, which started with a barely visible vibrating of my little finger from my left hand. In addition to the rapidly developing rest tremor on the left also problems on the right side, involuntary jaw movements, sleep deprivation, emotionally very unstable, constipation, rapidly deteriorating memory, impotence, very frequent urination, significant weight loss, etc. All PD related, but these symptoms almost all disappeared after supplementation with B6!!! The neurologist had only responded to the deterioration with an increase in the C/L medication to 5x 20/200 Sinemet IR. and even that turned out not to work anymore. To make a long story short. I've experienced a kind of awakening. The fog that was over me, without me realising it, suddenly picked up within 2 weeks. I literally came back to life. My C/L medication is after a small relapse due to B6 overdose, so that all symptoms came back, now even below my initial dose with 5x 5/50 Sinemet IR 🙏

However, the PN was already too far developed within that year and seems irreversible. It's my biggest problem right now.

[Jmellano in reply to Esperanto]

Interesting that I am starting to see an occasional tremor on my left pinkie. I d believe my pd was triggered by emotional trauma, my life partner died by suicide and 7 months later, I was diagnosed with pd, I don’t think my pd was related to b6 deficiency. Thank u for ur encouragement. I am so burned out and desperate for relief from my symptoms. I hope b6 can make a difference

[Esperanto in reply to Jmellano]

You have had a very difficult period. To also have to trade your PD seems debilitating to me. 🍀🍀

[Jmellano in reply to Esperanto]

It has been quite a journey, that is for sure

[Jmellano in reply to Esperanto]

If I could bother u Esperanto, how long after your start of b6 supplementation did your symptoms subside?

[Esperanto in reply to Jmellano]

After a few days I felt better, after 2 weeks most of the symptoms disappeared and after a month, during a car ride, the veil fell off me and I could suddenly really see the world again.

[Bolt_Upright in reply to Esperanto]

So are you thinking early intervention with B6 could head off full blown PD? Interesting if that were the case.

[Esperanto in reply to Bolt_Upright]

For everyone, it is important to have a balanced B6 level. For people with Parkinson's, this is often a problem as many of us have a deficiency in B6. On the other hand, it is common to see people taking (excessive) supplements as a precaution, which can lead to an accumulation of B6, particularly in the toxic pyridoxine form. It is possible that B6 supplementation with P5P can work wonders, but only if you are certain, after testing, that you actually need it.

[Jmellano in reply to Esperanto]

I am on P5P, however, I need to allow 2 hours or a meal between taking my rytary and P5P. I take rytary 7am,11am,3pm and 7pm. I am thinking I should take P5P at 9pm. I know lab ranges can be bogus and what may be in the range for one person is ‘normal’ yet for another , it may be abnormal. My most troublesome symptoms are bradyk, depression, apathy, severe fatigue, muscle weakness. I am starting to notice some numbness in my second and third toes of my left foot. (Neuropathy?)Left side is bad pd side. I would also like to see the answer to the question farooqji had

[Esperanto in reply to Jmellano]

Good to read that you immediately tackled the problem. Your schedule seems fine to me. However, I would take the measured B6 value seriously. It is just too low! The possible consequences will indeed be different for everyone, but from the description of your symptoms I suspect that your medication just doesn't work properly due to problems with your B6. The risk of peripheral neuropathy is perhaps also present in you, but luckily if it is PN, it would be in an initial stage. However, it is atypical that the PN manifests itself unilaterally, as usual with PD. You may recognise something in the comment to Farooqji written above. I wish and hope for you that you will experience a similar improvement!