My Introduction - ProudParkie2017 (my PD story)

[ProudParkie2017]

I have never officially introduced myself on this site though I have replied to other posts and chatted with a few people in the 7 years I have been here. I had posted my PD journey on Word Press, Facebook and Twitter over the years. I finally compiled my entire PD story together on Word Press to make it more accessible.

Hi! I joined this site right after my diagnosis in November of 2017 at age 46 as my 25 year marriage was coming to an end. At the time, I still had 2 children living at home! They are now all adults and are the light of my life. My kids and my new husband help me walk each leg of this unknown journey.

I am a math professor and I love my job And I’m hoping PD will allow me to work for at least 12 more years!

I have 2 uncles and a grandfather who had diagnosed Parkinson’s and my mother displayed many PD characteristics before her death at age 63 from blood clots. I have tested negative for all current known genes.

My neuro people are through the Ohio State University and are the best team I could ask for.

I participated in the neuraly trial in 2021 that made me sick for 3-4 days every week. I was on the middle dose of the drug though saw no benefit.

I was on Annovis buntanetap from January 2023 through July 2023. I saw a significant improvement in most of my symptoms, many of which I am still experiencing a year after ending the drug. I was on the 10 mg dose and am excited about OLE in January.

Michael J Fox calls Parkinson’s the gift that keeps on taking… In some ways that’s my motto. I have learned to live because of this disease. I know that tomorrow is not guaranteed to anyone so I’m going to enjoy every moment to the fullest. My additional motto is his quote from his documentary, Still, where he says “I’m tough son of a *#%!”

My Story: proudparkie2017.wordpress.com/

[Grumpy77]

You have a fighting spirit. Keep on inspiring others

[MarionP]

So did your symptoms return to baseline after your 6 months on buntanetap?

[ProudParkie2017 in reply to MarionP]

It’s been interesting because there are some things that are worse like my tremor but some things that are still improved like my arm swing. For me that’s been a positive because it keeps me motivated to walk which I’m sure helps everything.

I see my neurologist every six months and I’m staying pretty steady at this point. My levodopa meds have been steady for the past year and a half.

My biggest complaint right now is that the tremor starts to kick back in as my meds wear off.

[00Mark in reply to ProudParkie2017]

Adjuncts such as Opicapone can help extend the meds, but you probably know this.

Thanks for sharing your story.

[MarionP]

Okay. Well the reason I asked is because a lot of people have been hoping that buntanetap works out. As I imagine you know of course, in experimental work it's very convenient when you have one thing added to a very stable or known situation and, for an relevant reasonable time, even with a very small n of one, some significant or durable change is perceived or measured, then stopping or withdrawing that thing for a reasonable period of time is followed by that change returning to its "pre-thing" state suggests the possibility that that "thing" was responsible for, or played a role in, the change, or its addition to the pre-change regimens was enough to possibly result in the change or cause some states to change sufficient to result in that change. It's called a "reversal" and can be a very handy bit of information..

.

Your situation could be a kind of informal reversal on your buntanetap intervention. If your change was substantial or material, and the changes went away after the stopped the trial, and if you're particularly sure you were in the active molecule side of the study, that would be really interesting. The bigger the change or the more helpful it was, even better.

.

Buntanetap was somewhat disappointing in its 6 months data as discussed during its last major open Annovis call, the research director suggested they might approach FDA for an extension in order to try to merge or extend that data into a longer 18 month trial to see if they could render the picture to appear a bit more effective. Sometime since then it was announced that Annovis was doing an 18 month trial, though I don't know if it was extending this data or starting a new trial, if they had the money and the time they might try to do both if FDA were to concur, otherwise they might try to extend the current data so as to not have lost its potential costing less money and time than a brand new trial. Now if you happen to be in a group that not only ended at your 6 months, but after some measured time, restarted under measurement, now that would really be nifty.

[SAGoodman]

Thanks for the official intro Proud Parkie2017!PD definitely gave me a much different perspective on my life, and especially what was important also, thanks again for sharing!

[qazwsx11]

Right there with you!

Every once in a while, after I try to explain the experience of PD to a friend, and two sentences into my three sentence 'elevator pitch' they loose interest, my wife and I look at each other and ask ourselves: Imagine if MJFF did not exist??

[peminc]

I like it; this story. Is OLE Open Label? What is the E for?

[peminc]

Also, re Annovis, 10 mg per day, eh? How long to feel effect?Do you have a balance or posture issue or Gait?

Is my understanding correct that you still feel som benefit?

[ProudParkie2017 in reply to peminc]

OLE = Open Label Extension. I just heard that it should happen in March 😊😊😊

I was on 10 mg. It took a month or two on the drug before I noticed much change. Zero side effects which was nice because I am the side effect queen. I started moving and feeling better which allowed me to exercise more, which probably helped with the improvement. My biggest issues pre-trial were stiffness (rigidity) and slowness (bradykinesia) and some tremor. My movement improved and is still better than I was pre-trial. My tremor has increased since the trial ended. I don’t know why I am still seeing improved movement, but I’ll take it 😜

[peminc]

If given a chance to up the med dose to 20 mg, would you?

[ProudParkie2017 in reply to peminc]

I am not sure how the open label extension will work other than I know that we will be definitely on the drug. I’m guessing it will only be one dose, but I don’t know for sure. I would absolutely do a higher dose because I had absolutely zero side effects and I usually have side effects with everything.

[peminc in reply to ProudParkie2017]

You should listen to the Annovis End of Year review from yesterday. It's been posted to YouTube. You can access the recording here: youtu.be/NA3kCUZZIpI(Not working as expected?)

Good luck! Keep us posted.

[ProudParkie2017 in reply to peminc]

I sat in on it yesterday!! I’m excited to go back on it!!

[LagLag37]

Will it be expensive? 🥊

[ProudParkie2017 in reply to LagLag37]

No idea. I’m really hoping it will be reasonable or insurance will cover.