Cognitive Decline Worries

[SAGoodman]

I apologize in advance if this has already been discussed in other posts (I searched and couldn't find anything related).

I have been living with PD for only two years, just diagnosed this year.

I am very worried about cognative decline as I run a training center and teach/ train for a large company.

I have been getting extremely tired throughout the day, and having a hard time retrieving info from my brain at times, an example would be not remembering the name of some common thing.

My PD is tremor in right arm, but I have been able to get it under control though the following supplements;

CoQ10

D3

Dopaboost

HDT

B12

Have shifted my diet to high antioxidants also.

Does anyone have any advice on getting my mental sharpness back?

[chartist]

SAG,

Here is a link to a good friend of mines story and how she was able to fully reverse her memory deficits which you may find interesting :

healthunlocked.com/cure-par...

Art

[SAGoodman in reply to chartist]

Chartist Thank you! I read some of it this morning!

[pdpatient]

Hi SAGoodman, sorry to hear about your memory issues. I do hope that you get relief by following the supplement protocol that Art has provided you in his link.

I would like to share some ideas as well as my personal experience with memory issues. First off, Parkinson’s patients are all different, and manifest different symptoms in different ways, but one symptom/marker that has been well studied is cognition/memory. It’s pretty much measured by elaborate tests that they can do to assess the severity of your cognitive decline if any. You might want to see a neuropsychologist with focus on Parkinson’s.

I would doubt that you have any decline per se based on what you disclosed here and I say this from my own experience. I actually had a much more severe psychotic problem after I was diagnosed and I felt like I had a complete decline of short and long term memory. I could not even remember the names of my favorite anchors on television. I was devastated and I wept at my doctor’s office, wailing about my misfortune. The doctor kept saying that it was all temporary and it was directly a result of extreme anxiety emanating from the emotional response to my diagnosis. I didn’t believe him.

Long story, short, I was so deep in my “well of devastation”, that it took a combination of Klonopin, Seroquel and Paxil and two years to quell my psychosis and paranoia.

The diagnosis affected me particularly hard because I happen to have what is known as “eidetic” or photographic memory. I could memorize entire books back in my younger heydays. You can imagine how devastating it was for me when I could not recall a single credit card number or passport number or social security number for any of my family members or myself. Yes, I had everything memorized or rather shall we say “photographed” and stored in my memory. I thought I had lost it all but thankfully the doctor, a MDS, knew what he was doing and treated me accordingly. Today, I am as good as gold as far as my memory goes and according to my evaluation, only a minute decline after almost 10 years with the disease.

I can understand how you feel about your diagnosis and your perceived memory loss. Honestly, from my layman’s perspective, I believe that you are experiencing anxiety issues which is probably affecting you. I told you my story because it is important to understand that while a Parkinson’s diagnosis can consist of a variety of different symptoms, you really don’t get hit by the entire train at the same time. Things move very slowly in idiopathic Parkinson’s and the general rule of thumb is a notch down every 10 years or so. I have been told this by multiple, very senior MDS doctors and is also borne out by my own experience.

So, relax, let go of your anxiety and make an appointment ASAP with a neuropsychologist. Good luck and I hope this helps.

RKM

EDIT: I am glad that so many of you have liked this comment/post and I guess this has to do with the fact that I disclosed the results of my cognitive test (3 hours long) at UCSF. The fact that I have seen very little or no deterioration of my cognition should be heartwarming to anyone reading this. Parkinson’s is really a sloooooow progressing condition.

However, I must warn the reader that I cannot say the same about motor symptoms and Levodopa. My strong opinion is that it is more so Levodopa than Parkinson’s. Just FYI.

RKM

[SAGoodman in reply to pdpatient]

RKM, thank you very much for sharing your testimonial, and you are right with the fact I am not really taking my diagnosis well. My wife laughed when I told her the one major question I asked the doctor was if my intelligence would be affected, which really crushed me.My "smartness" has been one of the only things I pride about myself, and thinking of losing it is profound...

I definitely have had terrible anxiety, loss of sleep, cant stay asleep when I do etc...

I appreciate everyone in this group and really appreciate the knowledge, as I am in unknown territory for myself..

[grower in reply to SAGoodman]

I'd like to echo pdpatient's story and recommend trying to ease your stress and work on improving sleep, neither of them simple tasks but if you can your brain will feel relieved and treat you better I found.

[Bolt_Upright]

I recommend anything Art says.

Coincidentally I was about to stop taking Lion's Mane and some nice people here challenged my decision which made me do some searching. Lion's Mane is back on my supplement list:

2019

Post-Treatment with Erinacine A, a Derived Diterpenoid of H. erinaceus, Attenuates Neurotoxicity in MPTP Model of Parkinson’s Disease

mdpi.com/2076-3921/9/2/137/htm

The present study demonstrated that HEM and its ethanol extraction of erinacine A treatment exhibited preventive and therapeutic actions in the restoration of dopaminergic degeneration as well as motor dysfunctions in a dose-dependent manner. Our study firstly demonstrated that post-treatment with erinacine A could reduce MPTP-induced neurotoxicity via activation of the PAK1, AKT, LIMK2, MEK, and Cofilin survival pathways, as well as reduction of the IRE1α, TRAF2, ASK1, GADD45, and p21 cell death pathways in N2a neuron cells and in an MPTP model of Parkinson’s disease (Figure 9). Accordingly, erinacine A may be a potentially valuable neuroprotective and therapeutic agent that could be used to improve pathological conditions and behavioral deficits during PD treatment.

The Effect of Hericium Erinaceus Mycelium in Non-motor Symptoms of Parkinson's Disease

clinicaltrials.gov/ct2/show...

2020 - Hericium erinaceus Mycelium Exerts Neuroprotective Effect in Parkinson’s Disease-in vitro and in vivo Models

researchgate.net/publicatio...

Conclusion:

In conclusion, we have used cell culture and animal models to

demonstrate the neuroprotective eect of H.E. myceliumin the PD

model. Our results indicate that H.E. mycelium increased the cell

viability of the MPP+ treated cells and performed in a very eective

antioxidative eect in vitro cell culture model using PC 12 cells. In vivo ,

H.E. mycelium exerts signicant neuroprotective eect by increasing

the dopamine level and the activity of tyrosine hydroxylase (TH) in

mice striatum. To sum up, our results suggest that H.E. mycelium

performs signicant protection of dopaminergic neuron under severe

conditions and is very eective in the treatment of damaged neuron in

the brain to recover in the case of Parkinson’s disease.

[LAJ12345 in reply to Bolt_Upright]

What’s with all the planes and trains? Have you got travel on your mind🤣.

Ah, one plane = f and a train = ff. Cracked the code!

[Lizzy9 in reply to Bolt_Upright]

Hello Bolt ~ What was the deciding factor to keep Lion's Mane? I am trying to decrease my husband's "stack" and Lion's Mane was on the "Delete" list.

Thank you ~ Gail

[gwendolinej]

Hi there, my husband had great success with mannitol. See my post.

Also the infrared coronet has helped some members. See zella23 for one. ..an ongoing story.

Gwendoline

[GymBag]

Sag, have you tried Levadopa ? works for me.

[SAGoodman in reply to GymBag]

No not yet, slowly trying to figure iut what I need/ dont need

[Juliegrace in reply to GymBag]

SAG is taking Dopaboost, which is l-dopa derived from mucuna.

[LAJ12345]

What is your diet and exercise like?

[SAGoodman in reply to LAJ12345]

Exercise is pretty light, running and resistance bands throughout the week. Overdid it at first and wore myself way down, trying to balance it out and increase as I go.

[SAGoodman in reply to SAGoodman]

Oh amd diet is high protein, low carbs. With addition of foods high in antioxidants.

[LAJ12345 in reply to SAGoodman]

Lots of vegetables and good oils? Lots of leafy greens? Olive oil, nuts and seeds? Not too much red meat and dairy?

Cut sugar out of everything.

Have a look a Ari Whitten’s podcasts as there are many really interesting ones on here on energy and mitochondria.

theenergyblueprint.com/podc...

He has this supplement too which we haven’t tried as postage to New Zealand is too much.

store.theenergyblueprint.co...

But look at the individual ingredients in it as he runs through the benefits of each for energy. My husband takes rhodiola rosea now which Ari recommends for energy.

We use Hardys daily essential nutrients with added vitamers to make sure we aren’t lacking in any vitamins or minerals.

hardynutritionals.com/produ...

[Missy0202]

My situation is similar to yours. The loss of words mid sentence, or forgetting people's names or places I frequent, was getting me down, and creating more stress. It perpetuates and just having "regular" conversations become slightly anxiety provoking. A wise physiotherapist I saw told me to stop focusing on it, which is what I try to do..... When the neurologist asks you to come up with as many words that start with a certain letter in a minute, and you can only come up with 20, then you do the same exercise at home and you come up with double or triple, you can ease your mind There are several supplements that help, which you have already been introduced to. I also have the duo coronet which I believe helps me.

[kaypeeoh]

I've just started this book. The theme seems to be using tools to keep memory functional. I'm paranoid over my memory. One neuro says I have problems with executive function. Another neuro says I should surrender my driver's license. My wife agrees with them. She is worried if I crash she'll be sued. But I don't see a problem.; I can fill crossword puzzles all day. I can agree I'm mentally a bit slower than I used to be. All that tells me is I should avoid city driving. But I've been doing that for 30 years.

I'm looking into Vielight near infrared treatment but want a bit more info before spending $2000.

Ever since college I've used pneumonic devices. One doctor said remember three words, pencil, ball and floor. Then spent an hour distracting me. Then asked me to recall the three words. I had visualized a pencil bouncing a ball off the floor. When she asked I had the image in my memory and spouted the three words correctly. She was amazed because almost nobody can remember all three.

There was a segment on the morning news, ways to keep from getting lost. He used a map and compass. And a website that trains you to recall cues while on an unfamiliar road.

[LAJ12345]

I’m wondering about citicoline. webmd.com/vitamins/ai/ingre...

It sounds useful for mental decline and dr mischley recommends it I think?

[Hidden in reply to LAJ12345]

I believe she recommends choline but Citicoline is a better form.

[Ewalt in reply to Hidden]

A doctor who my husband who has PD and me go to has both of us taking Citicoline twice a day.

[Ewalt in reply to Ewalt]

My husband with PD and I have both been told to take this supplement.

[Hidden in reply to Ewalt]

Informed doctor. That is refreshing. Did they recommend anything else?

[Ewalt in reply to Hidden]

Yes, prescription form of Omega 3 (purest you can get is the prescription form).

[Woofie123]

I sympathise with you, having lost my small media business in the same way, except it caused by a stroke not PD ( also have alongside a diagnosis of mild Parkinsonism). The risk that I wouldn’t reliably guarantee the quality my output was enough to close down my one-person operation.If you want my opinion, if you’re seeing a prospect getting through this, getting a healthy amount of would sleep the first line of defence. I started taking magnesium to get a good hight’s sleep, then after a few weeks 8

weeks sleep became into a habit. It worked for me, but you’ll find your own way.

Bless you, hope this helps.

[SAGoodman in reply to Woofie123]

Thank you so much for the information. Could you tell me what form of Magnesium you're taking?

[kaypeeoh]

I take all of those plus Rytary and had no change in the tremor. No idea if it is helping cognition.