How do I deal with neurologic deficit pr... - Cure Parkinson's

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How do I deal with neurologic deficit problems?

kaypeeoh profile image

I had the one-year neurologic evaluation done last week. I thought it went okay.

The doctor's report says otherwise.

What to do about neuropsychological problems. Specifically low average working memory, below average encoding. And what does exceptionally low retrieval, below average work list recognition, confrontation naming and semantic verbal fluency mean?

TIA,

kpo

39 Replies

This may help :

healthunlocked.com/cure-par...

Art

JCRO profile image
JCRO in reply to chartist

This may help too:healthunlocked.com/cure-par...

JCRO profile image
JCRO in reply to JCRO

The use of B6/Folate/B12 coupled with Omega3 is entirely consistent with Laurie Mischley’s recent findings that show better outcomes for PWP. That and LO and liquid Glutathione, both mentioned repeatedly on these pages. So use the search box! 😉

Discogs_discogs profile image
Discogs_discogs in reply to JCRO

What is "LO"? Also, is "liquid glutathione" even sold as a product? If so, what is the name? Thanks.

JCRO profile image
JCRO in reply to Discogs_discogs

Lithium Orotate.

Quicksilver is one brand of Glutathione. Google it.

Liposomal glutathione is the way to go, otherwise it will not get past your digestive system and you are wasting money. It is expensive, shop around, don't bother with any pills. Needs refrigerated, Aurora sells liposomal packets 750mg per serving.

NAC is the precursor that helps your body produce glutathione. I believe it needs to be taken on an empty stomach, may be less expensive.

glenandgerry profile image
glenandgerry in reply to JCRO

Apparently the page you linked to no longer exists

kevowpd profile image
kevowpd in reply to chartist

Are you sure that this even a little bit applicable in the case of PDD/LBD/DLB or even PD-MCI? I note that your friend is not a PWP.

PDD (etc) is not simply "senior moments".

MarionP profile image
MarionP in reply to kevowpd

Sorry, do you mind defining your acronyms, I don't know exactly what the hell you were talking about and I would rather use clear language at least once, thereafter you can use abbreviations. Thank you.

Have you ever discussed exelon/revastigmine with your Drs?

kaypeeoh profile image
kaypeeoh in reply to kevowpd

I'm on memantine and Rytary.

Half the population must be below average. Do you know what you used to be? Maybe you would have always scored below average ( I can’t read the full paragraph at the top that probably says.)

MarionP profile image
MarionP in reply to LAJ12345

No, "half the population" is below median, not below average.

For example, 2 people 6 feet tall and 2 people 5 feet tall equals an average of 5 ft 6 inches, and is also wrong in describing each person in the population by a whopping half-foot. Using "average" to describe someone or something often leads to maximum error if you are attempting to actually convey something true and accurate about individuals...it is not at all what you are probably trying to get at, which I am guessing is to describe a "typical" item. Again, "average" is a statistic that can lead to typically "maximum error." Not exactly helpful if the skill you're trying to measure is, say, remembering the way home or where you are. And it's really unhelpful if you were trying to measure the your ability to, say, walk in pants or fit into a shirt.

On the other hand, your bit about the person's historical measures is totally a critical point. The other day my doctor was giving me an examination and told me not to worry, the work on my legs would greatly improve their status and not take away from any of my former skills. So I asked him if I would be able to dance the tango and mambo. He said "of course." I responded "that's funny, I never could before."

It also matters what you were trying to do. For instance, I am 10 in taller than my wife. I can place a teacup on a shelf that is above her ability to reach. At 4 ft 11 in, she is far below average in height. She is too short to reach it. So whatever her height is, it's not enough to do what she wants to do, which is reach the cup. On the other hand, at the same height, she is more than tall enough to kick me in the shins for putting the cup beyond her reach. So this is called context in activities of daily living. Average means one thing in one situation and another thing in another situation or task. Context matters not just ones relative ability. I can't do my taxes, I'm worse than terrible at it. But I don't need to, I have money to pay somebody who is above average at it, and I know how to write a check, even if I may be below average at writing checks. Context matters.

Grumpy77 profile image
Grumpy77 in reply to MarionP

I'm scratching my head now... I have to go back to revise my secondary school maths to remind me of the difference between average and median

LAJ12345 profile image
LAJ12345 in reply to Grumpy77

Median is the one in the middle s 1,2,4,5,5,6,7 5 is the medianAverage or mean you add them up and divide by the number so 30/ 7

Mode is the most common which is also 5 as it is listed twice and the others only once.

I would suggest that even though the report doesn’t mention numbers they use average based on the number of people who are better or worse so I expect the might mean median. Or else they give a numerical score to a task eg 4/10 or 9/10 and take the average of the scores. In which case they really do mean average.

LAJ12345 profile image
LAJ12345 in reply to MarionP

Yes I am well aware the difference between average and median so half being worse is just an approximate thing (I won’t go into various types of distributions) but my point just is if you are below average at something there are very many other people who are also below average. It’s normal to be on a continuum with a pretty even split of some who are better than average and the rest who are not. The main thing that matters as you point out is how much worse you have got.

In the report above the use of average seems to suggest they are using average in a mathematical way rather than as a subjective measurement as you describe.

MarionP profile image
MarionP in reply to LAJ12345

That's nice, but not the point. You are reading and interpreting a professional report. Are you an expert professional report consumer? Such that the casual reader should credit your pronouncements and interpretations with that level of credibility and thus responsibility and acceptance of possible professional levels that support being held responsible for professional and legal liability for how the words you write or interpret or used by people who read your comments and take them without critical examination of you? Professional report authors write to (because they have to and know it) the highest standard for other scientists not lay, naive, or intermediately prepared observers. Professionals writing in professional reports are writing for other professionals and because the results are "official," obliging the writer to have to achieve professional-level scrutiny and expert credibility, because those results are expected to be used and held to professional and legal accountability for being used. But they still have to use a great deal of the same everyday words we all use...running the risk of temptation by every reader to assume and interpret as if she actually knows and uses them with circumspection required to achieve professional level reliability and limits, and responsibility for how the report may be used if based on its actual contents, prepared to answer for professional and legal liability. It's not casual. If that's not a point that you get, thinking instead it's only about casual conversational arm wrestling, and thus have to have the difference explained to you, that's probably because you're not qualified to interpret it in the first place. Those who are have been trained to automatically be aware of and incorporate and adjust for their own limitations (including not being sensitive about them, since everyone has 'em), and so don't typically bring them up in the first place. In addition, anything you write here should be addressed to all potential readers, since they are going to read these results as well, not just the immediate conversant. If you're anything besides those professionals, you must start by defining and narrowing down any commonly used terms that typically may mean many things. You didn't, and you used the term average such that it could very easily mislead someone into misunderstanding what the writer said. Perhaps you didn't even know it or whoever it was who said average didn't know it. But you're using the contents of a professional report, which is something like using a scalpel... Doing so can be dangerous and requires a certain amount of training to reduce the possible harm of misinterpretation by whoever might rely on what you say. When you're dealing with professional results you have to be that careful... And that is the point.

kevowpd profile image
kevowpd in reply to MarionP

Why do you write so much to communicate so little?

MarionP profile image
MarionP in reply to kevowpd

Evidently you don't like what you don't understand. Please don't take potshots at me about you not wanting to bother learning things or help others. You would be better off helping people instead of insulting people, don't you think? Let's ask the moderators.

kevowpd profile image
kevowpd in reply to MarionP

Let me know when you are done with the edits.

MarionP profile image
MarionP in reply to kevowpd

Well son, sometimes one has to articulate exactly in order to be taken seriously and not be taken errorneously. And then there's your approach...who do you think you're helping? Anybody? Do you think telling people what to say and what not to say does anyone any good? Does it make you feel better to attack someone? Is that why?

kevowpd profile image
kevowpd in reply to MarionP

For someone with a long and documented history of making derisive remarks about the contributions of others ("are you smoking your socks"), it's hilarious that you have wound up so insulted by my question. I thought you had thicker skin than that.

As for calling in the moderators, you've complained about Helen undertaking basic moderation so many times I've lost count. She's a dictator and all that. You literally called her a "control freak" on one occasion for simply telling people to drop politics as a topic. Now you are calling in her services? The temerity. Of course, you're now also saying "Do you think telling people what to say and what not to say does anyone any good". Really seems like you want free reign but the rest of us should he bound by the rules.

Regarding my contribution, I've actually asked KPO an on-topic question in this thread. As opposed to paragraphs of pointless pedantry - everyone knew what LAJ meant.

I suggest that you ask that doctor if there are any supplements or medications that he recommends you take.

Exercise in the brain is said to work to improve or maintain Cognitive ability. I was told to read books, play games like crossword and Sedoko , maybe put a zig-saw puzzle together, play games on computer , many are very good and are free. Start something that you can create. I am about to build a wooden rowboat. It may never get finished, but thats why I did not do it 10 years ago. I also took myself out of the role as main decision maker in the family (something I should have done 40 years ago)

So you could not remember Flower. Truck, Elephant, Garden , Baseball and House

Big deal dont worry about it.

MarionP profile image
MarionP in reply to GymBag

Right. Not just ask what supplements etc to take, but ask what else can be done to improve the situation or forestall decay.

would it not be wise to ask the people who tested you what the test results mean? And since you have a low memory, maybe you ought to bring a recorder.

kaypeeoh profile image
kaypeeoh in reply to MarionP

My wife comes with me for doctor's appointments. Her 'steel trap' memory is as good as a tape recorder.

Unfortunately for us PwP, PD impacts on our neurons negatively. I don't even need a neurologist assessment for me to know that I've declined below average levels cognitively

I also need urgent help... its really scary

Aside from supplements, my doc recommended BrainHQ brain exercises online (subscription). They can be kind of fun, can get a bit boring but she says there’s science backing them up. Also exercise and preferably mixing it up, not always the same thing.

Also, look up Bredeson protocol.

join the pd club.....hang tough.

I tried photographing the last two pages,

photo 2

Seems that PBM (photobiomodulation), also known as red light (and near infrared) therapy, shows some promise in helping brain functions:

pubmed.ncbi.nlm.nih.gov/304...

"Conclusions: Our findings support that PBM may enhance the frontal brain functions of older adults in a safe and cost-effective manner."

While I don't have a Coronet helmet that others speak of, I sit in front of a small PBM panel (shown below) 20 minutes a day to treat the frontal cortex. (I also treat the back of my head, and my belly.) Based on this study and others, I choose to believe it's doing something good!

Hooga Health red light panel.

In a similar not not quite under the same circumstances as you we encountered testing. A few weeks ago my husband who has PD and myself joined a research project looking for bio markers that might show early indicators of PD with Gene testing. We arrived at the hospital, researcher waiting for us, took us for blood testing - at least 6-7 phials each!

This was followed by psychometric testing, similar to the test above. We definitely weren’t expecting this. It was quite a long process too. Draw a clock, cube etc remember these words, subtract 7 from 100 and keep going. Say these sequence of numbers backwards. Quite a lot more questioning. Then after all this testing recall the words spoken earlier. It so puts you on the spot and what appeared to be easy 30 years ago doing my psychology degree took on a different angle!

I used to be able to remember 7 + numbers and recount them in reverse order she gave me 3 in the test and I did manage it, just.

I was aware I made a mistake counting backwards and then that put me off doing the other tests as I kept trying to fathom out where I went wrong!

My husband was fine on it all in fact his working memory is good, only thing he found difficult was remembering one of the words she had given us initially.

We were tested separately so couldn’t give each other the heads up!

We both take supplements but my husband additionally uses a Red Light hat and has for over a year now. I think it helps.

WinnieThePoo profile image
WinnieThePoo in reply to Zella23

You should try counting backwards from 100 in 7s

in french - which I had to do at my SPARK trial appointments

Of all the stupid ways to say a number

quatre-vingt treize (4 20's 13)

quatre-vingt six (4 20s 6)

soixante dix-neuf (60 19)

soixante douze (60 12)

soixante cinq (it settles down a bit after here)

Zella23 profile image
Zella23 in reply to WinnieThePoo

I couldn’t have coped with that! I m usually good at maths but I knew I d made a mistake then couldn’t change it!

Photobiomodulation uses red or NIR light to stimulate healing and regeneration in tissue. The primary chromophores are cytochrome c oxidase in mitochondria and light/heat gated ion channels. Both mechanisms lead to generation of reactive oxygen species that can activate transcription factors and may act as an exercise mimetic.

An external file that holds a picture, illustration, etc.

Object name is nihms921441u1.jpg

For an article on Photobiomodulation I Tried to "CC" this page including a color cartoon showing a mitochondrion being bombarded by NIR while increased ATP was being secreted. I tried reading the entire article but found my 'minor' in organic chemistry was not up to the task of understanding the various acronyms used.

But the article mentioned a rat study that showed NIR treatment of the skull of rats with PD were improved.

"The Semantic Verbal Fluency (SVF) test entails the generation of words from a given category within a pre-set time of 60 seconds. " I thought I did okay at that.

For Confrentational naming I drew a blank on naming a beaver and only got it while describing how they live in underwater warrens and warn others of danger by slapping their tails into water.

My suggestions would be to concentrate on the emerging evidence for neuroplasticity. Develop your own plan using a "pick and mix " model to get some neurons firing along new pathways.

The salient first principles are:

New activity so that you use different functional skills: like doing somethng you have never done before.

Choose something with a physical and mental component and enjoyable That naturally relaxes you !

Examples: if your main form of exercise as an adult was cycling or running choose something else like walking. If possible make it golf which then introduces other coordination and proprioception stimuli.

If you walked before ; possibly as a veterinarian you may have lived and worked in outdoor areas with a certain amount of walking around farms, stables , kennels etc.

Try City wallking but navigating yourself to a new area of interest.

Can be as simple as tracking down a new cafe/ deli serving a fun fad like Himalayan pink tea. Dont just use Google Maps. Plot the easiest walking route by checking on an old fashioned street plan map and memorise it.

Once you hit the streets start lookig for the streets signs, panic a little bit but persevere. You dont have to live within the City.

(for sometime I lived just outside London, but once a week I would take the train into London, and then walk from a Central station hub . I did similar evening trips when the layout looked different in the dark)

In my case I have started ballroom dancing classes as I have never danced before. Last year I did yoga (which I am still continuing but also modifying to add features from revisiting anatomical function); the year before that I explored Feldenkrais techniques.

I believe this approach works better than brain stimulating cognitive exercises.

Why do I think it works : my maternal grandfather who brought me up lived to 94 and was active until 6 weeks before he died of a newly diagnosed end stage gastric cancer.

My 88 year old mother , a retired academic started gardening in her early 70s and landscaped her garden. Now she has a few hundred orchid plants, an amazing kitchen garden and a posse of rose plants and a herb garden.

Both of them have not been PwP !

But I was diagnosed at 54 having ignored early symptoms since my late 40s (I am still a practising physician at 60). I have lived in this fashion all my adult life and continue to do. I even changed specialty at 55. This involved re training with some obligatory night shift work for 2 years.

I have a 66 year old cousin on my father's side who was also diagnosed with similar presentation when he was 54. My symptoms are more pronounced. but at comparable stages his functional level is far less than mine. We have similar medication regimes but he takes some anxiolytic medication as well. He has standard physical therapy and a supportive wife. He retired at 56. They live a retired persons lifestyle. I spend more time with younger colleagues. Often I am more resilient than them (in the years of the Corona reign)

What we have is different approaches to life; I am less risk averse and this makes me take on new challenges. The only supplements I have added to my regime are a modest dose of B1 (100 mgs per day; cant tolerate higher doses) and a low dose mixed B vitamin mix (maximum 70% RDA / recommended daily allowance). I have take 10 microgrammes of Vit D3 (400 i.units) since my 40s and increased it to 25 (800 units ) since I was 50.

I have not given up sugar or saturated fat but have always eaten a reasonable share of fruit and vegetables and whole grain foods but continued to eat some animal derived proteins.

Retrospectively it seems to have been a case where I have allowed neuroplasticity to work. This is just my perspective .

I am satisfied with the results so far ; atleast once I accepted the fact that this disease has changed my life for ever. I still miss not being able to enjoy the aroma of good coffee, or the bouquet of a good red wine and most of all I hate waking up with aching limbs and curling toes waiting for the Ldopa to kick in.

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