this forum is not user friendly for people experiencing cognitive decline

[progranulindefect]

i just typed a long intro- where'd it go? very frustrating and cortisol-producing. but beggars can't be choosers. this post will be short.

i have a low risk of AD according to 23andme, but have a higher risk for frontotemporal lobe dementia (ftd) because of my prograulin defect.

i want to start some interventions combined with self-assessments using data as opposed to depending on general feelings about daily functioning.

has anyone done something similar? if so, what did you pre/post test? number of mistakes typing within a given time frame? accuracy in reciting 7 digit numbers backwards?

thanks.

[SusanJ]

Hi Pro, welcome to our group.

Sorry about the delay, but we have been spammed in the past and now require approval for the first 3 posts. We are all volunteer run, so the first posts sometimes take longer than expected.

Sorry to hear about your situation. Many of us here do experiment with changes in diet and supplements, so I'll invite them all into chiming in for how they experiment, and how long certain effects take to show up on tests.

[RichardS]

progranulindefect,

Welcome. I hope you can find some good information and support here. There are a lot of smart and caring people here.

Your question about self-assessment is an important one. I don't think we have a solid recommendation for this. If we were to rely on subjective responses, they are confounded by the potentially poor memory we are trying to measure in the first place, and other factors like day to day anxiety and anxiety specific to cognitive performance itself. For objective assessment, options span for online tests of highly varying quality to in person testing with qualified psychometricians or neuropsychologists. The online tests are very alluring because of the ease of access and typically lack of cost. Unfortunately, most of them are not validated with solid research even if they seem on the surface to look like they should be reliable measures. Seeking a trained person to test you is, on whole, the most reliable, but there is the cost, access challenges, overall hassle factor and difficulty in testing as frequent as many would like.

As a first step, I would suggest you simply write down your observations on a regular basis over time. It won't be a comprehensive list of memory or other cognitive failures, but it should give you some insight as to how things might be changing over time. There are basic phone apps with pop-up reminder that are helpful. It does not need to be anything fancy or specific to your situation. The other benefit is that when you discuss your situation with health care providers, you can call up a record over time to help you more objectively recall how you are doing. Of course, tracking such changes as you start, stop or change interventions (meds, supplements, lifestyle changes, etc.) should be noted so that you can see more clearly possible cognitive effects. Just be sure not to jump to conclusions about changes based on only a few data points. Try to be patient even if your are venturing into a temporary "freaking out" stage.

If you have the resources and are concerned you may already be experiencing cognitive problems or are simply at high risk, a visit to a neuropsychologist or dementia clinic would be a great way to determine your current status and set a baseline to more precisely detect changes in the future.

I am not familiar with prograulin so can't comment on that.

Finally, frontotemporal lobe dementia is not often specifically addressed here, but many of the lifestyle interventions focusing on sleep, exercise, a whole foods diet that keeps you insulin sensitive and reasonably lean, stress management, positive social connections, keeping your brain active, etc. can be powerful ways of fostering brain health.

[progranulindefect]

thanks for your ideas, RichardS. I did have my daughter tested for a learning disability for about $3000, and they did it in one day over a period of hours. i can do better in some ways because i will take multiple readings over weeks and months. i can take multiple readings and average them for my pre/post tests . i'm not interested in spending a lot of money. the ftd neuropsychologists really have nothing to offer anyway.

[RichardS]

I suspect you are correct that the neuropsychologists won't offer much in the way of treatment for ftd. What I was thinking is that having a baseline of cognitive testing makes any future testing much more powerful. This is especially important for those on the far ends of the intelligence spectrum. In the context of tweaking various interventions that we do here, observing subtle differences can drive one crazy trying to figure out if it is from natural variation, the intended treatment or some other important variable in one's life. It does not have to be $3,000, but the cost of cognitive testing with a trained professional will be significant if insurance does not cover it well.

One problem with multiple readings of online tests is the practice effect which may mask declines or give you false hope for an intervention. Some tests are more prone to practice effects than others. Someone trained in cognitive testing is supposed to be skilled in evaluating practice effects. Sorry to be such a downer on the online tests. I trained as a neuropsychologist and want to make sure you understand the benefits and costs with tracking things with professionals and on your own. Keep us posted on your progress.

[progranulindefect]

I have to say that bottom line is i'm cheap. and it improves my quality of life (ie makes me happy) to play neuropsychologist and devise my own tests.

"One problem with multiple readings of online tests is the practice effect which may mask declines or give you false hope for an intervention."

One test i want to do is writing the abc's with a mouse. I do this during the school year when I make activities for the kindergartners I teach. some days i can make nice, strong, straight lines. i have very good hand-eye coordination or whatever skill is needed to do that. other days i write shaky like my grandmom used to sign my birthday cards. so i don't think there is a practice effect involved in writing the abc's with a computer mouse or i would be writing nice, straight lines every day. i'm interested in doing interventions that will reflect in stronger lines vs wavy/jittery lines because i think writing stronger lines may also reflect thinking stronger thoughts.

i don't think trying to say back a 7 digit number backwards once a week will get much of a training effect if i only do it but once a week.

i might have already put in another post my ideas for testing myself, i don't remember, so i won't continue with my ideas. i am very motivated, though, because i don't like the look on people's faces when they can't believe i am repeating myself. it gets me angry and frustrated. it also makes me worry about keeping my job.