introduction

meezls4833 · May 27

Hi! My name is Richard. I'm 74, married, retired from remunerative employment as a lawyer. I was diagnosed with Centiloid middle-level Alzheimer's in early March. I had suspected as much, given prior diagnoses based on word-finding and certain other memory categories, but I am determined to live as independently as I can. Part of that determination includes evaluating which activities, events, and so on will, as Marie Kondo says, "spark joy."

While I know many (maybe most of you) have an Alzheimer's loved one and are looking for ideas and support, I sincerely appreciate that motivation. However, I guess that the people I primarily want to reach out to and learn from my fellow Alzheimer's people.

Accordingly, I have questions regarding: (a) leg cramps and how you handle them; (b) intermittent nausea probably caused by Donepezil; (c) how's your appetite? (mine is pretty robust, especially that my primary trigger for nausea is not to eat when I'm hungry, oddly enough) and (d) how independent a life are you living now? how do you do that? So far, I believe I've been successful generally but have failed to keep up with chores and honey-dos.

I guess that's quite enough for now. Thanks for reading this far. Best, Richard

Dneige89 · May 27

Hello, Richard. It's nice to meet you. I am 75 years old. I was diagnosed with mild MCI/Alz on December 1, 2025. I've had mild cognitive impairment due to Long COVID for 2 ½ years. I was getting worse, so I had my neurologist order a pTau217 and a PetScan. Both were positive.

I have pre-existing small nerve fiber neuropathy, which is getting worse. I don't know if it's related to my latest diagnosis. My neurologist prescribed Lyrica 25mg. Gabapentin is another medication that you can ask your doctor about for leg cramps.

I found Aricept and Galantamine made me nauseous. I no longer take either.

My appetite is good. Sugary foods are off the menu!

I am independent. I drive, handle my finances, and do other life chores. Things I am not comfortable with are large groups of people (social events), loud noises, and the heat of summer!

I am fortunate that I have shared a home with my son and 2 of his friends since the Covid lockdown. They are a great source of joy, as well as our 2 dogs.

I focus on brain training every day. NYT games, AARP games, reading, and socializing with my roommates.

I don't get as much exercise as I would like due to the neuropathy, but I walk my dog. Swimming is my summer goal. I've improved my diet, too.

Stay in touch! This journey is challenging with no off-ramp. I wish you all the best!

Debbie

GEH · May 27

Hi Richard

First off. Welcome to the club no one ever wants to join and secondly, It is not as scary as it might feel right now. I am 68 years young (lol) and I was diagnosed with Alzheimer's about 4-5 years ago. I live alone except for my sweet little cat. I have no blood relatives and I do have a group of very good friends who are my family. The first thing I would tell you is that you MUST advocate for yourself. Next find yourself if you, can a Neurologist that works at a Neurological/Alzheimer's Institute hopefully nearby your home town. Second is to suggest you read everything you can possibly get your hands on about the disease and all the different treatment options etc. I can only speak of my experience, but if you get a doctor that is not proactively working on your behalf, fire him/her and find a new one. If that one does not meet your needs fire them. Keep looking till you find a good match for you. Next try to eat at least semi healthy. Don't go crazy but veggies, meats fruits, whole grains, chicken, fish, etc. and occasional naughty things like ice cream (yum my fav), steak, barbeque ribs or what ever are your favs. Do some kind of exercise every day. Don't go crazy, 15 20mins aerobic daily (walking, riding bike or stationary bike, treadmill etc). Next, there are several drugs out there now that mostly help with the symptoms and a couple that I know of that actually help with removal of the plaque on the brain which is the bad stuff. I am currently on three drugs that help with the symptoms: 28mg Memantine 1x day; 24mg Galantamine ER 1x a day, Donepezil 23mg 1x day. Additionally, every two weeks I get an infusion of Leqembi that actually helps remove the plaque from the brain and it additionally removes the protofibrils that are the precursors to plaque. There is an additional infusion drug out there I think called Kinsula which I know little to nothing about but I am sure the peeps on this forum will be happy to chime in on their experiences with it. Keep your mind active and challenged. Do crosswords, puzzles, read a lot, paint, crafts, woodworking. Do lots of things that make you happy. And lastly I guess, just live your life and enjoy it. Best to you. GE

meezls4833 · May 31

Thanks for the great advice, Debbie and GE! Both of your messages are splendidly dense with on-point recommendations and I am grateful for them. Best of all is the reassurance that our journey doesn't necessarily need to be sad and difficult. When I first received the report discussing the medical team's findings, I was sad for about a day but by the next morning, I had awakened with a resolve to lovingly fold away my pity-party hair shirt and follow my instincts, that I have always been happiest when working on projects, a mix of personal passions and answering the calls for help. Sadly, my physical condition has prevented me (if only in my mind) from being more of a more physical animal (walking and weight work) than I was until recently. Your recommendations for nausea mitigation drugs better than over the counter stuff.

Well, I've "talked" y'all's virtual ears off. I'm sitting here, grinning like a cat in Alice in Wonderland thanks to, um, you guys.

Best, Richard

GEH · June 1

Richard…

Great attitude. Keep it up. You will have good days and bad. But I think mostly good. Keep us updated on your journey. We are all here for you.😊

GEH · June 4

https://alzconnected.org/discussion/comment/273742#Comment_273742

Hi Richard,

It has almost been a month since your first post. Just checking in to see how your world is going Hoping things are going well for you so far.

GE

meezls4833 · June 4

https://alzconnected.org/discussion/comment/274025#Comment_274025

Hi GE! Thanks for checking in with me. It so happens that I'm including your previous suggestions (and those from a couple of others here) in a message to my Alzheimer's medical team to get their opinions. Also on your suggestion, I researched the proximity of a Neurological/Alzheimer's Institute (it looks like the closest is in Arizona, nowhere close to Columbia, Missouri. So, I decided to find other places with Alzheimer's centers fairly close (120 miles down I-70, one east, one west, e.g. St. Louis and a Kansas City suburb) in the event that my medical team isn't performing as I need them to in my opinion.

For other aspects of my life as I'm living it now, I have great support from my wife Judy and her sons and grandsons. She and I go to the peewee baseball games to watch the grandkids and to kid-level soccer games where one grandkid plays in a league. I also participate in a senior citizen lifetime education and information (a local chapter of the nationwide Osher lifetime learning institute) for a nice mix of education, entertainment, and social outlet.

I'm also the person tasked with doing things like taking out the trash and recyclables, a moderately experienced home maintenance and minor repair person. I need to get back into moving my body; my nausea is abating week by week but it's still lingering around. I promise I'll go to the well-equipped city's activity and recreation center ASAP.

As for keeping my mind active, I do NYT Monday (easiest one) crosswords but I love Wordle and its Reddit group. To make things interesting for me and entertaining for the other folks there, I try to make simple (and hopefully, entertaining) sentences from the words I've guessed on the way to the target word. I'm a word person who loves the language, and also a retired lawyer, where I was the nerdy scrivener for judges and legislators. However, while I still have a fair fluency in the language, I still have the occasional wordfinding issue and when I can't find the word I want, I turn to duckduckgo to help me find it. and when that doesn't work, turn to the terrific thesaurus I keep on a rolling table, down here in my home office, where I am now.

So that's the report.

Thanks again for inquiring.

Richard

GEH · June 4

Hi!! I live in Arizona and would highly recommend Barrows Neurological!!! Even if you come for a few days or a week and have them do evaluation and recommendations and maybe get a good Dr. that you could do tele health with maybe OMG they are the best ever in their holistic approach to your diagnosis They look at you as a person and a human being going thru a difficult diagnosis instead of just diagnosis. They might even have accommodations for you while you are being evaluated. They take all kinds of insurance including Medicare etc. and they are a NOT FOR PROFIT organization. You have nothing to lose in giving them a call and talking to someone about your situation. I am on Medicare and they accept all payments from them as payment in full and do not charge me anything except for an occasional small copay. Before you absolutely rule them out I would highly recommend you check into them. They are the BEST!!! I went to a loser neurologist who strung me along for almost three years doing almost nothing to really help me. I go to Barrows and they Kicked Butt and Took Names.

My Neurologist name is

Yonas E. Geda, MD and I only see him about once a year but I go to his Nurse Practioner as needed and for regular check ups etc.

BUT His initial evaluation etc was like a whole day plus. All kinds of test, evaluations, labs etc. My Nurse Practioner takes care of most other things.

I love Wordle!!! I play it every day it is available!!!

I have babbled on enough for now. Be well my friend.

GE😊

meezls4833 · June 4

https://alzconnected.org/discussion/comment/274055#Comment_274055

Thanks for the GREAT information! In fact, I had come across Barrows Neurological's name in my research that uncovered the two Alzheimer's specialist clinics on opposite ends of Missouri. I'll do some more research on them, primarily to see if telehealth would be a viable way for treatment, although my wife and I love Arizona; we did a road trip to Tucson a while back because that's where she taught deaf education long ago, but wanted to visit friends there.

Regarding Wordle, do you post your results on r/Wordle? If so, my reddit name is cyrano4833. If you're not familiar with how to do it, start by making a copy of your game board on Scoredle, get a free Reddit account, then join the best, and mostly friendliest, Wordle players from around the world. If you know all this, my humble apologies.

Later, R.

GEH · June 4

Thanks for the Wordle info but it is sometimes hard for me to learn new things without assistance and i dont post my results. But thanks for telling me about it 😊

meezls4833 · June 13

https://alzconnected.org/discussion/comment/273357#Comment_273357

BadMoonRising · June 18

Hi, Richard. I had more than a few careers before reaching old age. Typical ADHDer. The first was as a nurse and the most recent was attorney.

I was diagnosed with Amnestic Disorder, (Mild Cognitive Impairment) in 2011 following two days of neuropsychological testing. At that time I was 59 years old.

In 2017, I participated in the IDEAS Study and the results of my Amyvid Pet Scan showed a very high level of amyloid plaques.

Several years later, I underwent another two-day neuropsych eval and the result was the same: Mild Cognitive Impairment.

I have been seeing the same neurologist since she first referred me for the IDEAS study. She is adamant that I do not have Alzheimer's Disease.

In the beginning, I was prescribed the usual drugs but had nausea with the first two and an allergic reaction with the third. Currently, I am drug free. ;)

I am fortunate in that I was able to seek advice from an NIA specialist at Johns Hopkins. He was emphatic that I may never develop dementia and attributed that to my level of cognitive reserve. He has since moved on, but I continue to educate myself about the latest info regarding AD.

Thirty percent of people with Amyloid plaque in their brains never develop dementia. I hope to be one of them.

meezls4833 · June 20

https://alzconnected.org/discussion/comment/273362#Comment_273362

https://alzconnected.org/discussion/comment/275185#Comment_275185

Thanks for sharing your journey so far and your suggestions. I'm truly glad for your good fortune and, I'm certain, yours and your medical team's success in forestalling dementia, and continued success.

By slight contrast, my principal career before lawyer was as pipeliner (welder and associated skills), as part of a team of us who were sent around the world to build offshore permanent oilfield platforms for drilling for oil and gas, then constructing the pipelines that took those substances to the "beach," as we called it. I saw the world from a construction barge then on my time off, saw much more; I treasure those memories, and also treasure my professional career and was sad to have to retire because of you-know-what. I still have my share of friends in the profession and appreciate their continuing to welcome me to social opportunities.

best, R.

BadMoonRising · August 29

Hey there, just checking in. I LOVE that you were a pipeliner and traveled around the world. You're an interesting guy!

Preserve those memories. Photo album, scrapbook, newspaper clippings, etc.

I promise you, they will always bring a smile to your face.

BMR

drock57 · August 31

https://alzconnected.org/discussion/76144/introduction

Hello Richard, I'm Darrell, a retired engineer, 69, married, recently diagnosed with MCI and then Alzhiemers after additional testing. Currently taking Memantine, which isn't a cure but is suppposed to help my cognative abilities. I too am seeking treatment. I would really like to get into the KU Alzhieners Desease Research center in Kansas City, which is close to you, but it apparently ain't so easy. They did call for some additional information so they could get me in their research data base and track me in the future, so maybe something will come up down the road. In the meantime, I have requests in with 4 differant facilities/specialist, but no luck getting anywhere, unless you count an appointment possible in December and another next April.

But in the mean time I can still drive and do everything I have always done, except rely on a quick memory, LOL. As far as forgetting to do things, my wife is with me on all this and is my backup, anchor, advocate and supporter, so I honestly am already counting on her to help fill in any gaps in my daily memory journey.

Hope you get in somewhere good and let me know if you come across any pointers in that direction.

GEH · August 31

https://alzconnected.org/discussion/76144/introduction

Hi Richard, regarding leg cramps, I get terrible ones several times a week while sleeping mostly and I found a great lotion made by MagnumSolace called "Nighttime Magnesium Lotion with Arnica", i buy it from Amazon, 5oz for just over $8. It is a very thick cream that goes a long way and the little jar can last for months. I have never associated my especially at night time, leg cramps with my Alzheimer's but maybe there is a connection. I will have to ask my neurologist and see what she has to say. I was taking extra magnesium orally but that did not seem to help and upset my tummy. This cream is the best. Regarding independce, I was diagnosed i think 3-4 years ago now and i still live alone except for my freeloading cat, I still drive, do to all my Dr. appointments alone, I no longer cook since I do not trust to remember to turn off the stove or oven but have found that kinda close to where i live i can get fresh salads and hot veggie plates etc for reasonable prices and I never liked cooking so, yeah!! Regarding appetite… I no longer have one. Infact, I never ever feel hungry, those brain cells must have died off, which is okay since I could have used to lose a few pounds, lol. I often have to think come about 4 or 5pm " have you eaten today?? and of couse I can't remember, lol. Now I keep notes in my phone calendar that I ate. Lol. I've been yapping long enough now and have probably put everyoneto sleep.

Richard, please post again and let us all know how you are getting on.. all the best to you… GEH

introduction

Comments

Commonly Used Abbreviations

Community Guidelines

Categories