My wife, son, and I were rearended while stopped on a state highway waiting to make a left hand turn in June of 2023. The car driver that struck us was "distracted" and never touched his brakes so hit us at ~60MPH. We were in a Honda Odessey that was totaled. I was knocked unconscious and had a concussion. The emergency room released me and advised me to see a Neurologist. It took me over a year to obtain an appointment with one. Since the accident, I have dealt with a constant headache, confusion, and other issues related to Post Concussive Syndrome. The neurologist and a pain center treated me with everything they knew how to with no success. So, I was referred to the Neuroscience Specialty Center in Atlanta (250 miles away) and have been under their treatment for several months now and showing progress. In working with me, the neurologist sent me for an Amyloid PET scan which came back positive. I have Alzheimer's Disease. Over the last few years, it has become increasingly difficult to remember words, days of the week, concentrate, work multifactorial math problems, and remember recent events (I have my wife attend doctor's visits with me because I can't always remember what they tell me). Not drastically but consistent enough to be noticeable and somewhat aggravating which is typical for early-stage Alzheimer's. There is no cure, but there are treatments to slow its progression involving IV drug infusions and further MRI and Amyloid PET scans to monitor the disease's progress. I'm kinda staring into the abyss here and not knowing exactly what or when I am facing with the disease's progression. But, I will keep trying for as long as I can. I just found out yesterday and we are now searching for a local neurologist who can start treating me as the distance to Atlanta requires an overnight stay for the visit not to mention the 500+ mile road trip multiple times per month and is impractical. It's not going to happen overnight but hopefully treatment will give me a few extra years before the darkness closes in on me.

 

Sad to hear that, Sam.
You are an esteemed member of the graybeard AAC community.
All that I can tell you, to delay the disease development, is to keep your brain active. My dad had some success with it.

 

That's really tough Sam. You must be feeling really lost. I can only wish for the most extended healthy time possible for you, and that you can continue to be surrounded by your family and friends.

Enjoy what you can, now. Mortality becomes more and more obvious as we age, but sometimes the horizon comes into sharper focus and with it the things that are actually important.

I have enjoyed our time here together and hope that we are both able to continue that for the longest time possible. I know that isn't really anything I can do, but if you manage to think of something helpful—let me know.

I wish you and your loved ones all the best possible outcomes.

 

Very sorry to hear this, Sam. I am getting to an age where the possibility of developing one of a number of things that lead to cognitive decline is increasing -- and that scares me, because for most of my life, my sense of self and worth has been tightly tied with my cognitive skills. But, when I think of so many people who their sense of self is tied to their attractive appearance or their physical skills, I count myself fortunate because so many of them lose those at a much earlier age and, quite frequently, become lost souls because they can't find something to replace what they've lost. Fortunately, and I did not see this coming, my life's focus has shifted heavily towards my daughter and witnessing her grow and become this amazing young woman. I tell myself that there's no getting out of this life alive, and so I have to accept that (which doesn't mean I can't fight death and decline every step of the way -- though given my eating and exercise habits, one could hardly be blamed for questioning just how seriously that fight is being fought).

Do whatever you can to improve and prolong your situation for as long as you can. My understanding is that keeping your mind engaged in cognitively challenging tasks is one way to do this. Also, consider what kinds of things you can transition to to still get enjoyment even as the cognitive abilities degrade. I wish I could give you a bunch of suggestions, but the list that I've come up with for myself is none-too-inspiring at that point. For me, as long as I can still watch and appreciate and enjoy my daughter's journey, I think I can find sufficient contentment to continue on.

Wish you well and hope to continue to see your active participation on the forums for a long time.

 

At this point I am in the early stages but definitely have it based on the results of the Amyloid PET scan showing Amyloid Plaque deposits and tau entanglements. My neurologist says that on the tests for cognitive impairment I scored high indicating no real impairment at this point. But I can't remember words and names in my daily communications either written or oral. After 15 or so minutes I can usually recall the word, name, or event. I have also fallen 3 times in the last month and that is another indicator. I can't remember appointments and quite often don't remember what day of the week it is. I take my wife with me to doctors' appointments because I will not be able to remember what they say. I carry a notebook but often can't remember exactly what my shorthand notations mean. I'm going to physical therapy for balance issues and improving but still use a walking stick for getting around outside the house. We found a lot of information/advertising for several AD treatment drugs. Not cures but slowing down the process which will lead to the middle stage where real forgetfulness begins. Loss of location orientation and not recognizing folks or remembering their names. The end stage gets pretty ugly but I'll be too out of it to even know by then. Then surprisingly I was able to recently study the question pools for and pass the tests for my Extra Class FCC license exam missing only 2 questions for a 96 score. It's really strange, but at this point I need to find a local neurologist to get me on a treatment plan to slow the progress of and monitor my disease. Getting old sucks...

 

Cognitive skills do decline with age.
For me, it has been studying past projects that I designed and built and no longer understanding them.
I keep copious notes, datasheets, schematics, software documentation, board artwork, simulation files, spreadsheets with different calculations, waveforms, photos, and miscellaneous files all related to each project I have made, all gathered in its own folder.
Sometimes I re-read the folder…. And no longer can understand it. Can’t figure out the thought process I followed while designing or building it.

 

I heard this on the radio.
https://www.bbc.co.uk/programmes/ar...t-can-nuns-reveal-about-the-secrets-of-ageing
I'm not suggesting that you should take holy orders, but keep on with the electronics as keeping the mind active seems to be important.

 

Thanks for the link @Ian0 I saw the nun study mentioned several times as an anomaly but no given details. After the accident concussion in June of 2023, I had to shift gears a bit and forgo my work with Boylestad's "Introductory Circuit Analysis" as the post concussive syndrome is causing constant headaches and confusion. So, I am getting it both from the accident and from early-stage AD. I shifted gears more into applied electronics used to bolster my Ham Radio work. I've spent many hours with my nanoVNA learning and measuring antenna SWRs and looking at cable losses. I am keeping very busy but not able to work for very long before becoming confused and frustrated and having to step back from it for a while. If I can get back to Boylestad it will be by modeling the circuit problems and letting the computer do the analysis calculations instead of trying to do them on paper. I still have on my todo list Malvino's "Resistive and Reactive Circuits" and some digital work as well if I can. Right now, I'm still dealing with HF antenna problems. I've finally replaced my hurricane and storm damaged antennas but have some tuning issues with my end fed and dipole wire antennas. That and a new ICOM IC-9700 2M, 70cm. and 1.2GHz bands all modes radio and implementing digital communications modes with it. I've already started working with EchoLink on my iPhone and computer. That and installing an ICOM IC-2730 2M, and 70cm mobile radio in our car (still need to route the power feed). So, yes, I am trying to stay as busy as I can...

 

Getting old sucks...

Too true. I never fully appreciated "rust never sleeps..." until the last few years

 

Thanks for the link @Ian0. Very informative.
I am in the UK at this moment helping to care for my wife’s mother who just celebrated her 90th birthday. She is at an advanced stage of dementia exhibiting the usual symptoms.

For caregivers, “Contented Dementia” by Oliver James is highly recommended.

Three golden rules for caregivers:
SPECAL sense begins with three Golden Rules:

1. Don’t ask direct questions
2. Listen to the expert – the person with dementia – and learn from them
3. Don’t contradict

These Three Golden Rules run contrary to commonsense communication styles which are taken for granted when dementia is not an issue.

The Three Golden Rules are counter-intuitive and those of us without dementia need to develop this entirely new set of communication skills.

https://contenteddementiatrust.org/specal-method/three-golden-rules/

 

Sam, just hang tight and hopefully you will have treatments close to home.

Ron

 

Hello, Sam. I thought you might find this article to be of your interest. Hope all is well with you.

A Common Sleeping Pill May Reduce Buildup of Alzheimer's Proteins, Study Shows


​

People who took suvorexant, a common treatment for insomnia, for two nights at a sleep clinic experienced a slight drop in amyloid-beta and tau, two proteins that pile up in Alzheimer's disease.

 

@SamR, always rreadingyour posts with genuine interest. Pls keep them coming.

 

We've made multiple calls to the local and Savannah neurologists with not much success so far. Several have never heard of a treatment for AD. A couple have been approached by the pharmaceutical sales folks but not onboard for treatment yet. There might be someone in Savannah and only 2 doctors in the Atlanta area and my doctor in Atlanta is not one of them. Also, from what we are hearing, insurance may not cover much of it such as full payment for all of the MRIs and PET scans required. So, the search continues. @cmartinez interesting article and I have monitored my sleep cycles and haven't slept more than a few hours at a time in years. According to the monitor I get very little deep sleep and it rates my sleep as mediocre. Having to get up to go to the bathroom every couple of hours doesn't help and the urologist is already treating me for that one.

 

My last couple of years have been similar to yours, but I have what seems to be a slower moving set of encumbrances.

My paternal grandmother live to 96.

In her 70's I would often hear her saying "Getting old is the hardest work I ever had to do."

It has taken a few decades for that to sink in. Getting old is the hardest work I ever had to do. As with others, I am there with you.

 

Uncertain Future

Many of us are in the same boat, at different places in the river.
Come and talk (post) any time about anything. We understand "wrong words". I promise to not laugh.
Every year my friend list gets shorter, we know what it is like.
Keep typing.

 

Tough to hear. Stay positive and fight back.

The best thing to do is get daily outdoor exercise. Nobody likes to hear that but the benefits can't be overstated. A short (20-30 minutes) walk improves mood, helps improve balance, improves circulation, helps improve sleep and appetite, stimulates the immune system, and on and on.

We all lose the war in the end but the power to improve the quality of our days is in our hands.

 

We understand "wrong words". I promise to not laugh.

We’ll just assume it was auto-correct.

 

Sorry to hear this. Keep mentally active as long as you can.

from what we are hearing, insurance may not cover much of it such as full payment for all of the MRIs and PET scans required

I found that the prices the imaging places charge insurance companies is outrageous. I wanted a second MRI before scheduling back surgery and found that they charged individuals less than insurance companies so paying out-of-pocket was the way to go. I scheduled through a third-party website.

 

From what we were told, after insurance, it's 1k USD for MRI PET scan imaging which requires a nuclear isotope dye I.V. injection. Not sure how often but the I.V. drug treatments are every 2 weeks. We've also been told they do the treatments in Jacksonville, which is only another 20 miles further than Savannah which is ~60 miles, so we've increased our "local" search possibilities. I guess once I start treatments, they can give me some idea of a timeline prognosis. I did discontinue my physical therapy for balance issues but still riding the exercise bike. Other than that, it's just the same old routine as before... Carpe Diem!