Maybe this is a good moment to dust off your Spanish, Sam?

Speaking Multiple Languages May Slow Brain Aging, Study Suggests

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The insurance company has denied the request for Leqembi treatment. I'll be calling them Monday to discuss it with them and find out just why it was denied. Kinda like denying chemotherapy for cancer patients... Makes no sense to me but I'll find out just what's going on. Meanwhile, I've been on the Aricept for a month and pretty well tolerating it but the dosage doubles after 6 weeks on the initial 5mg dosage. Biggest thing I notice is aches all over and pains in my finger joints as if it is negating the weekly Embrel shots for psoriatic arthritis. Seems every medicine has some kind not so fun side effect these days.

For a good laugh...

 

It's a depressing scenario ... insurance companies are, by their very nature, for-profit organizations. That means that "insurees" are secondary to their main purpose ... OTH, what's the alternative? Have a government administer high quality health care? ... all of the "success stories" I've heard from other countries' public health organizations have turned out to be either highly exaggerated or simply flat out lies.

 

The insurance company has denied the request for Leqembi treatment.

That's unfortunately very common for new or even slightly "experimental" treatments. My brother has a very rare cancer and thankfully there is a useful drug for treating it. But that drug may or may not ever come to market because it has a such a limited niche market, it may never be worth the push. I'll have to ask him how or whether he worked out anything with his insurance provider.

Is Leqembi prohibitively expensive? It's possible the supplier will drop the price for someone that cannot get it otherwise. They need guinea pigs and data, after all.

The only tool we know of for reducing costs is good old competition. It's ugly and may seem wasteful, but moves mountains when unleashed. Nothing stalls innovation faster than interventions that stifle competition.

 

Talked with the insurance company (United Health Care) and apparently the doctor's office didn't fill out the request correctly. Something about not being on the national registry for Alzheimer patients? They are emailing me the details and once the neurologist gets the paperwork corrected I should be approved. Luckily, I've found a doctor in Savannah (150-mile round trip) instead of Atlanta (600-mile round trip and overnight stay plus meals) to treat me. I had gone to Savannah for the Vyepti infusion being used to treat the postconcusive headaches and asked them if the Liqembi had been approved and they discovered that the paperwork had been overlooked and not filed! It's always something... Anyways, better news at least.

 

Anyways, better news at least.

Good for you, Sam. Yours is a life worth fighting for. Best wishes to you and yours this holyday season.

 

Talked with the insurance company (United Health Care) and apparently the doctor's office didn't fill out the request correctly.

I needed a very expensive series of infusions for a serious condition I had. Each time, the insurance company would deny it and after talking to them multiple times would claim the doctor used the wrong diagnosis code, and after changing it they would pay. I knew it was all BS when the code said I needed the previous time was rejected as wrong the next time, and told me to use the one they rejected last time. It is all a ploy to see if you will give up. I never did and I am now cured.

So hang in there and fight.

 

You really have to advocate for yourself. The "system" has incentives and they don't align with your own.

 

We learned long ago that every patient has to have an advocate. Especially when in the hospital! For several years I've taken my wife with me for all medical office visits as she is a very thorough note taker. Much better than relying on my failing memory.

 

Your wife must be a gem ... keep her close!

 

I received a bit of good news, the neurologist finally got me on the National Register for Alzheimer's. So, I've been approved for Leqembi infusions to remove the amyloid plaques in my brain which I'll call for tomorrow to be scheduled. 16 treatments plus MRIs to monitor progress and check for Aria which is brain swelling and bleeding. Infusion center has told me they have never had a case of Aria so... Lots of not so nice common side effects though. With the plaque removed I should get back a bit of cognitive function but there is no way to reverse the brain cell loss that has already occurred. There is no cure for Alzheimer's disease, but this will slow its progression and may help improve some its effects I'm already having.

 

There is no cure for Alzheimer's disease, but this will slow its progression and may help improve some its effects I'm already having.

I hope and pray that it slows the progression significantly. I realized when I was diagnosed with diabetes, a progressive and fatal disease, that the objective was to slow the rate of progression so that something else killed me first. The juries out on whether I'm going to achieve that goal, as I have not been very successful at faithfully doing what I need to be doing to so. Hopefully these treatments go a long way to achieving that end for you.

 

We drove up to Savannah (~120 miles round trip) to the Infusion Center at the hospital for my first dose (1mg) of Leqembi. Which I will be doing every 2 weeks and not monthly as I was previously told. No problems with the infusion which took a couple of hours since they made me wait for a half hour afterwards to make sure there was no allergic reaction to it. But within a couple of hours after returning home I started freezing and shivering badly and unable to eat or drink anything as my stomach was very queasy. Wife put me in bed with a heating pad and felt a bit better (no longer shivering) a few hours later but slept very little. Somewhat better this morning and still cold but not freezing and able to drink a couple cups of coffee and eat a small bowl of fruit and yogurt. Seems this stuff is much stronger than the Aricept they already put me on and hopefully (after a few doses) it's aftereffects will diminish as did the Aricept side effects as my body adapts to it. Not a great start but manageable. After the 5th dose they will again do an MRI of my brain to see if there are any brain bleeds (somewhat rare side effect) and if there was any abatement of the Amyloid Plaque starting. Still left with nagging headache, a bit queasy, and a stuffy nose but that is tolerable considering the alternative.

 

Just know Sam, that we are behind you on this.

Ron

 

Things are looking up a bit. 2nd fusion last Monday they gave me Benadryl and Tylenol before which eliminated the shivering but still felt cold afterwards and queasy along with the headache and achy. This Monday they had me go in for a brain MRI to check for Aria (bleeding and swelling) and found two microhemorrhages and "Mild atrophy and chronic small vessel ischemic change in the cerebral white matter". All of which is somewhat typical for my age (74) and the presence of Amyloid Plaque. Nothing apparently to be of any great concern. Still feeling a bit off but getting a bit less confused and able to resume my studies with Boylestad and continuing the work on my "antenna farm".

 

Glad to hear that things are looking up. Keep fighting!

 

Always nice to read some good news Stay with the program Sam.

Ron.

 

Had my 2nd brain MRI this morning and have already been called by my neurologist to inform me that he is discontinuing any further Leqembi treatment. This MRI showed increased microhemorrhages and now also brain swelling which means I have Aria so no more Leqembi. It occurs in about 20% of treatments and they are putting me on a strong Prednisone regimen to reduce the brain swelling. Not bad enough to require hospitalization for steroid treatment thankfully. Will continue with the Aricept but no more scouring the of amyloid plaques from my brain. I'll just have to make the best of it with what I have. As it stands now, I am about stage 3-4 of the 7 stages of Alzheimer's, so I still have a few years before I'm completely demented. Some days are better than other but still can't occasionally remember names of people and objects but usually can after thinking on it for a while. Big thing is that I sound like I'm stuttering at times because I can't remember the word I need when speaking.

 

Sam, keeping you in thoughts. I have no idea what to tell you other than enjoy what you have living every day. This absolutely sucks.

Ron

 

You're doing all of us a favor, Sam, by documenting here how you're navigating this rather bleak trip that you've been forced to make. Yours is a very valuable story from which patience and courage can be learned, among many other things. And if I (or someone that I care for) ever have to face a similar panorama, I'll keep in mind for as long as I can that, by your example, embracing determination and avoiding despair is the right attitude when facing adversity,