False Hope on the Alzheimer’s Frontline


First published January 12, 2016

Anyone who has had to deal with a family member who has/had Alzheimer’s Disease (AD) knows the sad and tragic fact that the meds they are pushing not only do not work, but they are obscenely expensive.  The side effects of many of these drugs are staggering, yet, because the person has AD, I don’t think people pay enough attention to what they are doing to their loved one.  The costs for these medications are obscene.  Very few of them are generic, and Medicare isn’t all that forthcoming paying for them.   I never paid much attention the medications and the side effects until there came a day when I couldn’t afford to pay for one of his prescriptions.  That night, when I researched what it was, and what it was doing to him, I was in tears.  We were drugging him, keeping him quiet, and preventing him from being himself.  We did this to him for 2 years.  I’m still upset about it.  Of all the things we did when we were working with the AD, this is what still haunts me.

You’ve probably seen those warm and fuzzy ads for Namenda.  These are the side effects.  Now, the real problem when dealing with AD is you may not know that your loved one is experiencing these side effects because they may be incapable of understanding what is happening to them.  With my father, early on, before we even knew he had AD, we began to notice that he approached things going on with his body – in the way of pain – differently.  Unfortunately, at the time we did not realize it was AD.  He had yet to be diagnosed.  He was in his late eighties.  We just thought we were dealing with some memory loss due to old age.  Looking back on it, we were in maybe late Stage Two, at the most.  He would not have reacted in a normal way to many of these symptoms – and that is while he was still quite competent, fully functional, and leading a very normal life.  Heck, he was still driving, and doing quite well at it.

Bloating or swelling of the face, arms, hands, lower legs, or feet
blurred vision
pounding in the ears
rapid weight gain
slow or fast heartbeat
tingling of the hands or feet
unusual weight gain or loss
Incidence not known
Abdominal or stomach pain
black, tarry stools
bleeding gums
blistering, peeling, or loosening of the skin
blood in the urine or stools
chest pain
continuing vomiting
dark-colored urine
decreased urine output
fast, pounding, or irregular heartbeat or pulse
general feeling of tiredness or weakness
high fever
high or low blood pressure
increased sweating
infection from breathing foreign substances into the lungs
light-colored stools
lip smacking or puckering
loss of consciousness
muscle twitching
no blood pressure
no breathing
no pulse
numbness or tingling in the face, arms, or legs
pain in the stomach, side, or abdomen, possibly radiating to the back
pain or swelling in the arms or legs without any injury
pain, tension, and weakness upon walking that subsides during periods of rest
pinpoint red spots on the skin
pounding, slow heartbeat
puffing of the cheeks
rapid or worm-like movements of the tongue
rapid weight gain
recurrent fainting
red irritated eyes
red skin lesions, often with a purple center
severe constipation
severe headache
severe muscle stiffness
severe vomiting
sores, ulcers, or white spots in the mouth or on the lips
sudden severe weakness
swelling of the face, ankles, or hands
total body jerking
trouble with speaking or walking
troubled breathing
twitching, twisting, or uncontrolled repetitive movements of the tongue, lips, face, arms, or legs
uncontrolled chewing movements
unusual bleeding or bruising
unusually pale skin
yellow eyes and skin
back pain
bladder pain
bloody or cloudy urine
change in walking and balance
clumsiness or unsteadiness
cough producing mucus
difficult, burning, or painful urination
difficulty with breathing
difficulty with moving
dry mouth
feeling sad or empty
frequent urge to urinate
general feeling of discomfort or illness
joint pain
loss of appetite
loss of bladder control
loss of interest or pleasure
lower back or side pain
muscle pain or stiffness
pain in the joints
seeing, hearing, or feeling things that are not there
shortness of breath
sleepiness or unusual drowsiness
sore throat
tightness in the chest
trouble with concentrating
trouble with sleeping
unusual tiredness or weakness
Incidence not known
Burning feeling in the chest or stomach
burning, numbness, pain, or tingling in all fingers except smallest finger
cold sweats
cool pale skin
decreased interest in sexual intercourse
difficulty with swallowing
general feeling of discomfort or illness
inability to have or keep an erection
increased hunger
large amounts of fat in the blood
loss in sexual ability, desire, drive, or performance
slurred speech
stomach cramps
stomach upset
tenderness in the stomach area
watery or bloody diarrhea

We chose to go the way of B-12 injections every 3 weeks.  Contrary to what the anti-vitamin crowd says, B-12 was a miracle drug.  So was caffeine, pure white sugar, cinnamon, coconut oil, and a balanced diet.  The worst thing we could do, we discovered, was to give him a meal that included complex carbs – the kind everyone says are good for you.  They destroyed his brain function.  Only the almost immediate kick of caffeine and sugar in the form of dessert could help him function.

One of the ads show this warm and fuzzy scene of a wife taking care of her husband.  The man has this totally zoned out look which is NOT caused by AD but by the medications that tranquilize them, turning a functioning human into a zombie. I find the ads for the AD meds to be insulting and so very sad, disgusting.  There is nothing warm and fuzzy about caring for someone with AD.  It is heart-wrenching, thankless, miserable work that quite often destroys the care-giver along with the person with AD.   It destroys families.  The worst part is that it need not happen.  There are things which are far worse than AD.

On October 17, 2014 I lost my father. He had been diagnosed with Alzheimer’s Disease five years earlier. The problem, for me, is the fact that this article, about Kris Kristopherson has hit home. My father had the first diagnosed case of Lyme Disease outside of New England, back around 1984 or so. When we first started noticing a problem, I begged to have additional tests for a recurrence of Lyme. I was ignored. This article has left me ill.

As with Kristopherson, one of the things we noticed was the problems the same meds were causing for him, to the point where we quit giving them to him – and the effects were dramatic. I think the meds for AD, if a person is not violent, are horrible and should not be prescribed.

A friend and I, before I wrote this, were discussing the fact that there are different forms of AD. Unfortunately, very few physicians bother with this. The VA is not accepting the fact that AD can be cause by PTSD. It can be caused by a brain injury. My father had a brain injury, PTSD, and Lyme Disease.

There is a bottom line. When dealing with AD, you must do what is right for your loved one. We found the different organizations to be less than useless. The best place to learn about the disease is via Twitter, going back and forth with people who have been there and done that.

We discovered diet is absolutely critical. They need sugar and cheap useless carbs. Complex carbs – the good kind, don’t work that well. I’m also discovering, now, that marijuana in the form of hard candy is a miracle drug. That is one of the things I would do over, make sure he had the hard candy marijuana, even if it required moving to Colorado.

Alzheimer’s is a horrible disease. There are things which are far worse, trust me. Unless you are dealing with someone who is violent, it need not be the end of the world.