In the Woods Until Thursday!

I am in the woods until Thursday. I will catch up then!

GUY’S GOTTA TALK ABOUT…Alzheimer’s #6: Something I Never Heard Before Until My Brother Told Me That There Are THEORIES Why Dad Has “Sundowning Syndrome”

Dad’s diagnosis of Alzheimer’s stayed hidden from everyone until I took over the medical administration of my parents in 2015. Once I found out, there was a deafening silence from most of the people I know even though virtually all of them would add, “My _____ had Alzheimer’s…” But there was little help, little beyond people sadly shaking heads. Or horror stories. Lots of those. Even the ones who knew about the disease seemed to have received a gag order from some Central Alzheimer’s Command and did little more than mumble about the experience. Not one to shut up for any known reason, I started this part of my blog…

Basic research into cures, treatments, and palliatives (things that may not cure or treat, but make a victim feel better) has recently gone “haywire”.

At one point, “neural tangles”, present in most brain autopsies seemed to be The Cause.

Then it was “amyloid plaques”, also present in most brain autopsies.

Four months ago, this was published: “Age-related dementias will affect almost 10% of people in the United States, and these conditions place a tremendous burden on such individuals and their families. The most prevalent type of dementia, Alzheimer's disease (AD), causes a devastating and progressive loss of cognition, for which there is no effective treatment or cure. Analyses of the brains of people with AD suggest that the presence of extracellular aggregates of amyloid-β peptides, intracellular inclusions of neurofibrillary tangles rich in microtubule-associated protein tau and neuritic plaques are pathological hallmarks of the disease, yet there is no conclusive link between these observations and the cognitive symptoms. The inability to definitively connect progressive memory loss to biomarkers greatly impedes the quest for effective therapeutic interventions for AD, but enhanced efforts to understand mechanisms of cognitive decline are revealing new avenues for intervention.”

Summed up and condensed, this says, “We have no idea what causes Alzheimer’s or how to deal with it. Oh, and one person in ten will have to deal with this thing.”

Because Alzheimer’s affects so many people – and that it knows absolutely NO BOUNDARIES racially, economically, societally, regionally, or behaviorally – more and more individuals and companies are joining in the research. According to the article below, “So far, confirmation of a subset of the newly identified loci in functional experiments has demonstrated that lipid processing, endocytosis and inflammation might contribute substantially to the development of AD.”

This means that how our bodies process fat; how old cells are absorbed back into the body, and swelling of brain tissue may ALSO play a role in whether or not I will be affected by Alzheimer’s as my father is.

The upshot is that Alzheimer’s is COMPLICATED: in addition to the formation of amyloid plaques and neural tangles – which is where much of the drug research has been aimed and tested – treatment and cure has to ALSO consider how old cells are absorbed back into the body, the swelling of brain tissue, dysfunction of the immune system, disruption in the brain’s physical “circuitry”,  as well as how stress affects the hippocampus of the brain (thought to be the center of emotion, memory, and the autonomic nervous system)…

It’s clear to me after reading this that not only is Alzheimer’s a complex disease, it will also not be affected by a prescription: it involves diet early in life, stress management, and the actual stimulation of the brain along with implantation of electrodes as well as genetics and simply how each Human body acts and reacts to aging.

As to the initial idea for this post, my brother mentioned that he was talking to a nurse who said that another reason for sundowning is that when my dad got home from work each night, he started to depend on my mom to take care of him. Sundowning triggers that “historical helplessness”. While it seems to make sense – in a BIG way – I haven’t been able to find any articles or mentions of it in the lit. That doesn’t negate it as a theory, certainly. It just means that the whole field of Alzheimer’s treatment is growing – if not chaotically, at least in observational and experimental data…

Resource: http://researchnews.osu.edu/archive/sundown.htm, http://www.nature.com/nature/journal/v539/n7628/full/nature20412.html

Image:  http://www.nature.com/nature/journal/v539/n7628/images/nature20412-f1.jpg

ENCORE #58! – Dealing With Restless Limb Syndrome…

From the first moment my wife discovered she had breast cancer, there was a deafening silence from the men I know. Even ones whose wives, mothers or girlfriends had breast cancer seemed to have received a gag order from some Central Cancer Command and did little more than mumble about the experience. Not one to shut up for any known reason, I started this blog…That was six years ago – as time passed, people searching for answers stumbled across my blog and checked out what I had to say. The following entry appeared in January of 2015.

First of course, the definition: “Restless legs syndrome (RLS) also known as Willis-Ekbom disease (WED)[1] or Wittmaack-Ekbom syndrome, is a neurological disorder characterized by an irresistible urge to move one's body to stop uncomfortable or odd sensations. It most commonly affects the legs, but can affect the arms, torso, head, and even phantom limbs. Moving the affected body part modulates the sensations, providing temporary relief.”

Once again, this is something my wife has struggled with. But instead of breast cancer causing it, it has exacerbated it. She’s had RLS her whole life (at least since she was six years old!) Breast cancer – double mastectomy, aggressive tri-weekly chemotherapy (Taxotere + Adriamycin + Cytoxan and the next day, neulasta), followed by five years of anastrazole – just made it...weirder.

I first experienced when we got married. At night, before falling asleep, she would move her legs in order to “short-circuit” the odd sensations. That seemed to work. Then the cancer diagnosis and treatment and as of right now, it has manifested itself by odd sensations in her LEFT arm. This is odd because the removal of sentinel nodes and the resulting lymphedema was in the RIGHT pit and arm (sounds like a medieval British pub, doesn’t it...).

Current research suggests “...exercise, avoiding RLS precipitants (caffeine, alcohol, antidepressants, antihistamines); exercise; counter stimulus to sensory symptoms (hot or cold baths, limb massage, compression stockings, counter-pulsation devices); herbal medicines and acupuncture; and cognitive behavioral therapy.”

Her first “go to” was to up her calcium intake: “Dehydration, prolonged sitting, or not getting enough potassium, calcium or magnesium in your diet can be associated with leg cramps. So can certain medications -- including diuretics, beta blockers and other blood pressure drugs. Sometimes, these cramps also may be related to an underlying metabolic condition, such as an underactive thyroid (hypothyroidism) or a parathyroid condition. Diabetes or other conditions that disrupt your metabolism can also cause muscle cramps.”

The calcium chews she’d been doing were originally to counter the bone debilitation caused by the chemotherapy, so she stopped for a while. The RLS increased and now she uses the calcium chews as well as a hot water bottle to lower the intensity of the sensations.

As I wrote earlier, we’ve also started a regimen of exercise together – alternating strength training (after a visit with the Planet Fitness trainer) and cardio – we usually do a half an hour of stationary biking. The hot water bottle was a “new development” and has been remarkably effective.

I’ll note here something we HAVE NOT tried, but is a recent development: “In 2014, the FDA approved a device that provides electrical stimulation to the legs as a non-medication treatment for restless legs syndrome. Studies suggest this treatment can be quite helpful. Although it is generally well tolerated, it occasionally causes a temporary worsening of symptoms, leg cramps, soreness and motion sickness.” My guess is that this is an outgrowth of the device developed for those who suffer from chronic pain, what’s called Microcurrent Electrical Therapy.

Taken all together, the “therapies” seem to be working for the time being. It’s also light years better than adding ANOTHER pill to her already abundant storehouse!

Resources: http://effectivehealthcare.ahrq.gov/index.cfm/search-for-guides-reviews-and-reports/?productid=1328&pageaction=displayproduct, http://articles.chicagotribune.com/2012-04-13/lifestyle/sns-201204131600--tms--mayoclnctnmc-a20120413apr13_1_leg-cramps-restless-legs-syndrome-calf-muscles, https://www.intelihealth.com/article/restless-legs-syndrome

Image: https://s-media-cache-ak0.pinimg.com/236x/81/e0/17/81e0174e6e01a46b48e0a5fc8ab7a2d9.jpg

GUY’S GOTTA TALK ABOUT #33: After the Drama, Nothing But Hassle

From the first moment my wife discovered she had breast cancer, there was a deafening silence from the men I know. Even ones whose wives, mothers or girlfriends had breast cancer seemed to have received a gag order from some Central Cancer Command and did little more than mumble about the experience. Not one to shut up for any known reason, I started this blog…

I confess that from the moment my wife was diagnosed with breast cancer, life whirled out of our control. Following the initial biopsy, tears, surgery, chemotherapy, and checkups – all of which were high drama – things calmed down considerably as time blurred the clear recollection of that drama. During that time, my wife jammed her hand against a wall, and we set off on a second, albeit much less exciting journey called Lymphedema.

Six years later, the adventure has become more of a “plodding slog” than anything else and has been, to put it mildly, a pain in the…well, let me explain a teeny bit of it.

MONTHS ago, my wife ordered a new “overnight sleeve” to help control lymphedema.

She has ordered compression sleeves, gloves, and other materials from them in the past and aside from being ridiculously difficult to get to (the place is literally buried in a poorly marked warren of industrial park businesses), she’s often been able to get what she needed.

I say often because there have been problems with the garments being incorrectly sewn, too tight, cut wrong, and other, less critical problems.

This past time, this company has created NOTHING buy hassle for her/us. From claims that “insurance doesn’t pay for this” to, “yes, yes, we ordered it but it hasn’t gotten here yet”, the sleeve was so mired down in what I can only think of in the most polite of terms as office confusion, that we ordered a “non-custom-made” sleeve from an online company.

It arrived promptly and while there’s nothing inherently wrong with it, it’s a sort of “one-size-fits-these-measurements” kind of thing. It’s also uncomfortable (in its defense, NO compression sleeve can ever be said to be comfortable!) and while it’s currently the tail-end of winter and sweltering isn’t a problem (it’s 8°F (-16°C) this morning), it will become a problem in August. It’s also huge.

I don’t exactly recall how big the first one was, but it didn’t seem to be this big!

At any rate, this entire journey into the hideous world of post-breast cancer lymphedema might have been prevented half-a-decade ago if my wife’s doctor had begun immediate treatment after she jammed her hand against a wall on Thanksgiving day in 2011. THAT doctor didn’t “believe in” lymphedema treatment and so did nothing. What were WE to do? We knew less about breast cancer and lymphedema than he did, so we had no idea we should advocate for more aggressive treatment. (See: http://breastcancerreaper.blogspot.com/2012/09/a-friend-scare-minnesota-state-fair-one.html)

No one had bothered to mention lymphedema and the possibility of the “cure becoming worse than the disease”. Because at THIS point, there’s nothing anyone can do…

Whoops, did I say nothing they CAN do? I meant to say that NO ONE IS DOING ANYTHING FOR POST-MASTECTOMY/NODE-REMOVAL BREAST CANCER PATIENTS WHO HAVE EXPERIENCED LYMPHEDEMA!!!! (http://breastcancerreaper.blogspot.com/2012/11/lymphedema-treatment-past-presentis.html)

They have new surgical techniques to PREVENT it, which I reported on here: http://breastcancerreaper.blogspot.com/2016/08/breast-cancer-research-right-now-48.html, but is there anything that can TREAT it?

That will be my next BC Research RIGHT NOW!!! post.

Image: http://wrex.images.worldnow.com/images/23784252_SA.jpg

ENCORE #57! – Bone Density Scan

From the first moment my wife discovered she had breast cancer, there was a deafening silence from the men I know. Even ones whose wives, mothers or girlfriends had breast cancer seemed to have received a gag order from some Central Cancer Command and did little more than mumble about the experience. Not one to shut up for any known reason, I started this blog…That was four years ago – as time passed, people searching for answers stumbled across my blog and checked out what I had to say. The following entry appeared in August of 2014.

The word today is “osteoporosis”.

My wife just had a “bone density scan” done and the doctor said that the indications are that she has the beginning stages of this disease.

So I thought I’d take a step back and do a “translating the doctors” column.

First of all – why does the bone density of a breast cancer patient matter. (I won’t be using the last letter of the alphabet, a question mark or the mathematical symbol for nothing – they have stopped working.) At any rate, bone density matters: “Osteoporosis is a condition in which the bones become less dense and more likely to fracture.”

Sounds simple enough. Factors that figure into the disease are on this site, too. The problem is that: “Women who have had breast cancer treatment may be at increased risk for osteoporosis and fracture for several reasons. First, estrogen has a protective effect on bone, and reduced levels of the hormone trigger bone loss…Studies suggest that chemotherapy also may have a direct negative effect on bone. In addition, the breast cancer itself may stimulate the production of osteoclasts, the cells that break down bone.”

In order to monitor patients during treatment and afterwards, doctors do something called a “bone scan”. What’s THAT mean (question mark)

Here’s a simple explanation of what happens: “The DXA (= Dual-energy X-ray Absorptiometry) machine sends a thin, invisible beam of low-dose x-rays with two distinct energy peaks through the bones being examined. One peak is absorbed mainly by soft tissue and the other by bone. The soft tissue amount can be subtracted from the total and what remains is a patient's bone mineral density…it feature[s a] special software to compute and display the bone density measurements on a computer monitor.”

The question now is does this mean you should panic – and the doctor’s advice is “NO!” While osteoporosis can’t be “cured”, you can take steps to lessen the effects. “Getting enough calcium and vitamin D is essential to building strong, dense bones when you're young and to keeping them strong and healthy as you age.”

And you do that by eating well “…food is the best source of calcium. Dairy products, such as low-fat and non-fat milk, yogurt and cheese are high in calcium. Certain green vegetables and other foods contain calcium in smaller amounts. Some juices, breakfast foods, soymilk, cereals, snacks, breads and bottled water have calcium that has been added. If you drink soymilk or another liquid that is fortified with calcium, be sure to shake the container well as calcium can settle to the bottom.”

In our case, my wife is planning to increase her calcium intake – while she uses the chocolate “calcium chews”, she’ll add in the foods.

So if SHE’S not panicking, no reason for anyone else to panic! Be smart and eat well and take the drugs prescribed. If we end up going that route, I’ll do another post. But for now, this is what we know!

Resources: http://www.niams.nih.gov/Health_Info/Bone/Osteoporosis/Conditions_Behaviors/osteoporosis_breast_cancer.asp, http://www.radiologyinfo.org/en/info.cfm?pg=dexa, http://nof.org/articles/10#CALCIUMSOURCES

Image: https://c2.staticflickr.com/6/5527/10893068965_1d328e8f71_b.jpg