Change in diagnosis!



We went for our regular appointment at the Movement Disorder Specialist at Medical University of South Carolina, and she changed John's diagnosis to a different kind of Atypical Parkinson's--Multiple Systems Atrophy (instead of Lewy Body Dementia).  Her main argument was that he has not had a steep cognitive decline.  I have thought he did have fluctuating cognition, one of the two essential symptoms of Lewy Body Dementia, because sometimes he can have a sophisticated conversation (about politics) and sometimes he is confused.  But that is hard to define.

I'm shaken up by the new diagnosis for two reasons. One is that it makes me feel alone--I no longer fit in several of the communities that have been helpful to me. MSA is a much rarer disease. The other is what would we have done differently if we had had the correct diagnosis earlier? I don't think John would have had two surgeries for benign prostate enlargement, which gave little benefit. I took over more things because I expected more rapid progression to dementia, though I think my doing so has made his life more pleasant.

The new diagnosis does make sense. The key symptoms are rigidity, slowness, and problems with the autonomic nervous system such as postural hypotension, urinary retention, constipation, and both kinds of incontinence.  Consider a list of red flags for MSA:

• Early instability--John has only started falling several times a month recently, but he has had balance problems from early on
• Rapid progression--not so much so, but if defined as in a wheelchair in 10 years (the Parkinson's disease definition) that is likely to fit
• Abnormal postures--he has something called disproportionate antecollis where his head is way forward
• Bulbar dysfunction--various voice issues, which he doesn't have except a little hoarseness
• Respiratory dysfunction--snoring and another noise breathing in while sleeping, but these were issues for many years.  He often falls into a shallow rapid breathing pattern, though he reports no shortness of breath
• REM Sleep Behavior Disorder--this was an early symptom
• Emotional incontinence--not an issue

I had read about Multiple Systems Atrophy but had never considered that it fit John, because some diagnostic criteria specifically exclude anyone with dementia.  Cognitive issues were a key symptom when he was first diagnosed because he was having difficulty with his job, but those have gotten worse only slowly.  I found an article that says 11-32% of patients with MSA show significant cognitive impairment.

The relationship between the diseases is odd--most of these symptoms are seen in both diseases, the difference is which are predominant.  Yet they show different kinds cell damage on autopsy.  One article states: "Although the molecular mechanisms of misfolding, aggregation, and fibrillation of α-synuclein might partly overlap among the α-synucleinopathies, disease-specific cascades that are determined by genetic and environmental factors are likely to discriminate these." That is, Lewy Body and MSA may start with the same process that is damaging the brain, but the brain can fight that damage in several different ways, which define the different diseases.

Both diseases have treatment only for symptoms, no way to modify the course of the disease.  Because of the change in diagnoses the doctor did increase John's Sinemet dose, in hopes of reducing his stiffness and balance issues.  There doesn't seem to be anything more we can do about the constipation and incontinence issues.  Life expectacy is similar for the two diseases, perhaps with fewer people with MSA living more than 10 years from diagnosis.  With MSA, the body is likely to go before the brain goes completely, which is a good thing. 

(The image is a road sign from Alaska sent to me by a friend)

Homemade Grainy Mustard

I've been very frustrated reading instructions for making mustard on the internet.  Some call for cooking it, others say never heat mustard.  Some say it gets stronger with sitting, others that it mellows.  I'm currently guessing that it gets stronger when you grind it until you add vinegar, then mellows, at least so long as it is at room temperature.  So here is my first try, rather randomly put together from various recipies I read.  My goal was a mustard with a lot of mustard flavor but not a lot of hotness.  I didn't measure anything, so amounts are approximate.

1 cup yellow mustard seeds
1/4 cup brown mustard seeds
pure cold water to cover by an inch
1 tblsp sea salt
1/4 cup cider vinegar
2 tblsp whey from yogurt or kefir

Extras:
2 teasp tumeric
2 teasp mustard powder
2 tbsp cider vinegar
1 tbsp honey
ground pepper

Soak the mustard seeds in water 12-24 hours.  If there is significant water not absorbed, strain out seeds and reserve the water.  A funky smell is ok.  Put all ingredients in a blender and puree to the texture you like.   You may need to add more water to get the blender to work, but the mustard will thicken after it is made.  Pour in jars and leave at room temperature for several days to mellow before refrigerating.  This nearly filled two pint jars.

Notes:

• I bought my mustard seeds from Penzeys.
• My food processor would not grind the seeds even after almost 24 hours of soaking--they just whirled around.
• I filled one jar with the plain mixture and then blended in added half the amount given of extras to make a second jar.
• A purist would say either use vinegar or whey, not both.  But I added whey from kefir because that seemed to me extra insurance that my mustard wouldn't go bad--I gave good bacteria a head start.
• I added vinegar at the beginning of grinding the seeds because I didn't want a hot mustard.  For a hotter mustard, grind the seeds with water and let sit 10 minutes to an hour before adding whey (or vinegar, but vinegar will reduce the hotness more).  The whey will start a process of lactofermentation that will build up an effect similar to vinegar over several days.  (Traditional pickles are fermented, not made with vinegar).
• One of the frustrating things about making mustard is that you can't really taste for seasonings--it isn't going to taste good until it has sat for at least a couple of hours.

Simple sweet potato souffle

I invented this just to use up some leftover egg whites, but it was such a success I want to record the recipe for future use.  I didn't take a photo and six of us ate it all.  It isn't a true souffle that poufs, but it has a pleasant light texture and no added sugar.

2 medium sweet potatoes, cooked and peeled
2 tblsp butter
1/4 cup heavy cream
salt
5 egg whites
pinch of cream of tartar
1/4 cup chopped pecans

Oil a souffle dish or 8x8 pan and preheat oven to 400.  Process cooked sweet potatoes, butter and cream in a food processor until very smooth (a stick blender would probably also work).  Add salt to taste.  Beat egg whites with cream of tartar until stiff.  Mix a third of beaten egg whites into the sweet potato mixture, then fold the sweet potatoes gently into the egg whites until completely combined.  Pour into pan, smooth the top, and sprinkle with pecans.  Bake at 400 for 20-40 minutes, depending on thickness.

shun hatred

I'm frustrated by the conversation I see about the Colorado shooting--it seems to me to miss the deeper point.

My preference would be strict gun control--at least as strict as the licensing and registration system for cars as well as a ban on automatic and semi-automatic weapons.  But I live in the south and gun control here is a divisive issue.  It is also a technological fix--we can't make people less violent so let's limit their access to weapons.

Could we agree instead on working towards a society where hate and violence are shunned, not glorified?  I am sure some people will immediately think that shunning haters only adds to the isolation that is part of the story of most mass murderers.  Certainly not all isolated people turn to guns.  I would argue that violent TV, movies, and comic books populate the imaginations of those who do.  I'm not a big believer in censorship, but could we please censor violence as much as we do sex?

More important, I wish these violent events would inspire us to forswear hatred. Conservatives and liberals both fall into demonizing their opponents.  It seems to me that hatred is becoming more and more socially acceptable,  and that is taking us in the wrong direction.  What if hatred and excessive violence became as socially unacceptable as racism?  That isn't perfect--racism is certainly still a problem--but even a veneer of broad-based social disapproval makes it harder to take pride in hatred.

What if we took loving our enemies more seriously?

dawn effect and fasted exercise

I have always eaten something before exercising, even 5:30 am masters swimming.  I have a cast iron stomach--the only time it ever bothers me is if I catch the stomach flu.  When I first started training for triathlons, I ate a little carbohydrate and protein before morning training, something like an orange and a couple of pieces of cheese.  Even after I went low carb, I was prone to feel out of energy and irritable if I went too long without eating (though my blood glucose was not problematically low).

I also had read that for some people with type 2 diabetes, morning high blood glucose (the dawn effect) would just go higher and higher until the person ate something to stimulate the body to produce insulin.  The liver would release glucose, but the body wouldn't be able to use it until it got that insulin.  I never tested that myself; it matched all my assumptions about eating before exercise.  And when I was training for racing, the approach I took worked well for me, as it fit into my fueling strategy for racing.

Now that I am following the primal way of eating, I have been paying attention to the arguments for not snacking and realizing that I'm not hungry.  I am less and less prone to that running out of fuel feeling.  So I decided I would do a test and see if my blood glucose went high if I exercised without eating first.  My test was swim practice-- 1 1/2 hours of swimming starting at 5:30 am.  I tested after my warmup and an hour or so in after some hard swimming.  I first tested the way I had been doing it, and then five days later I tested without eating first:

July 5
5:00  120 waking
5:25  115 before exercise, just after eating melon
6:05    93 after 1/2 hour of warmup
6:45  105 after swimming hard
7:30  125 1/2 hour after finishing workout
8:30  137 just finished slowly drinking my breakfast smoothie
9:40  119 to see if it came down

July 10
5:15  116 waking
5:50  100 after 1/2 hour warmup, no food
6:30  106 after swimming hard
7:40  120 after showering and driving home
8:20  130 after slowly drinking my breakfast smoothie

So there certainly doesn't seem to be any harm in fasting exercise for me.  I felt a little less energy, and a little strange when the food hit me afterwards.  But my body will adapt.

Making kefir

I decided to try kefir instead of yogurt because it has more different probiotics and I didn't want to keep buying starter.  Kefir is also more convenient because it cultures at room temperature, using lumps of probiotics and yeast that are called grains.  I bought a kefir kit, but I found the strainer that came in the kit has too small holes, it is too hard to get the finished kefir through the strainer.

As with yogurt, I have been making my kefir with fresh raw milk from a source that I trust, without heating the milk first.  With my raw milk from Jersey cows, the kefir sets up as firm as yogurt, and once the culture is going well a quart takes about 8 hours in this warm summer weather (my kitchen is in the high 70s or even 80).  Raw goat milk makes a much thinner kefir with whey forming on top, instead of on the bottom as with cows milk, and takes longer.  I use it in a breakfast smoothie so it doesn't matter how thick it is, but it is harder to tell when it is done.

My kefir grains seem to do fine spending most of the week in the refrigerator in some milk, though the instructions recommend keeping them at room temperature making more kefir all the time.  After I left them in the refrigerator for almost three weeks when I was away, I restarted them by rinsing them and putting them in about a cup of fresh low-temperature-pasturized milk on the counter, changing the milk every 24 hours for a couple of days before going back to my usual quart of raw milk.

If you are thinking of getting into making kefir, make sure that you have a source of milk that is organic and not ultra-pasturized.  And make sure you want to use kefir regularly; it isn't something you can make now and then when inspiration hits, the grains need to be used most weeks.

Yellow squash and sausage casserole

1-2 lb yellow squash, sliced very thin
1 lb breakfast sausage
1 onion
2 eggs
8 oz sour cream
6-8 oz grated cheddar cheese

Preheat over to 350 and grease two 8x8 or one 9x13 pans. Salt the yellow squash and put it in a collander to drain. Saute the sausage until done, breaking it up.  Remove from pan and saute the onion (my sausage was very low fat so I used olive oil) until golden.  Beat the eggs in a bowl and beat in the sour cream.  Mix in cooked sausage, cooked onions, 1/2 the cheese, and sliced raw squash.  Distribute into pan(s), press down well, and top with remaining cheese.  Bake for 30 minutes or until bubbling a little around the edges.  Run under the broiler to brown if needed.