October 26, 2016

"I don’t battle M.S. I relent to its humiliations."

"I’ve already fallen. This is the voice from the swamp."

Said Lucia Perillo, quoted in her obituary. The poet was 58.


David said...


David said...

“I’ve been typing on the computer for years,” she said, “but it really adds editing into the creative process too early.”

Oh boy is that true.

lemondog said...



I was rereading Dylan Thomas

Do not go gentle into that good night.
Rage, rage against the dying of the light.

traditionalguy said...

The biggest symptom of MS, besides pain and loss of mobility, is being tired all of the time.

And loss of hope comes from being tired all of the time, plus knowing there is no knowledge of the cause of MS and there is no knowledge of a cure. Treatment boils down to giving sufferers hope and encouragement. The Rx Abilify does help some with tiredness, and since they need it so badly, the price became $800 per month.

Incidentally, legalized Marijuana is also a huge need for MS sufferers.

traditionalguy said...

Let me add, sufferers of MS understand Hillary's Parkinson's disease symptoms perfectly. Both are from impaired nervous systems.

Lyle Smith said...

Awesome honesty.

SayAahh said...

Progressive neurodegenerative illnesses are particularly cruel.
The cerebrum remains 'alive' and is witness to the incremental decay of the corpus.
Some central nervous system neoplasms, depending on their location and size, spare that torment by mercifully destroying cognition early.

rehajm said...

Treatment boils down to giving sufferers hope and encouragement.

It's true MS causation is still in question but there are proven treatments- multiple drugs proven to slow progression. The ABCR drugs, Tysabri, Gilenya. Now Rituxan and by early next year Ocrelizumab have shown dramatic improvement for people with the RR and the more aggressive forms.

One thing I'm amazed by is how unwilling many MS patients are to take the effective drugs.

StephenFearby said...

Excerpts from 'Judy Graham’s MS Diet Story'
(OCTOBER 26, 2015)

"...Sure enough, other things did happen – icy legs, I couldn’t feel my feet, patches of numbness. I went back to the GP three times before he said, ’You’ve got Multiple Sclerosis. Don’t tell a man until he’s in love with you.’ But that’s another story."

"...It was through ARMS and serendipity that I came into contact with some maverick doctors – Professor E.J Field and Dr David Horrobin. Both believed that essential fatty acids play a major role in MS. They urged me to take evening primrose oil, which I promptly did and have never stopped. I was also greatly influenced by biochemist Professor Michael Crawford, who encouraged me to eat a brightly-coloured salad every day with coloured vegetables like red and yellow peppers, beetroot and greens. On top of this, I also started taking a handful of other supplements recommended by Roger MacDougall and Alan Greer. This included a multi-vitamin and multi-mineral. This list has grown since then and now includes acidophilus, turmeric and anti-oxidants. (The full list is in my book ‘Managing Multiple Sclerosis.’)"


Evening primrose oil is one of the few commercially available foods that contain gamma-linolenic acid, the sole omega-6 essential fatty acid with material anti-inflammatory properties. There are 1,960 "hits" in Google Scholar in the search multiple sclerosis [and] gamma-linolenic acid, going back to the 1970's. A fairly recent study:

Bioimpacts. 2013; 3(1): 43–47.

Association of Expanded Disability Status Scale and Cytokines after Intervention with Co-supplemented Hemp Seed, Evening Primrose Oils and Hot-natured Diet in Multiple Sclerosis Patients

"...In conclusion, our study demonstrates for the first time in the literature a decrease in both clinical and pro-inflammatory disease activity in MS patients during periods of dietary intervention. Our data demonstrated that co-supplemented hemp seed and evening primrose oils with Hot-natured diet intervention may decrease the risk of developing MS related to the effects on decrease in pro-inflammatory and increase in anti-inflammatory cytokines."


traditionalguy said...

The MS Rx treatments are easy to sell on hope they will stop the progression of the irreversible disease. Believe me the MS community is super alert to new drugs. But the sufferers primarily need an honest specialist in MS Neurologist whose expertise will protect them from unproven experimental drugs that are very expensive and painful to take.

Keep up the hope.

rehajm said...

But the sufferers primarily need an honest specialist in MS Neurologist whose expertise will protect them from unproven experimental drugs that are very expensive and painful to take.

Every MS patient should have a Neurologist they are comfortable with and nobody should ever pay to participate in a clinical trial to take 'experimental' drugs. Just to be clear- none of the drugs I mentioned are 'experimental', but all are FDA approved for MS. Ocrelizumab will see FDA approval early next year but is essentially the same drug as Rituxan, only in humanized form.

They are expensive drugs but covered by insurance, and all the major drug companies have programs to assist those in financial need.

SteveR said...

Ms Perillo's story and mine are very similar, DX in 1987 at age 29. Every patient I know has a similar story but no two are identical. Anecdotes about what worked for one person (or several) are usually not helpful. In regard to disease modifying drugs, the results are highly variable, they are hugely expensive, have significant side effects, and only marginal success. I was Secondary Progressive by the time these drugs came about for Relapsing Remitting MS, so my slow and steady decline has been without facing the FDA/insurance/medical trifecta. Not a pretty picture.

Its not in any way fun and I refrain from any attempt to find a silver lining. Just about anything you may value is at risk, career, relationships, recreation, etc. It doesn't make you stronger. It does make you focus on what you can do and the people in your life. You are thankful for the things you did do, the hikes above the timberline, the walks on the beach and wrestling with you kids. And you can choose to be happy.

Guildofcannonballs said...

"Blogger David said...
“I’ve been typing on the computer for years,” she said, “but it really adds editing into the creative process too early.”

Oh boy is that true.

10/26/16, 9:57 AM"


Guildofcannonballs said...

I consider every single last typo, as in a real typo not a democratic excuse to rape children after they murder and steal allthe paren'ts lute, a gift from God.

I am not wrong.

Typos, actual, will come and go.

The will to understand why God has willed it not so.

Guildofcannonballs said...

Freudian typos not amok, as far as you have know 'till know.


Guildofcannonballs said...

you knew I meant "known"

you know.

Guildofcannonballs said...

This is no such thing as "adding" or anything else "too early" into the "creative process."

This is so stupid I get mad over it.

Not overdude/dose mad, but upset.

I will await the great Euro theater of interesting events, which will put us in the US back into persepective rightwise.

Buckley won't be surprised folks.


Too old to sell you anything, he's in fact been dead since February of 2008, if my memory serves us accurate.

Boy oh boy does he have wisdom though, sometimes subsumed by style but as such with acknowledgment rare and admirable.

A true teacher in every sense non-Jesus yet still somewhat human-divine; a wonder to have wondered about.

Guildofcannonballs said...

"...spare that torment by mercifully destroying cognition early."

And of course puberty is a torment, so when later on others terminate that torment, puberty, you must agree yes?

Except for the pretty, those torments contained within we can afford to tolerate, I bet.

Oh, oh boy do I bet.

The reality of the few will only be used as a means to power by those unfew, always. It's why America used to be different, a true Republic as Franklin is quoted as saying circa that time, way way way long ago.

Guildofcannonballs said...


As sad as Althouse was before Lem's Levity took hold, it has remained Althouse, however flawed and racist and bigoted.


Guildofcannonballs said...

The beauty: THos e Powerless cunt Iowna's saved the woerld through megawehat bellies fucking everhiung coiud grow a belly.

Guildofcannonballs said...

Tyhe unbueaty:

Officer I pay for that car so get the fuck out of here, now, bitch.

You got kids bro?

Guildofcannonballs said...

Look I don't konw why this shit happens but it has.

One name

Different dudeds




I says to the guy I just wanted to start writing about "e veeribody's Bucklsy" in he vein of Welles's "Everybody's Shaekespear" and whatnot.


Cath said...

My sister developed MS while living in in the Pacific Northwest. Her symptoms progressed quickly and she was walking with a cane and suffering double vision within a year. By chance her husband was offered a job in a desert area of the southwest and they moved. Something about the hot, arid climate suited her, and her symptoms retreated dramatically. Ten years later the cane is history and she walks with a just a slight limp. She credits it largely to the climate (as well as careful diet and stress management).

I know one person's anecdote doesn't mean much, but I would hate to not mention it, just on the off chance that even one MS sufferer might learn that they could perhaps benefit from trying a change from a dark damp climate to a dry sunny one.

traditionalguy said...

@ SteveR and Cath...Thank you. Your responses from the heart made me cry. And that's hard to do.

SteveR said...

Cato, I'm glad it has slowed for her. My initial bout of double vision lasted about a month, went away and I was normal for seven years. When it dcame back it was minor but noticeable and in the twenty years since only slowly gotten worse. Everyone's different. Most of my time was in Texas from before anything until 15 years in.

HT said...

traditionalguy said...

@ SteveR and Cath...Thank you. Your responses from the heart made me cry. And that's hard to do.
10/26/16, 7:58 PM


I appreciate reading the accounts, too.