thnx Mattie

Thanks Mattie,

I did the stretches in bed today.

I took my herbs with my coffee.

Here at 2 things I picked up from PLM

Exercise

Muscles die in ALS, rigorous exercise can make you weaker. Maybe not everyone but for myself and many I have Known. The reason there is still controversy is that medically both sides have their merits and their warnings. I have heard ALS muscles compared to batteries. They can only hold as much energy as nutrician and rest can provide. over use kills the cell and makes recharging more difficult.

Rob

CoQ10 Supplementation Delays Exercise Fatigue in Study

A new study conducted by researchers from Osaka City University Graduate School of Medicine, Soiken Incorporation, Kansai University of Welfare Sciences, and Osaka University of Foreign Study and published in the journal Nutrition investigated the effects of eight days of CoQ10 supplementation at two levels--100 mg per day and 300 mg per day--on exercise performance and perception of fatigue in 17 volunteers. 

All subjects rode stationary bikes to exhaustion at a fixed intensity on three occasions separated by washout periods. One trial was preceded by eight days of CoQ10 supplementation at 100 mg/day. A second trial was preceded by eight days of CoQ10 supplementation at a level of 300 mg/day. And a third trial was preceded by an eight-day placebo treatment. 

Time to exhaustion was found to be significantly greater in the 300 mg trial than in both the 100 mg and placebo trials. There was no significant difference in performance between the 100 mg and placebo trials. Perceptions of fatigue were also reduced by 300 mg of CoQ10 supplementation. The authors of the study speculated that, at adequate doses, CoQ10 might delay exercise fatigue through its role in aerobic energy metabolism and its function as an antioxidant. Previous research on the ergogenic effects of CoQ10 supplementation has produced mixed results 

A BATH

I take a bath.

I take a hot bath because it helps with circulation.

My legs are continually frigid even in the warmest of weather.

This is peculiar to me, as my legs, my body, have always been oven hot.

I soak my cold legs and read "The Power of Now" by Eckart Tolle

(about giving into the moment, about trying to stop thinking - is what it is about so far).

I'm in the tub and my front door is ajar.

Why you ask?

It's how I want to live, I answer.

It's a feeling about (how life should be) that I'm partial to.

The needs of my soul?

Jackie (my sitcom neighbor) pokes her head in the front door.

"hellooooo? Charlie?"

"Come in, I'm in the tub."

The bathroom door is wide open.

Jackie marches straight over to the bathroom and and I put a loofa over my private parts.

"Jackie! Don't come in so far!"

 "Oh why?! You're like a son to me! We don't care about that kind of thing in my family. You're like a son to me!"

And since I have a fatal disease, I release my propriety. I change character on a dime. I  give in to full frontal. I give in, and Jackie (who could care less) ...

Jackie and I have a conversation about the ORSO I have cooking on the stove, her sister, who is a shy nurse visiting from out of town, and the Beales of Grey Gardens.

Jackie lent me the dvd of the documentary the other night.

"So are they crazy or what? I mean there is something wrong there, living in that trash...  I mean who lives like that,  except terribly mentally ill people? Don't you think?"

Jackie shakes her head and stomps her foot to make an impression on me, to make me see how MUCH this disturbs her.

"But you know what? I kind of get it, Jackie. I mean, they weren't raised to pick up after themselves, and they had some rotten stuff happen to them that they just weren't equipped to handle. I mean, I could see just letting go... living in my dilapidated mansion, eating out of take-out cartons, feeding the cats and squirrels.  After awhile, you just give in and embrace the day."

"They could have put up some curtains or something!  They could have called John or Ted Kennedy!

Those were good men, they would have helped!"

Jackie smiles when she says this, like she found the answer, that had SHE been in their shoes, things would have been different.

"Well, I guess I can see why they didn't call the president or leave that place. After  awhile, you're just holding down the fort, trying to hold onto what you got. You just don't want to risk anything." - thinking of myself, thinking of myself in my little world on the ninth floor of River Place, having not left the apartment in three days.

The timer has gone off.

I lie in the warm tub and Jackie checks on my ORSO.

"It's done, but Charlie, I can't turn the buzer off.

See? That's MY mental deficiency. I have no understanding of how these things work."

(Jackie has the same kitchen as mine but doesn't use it much).

"That's okay, leave it. I'll get it later."

And so the buzzer buzzes,  Jackie leaves, and I meditate about this moment.

Leslie

Hello Charly, Welcome to this site. You will find lots of useful info and good friends. It seems you are progressing slow, or at least slower than I. I hope you stay positive. Greetings Leslie

_______________________________________

Hi Leslie,
Thank you for contacting me.
I haven't updated my profile. I need to update my "progress". I just haven't.
I am in denial so I feel pretty okay every day.

I have always been the type who enjoys self improvement.
Now (delusionally) I feel like if I am creative, healthy, gentle, and keep moving and praying, and not let it scare me, something will happen to save me.

When I read too much about it, I feel overwhelmed. That's not me. That can't possibly be me, I think. Like I'm watching someone else's TV movie of their life story.

I do have some speech issues. (I used to do voice overs for TV commercials for a living).
And my walking is crazy.

But I am holding onto hope that I will persevere.
I've decided to eat organic as much as possible.
I've decided to work out (in some capacity) daily.
As for all these medications? I am lost. So much research. And I don't want my life to be only about this issue.

I'm trying home remedies.
Vitamins.
Hot and cold showers for circulation. Heating pads. Lots of water.
Stretching in the tub. Prayer and meditation.

Today I will "dance and move" to music and see how that feels.

When I read about the inevitable, or talk to medical people who tell me to enjoy this moment because that's what is left for me, I reject it. I'm about hope and progress, and that is what enjoying the moment is for me.

Charlie Roberts

__________________________________________

Hello Charlie,

Thank you for your reply. I can understand your attitude. I also am kind of in denial. I am sure I won't die. (but in the meantime I don't make any plans anymore for the future and I am afraid I won't be there at my steph daughters marriage next year).

I think the good new is: you don't have to bother to much about medicine. I think nothing really helps, The speed of your progression is probably more influenced by genetical factors. Working out Though does seem a good idea. I have read the forum thread of you with clipped wings e.a. about working out. I think it might help. On the other hand I think muscles deteriorate because ppl stop working out, but more ppl stop working out, becouse it becomse to hard. For instances I told my doctor I decided to stop walking, because it made me too tired. But actually it is the other way around: I just could not walk anymore. It costed me so much effort that I was exhausted after a few steps. Now two month later I can't walk at all, but I think: that's why I had to stop, because the muscles where too week allready. Dancing for practicing your muscles is of course great. I am playing the clarinet, which is a great way to practice my diaphram.

Good healthy food is of course a good idea, specially with enough fibres. For the rest I really believe that it does not make any difference which medicine you take or leave. A lot of trials have been done into vitamines, Q10, creatine, Everything seemed very promising, but the trial showed: it does not make a difference. On the other hand: if you are so unlucky to have a specific gene mutation you will die very quickly, or whith an other mutation will live very long. That makes really a big difference. So don't worry too much about what you eat and which medicines you take. I am following the forum thread about stem cells, but I don't believe that it will help one bit. But who knows? I am participating in the Lithium trial. A few month ago there was a big hype of people who were certain that would give the cure. Now it is LD Naltrexone (that's the word I think). Tomorrow they will run after something new. I put my hope entirely on good scientifical research. I maybe wrong of course.

In the meantime: you don't have to worry about your disease. Just try to live a life as happy as possible. The future is something for tomorrow and may not even happen.

O this was a long reply. It's was just for me to vent my feelings. Thank you for listening.

Good luck,

Leslie

to Greg

Hi Greg,

Saw your comment regarding acam and gluthotione.

And I read your profile. 

I used working out to keep me sane.

I biked every where. I would go running, workout and play tennis all in one day.

The more tired I felt, the better.

When I came to face this, I sat on the couch. Angry. Lost.

But now I've decided to go to the gym every day anyway.

I used the lowest weights. I do reps of 5 to 10 each. I lie on the mat and stretch.

I swim, but I'm careful not to feel my arm muscles building.

I bop around, kick, swim under water, hold my breath.

This makes me feel better mentally. And I think the body follows the mind.

So I put exercise back in my daily routine.

In the mornings I've been stretching in the tub in warm water.

As to medications and supplements, it is ALL so confusing.

I'm making sure to eat three big meals a day. Drink water.

I'm going organic. I may reduce dairy and wheat.

Tons of vitamins.

A chinese chiropractor told me to use a heating pad at night in bed on my legs to keep my circulation going.

I'm doing glutathione and b12 at a clinic.

But as to all the mediations, I am completely confused.

My doctor in New York (who is well respected but I didn't care for) told me I could cause myself more harm than good by taking lithium and other drugs... 

Anyway I thought I'd share my course of action... beyond just sitting on the sofa.

SURVIVOR

About six years ago, I saw a friend do (stand up) at "Don't Tell Mama" in midtown.

One of the comics that night, was from the show "Survivor".
"Don't Tell Mama's" was packed.
I was the last one to squeeze in.

I had to sit down front.

After I got by bearings, I looked around and realized the entire room was filled with "Survivor" contestants (old and new). I was one, of  handful of people. that wasn't from that reality show.

It was (of course) surreal.

It was the year that  Ethan Zohn won. And there we sat, elbow to elbow at the same table.

Ethan Zohn: 'My Cancer Is Back'

By Mark Dagostino

Originally posted Monday September 14, 2009 07:55 AM EDT

Ethan Zohn

Just last month, for the first time since being diagnosed with a rare form ofHodgkin's disease in April – followed by three months of intense chemotherapy – Ethan Zohn was finally feeling good.

"I was off chemo," he says. "I was running up to seven miles" inpreparation for November's New York City Marathon. "I was happy, I was going out. I went up to Boston to see the family and was feeling great."

WATCH: Ethan Undergoes Final Chemo Session

Then, on Aug. 26, his doctor called with post-chemo test results – and they were not good. "My cancer is back," Zohn, 35, tells PEOPLE. "I have never been so scared in my life, for my life."

"It was a complete punch in the face," says the Survivor: Africa winner, who had been making regular video diaries for PEOPLE.com. (Stay tuned for the latest chapter.) When the bad news hit, Zohn decided to wait until doctors started him on a new course of treatment before sharing the news with family, friends and now the rest of the world.

WATCH: Ethan Thanks Fans for 'Awesome' Support

Family Reaction

"My mom was obviously upset," Zohn says. "My brothers – everyone's upset. They can't believe it's what's happening. But on the flip side, everyone's positive and supportive."

He adds, "You have to think positive. And you have to find the strength, which I will. And you have to rely on other people, which I will."

The chemotherapy Zohn had endured since May left him hairless and plagued by nausea. But it did have some positive effect: The mango-sized tumor in his chest shrunk significantly. "The original mass is pretty well contained," Zohn says.

That's the good news. The bad news showed up on PET and CAT scans: "There was re-growth," Zohn explains. "Two little nodules in a different location … It's quite rare that not only is there re-growth, but that there's re-growth so quickly. I was obviously resistant to the first form of chemotherapy."

Now, doctors have ordered a stem cell transplant aimed, as he puts it, at "hitting the reset button" on his body.

New Treatment

The new treatment – officially called risk-adapted high dose chemoradiotherapy and autologous stem cell transplantation for patients with relapsed and primary Hodgkin's lymphoma – will take place in three stages.

The once-shaggy-haired soccer player just emerged from the first part of stage one: He spent three days in a hospital last week, where he received a combination of chemotherapy drugs referred to as ICE. Since Zohn's immune system was in such a fragile state, his girlfriend, Survivor: The Amazon winner Jenna Morasca, slept in a chair at his bedside each night dressed in a hospital gown, protective mask and rubber gloves.

After three weeks of rest, he'll return to the hospital for a second in-patient ICE treatment that will last four days. Doctors will then harvest healthy stem cells from Zohn's body and freeze them for later use.

"In stage two I will get blasted twice a day for 14 days with a high dose of radiation," Zohn told friends via e-mail last week. "In the final and most difficult stage, I will be admitted to the hospital for 30 days (yes a whole f'ing month), to get my final chemotherapy session to start my stem cell transplant."

Remaining Positive

Zohn says that both his red and white blood cell count will be brought down to zero during the month-long hospital stay – most likely in December – at which time his frozen, healthy stem cells will be reintroduced with the aim of replenishing his body entirely with non-cancerous cells.

"Then I'm cured," he said in his e-mail to friends, showing his usual air of hope and humor. "Easy as 1, 2, 3 … 4, 5, 6, 7, 8, 9 … 1000 … 1,000,000."

As he has since beginning his battle, Zohn is vowing to remain positive. "Whatever things are thrown at you, you've got to battle through with a smile on your face," he says, "and the important people in your life around you."

THIS IS STUPID I KNOW

I  can't walk well.
I am scared to swallow the vitamins I take all day.
I am stuck at home because my bike is broken.
I haven't been outside in three days.
I have no TV.
I stagger too much to pick up after myself.

But...

I feel optimistic.
I feel like... if I do all the right things, I'll be okay.

(This is stupid. I know.
I know there is nothing out there to support this).

But.

I feel like, if I stay relaxed, if I stay creative, if I am sensitive to my body, if I don't panic, if I don't let others interfere with my sense of well being,  interfere with my enthusiasm and hope, I will have an opportunity, an opportunity that will revive me.

Last night, I slept twelve hours. In the late morning, I had my one cup of strong coffee and read the Times. I read an article about Jules Feifer's wife.  She has a new (one woman show) about surviving cancer.

I think... I guess... I wouldn't be able to perform a piece about my disease. It's too dire. No triumphant comeback here. My disease is ugly, not to be looked at. Too cold and glaring. I guess.

(I don't think about it, much. I don't have to distract myself about thinking about it because I have no interest or natural talent to understand it).

(Someone died today (on my "patients like me" website) of pneumonia. Never occurred to me that that would be the end. I mean, everyone dies of pneumonia. I guess that pneumonia is just waiting around  to finish off the job for all the lazy and undisciplined diseases,  like vultures after the body has been ripped apart).

In the article about the play about cancer, the playwright mentions C. Sheer as an inspiration, and (also)
E Handler.  Sheer I know quite well from a two year acting program. And Handler I've been in several readings with. Perhaps I should read their plays for inspiration, or just to copy them.

the cocktail

The good news is I am officially on SSD and medicare.

I'll receive a check starting this month and medicare kicks in this month too.

No more $450 monthly payments to SAG insurance which is good because my last check bounced (I think).

I'll get around $500 a month from my pension unless I take a lump sum.

The bad news is that I'm on social security and medicare at 46 years old.

BUT.

If I stay healthy and can slow or stop progression, there just might be some breakthroughs around the corner.

One fellow ALS person compares it to AIDS and some forms of cancer.

They may not find the cure but perhaps they'll find away to keep people healthy.
A cocktail.

patients like me... I guess.

I sit around and read from the website "Patients Like Me".
I look for patients that are my age and sex.
I want to get ideas for supplements and therapies.

I find Drew.
Drew is 36, male and from Stamford Conn.

Oh good.

I go to his profile.

Nice looking guy, a hockey player.

I read,

he's been to China three times for stem cell therapy!

He is charged up.

He writes he's

"HELL BENT ON BEATING ALS AND I'M NOT MARRIED AND I DON'T HAVE ANY KIDS- ALTHOUGH, I WANT THEM! ... I THINK THROUGH HARD WORK AND RESEARCH - WE CAN BEAT ALS."

I like the way this guy thinks. Why was I listening to that doctor at Columbia Presbyterian?
I should be going to China. This guy is on a lithium too.  Something my doctor discouraged.
It could make you worse,  he said.

Drew doesn't care, and neither should I.
It's my life and I want to fight this thing!!

There are photos of Drew swimming. Pictures of him with his PT.

And he has a blog!

(I should write in my blog).

Let me go to his, and see what his blog is like.

And I read;

Our Drew lost his battle with ALS on Tuesday April 7, 2009. His family would like to thank all of the people who made Drew's journey a little more bearable by following his blog, leaving notes of encouragement and comments. He will not be forgetten.
Thank You,

The Schroner Family