Cupcake Cafe

Cupcake Cafe
Originally uploaded by Charlie Roberts

PEP

Blue Skies-

Hope it's okay to give you my pep talk.

I have my doctors appointment next week. I HATE them. It takes me a week to get back to feeling okay.


I am progressing too. I'm trying to fight it. But I have slush mouth, my breathing is weird, I have a hard time swallowing, my arms ache from doing all the work.


I'm doing most of my own cooking. I force feed myself. I look at the kitchen clock and say, "now I will eat for the next 25 minutes".  No joy, all work. I carry around sunflower seeds and nuts to keep from ever having an empty stomach. 


My big sin is the morning, coffee time. I sip coffee for an hour or so on an empty stomach. It's not a good idea but I live for it.


My weight (I think) is around the same. I hope.


I went to see a naturopath. He gave me a protocol. I'll try it for a couple of weeks. He told me I had a weak lung, a bad liver and spleen and other stuff, from looking at my tongue and taking my pulse. (He was right, I had a tiny part of one lung collapse from an infection about four years ago- perhaps this was the beginning).


And for tonight? Maybe I can have an optimistic outlook. (just tonight)


Blue Skies, when you're feeling scared or down, remember - there are a lot of things going on right now with drug trials. One of them will prove effective in the next year. 


Something good will happen with stem cells. It IS going to happen.


We'll be part of a group of people that survives this. When you're feeling down or weird. Picture being on 60 Minutes talking about the miracles that saved your life. Do what you have to do, to get to that 60 Minutes or New York Times interview. The mind informs the body. Inform your body that you will be strolling around the Louvre in ten years.


-CR

Jackie

Jackie
Originally uploaded by Charlie Roberts

Cupcake Cafe

Cupcake Cafe
Originally uploaded by Charlie Roberts

BROTHER

HALFWIT

I finally meet  John or "Clipped Wings" in DC.  A former airline pilot, John had just finished building his own house (with it's own landing strip) when he was struck down by ALS.

I've often written to John because he is the most articulate on "Patients Like Me" and he has done and continues to do, gobs of research.  He's the most vocal, righteous voice on "Patients Like Me".

When I was first diagnosed, I would send him links to articles I discovered on the web, articles that I thought might have something to do with a cure.

Most of these links were stupid. These were articles about how to rebuild muscle or possible cures for MS or Parkinson's. But John was pretty nice about answering each one of my suggestions.

On his personal page on "Patients Like Me" - instead of using it for personal information (I have stuff about being an actor) John wrote this...

__________________

Instead of blah,blah,blah about me, this space is better utilized to tell you how I am fighting ALS.

1. Forget the drivel you received at diagnosis about 2-5 years life expectancy.  This is only true if you choose not to fight. 

2. Utilize the internet and other ALS patients with a progressive mind to build your knowledge of ALS and potential treatment options.  Knowledge is power, and within months you will probably know more about ALS than your neurologist. 

3. Antioxidants, the single most important category of supplement for ALS patients.  Every pALS has extensive mitochondria damage due to oxidative stress.  This gives rise to mutant astrocytes that have a role in the death of our upper/lower motor neurons.  Recent studies are showing that our motor neurons can be supported in this hostile environment with mega intake of antioxidants.

4. Exercise.  If you can still exercise, it is vital that you continue to do so.  Studies are beginning to show the value of light/moderate resistive and aerobic exercise in slowing ALS progression and increasing quality of life.  If you do not exercise, you will experience disuse muscle atrophy in addition to the ALS atrophy.  Your objective is to maintain your health as long as possible in order to take advantage of stem cell procedures or potential drug therapies. 

5. Maintain maximum intake of healthy real food.  Much of your antioxidant content can come from real vegetables, organic if possible.  Resist the easy temptation of liquid formula nutrition.  While the human body can subsist on formula, it cannot be healthy on formula. 

6. Don't become depressed by the depressing topics on PLM.  Learn to study personal profiles and pay close attention to the pALS who are dying.  You will see that those people who are quick to put an extensive plan of survival into action do relatively well, compared to others who quickly die.  Remember, you must stay alive to take advantage of upcoming treatments. 

7. It is your life.  Are you worth fighting for?  Use my profile as a reference.  I am here to support you in your fight and can be reached via PM. There are no stupid questions.

___________________________

I was (and still am) inspired by John's plain-speaking autodidactic approach.

I knew he would be in DC. He wrote on a posting that he would have big signs taped to his wheel chair,  with slogans like "Don't let my Daddy Die!" and other signs having to do with being a young father. 

And when I spotted his wheelchair in the enormous Marriott lobby, I got a few butterflies. I figured we might engage in defiant rhetoric. "How you likin' that ALSA?" he'd ask snidely.

I pictured him lecturing me about not giving into their hot air and then giving me a hard handshake with a "go gettum" smile. 

John's chair (I could see) had the signs as promised  (along with some attention getting wind whirly-gigs) - we need attention not a tea service buffet - he's right!

I spotted him in a group with fellow Virginians preparing to attack the hill.

I scooted up and brazenly interrupted the meeting.

"Are you Clipped Wings?" 


(I felt giddy, like we were pen pals meeting for the first time, or I was meeting a favorite writer).

I couldn't see his face, his back was to me, but his young and very pretty, blonde wife, answered for him.

"Yeah, that's John. He's clipped wings." (She seemed tired, a little bitter).

"John, you have a visitor."

John turned around and... like EVERY f-cking thing with this disease, my heart sank,  another crushing disappointment....  and, at this point, there's no place to put the lost hope, no drawer to chuck it in.

John is very thin (wasted). He cannot speak. He cannot raise his hands from the sides of his wheel chair. He's terribly weak. He reminded me of men I'd seen in the final stages of HIV.

"Oh! John! It's me! Charlie Roberts! I just wanted to say hello." 

"Well thanks for stopping by Charlie" his wife says for him.

... and then I must back out of the little meeting because there is nothing else to say. John can not speak.

"We write to each other on "Patients Like Me" - I over explain, I smile weakly,
 " and... I just wanted to say hello... so ... hello!"

I scoot away and John cannot even turn his head to say good bye. 


The caregivers are like tired parents, the people with ALS, their undeveloped troubled children. And each of us with ALS, have our own individual developmental problems. Our meetings and interactions are off and unsatisfying. Our caregivers, like anxious parents, have to make it all okay.


And...

The weird thing about ALS is.... and I have experienced this in small ways,  John's body looked withered and weak but his mind is perfectly sharp. If he had had AIDS or cancer, his mind might have been exhausted and weakened too. But with ALS, you have this feeble body with an untouched brain. People react to you -speak to you, like you're addled, but you're not. Your imprisoned in a rotting body with a perfectly stable clear mind.

As I was backing away from the group, I heard the same patronizing tone in MY OWN voice that so many others have used with me.


"Just wanted to say hello!" I say to the healthy wife, implicit that I'm still in her world, not his.

You see a feeble person, you can't help but speak to them like they're a halfwit.