I have been meaning to write – time and patience.
Since June 15 I have been doing interval training on the treadmill everyday for 30 minutes. I warm-up for 4-5 minutes, incline to the point just below where my heart is going to come out of my lungs for 4 minutes, go back down for 4 minutes, then back up again for another 4 minutes. I raise it up another .5 incline at the end.
I have been feeling amazing.
I am doused with sweat. I cannot talk, my breathing has been keeping step with my pace.
Recently, I saw this Chronicle episode where this young man, Dan Cummings, at the age of 19 dove into a pool and broke his neck; he became a quadriplegic. Over time, his arms regained function.
For 3-4 years he went through one of the best, if not the best, physical therapy programs in the Boston area. But – he was frustrated. The exercises were to adapt to living in a wheelchair. He wanted to walk again.
He did some research and found a facility in California called Project Walk, a San Diego based program. But in order to go to California, he didn’t want someone to have to go out there with him, so Dan “spent the next 11-months becoming independent enough to live out there.” (http://www.journey-forward.org/news1.htm).
He said that the moment he entered into the facility he knew he made the right decision. He went on to say that the energy he felt when he walked in, and the belief and faith that people had that he would walk again gave him chills. So much so – he started to get choked-up on camera.
All the exercises at Project Walk were with him out of his wheelchair; which here in Boston, majority of them were in his wheelchair.
People believed he would walk again, because others had – and it was and is possible.
He emphasized that the difference with people believing in him versus trying to make people believe was like not having to climb that mountain by himself. That rush of energy was behind him, pushing him; not him trying to pull his body weight as well as theirs’.
After 4 years – he walked again.
He uses a walker, but he is vertical, using his 2 legs. It is by belief and faith, by everyone around him, that he was able to walk.
Like it has been done, so why can’t it be?
He eventually came back to Boston, raised $380,000 and opened his own facility based on the model back in California called “Journey Forward” (http://www.journey-forward.org/news1.htm). Insurance does not cover the therapy; it is too innovative – to be honest. Individuals usually have to pay $80-100/hour.
I am not downplaying traditional therapy; there is a place for it, but alongside this therapy.
It has been 13-years since his accident – he is walking, inspiring and being an example; a leader; that it can happen.
What does this mean to me?
Doctors, medicine, concentrate so much on the numbers. I know that this is important. Their practice is based on research with all the diverse populations, ages, abilities – they have to find a common denominator. They lose sight on what could be. What an individual is capable of.
Back home – people pushed me. My doctor would say to “I want you to drink 20 glasses of water a day.”
In time, he then tells me, “I tell my patients about 30% more than what I would think is needed. I tell you 20 glasses, but I know you will probably drink 15-17 glasses.”
They would tell me – “Keep doing what you are doing.” I would be pressed to work-out 3, 5, as many days I could a week and keep doing it.
My doctor told me in my early 20’s that I could live to seventy – 70 years – maybe he was telling me this knowing it could be 30% less; I will never know for sure.
I do know – that there is a very inspirational person who has CF; who is probably around my age that was down and out in his teens after he had one exacerbation and then two-years later at 17 he had another exacerbation – right during prom. He went into the hospital for 2-weeks, IVs, etc.
His first exacerbation brought him down and he never was able to shake off the depression he was experiencing. The sudden loss of control, ability, surge in his life.
He retreated inside of himself; felt disconnected to his peers – not many people at that age understand the severity of the present when it is sitting on you – literally.
He felt isolated. But, after the second exacerbation he eventually got back into skiing, something he had always loved. He began skiing a lot, and bonded with some of the other skiers. Overtime, he started to open-up about his experiences. His set-backs. His loss in so many words.
Through skiing and the relationships he built, his PFT’s increased. He went on to take a trip away from his therapies for a length of time and came back with a 10% increase in his lung function.
Unprecedented.
Reflecting – what do these two stories mean to me? I started my interval treadmill training after speaking to a friend of mine about how to really push yourself, without running. Running always had the biggest impact on my lungs; my knees can no longer do it.
That focusing on the sky, the journey, and not the numbers is what I need to do. I need to push myself with exercise – not that I haven’t before; because it seems pretty much that is all I do.
I am going to do a 20-mile hike next year in one day for CF. I have to raise $2500 – I can do that. I have to train; I will do that, as I have currently. A full 30-days of interval training with no days off – because I am trying to utilize it as my complimentary therapy.
The vest treatments are my Boston; the treadmill, hiking, and reaching for the stars is my California.
Do you think I am going to go down without fighting – fuck that.
When your time comes, it will come. No matter how much work you do, how much medicine, how much will. I really truly believe that. Until . . .
Side note: my doctor’s appointment yesterday – interesting. I didn’t even look at my PFT’s – I didn’t take a copy, although I will get it later. I am over the hump of getting IV’s. I am having this inflammatory process that needs to calm down, allergies perhaps. I am over the “mattress incident” as my doctor puts it – laughing, because he doesn’t know what else to call it.
I started Advair, a short-term steroid; an inhaler; Flonase for my sinuses to clear and relax this inflammation. I think we have been chasing the wrong rabbit – not the infections, but the inflammation that leads to restriction, mucous getting caught inside, and then the infection. Have to stop the inflammation before it restricts. Or better yet – as my doctor said back home – therapies are the most important thing – if you don’t have mucous in your lungs to get an infection you don’t have to worry about which antibiotic or antibiotics at all. Thus – the interval training.
And my doctor gave me a very small glimpse into these studies. He didn’t say any numbers, but he thought maybe I should get involved in one of these studies, which he doesn’t say often – because he is a man that says only what needs to be said.
I know things are coming; the literature, the stocks – I can feel it, it’s coming.
To read full stories, resources:
Chronicle: http://www.wcvb.com/chronicle/tuesday-june-4-i-will-walk-again/-/12523032/20362318/-/18allj/-/index.html
Cystic Fibrosis Lifestyle Foundation, Living Stronger! Living Longer! : http://www.cflf.org/
Journey Forward: http://www.journey-forward.org/news1.htm