Friday, March 12, 2010

A Tale of Two Nights – Rising to One Difficult Challenge of Living with ALS

Recently I read an article by historian, Tony Judt, called “Night”. It is one of a series of personal reminiscences that Mr. Judt has been writing for the New York Review of Books. In this particular piece, he describes what it is like trying to survive a typical night for someone who is nearly completely paralyzed. As someone with considerable experience in this endeavor, I can confirm that getting a good night’s sleep is potentially one of the most difficult tasks in dealing with ALS. Mr. Judt has been living with the illness now for about a year and a half. In his article, he describes the intolerability he experiences and the anger he harbors towards this unwanted and overpowering bed partner. He describes the challenge of getting through the night with eloquence and painfully detailed accuracy. You can find the piece at the following link:
Night - The New York Review of Books

As someone living with ALS for nearly a decade, and sharing a level of immobility comparable to Mr. Judt’s, the article stirs in me a great deal of compassion as well as a sense of “close to home”. However, what it brings into sharpest focus for me is the degree to which I have grown to master such circumstances by focusing my mind on thoughts that encourage, gratify and sustain me. After my health aide has completed the process of arranging my body for optimal possible comfort in bed, while lying there in a mummy-like state, I guide my mind away from my physical constraints. Instead, I turn my attention to prayers, visions of being healed, and gratitude for my remaining capabilities and the people in my life who sustain me.

It has taken me several years of dedicated practice to reach this point in dealing with the difficult challenge of sleeping with ALS. And even with years of practice, I cannot profess to have yet achieved a state of complete evolution. The result for most evenings, however, is to doze off within a few minutes of closing my eyes and rarely awakening more than once (usually to empty my bladder into a strategically placed bottle). Occasionally, I will have to disturb my wife’s sleep to handle an intolerable itch or an adjustment to my Bi-PAP. Fortunately, we are both typically able to fall back to sleep quickly and easily. My slumber is often accompanied by pleasant dreams in which I am fully mobile.

As if the battle with ALS was not enough for anyone to deal with, I am also a life-long member of the Tourette’s Syndrome club. The urge to twitch in a precisely particular way can be both mentally excruciating and physically irresistible. Imagine having an overwhelming need to flex a muscle while living in a state of nearly complete paralysis. Had I not learned to control the focus of my mind, I surely would have lost it by now!

6 comments:

  1. AMYOTROPHIC LATERAL SCLEROSIS (ALS)
    I was diagnosed of ALS (amyotrophic lateral sclerosis) in summer of 2012, my symptoms started out with a "foot drop" on my left foot, from there my left leg lost all muscle tone followed by slurred speech and inability to eat without getting choked, strangled, and coughing. My neurologist prescribed me some medications to help my symptoms but the medications did no good and their side effects were too severe. In 2015 i started on NewLife Herbal Clinic ALS Herbal formula treatment, i read alot of positive reviews on their success rate with the ALS Herbal treatment and i immediately started on the treatment. Just 11 weeks into the ALS Herbal formula treatment I had great improvements with my coordination, speech, breathing and muscle movements. I have basically gone stronger than i'd thought i could ever be again, visit NewLife Herbal Clinic official website www.newlifeherbalclinic.com or email info@newlifeherbalclinic.com. The fatigue and general muscle weakness had also declined, this treatment is nothing less of a miracle!



    Julianne Regan

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  2. My mother was diagnosed with ALS in May 2016. Her doctor put her on riluzole, letting her know there was no cure but the medication might provide her a few more months of delayed symptoms. ALS progresses at different rates and affects different body parts first. My mother, being 73 at the time, fell into a category of what they call "fast progression" (older female). Her arms weakened first, then her hands, her mouth, and throat, and finally her lungs. Throughout her two-and-a-half-year ordeal, she was able to walk with assistance nothing was really working to help her condition.I took her off the riluzole (with the doctor’s knowledge) and started her on amyotrophic lateral sclerosis herbal formula i ordered from Health Herbal Clinic, her symptoms totally declined over a 5 weeks use of the ALS disease natural herbal formula. She's now almost 75 and doing very well, the disease is totally reversed!! Visit there website www. healthherbalclinic. net

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  3. I was diagnosed with ALS (amyotrophic lateral sclerosis) 15 months ago. At that time riluzole was prescribed. I found I could not tolerate it. did very little to help me. The medical team did even less. My decline was rapid and devastating. The psychological support from the medical centre was non-existent and if it were not for the sensitive care and attention of my primary physician, I would have died. There has been little if any progress in finding a cure or reliable treatment. My ALS got significantly worse and unbearable because of my difficulty catching breath. Last year, i started on a natural ALS Herbal therapy from Green House Herbal Clinic, i read a lot of positive reviews from patients who used the treatment and i immediately started on it. I had great relief with this herbal treatment. I am doing very much better now, no case of shortness of breath or difficulty swallowing,, my ALS condition is totally reversed. Visit Green House Herbal Clinic website ww w.greenhouseherbalclinic .com. This treatment is a miracle!!

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  4. I would like to thank Ultimate Health Home for reversing my father's Amyotrophic Lateral Sclerosis (ALS). My father’s ALS condition was fast deteriorating before he started on the ALS Herbal medicine treatment from Ultimate Health Home. He was on the treatment for just 6 months and we never thought my father will recover so soon. He has gained some weight in the past months and he is able to walk with no support. You can contact them at ultimatehealthhome@gmail.com

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  5. I would like to thank Ultimate Health Home for reversing my father's Amyotrophic Lateral Sclerosis (ALS). My father’s ALS condition was fast deteriorating before he started on the ALS Herbal medicine treatment from Ultimate Health Home. He was on the treatment for just 6 months and we never thought my father will recover so soon. He has gained some weight in the past months and he is able to walk with no support. You can contact them at ultimatehealthhome@gmail.com

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  6. I would like to thank Ultimate Health Home for reversing my father's Amyotrophic Lateral Sclerosis (ALS). My father’s ALS condition was fast deteriorating before he started on the ALS Herbal medicine treatment from Ultimate Health Home. He was on the treatment for just 6 months and we never thought my father will recover so soon. He has gained some weight in the past months and he is able to walk with no support. You can contact them at ultimatehealthhome@gmail.com

    ReplyDelete