- Sex: M
- Data Quality: 1 star
- ALS: 3 yrs
- Bulbar: moderate
- Arms: severe
- Chest: mild
- Legs: moderate
- Male, 48 years
- Summit Point , WV
- Primary Condition
- First symptom
- Aug 23, 2010
Until December 2007, I was an airline pilot flying B-767s on international routes for MaxJet Airways. I retired when I could no longer reach and operate the overhead panel. I am married with an 8 year old daughter, and find retirement at 47 quite unpleasant. I was always intensely active and productive with several projects going at any given time. Interests included ham radio, weight lifting, road bicycling, wood working and metal fabrication. I just barely finished building a lovely cedar A-frame home and hangar in a residential airpark before ALS took me out.
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.
August 9, 2009
But wait! Things have changed! I have tentative plans to become a research subject at Tec de Monterrey School of Medicine in October of this year. Stem cell transplant procedure that carries the hope of a 22-25% FRS increase over the course of the first year. Maybe I will fly again.
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