Disclaimer: I am not a doctor though I have seen one played on TV; which merely qualifies me to hawk an over the counter painkiller… (and Pharma Co’s if you are listening~can we get a liquid aspirin/ ibuprofen etc? with out having to take cold meds? Thanks for getting right on that.)
I am relating what I have heard from other patients and experienced myself.
Damon Storm wrote me recently regarding the effectiveness of Qi Gong in managing his sarcoidosis…which has some symptoms very similar to ALS including occasionally slurred speech and difficulty breathing. He is completely without medication and thriving. I also was told about the wonders of Qi Gong through the remarkable film by Ben Byer, “Indestructible”. I highly recommend this exceptional film for all people, not just those of us touched by ALS. You can get more information at www.indestructiblefilm.com
Certainly, I am buying the book Damon requested I pick up “Qi Gong for Beginners” by Stanley Wilson.
In an earlier post I referred to the success I have personally experienced with adding lots of raw foods to my diet. Not only has the increase in fiber assisted in the smooth move department, but the increase in my energy level has been unprecedented and immediate. Even though I can no longer chew most salads I have been delighted by the variety on foods and recipes in the world of raw food. I usually stick with fresh fruit shakes in the mornings supplemented with hemp protein powder, ground flax seeds, liquid vitamins and greens( as in Perfect Food Greens) and spirulina. I also make several types of juices from fresh veggies. The Chicago Diner, Karyn’s Raw Cafe and Karyn’s Cooked ( www.karynraw.com) are 3 of my favorite local Chicago resources/ restaurants for vegan and raw food delights.
I will add a list of cook books or uncook books as the case maybe, in the future.
When it turns colder in Chicago, I have difficulty sticking to the raw food and I am drawn to more warm veggie dishes. Keep in mind I am not a vegetarian, in fact I have been an avowed carnivore much of my life, and I am a committed foodie as well as a certificate level Semollier since 1998. This is one of the reasons being reduced to a feeding tube is borderline unacceptable for me. However, regardless of my love of a great steak, venison roast or Lamb chop the difference in my overall energy level is undeniable when I focus on uncooked fruits and vegetables. Eating closer to the sun, I call it. 2-3 times a year I also participate in a raw food cleanse, for a month I will only have raw foods and I will do a 7-10 day veggie juice fast.
Interestingly enough my doctor had no dietary advice other than eat well, until I mentioned my intention to do a cleanse and to thereafter stick to a 70-80% raw food diet. Then we had nutritionists and concerns form my weight loss coming out of the woodwork. And I needed to drop a few lbs. I could actually lose 20 more and not be unhappy. I am conscious of keeping up my protein with nuts, protein powder, beans and the occasional eggs, fish and meat.
I have to attribute the fact that I am still walking and moving around so well due to a weekly massage. Every week for the past 3 years I have had a massage for 75 minutes at least. My muscle tone and overall strength is still pretty good, though I can no longer walk long distances along my beloved lake front, and the last 6 months has seen a marked weakening of my neck muscles.
I also highly recommend chiropractic care, upper cervical chiropractor Dr. Dan Fedelli, actually restored my smile after the right side of my face fell… it was lopsided for almost a year. I definitely notice the difference in my overall well being when I see him regularly and when I don’t, and he’s great about telling you when enough is enough.
I almost forgot my FAVORITE discovery: Bach Flower Remedies. For the first 4.5 years of my symptoms I had no diagnosis and was constantly dealing with the upset and uncertainty of the unknown. Little did I know I would yearn for the “unknown” in the months directly after my diagnosis! The result was emotionally I was ok as long as I wasn’t focused upon myself and my situation. The moment I had to speak of it with others I would tear up, especially at Doctor’s appointments out of shear frustration. Every single physician and specialist I saw recommended anti-depressants. It made me sick! I wasn’t depressed I was UPSET! Big difference. Anyway; the best thing that came out of my diagnosis was finding out emotional lability is a SYMPTOM. I wasn’t crazy and hyper emotional it was a freakin SYMPTOM! In retrospect it was perhaps the 1st symptom I recalled. Instead of dealing with anti-depressants, which in the 3 weeks I broke down and tried them had only made me more depressed and lethargic…I turned to Bach Flower remedies at my local Whole Foods Store. They are amazing and effective. I only take them when I want to or feel the need for support. There are no side effects. Only a mood stabilizing effect that allows me to get on with the business at hand.
So far we have Qi Gong, Raw food diet, Massage, Chiropractic care, Bach Flower Remedies and a must see movie. I have had some fantastic energy healing experiences, and dabbled in acupuncture though not enough to attribute any specific results.
I’d love to hear from you as to what you have experienced and had success with in reality.