June 15th, 2013 90 days on DP
I purchased a Confidence exercise plate to use along with my elliptical and so far really like it! I had not previously heard of them but quite frankly I can get quite a work out on it doing squats, standing on toes, ball of heels etc. I also bought book (which is way over my head!) but it explains in detail how/why they work (it's meant for trainers and PT's)
Exercise is a huge part of using the Deanna Protocol successfully and the exercise plate is something Deanna uses as well...worth looking into for those that can stand.
Since being on the DP I have loosened my frozen fingers and went from no use to squeezing a stress ball, then to a 5# digi-flex and now a 7,5#!
2 months ago I struggled to do 2-3 minutes on my toes (on elliptical) now I can do 10-15 on my toes and not be exhausted and I do two 20 minute workouts a day.
The negatives are difficulty standing up and shoulder pain but I work on both and do ROM exercises as well. I do stacked breathing exercises as well as use a Power Lung and I don't even breath hard when using elliptical.
Some feel that the DP is to difficult to follow and therefore cast a negative light on it, so the following are
my personal feelings that may help others decide what is right for them....
I continue to stall progression on the DP and I value my life enough that 5/10 minutes a day taking pills is well worth it. I respect that others may feel differently but I know teenage diabetics who for the rest of their life must ck their blood sugar multiple times a day, give themselves injections multiple times and carefully watch their diet...failure to do so means certain death or at best amputated feet (I have witnessed both!)...they don't complain that it's "to much"...they just incorporate it into their lives to survive.
For those that value life and find it worth fighting for...the Deanna Protocol is not something you can do "just a little of"...it requires a full on commitment to follow the protocol, exercise and follow a clean diet low in high free glutamate and preferably gluten free (grains are high in Omega 6 which is inflammatory)
I work out an hour+ a day...I enjoy it, it makes me feel good and keeps muscles from becoming paralyzed, I eat clean choosing organic grass fed meats (venison in my case), fish, fresh fruits and vegetables, I consume coconut oil and MCT oil to help increase ketones, take a series of pills three X a day (2 minutes time each) and I take AKG every hour (1 minute)I rub CO on twice a day (my wife puts body lotion on daily..c-mon it's no big deal!) I don't shower it off...takes 5 minutes a.m./p.m., I use Liposomal glutathione, undenatured whey protein and Milk Thistle to help keep antioxidant levels high.
I also conduct our family farm/habitat business, spend hours on the phone with clients, create plans, submit cost share applications and more...in otherwords...business as usual. I'm a "working man" and I owe it to my wife and son to remain independent as long as possible, doing otherwise because it's "to much trouble" to me is outright laziness but that's only my personal opinion of myself and not others...your choices are yours and yours alone and none of my affair.
In short...if living a longer, better quality of life with ALS is not your goal or seems to much trouble or effort to make it worth it, or you simply wish to "get this over"...the Deanna Protocol is not for you.
If however your life has value and it's worth fighting for, visit Winning the Fight, download the Protocol, read thru the forum comments and decide if it might be right for you? Keep in mind that anyone with ALS today will not live to see an approved treatment or cure...we either help ourselves...or die
The following are reminders (from Dr T.) that much higher levels of AKG are usually needed (I take 3's the protocol suggested amounts)
"There have been questions about how others are doing on the protocol. I can honestly say there have been very few people who have not seen an improvement on the protocol. Those who have not improved have been taking very low doses of AKG. This has been mentioned before in the forum but it is so important let me state it again. This observation comes from many emails from ALS patients. Ones muscle symptoms [fasiculations, twitching , tremors, cramps] determine how much AKG you need. If these symptoms are pronounced you need more AKG If one has a very active day they may see these symptoms increase then they know they need more AKG. Those patients who have not seen an improvement were not taking enough AKG.
Our hypothesis is that cells die because they lack energy. The energy mechanism is shut down because AKG is lacking because its precursor [glutamate] accumulates in excess. AKG is a very important substrate in the TCA cycle located in the mitochondria. In fact if AKG is lacking NAD cannot be reduced to NADH so this is then lacking in all the other TCA cycle substrates.
It may be if your disease progresses you will need to increase your AKG. We don't know whether AKG can be stored or what its 1/2 life is or how fast it is used up. Hence take AKG every hour while awake. How much? Use your muscle symptoms as a guide
Dr.T."
ALS varies widely, so some very aggressive cases may not see hoped for results just as we see with stem cell transplants or chemo in cancer patients, so because some are not helped doesn't mean many more (such as myself) are not slowing or stalling progression....
