Great, wonderful, fantastic News babe! Sorry i've not got a lot of time to replay today but i really really want to chat.....i'll definitely get back to you tonight!
Hey babe :D I got to tell you, it was so so nice to see your atar picture turn up on our boards again, i don't see many oldies lol but goodies these days, so thank you for coming back and letting us know what has been happening to you!
WOW what an update :D I remember you mentioning after the brain surgery that you were getting into one of the MS diets, couldn't recall which but it actually sounds like the MS program by Prof J has really been doing you the world of good, yeeeeeha babe
Although i'm an advocate of diet and the beneficial overall well being and neurological aspects, because of our unusual or rather weird family history with diets, medication etc, lol don't hate me but i'm still a sceptic that changing to any specific dietary related program is going to eventually become the cure for MS, even with our family history i personally need a lot more scientific research behind them before i'd be comfortable with the validity of what the dietary programs are generally claiming...
"Different diets have been proposed as treatments, or even cures, for the signs and symptoms of MS. Most of the diets touted as helping people with MS have not been subjected to rigorous, controlled studies, and the few that have been evaluated have produced mixed results.
Most claims made for dietary treatments are based on personal accounts, and reported benefits may be changes that could have happened without any treatment....
...There is some evidence that a diet low in saturated fats and supplemented by Omega-3 (from fatty fishes, cod-liver oil, or flaxseed oil) and Omega-6 (fatty acids from sunflower or safflower seed oil and possibly evening primrose oil) may have some benefit for people with MS.
A recent research review paper by Pavan Bhargava, MD, provides information and current evidence for each of the most popular diets.
Some special diets may be harmful because they include potentially toxic amounts of certain vitamins, or exclude important nutrients. That's why it's important to consult with your healthcare professional before starting any diet that includes nutritional supplements or vitamins."
The association of diet with quality of life, disability, and relapse rate in an international sample of people with multiple sclerosis. (2015)
Hadgkiss EJ, Jelinek GA, Weiland TJ, Pereira NG, Marck CH, van der Meer DM.
Of 2469 participants with confirmed MS, 2087 (84.5%) provided complete data on their dietary habits (DHQ total score). Multivariate regression models demonstrated that every 10-point increase on the DHQ total score was associated with nearly a six-point and five-point increase in physical and mental HRQOL, respectively, and 30.0% reduced likelihood of a higher level of disability.
After controlling for age and gender, and the other dietary covariates, 'healthy' consumption of fruit and vegetables and dietary fat predicted better quality of life and less likelihood of higher disability when compared to respondents with a 'poor' diet. For those with relapsing-remitting MS, the DHQ total significantly predicted a lower relapse rate and reduced odds of increasing disease activity, but the model fit was poor and the predicted change only marginal.
This study supports significant associations of healthy dietary habits with better physical and mental HRQOL and a lower level of disability. Further research is urgently required to explore these associations including randomized controlled trials of dietary modification for people with MS."
At the end of the day, i think your update is wonderful :D please don't be a stranger, we still have a few great peeps holding down the fort but we seem to have misplaced an awful lot of our MSers, so please consider sticking your head in once in awhile :D
I am glad you are doing so well.
Hey JJ, how the heck are you? And thank you dear Alex (HVAC) for your good wishes- you’ve had the most unbelievable battle and handling it all with good grace and humour.
I started on the Overcoming Multiple Sclerosis diet way back Sept 2011 despite you good people cautioning me against any miracle cures. Yes, there are a lot of charlatans our there to take the money of those people who are desperate to find health. But the author of the program was someone I found to be of substance and whom impressed me when I met him personally. He even wrote, published, and gave a way his book to people in Australia and New Zealand at his own cost!
The Medhelp community, of which you, Alex, Shelly, Lulu, Ess and so many more good people were part of back then, really helped me come to terms with MS. It is a horrible, frightening disease that when it has you in its powerful jaws brings you to your knees and makes want to give up. But lucky for me I had Jesus alongside me to pull me through as I followed the admittedly very restrictive program of diet, exercise, and meditation and it proved to be the natural tonic my mind, body and soul needed.
The OMS program taught me how to get my life back in balance. But to repair a lifetime of damage and change bad habits takes time.
In the movie Groundhog Day Bill Murray plays the most superficial person engaged in the most boring job. One drab morning he wakes up to the radio blaring Sonny and Cher’s "I’ve got you babe". He plods through the day, encountering a group of wearisome people along the way.
The next morning the radio wakes him again with the same song – Sonny and Cher all over again - and then he comes across the same boring people and the same boring events that he had the day before. After reliving the same day for about 3 weeks he realises he is in hell and tries to stop it all by taking his own life only to wake up the next morning to the same song and the same day.
He tries to find some kind of meaning amid the boring repetition of each day. First he turns to a life of crime and then realising that this isn’t working he launches into a routine of self-improvement. Through music, poetry and love he transforms himself into a likeable person and in the process, he comes to see the people around him in a different way. He turns his life around; he takes charge of his life and changes himself into someone worth loving and uses his time to make life worth living. Only then is freed from the cycle of the eternal rerun. The movie’s message is simple – if you want to change your life to one that is meaningful and full of purpose then it’s all up to you.
With MS you feel crappy and it is very hard to change if you think ‘what’s the point’. But I embarked on the program despite opposition from family, friends, doctors and MS patients. For me the evidence was simply too compelling.
JJ you’ve accurately identified the latest and most compelling study of MS patients that supports the work of Professor Jelinek and his three pronged approach of diet, exercise, and meditation. His previous study consisting of patients adopting his program was much smaller but with equally fabulous results. Obviously it is not a cure, it just allows you to live your life without MS having you in its grip.
When my neuro gave me the news that the second lesion in my brain had resolved I asked him if he would be prepared to write me a letter to say I didn’t have MS. I was really hoping he would as my insurance company recently declined my application to increase my cover. But, he said ‘no, you’re just lucky you’ve got a very mild case of MS’. I just laughed and reminded him about the first 12 months after diagnosis and the constant relapses. Yes, I had a meningioma but that's a completely separate disease and doctors don't rate it as disabling or life-threatening at all.
Anyway, I think I’ve rabbited on for far too long. I promise this is my final update on the OMS which I committed to do way back in 2011. Obviously its up to individuals to make up their own minds about the program and what effect, if any, that its had on my disease course. Nearly five years wow, it seems like 20 years ago given all that has happened.
Wishing you all love, hope, and joy.
ROFL i'm in the middle of trying to save our financial bacon and currently keeping my fingers crossed whilst i'm climbing ladders, ripping down plaster, using tools that get heavier the more I use them, lol trying to get the paint on the window trims and not every other surface despite using a truck load of masking tape and I'm constantly driving my husband mental when I come up with a different idea to yesterdays :D
More than my usual share of hilarious moments, learning how to save a $ and the benefits of accepting near enough really is good enough......where there's a will there's usually a way babe, so i'm wearing my big big girl panties and just scuking it up and doing what needs doing lol
I kid you not but i've had way too many conversations with various types of dr's over the years, explaining my son's unusual reactions to food and medications (dairy, chemicals, additives, colours, flavours and preservatives) goes against all the rules lol unless they see it happening in front of their own eyes, it just can't be right......give this kid a simple vanilla ice cream cone and you'll see someone obviously neurologically compromised lol a fall down, nonsensical, slurring, giggling, welting itchy mess who you'd swear is as drunk as a skunk......for so many reasons and with the huge additional belief in brain plasticity thrown into the entire wellness kit and caboodle, i get it, i truly do..
BUT lol isn't there always, i can't get past that underneath all that can definitely make things 'worse or bring things back' to the forefront, no matter what, there is still the underlying core issue and in MS that's an abnormal central nervous system.....and what you've experienced isn't impossible or even all that unusual if you look at the history of MS.
What are basically accepted facts for RRMS:
Lesions come and lesions go, there are studies of stable MSers (no clinical signs of relapsing during yr long study), who've had monthly MRI's and from one MRI to the next their brains are showing that despite not experiencing a relapse or progression or how good they've felt, their MS lesion activity is not actually ever stable, lesions (new or old) are still constantly active behind the scenes, new or old lesions can lighting up, become stable and or disappear.
No one has ever been able to accurately predict an individuals time period between (symptoms returning, experiencing something new etc) relapses, (month, year, decades) nothing is really outside the norm with RRMS, relapsing within a month of the last is generally considered to be the same relapse and not a second but the time between could literally be anything.
No one can accurately predict if any of the DMD's are going to reduce or slow down an individuals relapse rate, but there is a lot of corroborating research since the introduction of DMD's that they have changed MS history and the previous norms for MSers across the globe are more promisingly good.
No one can even accurately predict if or when an RRMSer is going to transfer to SPMS, it's expected that 50% will develop SPMS in 10 years and 90% within 20 years but the time period of transition can actually last years, and debate over how long MS was present prior to official dx of MS.
The first 12-24 months after official dx is generally thought to be the hardest on an MSer, more than physically there's undoubtedly a lot to go through emotionally. How long it takes for someone to accept and understand what their MS means for them, its as individual as MS is, with too many varying factors involved eg personality, physical activity levels, life style, family, financial, insurance etc etc etc.
That research is understandably promising from your perspective, it is to a degree but it's not compelling corroborating research for diet as a MS cure per say, if anything its only corroborating that a healthier diet and life style is better than a poor one, regardless of MS we basically already know that to be factual....
" 'healthy' consumption of fruit and vegetables and dietary fat predicted better quality of life" and its barely touching on it's impact on relapse rates...."less likelihood of higher disability when compared to respondents with a 'poor' diet."
What stands out in regards to relapse rate is the "less likelihood of higher disability" which is already something they can't predict and even "after controlling for age and gender, and the other dietary covariates" they still accepted "the model fit was poor and the predicted change only marginal" which isn't a resounding endorsement of a dietary cure by anyone's standards, the research just isn't proving the theology behind it, yet?!
I love bouncing around these thoughts again, i've definitely missed this :D so thanks for waking up my little pea brain, it's been awhile lol what with the hammering, ouch, hammering, ouch that i've been doing instead, i am so not built for this renovating game lol