My name is Vicki and I live in Lincoln, NE. I am 45 years old and was diagnosed with Primary Progressive Multiple Sclerosis about 1 1/2 years ago. The progression has been very rapid and unrelenting.
I know you understand the frustration it causes. I resigned my position as the General Manager of a large corporately owned funeral home & cemetery in May of 2010 to work on a business plan and pursue financing to open my own funeral home. I was diagnosed with MS in October of 2010. I was told that with the type of MS and the position of the lesions, that there were no medications that would work for PPMS. That was kind of a blessing since I prefer not to take prescription medications anyways. As of this last winter, I had lost all feeling in my legs, arms and face to the point where I could injure myself badly enough to bleed but I couldn't feel any pain. Which I found odd given that all over body pain was one of my first symptoms and now I couldn't feel things touching my own skin. I was considering learning how to self catheterize due to not being able to release my bladder, breathing had become very labored and there were times I couldn't even cough due to the weakness of the muscles around my lungs. (I am not a smoker) I started choking if I didn't fully concentrate when eating or drinking and I had several days that I truly felt like I didn't want to continue living because I felt so awful all of the time. I am in a power wheelchair and at the time had to wear the seat belt and harnesses fully tightened so I could stay upright due to loss of core muscle strength. The one huge blessing at that time was that none of my lesions are on the brain so vision and cognitive thinking have not been issues.
My husband calls me stubborn. Even with all of the physical issues going on, I still wanted to pursue opening my own business. I have a very supportive business partner who made the choice to continue going forward even though he watched me lose more and more abilities, and although my husband calls me stubborn, he is also a fantastic cheer leader! I did open my business, Lincoln Family Funeral Care, March 1st of this year. I am very happy that I continued to pursue this dream and even happier I "googled" MS & Diet one evening and came across your website! I wanted to share with you what the diet has done for me so far.
In February of this year, I had one of my 6 month appointments with my neurologist. No matter what I brought up that I have read, she immediately shot it down and proceeded to tell me that my outlook for the future was very grim. She told me that I would probably be in some type of assisted living in 5-6 years and that I wouldn't survive more than 10 years. Death would more than likely come from asphyxiation due to choking to death on food or liquid. It was hard to hear but since I seemed to never feel good, it didn't seem out of the question.
When my husband and I left that appointment, I made a decision. I have always been a bit of a control freak and this disease felt like it had taken all of my control away and it was just going to have it's way with me. I decided I wasn't going down without a fight. We went home and started our own research. We had tried homeopathy, chiropractic, acupuncture, Reiki, massage and many other modalities in the past year and a half. None of them seemed to have any long lasting positive effect. Everyone I seemed to come in contact with just told me it was hopeless unless the medical community came up with a cure. This included Dr.'s, friends with MS, MS support group leaders, the National MS Society......I thank God for creating me to be full of hope rather than hopeless. I thank God for putting information in front of my face and giving me enough common sense to use it! There is some irony in my progression though....
Before I was diagnosed, we just weren't sure what was going on. I had even been to a Dr. that told me to stop wanting MS because it was a horrible disease that nobody wanted and I should come back to him when I had real symptoms he could diagnose. I understand his response a little now based on the fact that the MRI of the brain showed no lesions and I've never really had attacks - just a steady loss of ability. I didn't fit his mold of what MS looked like. I also find that kind of amusing because one of the first things you read about MS is that it's different for everyone and there is no mold. :-) At this time, we thought that maybe I had a severe gluten allergy, was over stressed and needed a break along with thinking I was entering menopause. Basically thought my body was just in some type of rebellion! I started eating a gluten free Raw Food diet. I actually started feeling better and had more energy. I know now, that I was feeling better because I had essentially eliminated Gluten/Wheat, eggs, yeast and dairy. I was still eating legumes though.
When the weather started getting colder and I was finally given a diagnosis of PPMS, I gave up on the Raw Food Diet. I took the attitude that if I was going to have some disease, I would at least enjoy myself with all the foods I loved! Big mistake!!! Over that first winter I started to progress. Over the next summer and winter things got even worse. My husband was afraid for me, my 27 year old daughter gave up her apartment to move in with us and help with the house, grocery shopping, yard work, etc....all the things I could no longer do myself. She even learned how to help me dress and undress, how to help me in and out of the shower. I basically couldn't seem to accomplish much without someone to help.
With what I have learned from researching and reading your book, I created my own progression without even knowing it! After being told I would be dead within 10 years, I will admit that I was truly at the bottom and the information you have provided has been nothing short of a miracle! I have been following the diet for about 3 months now. I am very strict and have even eliminated all sugar, alcohol, chocolate and caffeine from my diet. From the summer of raw food eating, the changes weren't as hard for me as for some. I have integrated quite a few recipes from my raw food cookbooks along with the ones in your book and from the best bet diet websites. By doing this, I keep variety in my meals so that I'm not bored and neither is my family.
Where am I at now? I am still in my power wheelchair but....I have feeling in all of my extremities, my digestive system is back on track (I do take Juice Plus vitamins along with vitamin D, vitamin B complex and a probiotic), I have energy, the pain in my joints and muscles has receded to a very comfortable level, I can move my toes and breathing has become much easier! I have purchased a recumbent indoor bicycle and can ride it for up to 15 minutes at a time. We created our own yoga and meditation room in our home and we have also added in Qi Gong as one of our exercises. We are also blessed to have our own in ground pool for me to work out in. I am working at my business full time but I go home each day for a short nap and I make sure to get plenty of sleep at night. I have been elected to serve on the Nebraska Development Council and have won the Nebraska Entrepreneur of the year award. Life is truly great and I am feeling better every day! All I can say is:
THANK YOU, THANK YOU, THANK YOU, THANK YOU!!!!!!!
I will continue sharing your information with anyone who will listen. The problem is as you stated in one of the first chapters; there seems to be 2 groups of people with MS. Those that learn to manage the disease through diet and those that just want to wait for a pill to fix it. Even with all of the positive changes I have been experiencing, I have had others with MS say things like - "MS always cycles. It's probably not the diet, it's just how the disease works" or "I like food too much"....I keep giving them the information and even put together a small cookbook with easy fun foods for all meals including desserts so they could see for themselves that the food is still good! No takers yet! I am just biding my time until I can walk in unaided to a support meeting. If that doesn't catch some of their attention, I just don't know what will.
Please keep up the "good fight" to get this information to as many people as will listen! I am truly grateful for the time and energy you have both put into this! Everyone on earth has a purpose and I thank you one last time for fulfilling one of your own purposes on this earth!