On January 4th, 2013, Jim flew to Colorado to spend 10 days with his mom, sister and his sister's family. During those 10 days, Jim's body went through a series of serious detoxing. Ozone treatments, foot baths, chiropractic adjustments, bio meridian tests, and a few things that I probably shouldn't mention (yikes). He was also given a laundry list of nutritional supplements and herbs to start taking. It was a long 10 days, and we missed him a lot, but the HOPE in his voice when he called, made it all worth it. Knowing that he was actively doing something to battle ALS, rather than waiting for ALS to destroy him, made him feel good about his decision to leave us for 10 days, especially at a very vulnerable time.
One thing I want to make sure I'm clear about is, Naturopath doctors do not claim to have a cure for ALS, at least not the ones we have seen. The theory behind naturopathy is to rid your body of toxins, in the hope that your body will start fighting disease rather than the toxins in your body.
The most exciting news about Jim's trip to Colorado was Jim renewing his relationship with Jesus Christ. Watching Jim praying and reading his devotional books, warms my heart.
Jim came home from Colorado feeling better than he has ever felt in his life. His mind and body were ready to battle the only thing trying to old him back, ALS.
Next step.. Functional Neurology
Tuesday, February 26, 2013
Monday, February 18, 2013
The Paleo Diet
naturopathy /na·tur·op·a·thy: A system of therapeutics in which surgery and prescription medications are avoided, and preparations such as vitamins, nutritional supplements, herbs and a healthy diet are used to treat and prevent disease. Whose purpose is to treat the whole person to stimulate and support the person's own innate healing capacity.
Shortly after Jim's ALS diagnosis, Jim reached out to his sister who lives in Colorado. Karen was one of those moms who didn't believe in vaccinations for her children, all 3 of whom she gave birth to with a mid-wife (yes, one of those). Jim and I had always thought this was a little crazy, not crazy in a bad way, just something we would never have considered for our own children. I now know that the only reason we might have thought it crazy was because we were completely uneducated on anything outside of the world of Western Medicine.
Karen is a naturopath warrior, and she is also a woman of strong faith and we are so grateful for both. Needless to say she was thrilled Jim was reaching out to her, and from that day on she has been on a mission to help Jim heal through prayer and natural healing. We were off the road to despair and on the road to HOPE.
Her first instructions for Jim were sent to me by text. Jim was to stop putting toxins in his body immediately, (wait, no more In-N-Out??). We were to get a copy of the Paleo Solution book by Robb Wolf and the Paleo Diet Cookbook by Loren Cordain, Ph.D., and follow it to a T. High nutritional intake only, nothing "dead" or out of a box, nothing out of a can, no gmos (genetically modified foods), hunter gatherer meals only, no carbs, no dairy, no coffee, no salt and definitely no sugar.
"OK", was my only response. I honestly didn't even know where I would start with this type of meal planning. How would I even prepare him a meal of such standards? The poor guy was going to starve to death. Sure, I can whip up a mean salad, but could a man, used to pasta, potatoes, tacos and burgers live off salads every night? I think not. Fortunately, there was a whole world of healthy food choices out there we knew little about. The healthy "Paleo" meals we have created are some of the best tasting meals we had ever eaten. Jim is 100% committed to the Paleo Diet (me, well I did give up diet coke 3 weeks ago, it's a start), he has lost weight that he could afford to lose, and fills his body with the nutrients it needs. I am inspired by his unwaivering determination to beat this disease.
Shortly after Jim's ALS diagnosis, Jim reached out to his sister who lives in Colorado. Karen was one of those moms who didn't believe in vaccinations for her children, all 3 of whom she gave birth to with a mid-wife (yes, one of those). Jim and I had always thought this was a little crazy, not crazy in a bad way, just something we would never have considered for our own children. I now know that the only reason we might have thought it crazy was because we were completely uneducated on anything outside of the world of Western Medicine.
Karen is a naturopath warrior, and she is also a woman of strong faith and we are so grateful for both. Needless to say she was thrilled Jim was reaching out to her, and from that day on she has been on a mission to help Jim heal through prayer and natural healing. We were off the road to despair and on the road to HOPE.
Her first instructions for Jim were sent to me by text. Jim was to stop putting toxins in his body immediately, (wait, no more In-N-Out??). We were to get a copy of the Paleo Solution book by Robb Wolf and the Paleo Diet Cookbook by Loren Cordain, Ph.D., and follow it to a T. High nutritional intake only, nothing "dead" or out of a box, nothing out of a can, no gmos (genetically modified foods), hunter gatherer meals only, no carbs, no dairy, no coffee, no salt and definitely no sugar."OK", was my only response. I honestly didn't even know where I would start with this type of meal planning. How would I even prepare him a meal of such standards? The poor guy was going to starve to death. Sure, I can whip up a mean salad, but could a man, used to pasta, potatoes, tacos and burgers live off salads every night? I think not. Fortunately, there was a whole world of healthy food choices out there we knew little about. The healthy "Paleo" meals we have created are some of the best tasting meals we had ever eaten. Jim is 100% committed to the Paleo Diet (me, well I did give up diet coke 3 weeks ago, it's a start), he has lost weight that he could afford to lose, and fills his body with the nutrients it needs. I am inspired by his unwaivering determination to beat this disease.
Good bye Costco, hello Whole Foods!
(I know what you're thinking, Whole Foods is SO expensive, yes, it is more than a grocery store, but the money we are saving by rarely eating out, makes up for it!).
Next Step... Detox.
Friday, February 15, 2013
Think Outside the Box
The days after Jim's diagnosis with ALS went about as you would expect, and I'll spare you all the depressing details. Jim and I did our best to keep our house a happy home for our children and enjoy the holidays as we always had. We spent long evenings Christmas shopping and were grateful for the simple things in life and for eachother. We spent nights discussing finances and what Jim's wishes were for our children.
We were back at UCI for our follow-up appointment on December 18th, and Jim was expected to let the doctor know whether or not he was interested in the clinical trial or the drug Rilutek. After meeting with the specialists, the doctor asked Jim of his decision, to which he replied he wasn't interested in either one. Now I knew Jim had never been one to take medication, and I knew he wasn't willing to settle for a drug that increased his life expectancy an average of only 2-3 months, but what he was suggesting had me both worried and full of skepticism. How could he possibly go against the advice of a doctor who is one of the top experts in his field? How could he deny the only drug proven effective (although mildly) against the progression of ALS? Jim's plan was to battle his ALS through Naturopathy. Through WHAT?
So began our journey through holistic medicine.
We were back at UCI for our follow-up appointment on December 18th, and Jim was expected to let the doctor know whether or not he was interested in the clinical trial or the drug Rilutek. After meeting with the specialists, the doctor asked Jim of his decision, to which he replied he wasn't interested in either one. Now I knew Jim had never been one to take medication, and I knew he wasn't willing to settle for a drug that increased his life expectancy an average of only 2-3 months, but what he was suggesting had me both worried and full of skepticism. How could he possibly go against the advice of a doctor who is one of the top experts in his field? How could he deny the only drug proven effective (although mildly) against the progression of ALS? Jim's plan was to battle his ALS through Naturopathy. Through WHAT?
So began our journey through holistic medicine.
“Life is 10% what happens to you and 90% how you react to it.”
- Charles R. Swindoll
- Charles R. Swindoll
Thursday, February 14, 2013
The Diagnosis
December 10, 2012, our appointment at UCI had finally arrived. It was a long and anxious 3 months of waiting, during which time I continued researching Jim's symptoms looking for a possible diagnosis. By now, his symptoms were primarily muscle spasms, slurred speech and muscle atrophy. I'll never forget the day I came across ALS (Lou Gehrig's disease), during an Internet search. I had heard of Lou Gehrig's disease before, but knew nothing about it. I remember reading the description of the disease and thinking, oh Lord, please let it not be this. I then remember reading the list of symptoms for ALS and my stomach dropped. I frantically went to several different sites that talked about ALS, searching for anything that would suggest this is not what Jim had, praying I would find something that didn't match. I then kept searching for something else, anything else other than ALS, that matched his symptoms. I finally came across a condition that can be caused by a previous neck injury, and was treatable by physical therapy or surgery. Thank you Lord, this had to be it. I mean, Jim did play football for years, he had crashed on his bike a year ago onto his shoulder and neck, it was the "something else" I was looking for. I printed out the details and showed them to Jim, he was on board, this must be it. Our plan was to walk into UCI and let them know we had found the answer (thank goodness for Google Search!). I never mentioned what I had learned about ALS to Jim or anybody else, but deep in side, I was expecting the worse.
The first half of Jim's appointment lasted about an hour. The first 40 minutes he was examined by a resident, and the last 20 minutes by the doctor. He did a few muscle strength tests, looked at his muscle spasms, his previous MRI, and then spoke the words I was praying I would never hear, "I have a strong suspicion you have ALS". I'm not sure what made him turn to me, probably the sound of my gasp, but he then says to me, "I'm sure you've done your research on this disease?", to which I reply, "yes, I have". At that moment I knew that I knew more about Jim's devastating diagnosis than he did, and felt guilty for not having shared what I had learned about ALS with him. My break down probably said it all. We were then told to go grab some lunch and come back in about an hour for more tests. Not to confirm the diagnosis (there is no test that confirms ALS), but to rule out any other possibilities.
The last thing I felt like doing was eat, but we did sit down for lunch, and I tried my best to keep my composure (I failed). We talked about anything other than ALS. I knew it wouldn't be long before Jim did some research of his own. I just didn't have the strength to tell him the devastating details.
The additional tests ruled out any other possibilities other than ALS, and so that is what we were left with, along with a few instructions for Jim. 1. Eat a high fat diet - it's important not to lose weight (you'll need all that storage of fat for when you can no longer swallow food) 2. Start taking the only prescribed medication for ALS, Rilutek - it can slow the progression and extend your life expectancy an average of 2-3 months. 3. If interested, sign up for the clinical trial we're offering. 4. Come back next week to meet our staff of specialists (all of which you will eventually need as your body continues to deteriorate) - the Respiratory Therapist , Speech Therapist, Physical Therapists and the Residents. 5. Sign up for Social Security Benefits right away, it can take up to 5 months to receive payment. 6. It's very easy to fall into a depression when given this type of diagnosis, but stay positive, your family is counting on you.
And with that we left, heading home to break the news to our family and friends (but not before driving through In-n-Out burger for Jim's high fat meal!)
The first half of Jim's appointment lasted about an hour. The first 40 minutes he was examined by a resident, and the last 20 minutes by the doctor. He did a few muscle strength tests, looked at his muscle spasms, his previous MRI, and then spoke the words I was praying I would never hear, "I have a strong suspicion you have ALS". I'm not sure what made him turn to me, probably the sound of my gasp, but he then says to me, "I'm sure you've done your research on this disease?", to which I reply, "yes, I have". At that moment I knew that I knew more about Jim's devastating diagnosis than he did, and felt guilty for not having shared what I had learned about ALS with him. My break down probably said it all. We were then told to go grab some lunch and come back in about an hour for more tests. Not to confirm the diagnosis (there is no test that confirms ALS), but to rule out any other possibilities.
The last thing I felt like doing was eat, but we did sit down for lunch, and I tried my best to keep my composure (I failed). We talked about anything other than ALS. I knew it wouldn't be long before Jim did some research of his own. I just didn't have the strength to tell him the devastating details.
The additional tests ruled out any other possibilities other than ALS, and so that is what we were left with, along with a few instructions for Jim. 1. Eat a high fat diet - it's important not to lose weight (you'll need all that storage of fat for when you can no longer swallow food) 2. Start taking the only prescribed medication for ALS, Rilutek - it can slow the progression and extend your life expectancy an average of 2-3 months. 3. If interested, sign up for the clinical trial we're offering. 4. Come back next week to meet our staff of specialists (all of which you will eventually need as your body continues to deteriorate) - the Respiratory Therapist , Speech Therapist, Physical Therapists and the Residents. 5. Sign up for Social Security Benefits right away, it can take up to 5 months to receive payment. 6. It's very easy to fall into a depression when given this type of diagnosis, but stay positive, your family is counting on you.
And with that we left, heading home to break the news to our family and friends (but not before driving through In-n-Out burger for Jim's high fat meal!)
Wednesday, February 13, 2013
The Road to a Diagnosis
It all started about a year ago. Suddenly Jim was experiencing a constant urge or need to swallow. While most of us don't even think about swallowing, Jim did. He would continually drink water or eat just so he could satisfy his urge. He had recently changed his eating habits, maybe this was his body reacting to the new healthy diet. A few months later came the stiffness in his neck, shoulder and jaw, and eventually slurred speech and muscle spasms in his upper body, primarily in his arms and back. His upper body literally looked like his skin was crawling, constantly. It was at this point, we knew something wasn't right, but had no idea how wrong it really was.
Our first doctor visit was to the general practitioner on June 25, 2012. Jim had a blood test to test for everything under the sun, a MRI and endoscopy to test for throat cancer and told to take an ibuprofen daily for 30 days to decrease any swelling in his shoulder. The pain was attributed to years of playing football, maybe a torn rotator cuff or working construction. The slurred speech, and muscle spasms, well no one knew. Needless to say, the tests all came back negative, and Jim never took daily dosages of ibuprofen. He knew that ibuprofen wasn't the answer, but what was, we had no no idea.
It was at this point I hit the internet and hard. I researched and googled every symptom Jim was having on a daily basis, and I think I diagnosed him with about 15 different possible conditions (surprisingly, ALS not being one of them). Maybe it was a pinched nerve in his neck, MS, or other things I can't pronounce or remember. One common factor though, was a "neurological disorder". This led us to make an appt. with the neurologist.
September 4, 2012 was our first visit at Dr. Preston's office. More blood was drawn, an EMG test and a MRI were all done over the course of 3 visits. Of course, all came back negative. Dr. Preston was able to rule out MS, but was not able to confirm a diagnosis. He referred us to the Neuromuscular Center at UC Irvine Medical Center and said we need to get an appointment as soon as possible (that's never good). In my mind, Dr. Preston had a suspicion it was ALS, but didn't want to speculate or alarm us if it wasn't. It took us 3 months to get an appointment at UCI.
Our first doctor visit was to the general practitioner on June 25, 2012. Jim had a blood test to test for everything under the sun, a MRI and endoscopy to test for throat cancer and told to take an ibuprofen daily for 30 days to decrease any swelling in his shoulder. The pain was attributed to years of playing football, maybe a torn rotator cuff or working construction. The slurred speech, and muscle spasms, well no one knew. Needless to say, the tests all came back negative, and Jim never took daily dosages of ibuprofen. He knew that ibuprofen wasn't the answer, but what was, we had no no idea.
It was at this point I hit the internet and hard. I researched and googled every symptom Jim was having on a daily basis, and I think I diagnosed him with about 15 different possible conditions (surprisingly, ALS not being one of them). Maybe it was a pinched nerve in his neck, MS, or other things I can't pronounce or remember. One common factor though, was a "neurological disorder". This led us to make an appt. with the neurologist.
September 4, 2012 was our first visit at Dr. Preston's office. More blood was drawn, an EMG test and a MRI were all done over the course of 3 visits. Of course, all came back negative. Dr. Preston was able to rule out MS, but was not able to confirm a diagnosis. He referred us to the Neuromuscular Center at UC Irvine Medical Center and said we need to get an appointment as soon as possible (that's never good). In my mind, Dr. Preston had a suspicion it was ALS, but didn't want to speculate or alarm us if it wasn't. It took us 3 months to get an appointment at UCI.
Welcome!
Thank you for visiting our blog! It is our goal, that by creating this blog, we can share all we have learned through our journey of battling Jim's ALS and maybe touch a life or two. We have learned so much in the last few months that it would be selfish not to share. Jim and I are not doctors (not even close), and we are not advocating for or against any type of treatment. We are merely sharing what we have learned, and what is working best for us.
To our family and friends, we are forever grateful for all your love and support. We hope this blog does a better job at keeping you up to date on Jim's progress than we did, and relieves my mom from all her messenger duties. To those we have never met but you, or someone you know may be affected by ALS, please know that we feel your pain. If you take nothing else away from this blog other than a sense of hope, our goal was acheived.
I should also mention we honestly know very little about "blogging" and are not expert journalists. I apologize in advance for the grammatical errors, run-on sentences, over use of commas, etc. (thank heavens for spell check). Here goes nothing!
Wishing you all a wonderful day.
Jim and Dionne
To our family and friends, we are forever grateful for all your love and support. We hope this blog does a better job at keeping you up to date on Jim's progress than we did, and relieves my mom from all her messenger duties. To those we have never met but you, or someone you know may be affected by ALS, please know that we feel your pain. If you take nothing else away from this blog other than a sense of hope, our goal was acheived.
I should also mention we honestly know very little about "blogging" and are not expert journalists. I apologize in advance for the grammatical errors, run-on sentences, over use of commas, etc. (thank heavens for spell check). Here goes nothing!
Wishing you all a wonderful day.
Jim and Dionne
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