What you see pictured would’ve been unheard of last year at this time. That’s my Mom standing unassisted and walking while holding precious cargo, her grandchild (our son). Originally from Finland, my Mom’s name is Eija (pronounced A-ya) and I’m her son, Sean. One day, my Mom just started to shake. On May 21, 2009, she was diagnosed with an Orthostatic Tremor (OT), a serious condition related to Parkinson’s. See http://www.tremor.org.uk/orthostatic-tremor.html. As of February 15, 2012, Robb Wolf, Paleo, and a very special scientist, Mathieu Lalonde, Ph.D., placed her Orthostatic Tremor into remission. This is Eija’s story…
Spring 2009, my Mom started to have small bouts of shaking while blow-drying her hair or standing in the grocery store. Sometimes subtle, sometimes a bit more pronounced. By May 2009, the tremor increased in frequency and strength. My Mom enters her primary care physician’s office with the tremor in full swing. The physician immediately schedules a neurologist appointment. The chief of Neurology at a prominent Atlanta, Georgia hospital diagnosed my Mom with an Orthostatic Tremor. We subsequently start the OT learning process and my Mom starts the drug, Gabapentin. Even at 5 pills a day, she still had “bad days” – strong tremor episodes where only slight relief was brought by sitting down. Gabapentin provided modest, spotty relief, and like all prescriptions, came with side effects. At 64 year’s of age, my Mom’s other health problems included: heart valve leakage (murmur), dyslipidemia, a non-functioning thyroid (for over 10 years), osteoarthritis, and finally now, OT. Welcome to the jungle. Along with all of these conditions came a cocktail of pharmaceuticals.
OT is not a benign tremor. Orthostatic literally means while standing. Once it went to full progression, my Mom could no longer take a shower standing and had to use shower stool. She couldn’t dry her hair standing. She couldn’t cook by the stove (we got another stool) and visits to every store, bank, or post office involved seeking out area benches or emergency places to sit. Interesting fact about OT: the tremor is most pronounced while standing or walking. Sitting provided for some relief, although it didn’t completely take it away. One instance at Barnes and Noble, she literally had to grab each table display to retreat out of the store because the tremor that day was particularly relentless. As time wore on, I watched my Mom become defeated. I still remember one Thanksgiving, she cried at the dinner table. That Thanksgiving sucked.
Turning the page into 2011, I was making changes for myself (being overweight & doing research). I was familiar with Robb previously but, you see, I suffered from “analysis paralysis” – reading a ton of subject matter but I never did anything. Year 2011 changed that – I learned and, finally, executed on it (no longer have a 46” waist, post coming soon). With my own significant change underway, I drilled deeper and reached out to Mat Lalonde, Ph.D., from Harvard. We are really fortunate that, despite a busy schedule and involvement in other projects, Mat was available to help. That kicked off a series of phone calls and blood tests over the next few months. One thing that may not initially come across in his lecture style is his compassion for people. While being the quintessential researcher, Mat was patient, allowed me to interject, and re-explained concepts at length.
In our first conversation, I enthusiastically hoped OT was autoimmune. In typical Mat Lalonde fashion, he plainly and succinctly replied, “No.” My heart sank. From reading about Robb and Paleo’s success in the autoimmune community, I was hoping OT would neatly fit into this box. I think Mat sensed my disappointment because after a bit, he added, “don’t worry, we’ll resolve your Mom’s tremor issue.” Knowing the deep trenches my Mom was in with OT, I felt that’d be shocking. My Mom was completely skeptical. Mat was resolute.
Mat asked for a series of blood tests to validate various conditions. My Mom returned from her next doc appointment only to report the family care physician didn’t recognize some of the lab tests. My wife and I had a good laugh when the primary care doc was stumped. You did go to medical school, right? You have access to, The Google, No? Seriously. Take a second and look them up – Hippocratic Oath’er.
Because some of the specific labs were unfamiliar to primary care doc, she ran a catchall test called a “Fluorescent Antinuclear Antibody” (FANA) staining pattern. My Mom lit it up like a Christmas tree. Concerns then sounded from primary care doc – Eija may have Rheumatoid Arthritis (RA), or worse, Lupus – because the FANA lab just about had fireworks popping off the results. Based on the information I provided, Mat didn’t think Lupus was a player but he cautioned we should rely on test results.
Roundabout labs didn’t zero in on what we needed – testing for specific antibodies. Bottom line: it took tracking down a specialist to unearth specifics. Interesting, Mat – not one of her previous docs, who had been treating her for years – showed my Mom’s thyroid condition was in fact, autoimmune, Hashimoto’s Thyroiditis. Once at a specialist, we finally ran a number of labs, including the ones Mat recommended. One of the “unfamiliar” labs was Antithyroglobulin Ab. Normal range for antithyroglobulin is 0-40 IU/mL, my Mom’s result: 928 IU/mL. Screens for RA, Lupus, and other conditions were negative. The thyroid antibodies were so pronounced they impacted the FANA stain panel which sparked initial concerns about Lupus. Once again, Mat was spot on. Well… he is the Kraken.
Mat suggested the standard dietary intervention: grain (wheat), legume, and dairy free. Plus, because of the thyroid results, he added the additional caveat of the autoimmune protocol. I spelled out the protocol for my Mom… she was not amused. Nonetheless, my Mom labored through the autoimmune protocol, calling me at times to ask if she really needed to be this strict. She had brief excursions in those first weeks where she dove back into a sandwich or some other vice. Mat simply commented we really need compliance. I reined her in. I showed her results of other folks embarked on Paleo and their subsequent disease remission (this is the advantage of anecdotal testimonials, they provide grit for sticking with a program that shows promise). One person stuck in my Mom’s mind – Whitney from http://www.nutrisclerosis.com. It was the MS reversal and blog comments that somehow connected with my Mom. Maybe it was the disease & CNS relationship, but Whitney certainly played a role in convincing my very much doubting Mom. Despite a handful of digressions, my Mom became fully committed. With Mat’s input and autoimmune considerations, we later successfully reintroduced eggs, cooked tomato, and some fermented diary.
Two months into the protocol, my Dad called me to ask what I’ve done to Mom. Before the dietary changes, you couldn’t have a conversation with my Mom past 3 PM. Well, you could, but she just wouldn’t remember the substance of what you discussed (I had resigned myself that this is the reality of growing older). Two months into Paleo, my Mom became strikingly cognizant. It was so definite and readily evident that my Dad, largely a bystander in this intervention, called me to ask, what exactly I was doing to his wife. I too was taken aback. My Mom, even with a 9 PM conversation, would recall facts and things we discussed over the phone. Foreshadowing things to come, diet suddenly became exciting.
Gabapentin – wiki it. It’s a fun little epilepsy drug sometimes prescribed for OT. By the 3rd and 4th month into the program (September 2011), my Mom reported she’s not having as many “bad days.” At the same time, my Mom stopped taking Vytorin, a cholesterol drug. Another Lalonde victory, because her LDL particle size returned predominantly pattern A. Combined with my observations and more blood work, Mat made adjustments to a minimalist supplementation program. Ultimately, Mat even decreased her Vitamin D dose because of lab results (which he commented was a normal occurrence).
By October 2011, my Mom reported a continued decrease in tremor activity. So, we reduced from 5 to 3 Gabapentin pills per day. November 2011, we reduced to 1-2 pills per day. I email Mat in excitement. He is pleased and emphasizes more improvements are likely to come. But Gabapentin reduction didn’t turn out to be a free lunch. It came with a series of headaches and muscle stiffness, particularly in the legs. I ask Mat about this and he nods, this is simply a bit of dependency (withdrawal symptoms). By Thanksgiving 2011, we are skipping an entire DAY of meds – I’m so excited, I start telling everyone.
January 2012, my Mom is starts skipping 2, and then, 3 days in a row of meds. Although, along the way, some days are peppered with headaches. Feeling the improvement in her tremor, my Mom powered through the cessation of meds.
February 2012, my Mom made the decision to remove herself entirely from tremor meds. That day was: February 15, 2012. We’ve been tremor & med free ever since. It’s over. We are now in the process of seeing what scientific reviews can be done to publish this result more formally. As I ask my Mom to reflect on where she’s been, she points out an interesting human impulse, “You know, it’s much easier to grab a handful of meds and then go enjoy a pizza.” You should think about that – are you serious about disease remission? Are you committed? You can do this but it will take some effort on your part. There are no side effects from a dietary intervention.
With Robb’s site stretching out to over 192 different countries, Eija has this message: “If you have OT or another tremor, be patient. This isn’t an overnight cure. Stay committed, the results might surprise you.”
My Mom can now carry her grandchild without fear of a tremor episode. It’s a huge turnaround for us. Thank you, Robb. Thank you for all your time, Mat.