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.
Fascinating! From Wiki (bold emphasis mine):-
“Orthostatic tremor is characterized by fast (>12 Hz) rhythmic muscle contractions that occur in the legs and trunk immediately after standing. Cramps are felt in the thighs and legs and the patient may shake uncontrollably when asked to stand in one spot. No other clinical signs or symptoms are present and the shaking ceases when the patient sits or is lifted off the ground. The high frequency of the tremor often makes the tremor look like rippling of leg muscles while standing. Orthostatic tremor may also occur in patients who have essential tremor, and there might be an overlap between these categories of tremor.”
Whenever I see the words in bold, I think of Magnesium. Magnesium wasn’t mentioned in the above article. Was the lady’s OT purely a Substantia Nigra issue?
RE Those humongous antibody levels: That lady’s gut was leaking like a sieve!
Very impressive, thank you for sharing.
Oh, wow! Such an awesome recovery story– thank you so much for laying it all out in such detail. Wishing Eija well, lots of grandparenting joy in the years to come!
Thanks, Ed & Ariana. It’s still a bit shocking watching her head up a flight of stairs without assistance.
I love this story! Congratulations to Eija on such great work. I can’t wait to shun nuts, nightshades, seeds, eggs and all the other AIP foods this week. I cherish reminders of how real this is.
Wow! Phenomenal story! I am so happy for both of you!
Wow!!!! Keep these coming. I love the testimonials. But it just makes the stupid media stories where they only focus on fat loss on paleo more annoying! Hey lame stream media, how about you write or record a story on this kinda major disease fighting with paleo and quit focussing on the silly aspects of “eating like a caveman”?
Hi amy/shaun k?, would you mind listing the tests that mat suggested – i realise they were for your mother and her situation but I have been diagnosed with essential tremor and have reached a brick wall with my current GP (i.e. we don’t know what causes it, we’ve run out of tests, just take some beta blockers). So any extra avenues to investigate would be really helpful. Do you have a link to the additional foods that should be avoided for a paleo diet to combat autoimmune illness?
thanks in advance and well done to your mother, a great story
The paleo autoimmune protocol calls for the elimination of eggs, nightshade vegetables (potatoes, tomatoes, eggplant, peppers, etc) and nuts in addition to grains, dairy, soy, legumes, etc. I hope that helps!
Thanks Amy, very good info. Robert, let me first say I understand how frustrating navigating any tremor condition can be – I applaud your research efforts. For a quick and dirty review of the sheer number of autoimmune diseases: http://en.wikipedia.org/wiki/Autoimmune_disease
Because OT is not autoimmune, we didn’t run labs to focus on the tremor condition. As you’ve read, my Mom had a number of health issues running concurrently – working in conjunction with the medical specialist, we used antibody tests to identify (or rule out) various autoimmune conditions. The Hashimoto’s Thyroid (not OT) required implementation of the autoimmune protocol. There are many good MD’s – our experience showed we needed to use an Endocrinologist (beyond the GP). A Functional Medicine Doctor maybe helpful – also consider the Paleo Physicians Network in your health-hunt.
There are some interesting connections with brain health, the CNS, and cholesterol. If I may suggest, do some reading on Dr. Campbell-McBride. Basic LDL numbers are only part of the story. Far more important, LDL particle size. If you’re taking statins, the great news is Paleo (like my Mom) can shed you of this drug type. Here’s a blood-test everyone can run: check your LDL size, pattern A or B (sometimes referred to as a VAP test).
I cannot emphasize enough, Robb’s book is an important read. Mat Lalonde has an eye-opening cholesterol discussion occurring roughly at 3:00, http://www.youtube.com/watch?v=_fHtSy85F7Q
Many regards – thank you to all the best wishes for our family.
thanks sean
You bet. If you later suspect an autoimmune issue down the road, flag down Kubal, you’ll get the appropriate labs to consider.
Great story. Well done.
Really inspiring story. Thanks for sharing.
That was an awesome story. I love it when I hear of Paleo helping people with health problems. These problems in the past usually would not have been solved by changing eating habits and eating real food.
I love to hear stories like this – Good for your mom, Sean 🙂
Wow, I continue to be impressed and inspired by the success stories people are sharing. Almost daily I like to read stories or information about the paleo diet to keep myself on track with eating right. In fact, I just bought The Paleo Solution and I can’t put it down. I have only read less than 1/4 of the book and I have already learned so much including how food impacts digestion!
Thank you very much for sharing your story.
Lulu
We really appreciate all the high-fives, thank you. This is a great community to share her story.
Congratulations on this great recovery story! I have essential tremors and I have seen a reduction in my symptoms while following paleo also. It’s great to see such a positive outcome.
Tom, could you tell me if you followed the autoimmune protocol where you eliminate eggs, nuts, potatoes, etc? With the dietary changes, have you seen a significant change in the tremors? Thank you. Any advice is helpful
i to have orthostatic tremors and by accident found you on the website, I never have heard of this and also I know I would have to completely change my way of eating….
Hi Dottie, have read your mail with great interest, have had OT for many yrs, diagnosed 08, med. does nothing, if anything it’s worse in my opinion. Any advice on how a person could start slowly with diet would be greatly appreciated, not a huge dairy person, like pasta’s but grains like bread not so much, but what does a person substitute??? Any advice would help, so new at this, but I dream of being OT free.
Thanks so muc
Shirley
This is amazing as I belong to a group of people who have this for years the OT and no one has found any relief with it.
You nailed it. Thanks for posting that. I will definitely come to this site to find out more and recommend my acquaintenances about this
I read this with great interest, have had OT for many years, am 67 yrs. it is getting worst as time goes on, take 1 clonazepam per day does no good whatsoever. I belong to a OT group as well, have no other health issues, can walk very fast only, but the standing not possible, but the instant I sit symptoms disappear.
I will study this info in depth & as I’ve told people will cure myself.
Thanks for the info so encouraging there is hope!!!
S.
Hello Shirley. Just saw your comments on OT and Paleo diet. I have been with OT for 25 yrs and clonazepam does not help any more.
Did you try Paleo and what is the result ?
merci !
Hello All
I have just found this site’ but have Tremor Dominant Parkinson’s, which may be similar to the OT as described for Eija. There appears no other Parkinson ‘success stories’. Does this mean that Parkinson’s can not be treated using the Paleo diet other than the odd case? I am at the stage Eija was at before she started to get better and am ready to try any regime that offers hope.
Has anybody else had some success using the Paleo diet? Is the Paleo diet different to that advocated by Dr. Terry Wahls with which she controls her MS symptoms?
Kind regards
Adrian
I do not have Parkinson’s but Orthostatic Tremors. The paleo diet made a huge difference in me. I am still experiencing the tremors but I can stand longer on my legs. I don’t have to grab the chair so quickly now.
And yes, the paleo diet is not very different than what Dr Terry Wahls is teaching. I read her book and followed her suggestion. It is a paleo diet in my opinion. I would definitively go with a paleo diet. I think it is our only hope. I personally seen too much progress and will not give up. Don’t give up either! And be patient! It takes a long time. J.
Jocelyn , I suffer from OT too. What kind of diet dif you follow ? the autoimmune one ?
Thanks for your answer and the best of health
to you
wow amaziing could you be more specific what exactly paelo diet means’ what should i eat
thanks from israel
Did your mom start out with following the autoimmune caveat-no eggs, nuts, etc? This elimination process is more extreme but I’ll do it if it helps my essential tremors.
I am from Nevada, USA.. I started on NewLife Clinic Parkinsons Disease Herbal formula treatment in September 2016, i read alot of positive reviews on their success rate treating Parkinsons disease through their PD Herbal formula and i immediately started on the treatment. Just 11 weeks into the Herbal formula treatment I had great improvements with speech and coordination, my hand tremors seized and the stiffed, rigid muscle had succumbed. I am unbelievably back on my feet again, this is a breakthrough for all Parkinsons sufferers, visit NewLife Herbal Clinic official website ww w. newlifeherbalclinic. com or email info @ newlifeherbalclinic. com.
Joel Kurtis
Nevada, USA
Joel! thanks for this, if you ever get to Reno let’s grab some coffee.