Dyslexic

JilMac is Dyslexic & ADHD - here is her story.

updated on 6/29/2015

Although I am a math major - how my Dyslexia works and how I balance my life doesn't translate to a % increase or decrease, please read on:

I will be 60 in a few months - and am very excited by each and every birthday.

I was an "average" kid - the oldest of 5 children. I was a reader and wore glasses like my mother.

My other brothers & sisters did not wear glasses until later in life.

However, I was only a "B" student, in Average classes - and mostly because if you didn't get a "B" you couldn't be in sports.

I didn't want to go to college after High School - which disappointed by parents.

I did start Community College part-time in my 20's, and after the birth of my son - went to college full time.

It was my college professors that thought I was dyslexic they knew how hard I worked and saw my test scores.

They knew I got tutoring each week - so they decided to teach me with http://en.wikipedia.org/wiki/Cuisenaire_rods & Geometric Solids. My professor would have me hold the shapes as they explained the math behind them. We would do the math/calculus as I added a cone to a spear to find volume, etc. I went on to be a math tutor myself, and ran the Academic Computing Center, and became President of the Math Club. However, is was a LOT of work - learning was hard. I had to be on the TOP of my game. I never knew would this be a Brilliant day where I knew the answers ... or would it be a day that I was as dumb as a box of rocks. I never knew.

It didn't appear to be if I was well or sick with a cold, sleep had something to do with it sometimes, what I ate may make a difference, the variables were so wide and never seemed to have any consistency. I didn't have any control over when I could count on being smart and when I would act stupid. Luckily I was persistent, so I tried my best every day, never gave up and crawled ahead. I was exhausted.

After I earned my Masters in Internet Engineering - I was consulting for the local School District on their PowerSchool Database systems and working with a Principal in her office - she was on the phone and I was looking at the books in her office - I noticed a title ...

Smart but Feeling Dumb by Harold Levinson Smart but Feeling Dumb by Harold Levinson --- I picked it up and started leafing through it - after her long phone call - I asked her about the book. She had started her Education Career as a Special Ed Teacher - and had strong feelings about different learning styles. I asked if I could borrow the book. I ordered my own copy - of which I had Dr. Levinson sign. I cried through most of the book - no one had ever understood what it felt like to be inside my head.

The most astonishing thing was Dr. L explained why I could be sick with a head cold and be brilliant. I was taking sinus medication (Benadryl http://www.webmd.com/drugs/drug-5680-benadryl+oral.aspx The most astonishing thing was Dr. L explained why I could be sick with a head cold and be brilliant. I was taking sinus medication (Benadryl http://www.webmd.com/drugs/drug-5680-benadryl+oral.aspx) so I could be sick, not sleep well, have eaten barely anything and done great work!!

Benadryl/ antihistamine has the side effect for most people of making them drowsy. But for me - I am wide awake - and everything clicks! This was something that was consistent. I had a lot of head colds - although I may not have felt great - I was usually smarter - and could work longer and things would work!

Now I take 2 Benadryl morning & night unless I want to sleep and then I don't take them - they work the opposite for me.

After I read the book - I decided if Benedryl/antihistamines could do that much for me - what else could make things easier? For my 50th birthday present to myself I made an appointment to see Dr. Levinson.

I work with computers - which are changing faster and faster. It takes a lot of energy to keep up with the changes. I am a consultant & teacher - so people pay me to stay ahead of the curve. As I age - I really want to use my energy for fun things, rather than using every waking minute working to learn, working to remember what I already have learned. I wanted the second half of my life to be less work and more fun! (Which it has been).

I see Dr. L once a year and do Phone Consults 3 times a year. But I have told Dr. L with the technology today - most consults can be done remotely. I only live 4 hours away - so once a year is a nice to see him and his medical staff. I really appreciate the quarterly phone consults - to talk out loud what has been working, and what I want to work on next.

I don't take every medication every day - I have learned (well I am still learning because ... your body changes) what works for me when I need to do different tasks. I don't know how many people have that type of system. If I have to multi-task - and need my ADHA then I don't take my Adderall. Adderall helps me concentrate - which I don't need when I need to multi-task when taking care of my elders (Mother-in-Law, Aunt, Mother - all who have passed on now). When I am at my Dad's (who is 85) I don't take the Adderall - because I need to keep an ear open to evaluate how he is aging, I want to be distractible so I can look busy (doing bills, cleaning the house, etc but still paying attention to what may be different than my last visit). I am more in detective mode - since I am not my Dad's primary caretaker, my brother is - so he needs that outside set of eyes, so we can plan for the next step in the aging process.

One of the other meds that helps me and I have seen the biggest gain is motion sickness pills. I would have NEVER thought they would be what I noticed the most - but they are. When I am trying to learn, I cock by head to the side - many dyslexics do - to try and balance things - you do it hundreds of times while you are reading, studying, evaluating, etc. To the point where you give yourself motion sickness. Then your stomach is upset and you have to stop. This really prevented me from getting the necessary time into learning a new subject. Once I started taking Dramamine - i could work for hours and FINISH!! not have to stop every 1/2 hour because I thought I would be sick!! http://www.webmd.com/drugs/drug-10007-Dramamine+oral.aspx?drugid=10007&drugname=Dramamine+oral&source=2

Once again - I do not get drowsy when taking this - I am wide awake and things are clicking!!

There are other brain supplements that Dr. L prescribes - and I like to use Cod Liver Oil (with Lemon) - all to give your brain everything it needs. They all help and each person is different - needing things that Dr. L has a lifetime of knowledge of.

So back to your percent. What I know now is that I "have more control". Not everything works every day - but the number of "Bad Days" is less, a LOT less. I love learning new things and staying ahead of the curve - and I don't feel exhausted, learning/remembering does not control my entire day.

Here is my Bio page https://sites.google.com/site/jilmactraining/jil_macmenamin

Here is one of my favorite videos Dr. Levinson made - I really like his explanation https://www.youtube.com/watch?v=IekReyR9vFw

If you have any other questions or would like to speak on the phone - I am available.

JilMac

Jil MacMenamin, Web Database Consultant

Mac-Rand Systems & Designs

Brattleboro, VT 05301

802-254-8628

JilMac@Mac-Rand.com or JilMac.MacRand@gMail.com

http://JilMac.com & http://Mac-Rand.com

Reviewing almost 15 years under Dr. Levinson's care:

It has been 15 years since I first learned about Dr. Levinson's work with Dyslexia, and after research, I became one of his patients. I grow more confident each year because together Dr. L & I fine tune how I approach my dyslexia. Each quarter Dr. L and I discuss what is working well, what is giving me frustrations, and what has changed in my life. Because we all change physically & mentally. Our life changes, our situations change - and just like with other things in our lives we adjust. It is the ability to adjust that gives me confidence. Dr. L recommends changes to my medications and suggests changes to life processes. Which I chart and we discuss at our next discussion.

Before I was Dr. L patient, I could be brilliant one day and dumb as a box of rocks the next, and I never had the ability to choose when I was brilliant and when I was dumb. It would not matter my diet, sleep, stress, health ... there was nothing consistent in how my brain worked. So ... I worked hard at everything and became exhausted. As I approached 50 years old I knew this could not continue for the next 50 years.

I have learned how to learn more effectively, not only in my work with computers but also hobbies of tiling, rock wall building, furniture & home restoration, and jewelry making. I have control over when I can: problem solve, eliminate motion sickness, read/study/concentrate for long periods without feeling nauseous. And I can choose when to be a free spirit or a lazy Magazine & TV binge-watcher(not often – but sometimes necessary).

A big breakthrough came about 5 years ago when I was building a new accessible bathroom for my parents in their 200-year-old farmhouse. The project was dragging on - the problems kept mounting - and then I decided I would take my meds for projects and not just computer work. What a breath of fresh air! I could solve construction problems and not just technical computer issues!! When you make progress, it fuels your motivation, so you keep at the task.

I listen to my friends agonize over losing their memory, watch them becoming sedentary, for fear of hurting themselves, or not able to learn new things. Since I never had a good memory, I keep excellent databases, get excited about learning new skills and embrace challenges. When I take my meds, my balance is better, my thinking is clearer - so I have better balance, take better care, and don't make mistakes that I have in the past. I have more energy to work on new things, rather than fixing what I didn't do right in the beginning.

This all gives me great satisfaction, which fuels my love of learning and creating.

I don't see that in my friends & family as much.

In Dr. L's books, he is constantly fine-tuning. He believes, as I do, that it is never just 1 thing. I am not just Dyslexic, I am also ADHD. We have not been able to fix everything. I still have time management issues, I have no internal clock, but ... since I am more productive and less prone to finding excuses not to stay on task, I manage my time better – because I finish task/projects.

I can’t thank Dr. L enough. The continual work – is very important. There have been times (usually when I was doing intense care giving) that I forgot my meds for weeks. When I couldn’t problem solve – or because clumsy and broke something precious. I would snap back to remembering to Take Care of the Care Taker. I think that is why I am able to be on my 5^th Elder in our family. Because I have the ability and resources to “not burn out” because I can think clearly. And when you are a care taker – thinking and doing things clearly is your best asset.

Thank you, Dr. Levinson, for your books, your Dyslexia Online website, and your never ending quarterly support. Together we can solve almost anything.

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Brain Chemistry:

Solve for X: Mary Lou Jepsen on imaging the mind's eye

I admire & trust Dr. Levinson - he has given me new tools.

He is not the only Doctor that believes in balancing the brain chemistry - as you would for heart, blood sugar, thyroid, etc.

I enjoy TED talks - there is an amazing woman, who had brain issues, and she found a Doctor (in NY) to help her balance her brain chemistry. We are just beginning to understand some of this.

I have been having my students watch a Mary Lou Jepsen who works for Google about images.

https://www.youtube.com/watch?v=SjbSEjOJL3U (11 minutes)

Tonight I was searching for her video - and came across a new "TED talks"

http://www.ted.com/talks/mary_lou_jepsen_could_future_devices_read_images_from_our_brains

in this talk - in the first 5 minutes - Mary Lou shared that she had brain surgery 18 years ago and has had to medicate herself - by varying the meds she can change how she views things.

This made me think of the work Dr. Levinson has done. I spoke with Dr. Levinson in our Quarterly phone consults about Aderall and why does it stop the procrastination or why does it allow me not to become distracted?

Here is her Wikipedia page http://en.wikipedia.org/wiki/Mary_Lou_Jepsen

In 1995, she suffered from a pituitary gland tumor and had it removed and thus suffers from panhypopituitarism, requiring a twice-daily regimen of hormone replacement.;^[43] her personal description of this and the ongoing challenges she faces was published in the New York Times.^[44]

Here is that NY Times article

http://www.nytimes.com/2013/11/24/opinion/sunday/bringing-back-my-real-self-with-hormones.html?_r=1&

Small excerpt ...

" I had to make a plan to replace the chemicals that the missing parts of my brain used to make. There wasn’t a clear and detailed road map for this. Blood levels of these chemicals vary for people of the same age and sex, and even more between men and women, young and old. More of us may be affected by variant hormone levels than we realize. One systematic review estimated the prevalence of pituitary tumors at nearly 17 percent of the general population."

" I started trying different dosages and was amazed by how my thinking, my sense of who I was and my behavior toward others changed with tiny shifts in dosages. I didn’t know who I was anymore, nor who I wanted to be, but I was healthier."

" I felt clever again, and my career began to take off. "

Now I will cut and paste the entire article - because I want us BOTH to have a copy of this.

Bringing Back My Real Self With Hormones

By MARY LOU JEPSEN

Published: November 23, 2013

IN my early 30s, for a few months, I altered my body chemistry and hormones so that I was closer to a man in his early 20s. I was blown away by how dramatically my thoughts changed. I was angry almost all the time, thought about sex constantly and assumed I was the smartest person in the entire world. Over the years I had met guys rather like this.

This long journey may have started as early as 1978 when I was 13. I spent a summer in intensive care with an unknown disease. After that summer, I never thought I would live a long life. So I wanted to live, to do interesting, fascinating work in the limited time I thought I had left. I took on the math-intensive art form of holography, and in my early 20s traveled the world, living on university fellowships to pursue this esoteric craft. I didn’t date much, really — perhaps because I didn’t have many hormones, though I didn’t know that at the time. I worked as an artist, played in a band, met Andy Warhol, Christo, Lou Reed and David Byrne. I had fun. But the gravity of my illness grew in the 1990s.

The growth that shut down my pituitary gland’s ability to produce hormones did so insidiously over many years. By my early 20s it was, I suspect in retrospect, causing misdiagnosis of symptoms that were most likely caused by lack of hormones like cortisol. No diagnosis was found, despite the efforts of many doctors. I was a doctoral student in electrical engineering at an Ivy League school, but was growing progressively worse. I routinely slept about 20 hours a day, lived with a constant blistering headache and frequent vomiting, and was periodically wheelchair-bound. Large sections of my skin cycled through a rainbow of colors and sores, half of my face wouldn’t move as if Novocain had been applied. I drooled. Worse: I felt stupid. I couldn’t subtract anymore. I couldn’t make a to-do list, let alone accomplish items on one. I recognized that I wasn’t capable of continuing in graduate school. Utterly defeated, I filled out the paperwork to drop out.

Then, in the summer of 1995, my brain tumor was discovered. Diagnosis can often take this long. This might be because of the insidious and chameleon-like nature of this disease. The tumor was not malignant, but it had disrupted my pituitary function. The symptoms are general, confusing, escalate slowly over years and can be easily misinterpreted.

It was great to have a chance at a meaningful life again, but I found it embarrassing to learn firsthand how completely controlled we are by our hormones. I thought it was about the gray matter, but this experience forced me to look differently at how we think. I have had to shape my personality by my hormone doses.

The journey of tuning “me” began by fixing basic things. Everyone focuses on testosterone and estrogen, but these are just a small part of the mix of what is needed to stay alive and healthy. For example, consider the hormone cortisol; it’s a crucial component of the immune system, and you can’t live without it. I don’t make any cortisol. If I don’t take it, I could die.

I had to make a plan to replace the chemicals that the missing parts of my brain used to make. There wasn’t a clear and detailed road map for this. Blood levels of these chemicals vary for people of the same age and sex, and even more between men and women, young and old. More of us may be affected by variant hormone levels than we realize. One systematic review estimated the prevalence of pituitary tumors at nearly 17 percent of the general population.

So, what was the dose for each chemical that made “me” me? And how was I to find out without trying a range?

I started trying different dosages and was amazed by how my thinking, my sense of who I was and my behavior toward others changed with tiny shifts in dosages. I didn’t know who I was anymore, nor who I wanted to be, but I was healthier.

I finished my Ph.D. within months of my surgery to remove the tumor and co-founded my first technology start-up. Yet it took me years to craft a better “me” after my personality was essentially killed by the effects of the tumor and surgery.

This sort of exploration and self-tuning is not easy. Finding a doctor who could help me replace all the chemicals that the missing parts of my brain had made in age- and sex-appropriate combinations was nearly impossible. Doctors told me it would be too expensive, that I was fine and didn’t need to do more.

They were wrong. I gained nearly 60 pounds within a year of surgery on the dosages I was prescribed. I fell down two stairs during this time and broke both ankles, since my bones had been weakened by the absence of hormones. For the next six months I lived in a wheelchair at my start-up because I couldn’t get back up the stairs to my apartment in San Francisco or drive without use of my legs in the stick-shift car I owned. We didn’t have a shower there, so I had to take sponge baths and sleep on a futon in my office. I was not “fine.”

This all changed when I finally found a doctor to work with me to reconstruct my personality and my health by tuning combinations and doses of these powerful chemicals; this physician’s support and patience over 18 months helped bring “me” back to life. I lost about 80 pounds in a year without a program of diet or exercise. I stopped suffering from terrible jet lag during my frequent travels. I felt clever again, and my career began to take off. I started to date.

In my experience it can be difficult to find a doctor to help a patient do this. I believe it is only partly because of the shortage of endocrinologists, doctors who specialize in the hormonal systems. Some doctors seemed not to believe that every hormone mattered. How many other patients like me have failed to find their ideal balance of medications?

There is evidence that careful tuning of these hormones can lead to dramatic personal and professional outcomes. Doctors and patients should consider replacement of every known hormone that is missing. New neurochemicals are identified by researchers every few years and should be studied as possible additions to the mix.

And access to these medications should not be hindered. As it stands today, some of the hormones I need daily to stay alive and to thrive can be, and frequently have been, blocked at the whim or neglect of a doctor’s office, insurance company or pharmacy. And still, 18 years after my surgery and despite great advances in endocrinal science, I need to fight to get them.

Disputes between organizations on whether prescriptions, test results or proper forms were transmitted or not. Communication breakdowns. A Kafka-esque nightmare of constantly needing another approval. It can take weeks to be notified of a rejection.

I spend an average of 10 hours a month nudging, charming, name-dropping, fulfilling requirements and at times getting angry to try to persuade a chain of people to let me get the neurochemicals that I need at whatever the price. I usually spend between $100 and $1,000 per month on these chemicals, depending on what health insurance I have had at the time. On occasion it has run $5,000 per month. Sometimes health insurance has covered all the cost except a standard co-pay, sometimes very little.

Patients need more control in this process. Any number of people in the chain can keep us from our drugs — the effect is multiplied for me by the dozen meds that I take. The more expensive ones always seem harder to get and involve more steps. Thus more things that can and do go wrong in the perfect chain of dozens of people who need to move my case along for me to get my meds.

A common response is utter disbelief. Most people go the pharmacy and get their prescriptions filled, and the worst indignity is a long line. Their personality won’t go wild. A part of my body has been removed, it will never come back, and I need to take a dozen meds every day or I could get sick or die. Among the drugs I need to take are human growth hormone, hydrocortisone and thyroid hormones. How can we resolve these challenges?

Solutions should focus on allowing patients with a proper diagnosis continuing access to the medications they need. The health care system should make it easier for patients who need vital hormones or medications to actually get them every time. And new technologies should be used to make it easier to get our prescriptions filled and to understand why they are held up. In the past, pharmacies and insurance representatives have denied me access to such information in a timely manner, such as email or even over the phone. Access to online systems would allow patients to track their prescription from the doctor’s office to the pharmacy, and to get information about insurance coverage.

Without the ability to fine-tune my hormones and neurochemicals I believe I would have been trapped as a near-imbecile, wheelchair-bound, in my mother’s basement for an abbreviated and miserable adult life.

But with this ability I have reached the top of my field. Still, the health care system hinders my access to the chemicals I need to live. I am far from alone in this situation. It’s time we changed the system.

Here is Dr. Mary Lou Jespen's personal Web Page - that has a section dedicated to "Getting the Medications we Need"

http://www.maryloujepsen.com/#!access-to-meds/c1pii

she lists her Doctor: "Dr. Harriette Mogul from the Westchester County Medical Center was the one I spoke of in my article that tuned my levels carefully over 18 months in the late 1990s. "

It is very interesting, and I thought you might want to know about.

JilMac.com

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Preview YouTube video Solve for X: Mary Lou Jepsen on imaging the mind's eye