Allison Ginsberg's Story

I am 32 years-old and was diagnosed with ALS (amyotrophic lateral sclerosis), commonly known as Lou Gehrig’s disease when I was 31 years-old. In the last two years, my life has taken an unexpected direction and each day I face new challenges. This is my story.  

I have always been an active person.  I am a true Michigan girl. Growing up on the water, it is not by accident that I ended up on Lake Michigan in Chicago. I love to be on the water, in the sun, swimming and on boats.  Ask me to Vail, Whistler, Tahoe or anywhere out west to ski, I’ll strap on the snow boots and skis and be there with you.  I like to run, to be outside, to golf, to play. But I have another side to me that I do not always show – I’ve always been serious about my work and my career – I love my job and the people I’ve come to know.  Deciding not to work was the most difficult decision I have yet to make, but one I had to do. With that said, I am attacking each obstacle day-by-day as best I can with a positive attitude.  I am still me.  I am not different just because I can’t do all the same things.   

I will always be me –  I will always be Allison. But today it is a challenge to open doors, sign my name, fasten jewelry, button buttons, do my hair and make-up, put on my socks, and walk. With each new obstacle, I have prepared myself to adjust to what comes next.  I got my hair permanently straightened and my eyeliner tattooed.  I told myself that I’m going to wear heels as long as I can, until I fall and break something. In January 2010, I fell outside my apartment and fractured my skull in two places and was in the hospital for a week. No more heels. After having to ask a date to unbutton my jeans so that I could use the restroom, I decided to swap out the buttons on my jeans for a hook and eye clasp. I took in every pair of pants I own and had them hemmed and changed the buttons.  The silver lining was shopping for all new shoes!   

This is a HUGE change for me. But know that even with physical changes, I’m still me. People ask my close friends what the plan is. I’m taking one day at a time. I’ve got the pants hemmed and put the cute flats on. I have put the condo up for sale.  I may live at my parents on Gull Lake in the future.  Ideally my place will sell. I’ll rent a place in Florida in the winter.  Being retired, the possibilities are endless.  I want you to know that I am strong in spirit and active in mind. 

My story starts two years ago.  In about June 2008, I noticed the slightest difference of strength in my right hand versus my left hand. I noticed that I had more difficulty picking up my laptop computer and stacks of paper or magazines -- they just slipped through my fingers.  From October to December my friends became aware of my complaints of weakness in my hand.  In January 2009, a good friend scared me. She told me that a “pinched nerve” could cause permanent damage if it were not treated.  On March 10th I had my wakeup call sitting in Starbucks in a hotel in Dallas, TX for a sales meeting.  I ordered a bottle of orange juice and after trying to unscrew the top for 15 minutes, I finally asked for help.   

That was the day I remember as the beginning of my life-changing journey.  Nothing is easy about ALS including the diagnosis.  Mine took fourteen months, gallons of urine tests, too many blood tests to list, ten doctors and several diagnostic detours to arrive at the final diagnosis of ALS.  I have seen with my own eyes what feels like half the staff at Northwestern University.  I first started seeing an orthopedic surgeon that I had seen before for pain in my right shoulder that I have experienced on and off since childhood. 

The orthopedic surgeon sent me for my first EMG, (Electromyography).  I’ll never forget this experience.  I was dressed in a typical hospital gown and there were 3 residents and 1 attending physician in the room. They placed a needle containing two fine-wire electrodes into my muscle. Then I was asked to contract the muscles.  They were telling me to “just relax”.  Just relax! I thought.  It’s tough enough being exposed to 4 random strangers and then having needles in your muscles!  The EMG showed abnormal spontaneous activity that indicated some nerve and/or muscle damage.   

My orthopedic surgeon referred me to a Neurologist.  On March 31st, the Neurologist took some blood tests (B12, T3, Creatinine, Rheumatoid factor, Free T4, ANA) and sent me in for a brain MRI to look for Multiple Sclerosis. All of her tests came back normal so she gave me a script for physical therapy.  She also said that while it didn’t fit anything of concern regarding my hand, they did identify nodules on my thyroid. She directed me to a primary care physician. 

The primary care physician sent me to get an ultrasound and based on those results, he was concerned about cancer.  He referred me to a wonderful endocrinologist, Dr. Cord Sturgeon, who performed the biopsy showing that I was cancer free. But I still had hand weakness!   

Than in April 2009, I was at my sister’s house for Passover/Easter and her neighbor, another orthopedic surgeon, recommended seeing a hand specialist.  One week later I had an appointment with a hand specialist who told me I needed carpal tunnel surgery. But prior to surgery, he wanted to refer me to another doctor because he was concerned about the paralysis in my arm.  Prior to this appointment I had not heard the word paralysis.  He referred me to an amazing doctor, Dr. Dumanian, who created the first bionic arm!  I was able to get an appointment 1 week later.   

At this point my parents decided it was time for them to attend my appointments.  The doctor talked to us for a while, asked a lot of questions and began to refer me to yet another doctor.  I was near tears telling the doctor that I did not know what to do; he was the 9th doctor I had seen!!  I pleaded with him not to refer me again and he was kind enough to invite his good friend Dr. Robert Suffit, the neurologist into my appointment for a consult.  It was a very gentle way to refer me again!  Dr. Suffit swore up and down that he would not refer me again and I trusted him.   

A week later we were sitting in his exam room flipping thru brochures and I asked my mom if she thought I had ALS……I had NO idea what ALS was but it was written on the cover of multiple pamphlets.  Dr. Suffit introduced us to the words Motor Neuron Disease and told us to be very careful researching online because in England the words were synonymous with ALS but in the U.S. it was an umbrella term for a large group of diseases.  

At this point we began the focused search for a cause to the weakness in my hand.  I started seeing a physical therapist certified in the Mackenzie method.  PT brought a glimmer of hope that the weakness was related to an issue in my spine.  Next, Dr. Suffit ordered another EMG to check progression.  He also ordered a spinal tap, 3 gallons of urine tests, and so many blood tests that it wasn’t safe to take them all at one time.  The memorable tests were for Lyme disease, AIDS, and Syphilis…….all of these were a better alternative than ALS.  Finally, in June of 2009, the test results showed that I was healthier than most women my age except for the weakness in my right hand and the twitching in my arm.   

Only one test, my quantitative IgM, came back ever so slightly abnormal and we jumped on it hoping for a diagnosis of MMN, multifocal motor neuropathy, a treatable disease.  The doctor’s office called me and wanted me and my family to come in immediately.  I was at a National Sales meeting and I had to leave early.   They admitted me to the hospital and immediately began treatment with IV  IG (immunoglobulin) infusions.  I thought I was gaining strength back and I continued to get 5 hour infusions every other week but……..I kept getting worse.   

My gynecologist referred me to a functional doctor in her office who referred me to a functional neurologist, Dr. Perlmutter, in Naples, Florida.  We scheduled a trip immediately.  Dr. Perlmutter ran even more tests and put me on weekly Vitamin B12 injections, Vitamin D, a high dose of fish oil, Stress B, and Coconut oil.  He also inspired me to attempt a low-carb, low-sugar, and no artificial sweetener diet. The symptoms continued to progress, and by December 2009 I began noticing weakness in my legs.  All the while I continued to see Dr. Suffit every 3 months.  He put me on riluzole, the only FDA approved drug for ALS and I continued the IV infusions. However, the risk benefit ratio did not balance out.  Riluzole was shown in research studies to extend your life 2-3 months.  The side effects caused me difficulty breathing and made me very drowsy.  I tried it because the effects of treatment on someone in such early stages of ALS are unknown but the side effects were too great.    

Since there is no cure for ALS, I have developed my own treatment plan that keeps me active and builds my confidence.  I have always loved Pilates and I found the most wonderful Pilates instructor, Aimee Hebert, at Flow Pilates.  Aimee is also trained in traditional Chinese medicine.  When I told her about my disease she ran through all of the same neurological tests that my doctors were running and then she developed a plan to fit my needs.  She gives me the confidence I need to get through each day.  In addition to Pilates, Aimee researched the treatment of ALS with acupuncture and we are now doing some experimental treatments.  In addition to Pilates, acupuncture, and my change in diet, I have applied for an assistance dog with the help of Intervet/Schering Plough Animal Health (my employer). I’m working with a social worker at the Les Turner ALS foundation, and I am researching other experimental treatments with the help of my doctors.    

I am unable to do activities I loved to do – eat sushi with chopsticks, ski, run, go for long walks, and write. Sometimes I cannot be as social as I want to be.  I tire more easily.  I need more sleep.  I’m going home earlier than I would like when I would much rather stay out with friends. Like I said, I am a Michigan girl and I am going to do what I can for as long as I can.  I want to be with friends as often as I can.  I will be on the water of Lake Michigan as often as I can this summer. I am going to even try my hand at sailing in the Judd Goldman Adaptive sailing program. The foundation helps people with disabilities develop new skills and gain confidence and self esteem by offering them the opportunity to “take the helm” on boats specifically designed for crews with disabilities.   

My goal is to live each day to the fullest surrounded by my friends and family.  I encourage you to take some time to learn about ALS and support such a worthy cause.       

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