#2 "Are We There Yet?"

Well, it has been almost a month since my first post.  I elected to put off officially publishing my blog until I had been able to get my whole family in the loop.

My daughter has been studying abroad in London these past three months.  She returned home to a different mother than the one she left -- at least in physical form.  It wasn't news we wanted her worrying about halfway across the world.  We had a chat this weekend, upon her return.  She is a stalwart young woman, and I know she will be joining my son and husband as we travel this journey.


After discussing our fears about MSA with my neurologist last month, I did receive a referral to a Movement Disorder Specialist at Swedish Medical Group in Seattle -- but couldn't get in for two months.  I understand there are not many of them, but when your physical being is in retrograde motion -- getting worse each and every day -- two months seems an eternity.  So, we are playing the waiting game until April 29th.  In the meantime, we are all making adjustments.  I have transitioned from occasional use of a trek pole to using a cane in and out of the house -- and even using a walker in the house.  Eating is becoming more difficult, as it is difficult to chew and swallow without choking.  In fact, I have lost almost 20 pounds, and 13 inches since November (not the way I planned on losing weight).  Everything takes more energy and more effort -- and more time.  Being the punctual one in the family, this is an adjustment for me, as I am the one running late now.

My children (ages 21 &23) have been great, and have taken to teasing me about most of my symptoms.  We have always shared a wonderful (if corny) sense of humor, and it really helps take the edge off my frustration.  Most commonly they like to tease me about my "drunk talking" or walking -- even though we all know I haven't had a sip of alcohol.  We have to hope I don't get pulled over driving (one of the few things I can still do --at least for short distances).  My husband has really had the biggest adjustment.  Six months ago his wife was self-sufficient, teaching full-time, working out, taking care of the house, traveling...you get the picture.  Today he is jumping up anytime he hears me cough or choke; helping me in and out of chairs, cars, and the bed; researching my symptoms and medication; contacting my family to keep them updated; making calls for me because my voice doesn't hold out on the phone; and taking over many day to day household duties I can no longer do.  Oh yes...he still is working.  This is on top of worrying about what the future holds.

I am still going to the gym, and working with my physical therapist.  I have a fabulous chiropractor and massage therapist.  I am meeting with a nutritionist next week, and have started meeting with a psychologist to help me deal with the emotional upheaval that is part and parcel of my journey.  ( I do have to share how frustrating it is to meet with the psychologist, then be unable to speak because my vocal chords won't work if I start crying--really????  At least he is patient!)  My friends and family have been amazing, and my stepmother has become a warrior in my corner, asking questions, gathering medical research and communicating with the family on my behalf.  I am feeling so very blessed with the people in my life.  I am thankful for the prayers and loving wishes of people I know, and even people I don't know that have added me to their prayer list.  I promise to fight the good battle -- one day at a time.

Just waiting to find out more about my journey...not there yet!

#1 "Toto, I've a feeling we're not in Kansas any more."

So where exactly am I?  Not where I expected to be.  I am in a place of surprise, shock, uncertainty, fear, sadness and exhaustion -- while still trying to be the "glass half-full" girl I pride myself on.

In October, a month before my 54th birthday, I was diagnosed with Parkinson's Disease.  A definite detour in my life's path.  Just starting my 10th year of teaching, working out 5 days a week, traveling often with my husband of 26 years -- I had been working hard to counteract what I thought were signs of aging & menopause.  In the months since then, my symptoms have continued to progress, more rapidly than any of us expected.  The medication and physical therapy has had minimal impact.

Each visit with my neurologist has brought an increase or other change in prescribed medication.  He has admitted (and this is supported through all of my research) that treatment is a bit of a guess-and-check process.  You keep trying things, as each patient has a different path of symptoms, and a different reaction to treatments.  As time has gone on, though, I have had a strong feeling that there is more going on -- and I brought my suspicions to him.  I wish he could have told me I was wrong.

I am being referred to Swedish Medical Center for additional evaluation.  We think I may have developed Multiple System Atrophy (MSA). This is not good news.  Multiple System Atrophy (MSA) is a rare degenerative condition (historically called Shy Drager Syndrome). In MSA, more widespread neurological damage occurs than in the case of Parkinson’s.   When compared with Parkinson's Disease, Multiple System Atrophy affects more areas that control important autonomic functions such as heart rate, breathing, blood pressure, urination, digestion, body temperature, eye movements and sweating.  MSA does not usually respond as well to anti-Parkinson's medicines, if it responds at all.  Parkinson's Disease responds well to these medications, which helps doctors to make that diagnosis.  MSA progresses more quickly--patients have an average survival rate of 7-9 years, while Parkinson's Disease does not necessarily affect the longevity of the patient. 

I am a fan of knowledge -- the more you know, the more choices you have.  I have done due diligence in my research.  Now I need to wait for the medical world to share what more they may be able to tell me.  I have a wonderful group of people supporting and helping me -- my physical, occupational and speech therapists, my personal trainer (Rodney Soto), dear friends, and my family.  I am up for the challenge -- refuse to take it lying down.

This blog will be my way of documenting a journey I hadn't planned and have no map for.  Fasten your seat belts.