#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!