Self-Healing

I recently made 46 pounds of fruit and vegetable picadillo and stuffed  a 200-pound pig                                      At a recent dinner part

Dear Dr. Giroux:
Your presentation about your program yesterday was the only one of my entire World Parkinson’s Congress schedule that spoke to me and reflected the way that I have dealt with my Parkinson’s condition (I don’t like to use the word “disease.”) In 1987, while getting a massage I got a anxiety attack so bad that an ambulance had to be called. It was then that I first became aware that my left hand formed a claw, even when getting a massage, and I consider that to be the real start of my condition though I wasn’t diagnosed until 2004 or 5.

I am a good friend of Oliver Sacks and he came to my house to see me when I reported the situation. He physically demonstrated what what would happen to me– the shuffle, stooped posture, tremor, masked face that come with the natural progression of PD. I said to him “No, it isn’t! I’m going to beat that shit!” And so far I have with a combination of medications, intense exercise, constant entertaining at home, seemingly boundless creativity that I attribute in some way to having my dopamine level at an all time high due to levadopa. My biggest project while already in the claws of PD consisted of  conceiving a line of soft goods for Walmart and launching it. (I was not on on meds yet when I had to make my allotted 15 minute presentation by heart as we used to say ,which would get me in or not, appearing to be completely naturally vibrant and relaxed while I held on for dear life to a chair.)

Why has my system worked for me and what does it consist of? Firstly it has never entered my mind that I will become disabled and I know that I will not allow that to happen to me. I dedicate  50% of my waking  time to this endeavor.  Secondly, I have a positive attitude and tremendous discipline in attacking each symptom until I have more or less control it. I am a great believer in the tenet of Rational Behavior Therapy–you choose the way you feel and my  philosophy of life is “Can I do something about it?” If I can, I do all I am able to; if not, I try to move past it.

There was a time when I started having speech problems, I went to see a speech therapist and we decided that singing would be the best exercise for me and that is what I do. I even recorded an hour on NPR’s Spinning on Air and recently debuted a show called Zarela Act7 that is part performance art, part cooking lesson/part inspirational memoir just to prove that you can do anything with PD. I love to challenge myself so I threw in singing to add the fear factor that I love to conquer.  It was shot horribly and there were a lot of  technical problems that got me off base and it is not as smooth as my usual presentations are  but I got through it. (http://www.zarela.com/2013/zarela-act-7/). If you watch any of the videos done without scripts on my website (www.zarela.com) around 2007 you can definitely see the progression of the condition.

My exercise routine consists of 1 hour per week of a particular floor yoga routine consisting of xi-gong, martial arts and Pilates especially developed for me by Antonia Katranjieva of Yogea  Art Flow after I was hit by a taxi in 2004. Curiously  this event led to my diagnosis when they performed an MRI  and the technician commented on poor quality because of a  slight tremor. Eventually, I  had to have my left foot reconstructed and was not allowed to walk on it for months. The performed 28 different procedures  and I still have 8 pins in it.  I was warned that I might not be able to walk normally again.   Wrong! I walk everywhere and dance Latin music as well. Still standing exercises are painful and I am dealing with that by going to water aerobics three times a week. My left arm is very stiff and hardly useable sometimes so I am now taking swimming lessons.

Thankfully I have not lost my sense of smell  or taste.  As a chef I am able to whip up truly delicious and nutritious meals in minutes for myself. I always make some sort of vegetable, high fiber starch like the African grain teff, bulgur, or quinoa, and chicken or fish (roasted whole, flash fried, broiled , quickly seared or sauteed) and red meat too. During the summer and early fall, I often prepare  totally vegetarian meals too. I have one martini a day when I can; otherwise I settle for wine or a smoke.

Because of my career trajectory I get photographed a lot and do a lot of television besides my PBS series of 2001. I have had to relearn to open my eyes wide and make them twinkle, to smile broadly and brighten my whole face. You get the drift. This is all about self-healing and doing all the recommended things needed to manage this condition: physical therapy, occupational therapy (the most important for me in regaining some use of my left hand) healing massages, and constant work of all kinds. Also important is constant self awareness to avoid or control the typical Parkinson’s motor problems: I don’t shuffle, lose my balance ( I work a lot on that in water aerobics.) I am not stooped and walk erect even in heels.  I like to say that Mexican girls are born with two things: Pierced ears and high heels. Physical therapy  taught me how to rebuild my strength by using elastic bands and they stress good posture.  That is something I have always had because I am so short. Occupational therapy is intense and mostly very difficult. I have to play pick-up sticks, button and unbutton shirts, squeeze balls and pick up tiny beads with fine tweezers and put them in glasses.  Not easy but I have regained use of my  left hand to a large degree.

Thankfully I do not have the non-motor symptoms that so many have to suffer either. My mind is as sharp as ever. I’m working on my fourth book this time on naturally light Mexican food. It took me years to organize all my personal and professional papers and they have been acquired by Harvard/Radcliffe for the Schlesinger Library.

I know this probably sounds like shameless self promotion but I feel that it is important to share my story to hopefully inspire people to take the bull by the horns and take control of their destiny.. I know that this approach will not work for fast progressing or other types of PD but for those who have a slowly progressing kind like me, it can be very effective. I wish there was a place for this kind of testimony at the Congress.

I don’t sleep much but don’t need to. Though I catch a 5 0r 10 minute nap here and there  I seldom feel tired and have tremendous energy to entertain, feed my friendships which are my comfort and support, and see my grandchildren and my children when they are able to. That is the one “hair in the soup?” Luckily I mentor several young chefs and entrepreneurs and to them I am “Mama. ” I think it is especially difficult for  my children to see such a strong person like me struggle but I understand and don’t let it get me down. I choose to be happy.

My grandchildren: Yuma. Violeta and Wolfram.  You gotta have love and touch and be touched.