A Journey to PD

Kim’s Story 
 

         On October 1, 1976, our 3^rd child Kim, was born.  Welcoming her in to the family was big sister Kelli, 3 ½,  and brother Chris, 2 ½ . As with her two older siblings, all was well and normal with her.  Being a stay at home Mom, I had the wonderful privilege of “being there” for all the “firsts” my children experienced in childhood.  As time moved on they had the usual chickenpox and 3 day measles, but none of the other illness like tonsil removal or tubes in the ears, they were quite healthy all during grammar school and high school.

         In 1995, Kim’s freshman year of college arrived and brought on a serious turn of events with her health.  She was walking to class one day, and out of the blue, her leg gave way and she fell down.  Kim was working afternoons in a Doctor’s office, as she was taking courses in Medical Records, and told a friend who also worked there,  her friend became very concerned and expressed that Kim really needed to talk to the Dr. about this fall. Of course, the Dr. was very concerned and ordered x-rays and blood work.  Kim called and told me of the fall and what test the Dr. had ordered.  When the test came back normal, a CT scan was ordered.  The Doctor was very concerned, but wanted to wait and give her some time to see what might take place.  After a while other things did begin to happen, she had severe cramps in her feet and legs, which caused her trouble driving.  The Doctor referred us to a Neurologist, and as time went on the symptoms became worse and moved into her arms.  At times she lost all energy and only felt like lying around. 

         Over the next 2-3 years the MRI’S, blood work, scans, spinal taps were all normal,  but her symptoms continued to get worse, the main thought with all Doctors was Multiple Sclerosis,  but the test just would not confirm  MS. 

         Our first trip to Mayo Clinic, Rochester, MN., in 1998  gave no answers, except what she  did DID NOT have.  We returned to Mayo Clinic 2 more times in the next couple of years along with seeing other Doctors in Mississippi, Atlanta, and Memphis, still no answer except “Probably MS” ,  but the Doctors would not prescribe any medications to help or treat her condition, except for medication for muscle spasms.  We were watching her deteriorate before our eyes and we were helpless. 

         One of her physical therapist suggested we see Dr. Michael Winkleman with Methodist Rehabilitation Hospital in Jackson, MS. Dr. Winkleman did see her and tried so hard to get a diagnosis,  during this time Kim became completely incapacitated. Finally with a conference with several of her Doctors at MMRC, they suggest we see Dr. Ruth Fredericks, a well known Neurologist in Jackson, MS.  As we wait for Kim’s appointment (which is 3 months, Aug.) Kim has a life threatening Deep Vein Thrombosis, in her left leg from her waist to mid calf. After a week in the hospital and being placed on a blood thinner, in 4 weeks time Kim makes a remarkable recovery, she is able to walk, and get around by herself.   But by Christmas, her condition begins to decline. By the 3 or 4^th visit to Dr. Fredericks, a diagnosis of Parkinson’s Plus and Multiple System Atrophy are given.  Kim is started on Artane and Requip.  Even though Kim’s condition continued to decline and she continues to need assistance and care 24/7, with the addition of the PD meds, we do have times of improvement.  Dr. Fredericks did continue to monitor her with MRI’s and kept checking her blood for rare conditions. 

         About 5 years ago a new symptom developed, she began having severe spasms in her eyes and throat.  We saw an eye specialist at University Medical Center, Jackson, MS.  He treated her with Botox injections around the eyes for the spasms, thankfully, it also controlled the spasms in her throat, which you can imagine is very frightening.  The Botox to her eyes had to repeated every 3 to 4 months to keep the spasms under control.  In the meantime Dr. Fredericks is searching for medicines or treatment to keep Kim at a more normal and functioning level, and we begin Immune Gamma Goblin IV treatments.  This treatment requires us to enter the hospital for 2 nights and and 2 days to take the IV.   We under go this for about 11 months, after no noticeable improvement , except for the fact that her eye spasms are under control, this treatment  is stopped.

         In May of 2006 Dr. Frederick’s suggest we make another trip to Mayo Clinic, and we go for 2 weeks,  Kim is checked by 8 Doctors, with and all of the Neuro testing,  still nothing is found, just the same neuro-degenerating condition of unknown etiology.

In the summer of 2008 we go to University of Alabama in Birmingham for again another opinion for Parkinson’s, and hopefully new medicines, Dr. Standart did suggest Kim get on Senimet, which is not normally given to someone her age, but she is on a small dose and we have seen some improvement.  We were hoping that maybe the Deep Brain Stimulation would be suggested, but it is not advised for Parkinson’s Plus.

After checking a link on the American Parkinson Disease web site, concerning Stem Cell Treatments in Germany, which is showing improvement with PD patients, Kim is not a candidate because she has an implanted bacloflen pump that controls spasms in her legs. 

         Kim still requires assistance at all times and attends a respite day center 2 days a week. Physical therapy has been a very important part of her treatment through the years to help  with stooping, leaning, stiffness, and rigidity.  Over the course of the last 14 years Kim has seen over 45 Doctors and Specialist, it has been  a very difficult journey to cross a bridge from being at the prime of your life, college, career, enjoying care free days with friends to being totally dependent on family for everyday care.                                           

         We have had to be creative to give Kim a purpose and a focus for everyday life.  Kim volunteers with the Women’s Ministry at our church on several projects, we make Comfort Pillows and Drainage Bags for Breast Cancer Patients at Woman’s Hospital, Jackson. MS, we make beautiful beaded Crosses for Mission Groups, that have been given out in several countries around the world and the US. She helps with the Operation Christmas Child project thru Samaritans Purse WorldWide Organization to provide gifts to a child that has never received a gift at Christmas. We make Handmade Inspirational Pottery Pieces that we give and donate, thru our home pottery shop. God has given Kim a “different life” than we had planned thru this illness, but it enables Kim to Share the Love of Christ in a unique way to others. 

We want to thank all those associated with the APDA and those affected by PD for their support, encouragement and friendship.

The APDA has enabled us to form a special bond with special people who have PD in their lives. It is with the grace of God, His strength, and the prayers of family and friends that we are able to continue this fight.

Kim Daves,  Rosiland Daves, and Alan Daves

 If you would like to share your story, please forward it along with a picture to teresa@msapda.org. We will feature a new story each month.