parkinson’s: Have You Have Tried everything?

Tracy has Advanced Basal Ganglionic Cortico Degeneration. This is a very advanced form of Parkinson’s where her muscles are continuously contracting and she is not able to perform normal functions such as speech, walking, or even sleep.

We tried all of the usual drugs including synthetic versions of dopamine, every known form of neurological stimulant, and surgeries including tendon extension surgery on her hands to improve grip strength.

In addition we researched deep brain stimulation through the National Institute of Health and the Booth Gardner Research Center. However the location and intensity of rapid onset Parkinson’s make deep brain stimulation a non viable technique.

Finally, we have researched stem cell transplants for various patients and have concluded that this is the most viable option left to improve her quality of life.

Currently it takes approximately $25000 for 3 treatments of adult stem cells harvested from Tracy’s own body to start the process of regeneration of connections in her brain. There are several centers that specialize in this, but so far StemGenex appears to have the best research and development process. But currently their process is not FDA approved and treat symptoms but guarantee’s no results.

Other processes that offer hope include stem cells that produce ganglionic tissue that is then inserted into the brain, or stem cells generated from oocytes from the human egg that has not been fertilized. Check out the link below:

https://parkinsonsnewstoday.com/2018/07/26/stem-cells-promising-parkinsons-therapy-special-issue/

The first process is currently undergoing approval through the US Food and Drug administration. See abstract below:
This autologous cell therapy is entering the regulatory approval process this year with the U.S. Food and Drug Administration to begin to transplant the cells in the following 1 to 2 years.

Join us in our fight to help Tracy’s quality of life improve and continue a foundation whose goal is to erradicate this disease.

Letter to Northshore Christian Church in Academy

Tracy Walker Steele Parkinson’s Foundation

Letter to Senior Pastor Ken Long of Northshore Christian Church in Academy:

  1. 93% of all funds raised go toward patient and family care for Tracy. Everything from food to family support during Hospitalization has been covered. 7% has gone to transportation expenses and processing of funds.
  2. The primary form of fundraising has been GoFundMe.com: Fundraising Goal $25,000. Funds so far raised have been $1500 and have gone toward Tracy’s care and hospitalization. Funds have gone for necessary dietary supplements for Tracy, cost of transportation to and from Appointments for family members and caregivers to stay in the hospital with Tracy last year, covering family members and caregivers meals while Tracy was in the hospital and disability support equipment for the home.
  3. Current Goals: a) Cover next month’s rent increase. Section 8 has increased rent next month over $300 and decreased coverage to a one bedroom apartment with no handicap accessibility. b) Raise enough money for new manual wheelchair’s for Steven and Tracy. Raise enough money to support licensing maintenance and procurement of a person to help with transportation. Vehicle to be donated by D.A.R.T. or Para Transit. c) Full time private Caregiver Support so that Steven Steele can work fulltime and not be penalized. d) The Director of the Foundation Stephen Steele to Make Enough Money Monthly to Cover All Family Bills and Be Able to Address Financial Needs for the Future. Goal to provide Transportation to and from Church. One method is seeking donation of D.A.R.T. vehicle or Para Transit vehicle with wheelchair access and funds to hire a driver.
  4. Long Term Goal for the Foundation: To become self-sustaining and able to help many more families facing Traumatic Brain Illness across America. a) Through online sales of donated or purchased merchandise. b) Through grants to fight parkinson’s and alzheimers. c) Through donation retail location where sales of donated goods become self-sustaining revenue stream for the foundation. d) Local or online fundraising.
  5. Connect with Other 501(c)(3) organizations interested in serving the population. To build up foundation budget to support Tracy and other Patients like her until stem cell research catches up enough to cure their illnesses or significantly improve the quality of their life. Establish networks of supporters to help spread the message of current needs.
  6. Establish Board Members with Experience in online fundraising, grants funding expertise, on the ground fundraising ideas, Legal and Ethical Standards for 501(c) (3) Operation, and other contacts who can help the foundation.

Steven Steele

Executive Director

Tracy Walker Steele Parkinson’s Foundation

Twsp.org

Tracy’s Story

My Life’s Story

(Tracy Steele)

In first Samuel 3 God woke Samuel by calling his name, my first memory God woke me up by calling my name … it was Easter Sunday I was four or five years old, my mother was getting ready to leave to go to Sun Rise  service and since I was awake she took me with her. I remember it was outdoor and there was a beautiful sunrise in the desert I also remember burning my mouth on hot chocolate …

In my early childhood I lived on a farm with animals. Cats, dogs, chickens, geese and two pigs named rib and chop. I went to school at Jamul los Florence. I remember one year there was a flood so everyone was stuck in school until their parents could pick them up. The school served Pb&j sandwiches while I waited for my mother to pick me up and since our house was on a hill so it wasn’t flooded. Other memories I have are of two friends Kimberly and Leah and a girl named Leslie.  Leslie would play horrible tricks on me that would hurt my feelings deeply.  The end of third grade we moved to west Seattle. After living on a small farm the city life was scary. My new school was called Arbor Heights it was walking distance from our new home. At this new school I was often teased. When walking home from school a group of teenagers would make fun of me and make me cry. The only way I could get them to leave me along is by singing church songs.

While I lived in west Seattle my family was building our new home in Edmonds. At the end of fifth grade our new home was all finished. It was beautiful home overlooking the Puget Sound. I started sixth grade at Olympic view and what a surprise more teasing that made me cry every day. All my friends were girls so I was accuses of being a lesbian and boys who liked me thought I was playing hard to get but I didn’t know that game. A boy name Ollie asked me out every day for a month. I finally said yes on a Friday and then he broke up with me on the following Monday, this kind of thing went on for two years.

At the end of eighth grade I had revelation that it didn’t matter what people thought of me. The only thing that mattered is what I thought of myself from that point on my life got better…

Ninth grade I started high school at mariner. I made friends with other outcasts. The next summer I met Ron, he knew me since sixth grade in choir. One day he came to my house all muddy because he fell off his bike. While my mother washed his clothes he borrowed some polyester pants that my dad had in his closet were dry we went for a walk on the beach. He said to me “what would you say if I asked you to go out with me” I answered “are you asking?” he said “yes” so I said “yes”. Later that day he gave me my first kiss. During that summer Ron visits often. We went for a lot of walks on the beach and a lot of kiss I was sixteen and I thought he was charming.

Tenth grade started and I continued to go out with Ron. His friends nickname me blood hound because I was able to find him anywhere. I met a new friend who I called D.D. I went over to her house on Halloween. We went trick or treating in her neighborhood, we came to a house that I recognized by description only it was Ron’s house. I met his step mom then he came trick or treating with D.D and I… On Valentines Day Ron gave me two carnations; he said he wished they were roses. He also drew me a blue rose. When spring came his step mom sent him to job core. That summer I went on a cruse to Mexico with my family it was fun. They served us Champaign but I didn’t taste. That summer I also went to church camp, I got to ride a horse for the first time and I enjoyed it. At camp I met a girl name Krista, we became pen-pals.

I became heavily involved in church not long before I got baptized at Silver lake chapel I met a guy named ken at the church. I found out he also went to my school. I broke up with Ron and began a relation ship with Ken. Ken was a fanatical; one day at school ken got up on stage during lunch and started preaching, this made me embarrassed…

    Ron came back from job core that winter. I broke up with ken but I didn’t go back out with Ron but we did become good friends. We often talked during lunch at school and sometimes we even cut class together we also spent a lot of time in the upper library.

The next summer I went to church camp again. I was seventeen; I met a boy named Gary. Gray liked me but I wasn’t to sure about him. We exchanged phone numbers and talk a lot on the phone a lot. Gary lived on Ballard, WA so we decided to start a long distance relationship…

In the twelfth grade I was really involved in church related activities. I hung out with a collage group at school and I stared a bible study with them during free time and lunch. Our group was small but effective. I graduated from high school in June 1986. I took the summer off to have fun. My dad taught me how to drive during that summer. I got my first car it was a “78” dodge dart. That summer I got together with Krista and Gary often. I had fun going out to lunch with Krista and spending time getting even closer to Gary. That was the summer I lost my virginity to Gary.

In the fall I attended lake Washington technical college studying book keeping. I got my first job at skippers when I was eighteen; I later got a second job at Washington inventory services. One winter day my car did a 360 on a black sheet of ice it really freak me out. So I asked my brother to drive me to work. I told my supervisor I couldn’t stay late that night to help clean but she put me on night shift anyways. My mother came to pick me up; I got fired from skippers the next day…

I continued to work for Washington inventory and continued collage. I broke up with Gary and dated around.  In May of “87” I graduated from collage from WA votech and started a job at universal frate forwarder in Seattle, My dad like taking me to work because he could use carpool.

 One day while I was at work Ron showed up at my mom’s home. I was surprised because I hadn’t even seen him since high school. I soon renewed my relationship with him. I met his family and one year later I got pregnant. We got married on July on 1988.

I was now driving my mom’s old 1980 Toyota carola. Ron decided to trade to in for a cargo van. We were now living in Lynnwood. I was working in home depot and Ron was working in construction.  Ron lost his job and I was close to my due date. Things got tuff our van got repo and we moved in with Ron’s step mom in Everett. It was three houses down from the mid-wife. Ron went to jail for assault for two days.

On feb.8, 1989 I delivered my son who I named James lee at a birthing center in Kirkland. James was 8 pound 7 ounces and 21 inches. After we got kicked out of his step mom’s house, so my parents took us in. Ron didn’t find work so he went into the navy. He was shipped out five weeks after James was born. Ron didn’t last long in the navy. I was on well fare. I soon moved out of my parent’s house to live in section B close to the Everett mall. Ron was discharged with a dishonorable change. Ron and I work while James was in daycare.

I got pregnant with my second child, one day Ron brought home a friend named Steve. He was in a wheelchair and I live on the second floor I was impressed because was able to get up them with out any help. Steve was a big fan of my cooking skills. Ron ended up in jail again. So Steve started coming over often. We even went to the zoo.

Ron got out of jail at the end of August. I had a baby girl name veronica on Friday September 13, 1991 she was seven pounds 7 ounces and 20 inches. We moved from an upstairs two bedroom to a three bedroom down stairs. My friend would visit often also Krista. Thing were going well for a short while, this was before the storm.

Ron knees started hurting so doctor prescribe morphine shot. When those ran out he would look for anything he could get. A young women we let stay with us got him hooked to crack, cocaine and he soon turned our home into a drug house. I had nervous break down. I was making plans to have Ron arrested but the he ended up in intensive from a weak heart condition on Feb. 28, 1996. He was there for two weeks.

Later in march a stranger came at night to our house, it was a diversion. Ron owed money and so they sent a guy to warn him. Ron was on the couch and the guy came and started punching him in the face, I jumped on his back and he threw me against the wall and I cut my chin on a cookie jar. The man told me I was not part of this and I wouldn’t have gotten hurt if I didn’t jump on him. We went to the hospital so I could get stitches and a tetanus shot.

In April or May I noticed my right arm acting funny; it would elevate on its own and would move slow. The doctors diagnose me with carpel tunnel.

On July third Ron asked me for 20 dollars which I gave him and later learned it was for drugs. The next day I went to neighbors to invite them over for the 4th of July BBQ. Ron had asked for an egg sandwich and some cookies. The kids were outside playing, when I got back from next door Ron was purple I ran back and called 911 but it was too late. Ron died just four day before our 8th anniversary.

Later that year I went to neurologist who diagnosed me with Parkinson. He gave caradopapa which made my condition worse. I couldn’t get out of bed for a day in a half, so I decided to switch doctors and got diagnose with foculdistonia.

I started helping create a library in the complex where we lived; this was time of healing for me after Ron’s death. I helped collect about 2000 books from the residence. Around that time I started seeing my friend Dan.

One winter day I ran into an old friend from high school named Karen. I told her Ron died and she told me Steve was looking for me. I gave her my phone number to give to Steve. A few days later Steve received a prophecy that he would marry me.

The end of January Steve called first to give his condolences and then asked if I would come over and cook for him. (In his words “come over and baby me”) I said “okay.”  I got directions and decided to make chicken and shrimp pasta with cream sauce and garlic bread my children and I went over to his place a care taker was leaving when I got there. The first thing I noticed in his place was the weight bench in the kitchen also he did not have an oven. I remember he made me a cup of coffee that I didn’t care for. I fixed dinner and Steve got out a folding card table for us to eat and it collapsed while we were eating. I decided then and there we would eat at my place. The next week my kids came down with chicken pox so I had to cancel James’s birthday party, funny I never got chicken pox in my life. The following week Steve came to my apartment, we had a much better time.

Spring came; I had lots of visits from Krista, Dan, and Steve I continued to work on the library Steve got a computer to help me with my library I was putting together. I also was looking for employment.

My mother invited my children and I to Disneyland, since I was still looking for a job I didn’t go but I did put my children on a plane to California. When I got home I got a call from Dan that his brother younger was killed I had to wait till my children got home, So I wasn’t able to see Dan.

In April veronica and I met Steve’s parent and at that time his step dad was dying. They were very impress with me. That same month I went to his fathers funeral, his grave was a 10 feet away from Ron’s grave. Afterwards I was introduced to the rest of his family, his sisters told Steve not to let me go.

In September Steve moved in. we got married and moved to Lynnwood. I got into a car wreck in the Everett mall parking lot all with one week. Soon my condition got worse. I began to have more difficulties with my both hands, my right hand was contracting a lot and my left hand was slower. I also had trouble with my balance, I started using a walker, I was referred Dr. Chung. In Everett in his care he drew blood many times to test for toxins and other possible solutions he also tried a verity of Parkinson’s related meds which did not help including mearapex which kept me awake 23 hours out of 24 hours each day and others meds that made me comatose. Dr. Chun then referred me to U.W. to Dr.Samii who is a specialist in disorder. He told me I have Cordicule Basal Ganglionic Degeneration which is a form of Parkinson that does not respond to medications.  I went home and did research on the disorder. I found information on the national institute of health, they were actually looking for volunteer for neurology research they required an MRI and a neuropsychological evaluation. While I was getting more info; I found on the e-net, a group of people that have dealt with my disorder all around the world including Japan, Australia and Maryland.

In December of 2000 I went to NIH in Maryland I was seen by several neurologists and took many test. My mother was with me to help with any questions concerning family history. I would call Steve everyday to check in with him and my kids’ part of my time I went on a tour of D.C. I even got to go to the white house. It was around Christmas, so I got to see all of the beautiful decoration.  I also saw the Smithsonian museum. While I was at NIH I received a visit from a lady from an online support group who brought me cheesecake. Meanwhile at home Steve received a call from NH research asking to buy my brain! He thought I was dead but Steve let them know I was still using it. All in all I enjoyed the experience.

My condition continued to deteriorate, my right hand was contracting so I was treated with Botox injections and later on I had tendon lengthening surgery. I also participated in a research study with hearing and speech pathologist. I noticed while I was doing the test that I had to literally shout my voice and I trouble with making sound. My balance got worse that I needed a wheel chair meanwhile Steve called every church to pray for my healing. One day at the grocery store I was approached by older woman who told me that god would heal me. She also said it would take a long time by this time I was getting care from ccs. It was rather hard for me to except help from strangers when needed toileting and showering. Some caregivers I liked and I got along with others. One named Lisa had a dream and in this dream they were knocking on the door and I was walking and answered the door some of my family have had the same dream.

One caregiver named Linda introduced my family to her pastor. We were given rides to church every Saturday. It was a small church I met Laura who help with my personal needs while I was there. Steve started going to Shoreline Community College to study Sociology and Psychology. We later got on section 8 housing and was required to move. Linda’s daughter Sally drove me around to check out apartments. We found an apartment less than a mile away form where we lived. The church caregiver’s relatives and all helped with moving to our new home. Soon after we met our upstairs neighbor and she was a manipulative little girl. One day while her mother was at work she tricked my son into having sex with her. Child protective services got involved and sent my son who was 15 years old into foster care. Later on, the neighbor created hostility towered Veronica and even threatened to kill her. Veronica called the police and they were evicted. The church we were going to was having financial difficulties and there was a scandal between the pastor and one of the families, so we left. Laura helped us find a new church, it was Northshore. Veronica was soon baptized and Laura and I went to the woman’s group on Wednesday evenings.

One of Steve’s old friends took him to a healing seminar in Monroe. Steve was so impressed that he wanted me to go with him. In fact when he got home he said he felt a lightning stricking feeling and the pain in his back that he’d felt for years was gone. He had some movement in his legs. I went with Steve to the next seminar, the speaker prayed and laid his hands on me and told me after the seminar that not only would I walk, I would run too. They also said Steve would walk. I went to my woman’s group the next Wednesday and told them my experience was well received I started reading the bible every morning in till I read through the whole thing twice. The caregivers would turn pages for me.

An old caregiver by the name of Ann to stay with us for a while, Ann would neglect her animals and after she moved out, she got a pug named Yoshi. While she came over to visit, the pug started chocking on a treat and we took her to the hospital but it was too late she died on the way in my arms. She soon got another pug named Murphy who would dig a hole in her wall. We were the only family that the pug liked and would live with. SO on Easter we took him in our home. Murphy’s mannerisms were terrible; he had no self control and was not potty trained. We had to keep him in the bathroom for a while. In July, I needed to use the bathroom; I was still able to walk but needed help up. We moved Murphy to the kitchen and Veronica helped me. I walked by myself to the bathroom, the floor was wet and so I slipped and fell hard and cracked my leg. I was in the hospital for one week. They put screws to hold the bone together. Veronica stayed with me the whole time and when I got home my physical therapy. The dog’s training started as soon as I got home and Veronica helped with both and was great at both.

A week later I was grocery shopping and though my balance wasn’t good veronica has me shopping in three weeks. Steve graduated from shoreline community collage and my son James graduated from high school. I was very proud of both of them. Steve is working on his bachelor degree online. My current condition is stable for now; I can walk short distances approximately 100ft around the house as long as someone is hold on to me. Though I can not turn and freeze at times and have trouble starting up again; my arms are useless most of the time my hands are contracted all the time. I can close my hands but I can not open them, my voice is faint and I have trouble pronouncing certain letters. I have to be careful when eating certain foods and drinks because choking is a real danger for me. I also have to keep stress free since it’s makes my condition worse. I get frustrated and sometime it causes involuntary movement in my arms and legs. Though most of the time I try to stay in good sprit.