Friday, December 30, 2016

BOTOX Update

I am into my 10th week of my first round of BOTOX injections since March of 2014. I was afraid to try BOTOX again because the injections in 2014 made me feel worse. The doctor used a higher dose that caused me to lose feeling in my left leg and arm and the pain was excruciating when I tried to walk. I literally sat on my deck on a chair for two months crying most of the day. I was convinced by Dr. George Kukurin to try the BOTOX again to help me gain more flexibility in my neck muscles so that I could do my at-home therapy without struggling so much. It has provided relief from my symptoms and pain. Before the injections my pain level on a scale of 1-10 was about a 12. Now I am averaging around an 8. When I got the injections in October I only had them inject the right side of my neck because of my fear of the last round paralyzing my left side. This time I will try both sides and pray that it will provide more mobility and relief so that I can try to get back to some normal activities and gain some independence. Every day I do yoga and stretch along with my eye movement therapy. I work very hard at my recovery and I am learning to accept that the pain is part of my life and I need to learn how to live with it instead of spending my days trying to get rid of it.  The BOTOX has helped and I am thankful to have found a doctor who is willing to listen to my concerns and has compassion for my disorder. Dr. Timothy Lichlieter is the doctor who performs the BOTOX injections at Allegheny General Hospital in Pittsburgh. He is a neurologist who specializes in movement disorders. The other neurologist I see for medications is Dr. Susan Baser also at the same practice.

Tuesday, December 20, 2016

Finding a sense of purpose when nothing makes sense.

I had therapy today and discussed my inability to accept that I have put my life on hold waiting to feel better. I need to find a way to get out more often but some days the pain is too overwhelming and holds me back. I refuse to accept that this is how my life is going to be. I spend every day so focused on my therapy and exercises trying to get better that I have no other sense of purpose.

 I've been trying to get together with a friend for lunch or go out shopping or to a local event with my family at least once a week. Even if I feel miserable I push myself to go. Usually I end up feeling exhausted and in pain by the by the end of the day but mentally it feels good to get out of the house. My goal is that by the end of January I want to try and go out alone. Take an Uber and do something just for me. I always push myself to go out if it is something for my son. Seeing Santa, his hockey games or school events.


 My therapist, my husband and I discussed how important it is to do this for myself. My new year's resolution is to break out of this prison that dystonia and I have created and get a taste of freedom and independence back. My next round of botox injections are on January 9th and I am hoping that I can get some more pain relief and going out will be something I enjoy rather than something I endure. Here's to a new year of hope and promise. 


Cheers and welcome 2017!

Sunday, December 11, 2016

New video update of my progress.


Six months after starting treatment with Dr. George Kukurin...




I am so grateful to have these videos sent to me by Dr. K to continually see my progress. It is difficult as well because it may look like I'm doing great, but there is a lot of pain and hard work that goes into this progression every day . Today my head is shaking and I feel disoriented.  I have pain. I have progress. When I see these images I cannot deny that changes are happening.  I just wish that it would happen faster and easier. I am in week nine since the Botox injections and I feel like they are starting to wear off.  I will try to keep posting more often.

Friday, December 9, 2016

Active Research Studies at UCSF for Movement Disorders



Chronic Effects of Deep Brain Stimulation on Cortical Local Field Potentials in Parkinson’s disease and Dystonia (Activa PC+S /Brain Radio)
Principal Investigator: Philip Starr, M.D., Ph.D.
Contact: Sarah Wang, Ph.D.
415-353-7885
Sarah.Wang@ucsf.edu

Colonoscopy Biopsy and Alpha-Synuclein in Premotor PD
Principal Investigators: Samuel Goldman, Ph.D. and Caroline Tanner, M.D., Ph.D.
Not enrolling

Connect PD - Using Technology to Deliver Multi-Disciplinary Care to Individuals with Parkinson’s disease in their homes
Principal Investigators: Nicholas Galifianakis, M.D., M.P.H., Caroline Tanner, M.D., Ph.D., and Maya Katz, M.D.
Contact: Kristen Dodenhoff, B.A.
415-353-1555
Kristen.Dodenhoff@ucsf.edu

Deep Brain Stimulation for Movement Disorders: Study of Patient Outcomes
Principal Investigator: Jill Ostrem, M.D.
Contact: Kristen Dodenhoff, B.A.
415-353-1555
Kristen.Dodenhoff@ucsf.edu

Deep Brain Stimulation in Area LC for Chronic Tinnitus
Principal Investigators: Paul Larson, M.D. and Steven Cheung, M.D.
Contact: Sarah Wang, Ph.D.
415-353-7885
Sarah.Wang@ucsf.edu

Effects of Deep Brain Stimulation for Parkinson’s disease on Tinnitus
Principal Investigators: Paul Larson, M.D. and Steven Cheung, M.D.
Contact: Sarah Wang, Ph.D.
415-353-7885
Sarah.Wang@ucsf.edu

Endotoxin Exposure and Risk of Parkinsonism
Principal Investigator: Caroline Tanner, M.D., Ph.D.
Not enrolling

FOUND in PPMI (Follow Up of People with Neurodegenerative Diseases)
Principal Investigators: Samuel Goldman, Ph.D. and Caroline Tanner, M.D., Ph.D.
Contact: Kathleen Comyns, M.P.H.
Kathleen.Comyns@ucsf.edu

Genetics of Movement Disorders
Principal Investigators: Marta San Luciano, M.D., M.S. and Jill Ostrem, M.D.
Contact: Lorna Beccaria, R.N.
415-353-9453
Samantha.Konz@ucsf.edu

Predictors of Cognitive Changes after Deep Brain Stimulation Lead Placement
Principal Investigators: Jill Ostrem, M.D., Ethan Brown, M.D., and Caroline R. Belkoura, Ph.D.
Contact: Sarah Wang, Ph.D.
415-353-7885
Sarah.Wang@ucsf.edu

RACE PD - Remote Access to Care, Everywhere: Using Telemedicine to Deliver Patient-Centered Care to Patients with Parkinson’s disease
Principal Investigators: Nicholas Galifianakis, M.D., M.P.H. and Caroline Tanner, M.D., Ph.D.
Contact: Michael Dodge, B.A.
415-353-8328
Michael.Dodge@ucsf.edu

Safety and Effectiveness of Cala ONE Device for Essential Tremor
Principal Investigators: William Marks, Jr., M.D., Cameron Dietiker, M.D., and Nijee Luthra, M.D., Ph.D.
Contact: Kristen Dodenhoff, B.A./Michael Dodge, B.A.
415-353-1555/415-353-8328
Kristen.Dodenhoff@ucsf.edu/Michael.Dodge@ucsf.edu

Survey of Technology-Related Impulse Control Disorders in Parkinson’s disease
Principal Investigators: Nicholas Galifianakis, M.D., M.P.H. and Erica Byrd, M.D.
Contact: Michael Dodge, B.A.
415-353-8328
Michael.Dodge@ucsf.edu

Trichloroethylene and Parkinson’s diease
Principal Investigators: Caroline Tanner, M.D., Ph.D. and Samuel Goldman, Ph.D.
Data analysis only; not enrolling

Use of Liftware Spoon Device for Non-Invasive Measurement and Reduction of Hand Tremor
Principal Investigators: Jill Ostrem, M.D. and Svjetlana Miocinovic, M.D., Ph.D.
Contact: Sarah Wang, Ph.D.
415-353-7885
Sarah.Wang@ucsf.edu