Parkinson's Awareness Tulip

The tulip — a red flower with distinctive leaves shaped like the letters “p” and “d” — was designed by a young onset person with Parkinson’s (PWP) from Washington state — Karen Painter. Grassroots support for making her tulip the national symbol for Parkinson’s awareness is growing.

The red tulip has been associated with Parkinson’s awareness since 1980 when a Dutch horticulturalist who had PD developed a red and white tulip and named it "Dr. James Parkinson.” And the European Parkinson's Disease Association (EPDA) uses a stylized red tulip based on the "Dr James Parkinson" tulip as its logo. 

Preparing for the FLL State Championship in Phoenix.

We had help from Tanner's brother Daniel. Thank you for your support Daniel!

These are giveaways for our fellow teams and their families.

Telephone Interview with Dr. Caviness from Mayo Clinic

Our team enjoyed the opportunity to speak with Dr. Caviness, who is a Professor of Neurology and a doctor at the Mayo Clinic.  He specializes in movement disorders and has been involved in a lot of research with Parkinson’s Disease.  

We asked Dr. Caviness how he became interested in specializing in movement disorders.  He shared that when he was close to our age he became really interested in electricity and physics.  Once he learned how the nervous system, brain, and muscles involved electricity, he knew at a young age that this fascinated him and that he would wanted to work in this area when he grew up and he did!  

Dr. Caviness has been involved in lots of research.  Much of it has involved studying how well the drugs work.  The other project he is really involved with is brain bank research.  They do biochemical and genetic studies on the brain tissues donated from deceased Parkinson’s patients.  When the PD patients sign up to donate their brain, the researchers do a lot of testing on them and later when they have the brain to study they can closely correlate their symptoms and the actual findings on the brain. This helps the researchers learn a lot.

The biggest challenge Dr. Caviness feels they face in understanding Parkinson’s is that it is a problem with the molecules and the ways the moleculres are interacting within the brain.  Trying to study molecules when a person is alive is very, very difficult.  Dr. Caviness explained to us that trying to understand Parkinson’s is like having very short clips from various parts of a movie and then trying to figure out what the whole movie is really about.  It is hard to understand things fully or make conclusions, when you only have small bits and pieces of information.

 

Dr. Caviness personally believes that the real culprit in Parkinson’s is a chemical protein called synuclein.  He explained to us that this particular type of protein is accumulating in the brains of people with Parkinson’s in high levels and concentrations..  These clumps of synuclein that deposit and build up on the brain then interfere with how nerves work in circuits.  This results in abnormal interaction of nuclear protein.  We asked the doctors could something be done to get rid of the protein or prevent it from building up.  Dr. Caviness mentioned there is a real need to somehow get rid of the protein and that he is particularly interested in finding a way to block the synuclein’s ability to form clumps.  This is where we got excited and shared our idea because we would like to develop nanobots capable of entering the brain and identifying the particular protein and then targeting it, breaking it up and destroying the clumps as they start to form, or even to break them up after they have formed.  Dr. Caviness thought this was a very good idea and something that could work very well.  He just cautioned us that we would need to find a way to also protect the good cells and tissues at the same time.

When asked what he thinks about the future of Parkinson’s.  Dr. Caviness shared that he has a lot of optimism and hope.  He is encouraged because there has been so much progress made and so much learned about chemical and molecular processes in Parkinson’s.  Although he shared that he really can’t say and doesn’t know when we will find a cure, etc.  He is very hopeful that in the next 5-15 years that we will make a lot more progress.   Dr. Caviness said in the past the treatment was all just about “masking symptoms”, but now we are really moving towards truly slowing down the progression of Parkinson’s and new drugs are having more and more good results.  He shared there will still be many hurdles but things are really moving forward.

The doctor shared that PD and PSP both affect movement, balance, how you talk, etc., but that they really are quite different diseases, especially in their chemical basis.  Chemicals and proteins involved in PD and PSP are completely different.  PSP involves PAU, which is not at all involved in Parkinson’s.

We asked the doctor if robotics have played any part in the research aimed at discovering the cause or cure for Parkinson’s.  He shared not that he really knew of.  Dr. Caviness shared that with gastrointestinal issues there is a capsule pill people can swallow that kind of works somewhat like a nanobot, but it isn’t truly a nanobot.

We wrapped up our conversation with him, asking him how he sees younger generations, like us, possibly playing a role in unraveling these mysteries and helping this population.  Dr. Caviness was really nice and encouraging.  He told us that younger people like us would be of “tremendous help” because we have new ideas, new computer and technology skills and knowledge.  He shared that they really need young minds, and just how important the ideas of the younger generations will be.  

John N. Caviness, M.D.

Professor of Neurology

Mayo Clinic Phoenix/Scottsdale, AZ

Departments: Neurology and Parkinson's Disease & Movement Center

His clinical practice involves movement disorders, electrophysiology of movement disorders, and interpretation of electroencephalography. His main research interest is cortical function in Parkinson's disease and its role in cognitive deterioration/dementia. He has discovered and characterized small-amplitude myoclonus in Parkinson's disease and established its cortical origin. Caviness described EEG analysis of the mild cognitive impairment state in Parkinson's disease. Also, with colleagues, he has proposed a definition for mild cognitive impairment in Parkinson's disease. Other research interests are:

·         Movement Disorders

·         Myoclonus, particularly the Myoclonus associated with neurodegenerative disease

·         Electrophysiology of Movement Disorders, particularly Myoclonus

·         Huntington's disease

·         Clinical Neurophysiology of electroencephalography

·         Basic Movment Physiology

·         Cellular neurophysiology/neurochemistry

·         Neurochemistry

·         Clinical-Pathological correlation of neurodegenerative disease


http://www.mayoclinic.org/bio/10479244.html

http://mayoresearch.mayo.edu/staff/caviness_jn.cfm

 

Interview with Valerie Carter PT, DPT, NCS

Valerie Carter showed us research video material about Parkinson’s Patient

by LSVT^® Global “Rehabilitative Therapy for People with Parkinson’s”

She also introduced us to Parkinson Wellness Recovery (PWR!) based in Tucson, AZ.

“Exercise is immediately available and can be safely combined with other treatments for potentially additive effects! Several clinical trials in people with PD have shown that exercise plus meds benefits function more than medications alone!”

Exercising on the treadmill is a very important part of

physical therapy for Parkinson’s Disease patients.

They wear a special harness that protects them from falling.

Valerie stressed the importance of daily training to create change in the brain and to increase the production of dopamine. Her patients are encouraged to “exercise with BIG movements”. Patients for example walk in small steps, but they are not aware of it. They believe they walk in big steps. The area in the brain that produces dopamine does not do its job and for the patient it feels normal to walk with small steps. It actually takes a patients thinking they are running or really over exaggerating their movements, for them to actually just walk normal.

Valerie and her team are teaching Parkinson’s patients how to move again. Researches show that the patients that are doing their exercises every day are able to live with reduced symptoms. One woman learned how to throw a scarf. By throwing the scarf she had to make “big” movements. With simple activities the patients receive help. It teaches the patient’s brain to put more effort in everything they are doing. Dopamine helps them to be “big” and have a lot of strenght and movements.

Valerie also showed us a video about a man who walked very poorly, in very small steps. After only 14 exercise sessions, his way of walking improved so much. He worked at the treadmill and made the big movements. This man had Parkinson’s Disease for 16 years. Before therapy with Valerie, he was about to start using a wheel chair. 

When electric sensors are placed on Parkinson’s patients, they are able to produce music with their movements. The bigger the movements, the louder the music will be. This is a project of the Bio-Mechanical Experts at ASU.

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Valerie Carter Associate Clinical Professor NAU and Physical Therapist

Flagstaff Arizona

Valerie Carter PT, DPT, NCS

Valerie graduated from Northern Arizona University with her Bachelors in Physical Therapy in 1989 and with her Doctorate in Physical Therapy in 2002. She is certified by the APTA as a Neuro Specialist and has been teaching Neuroscience / Neuro Rehabilitation Techniques, Aquatics and Pediatrics at NAU in the Department of Physical therapy since 2000. Valerie teaches nationally about evidence based neuroplastic rehabilitation concepts for patients with hemiparesis and completes clinical research with patients who have neurological conditions. She has worked and taught in many different physical therapy settings such as: in-patient and out patient rehabilitation, acute care, skilled nursing, out-patient orthopedic, home health care, pediatric and aquatic rehabilitation. She also works with Parkinson’s Disease patients.


http://www.carterrehab.com/joenval.cfm

 

 

One Hour Telephone Interview with Parkinson’s Specialist Dr. Samanta

Our intended 15 minute interview turned into over an hour interview with a wonderful doctor named Dr. Samanta. We put the doctor on speaker phone and our entire team sat around the table asking Dr. Samanta questions, talking with him and sharing our solution ideas.

Question:
What research have you been involved in that you can share with us?
Response:
Dr. Samanta shared that he has been involved in numerous studies. Many have involved the study of new drugs for Parkinson’s to help reduce symptoms. They work with drug companies to prove if the drugs are working and if they are safe. He helps recruit patients for the studies and monitors how the new drugs are working. There are 3 phases of clinical trials and the drugs most get FDA approval, so it is a process that takes a while. First they study with animals in labs and then on humans.
He also shared that they do lots of studies with graduate students as ASU. Right now they are doing a study looking at alpine poles used for hiking, and studying the use of them for walking by patients with PD. They are studying this to find out if these oles can help them with walking, if it will improve their function, balance, etc.
Dr. Samanta is also involved in part of a group that participates in a big brain bank. When somebody dies who has Parkinson’s and they donate their brain to the brain bank. Researchers study the brain very closely under miscroscope to learn all they can and to make correlations, etc. They look at the brain and the symptoms they had when alive, to make connections and learn about the disease. It helps them put things together and everyone involve brings all the information and puts it together, so they all can learn.

Question:
Why do you think it is so hard to find the cause and cure for Parkinson’s? What challenges are researchers faced with when trying to understand this disease?
Response:
PD is a really slow condition that progresses slowly. The disease is active long before we know people have it. It is really hard to connect the dots because of how sneaky PD is. Trying to figure out if it is from pesticides, herbicides, etc., is tough when the people were exposed 15-30 years ago and we have no real information and history of even which types of chemicals they were exposed to. There are environmental and genetic factors that play into it.
During our conversation the possibility came up that they are thinking that some people might not have as good of a ‘clean up system’ as others have, which might result in extra collection and deposits of protein they are finding on the brains of people who have passed away that they are researching. They are also thinking that stress contributes in some way and might interfere with the process of discarding build-up, etc.

Question:
What do you think the future solutions might include?
Response:
Stem cells are an exciting area. If we can replace cells with new ones we might be able to find a solution. Also, gene therapy may provide a hopeful solution. This is when you take a virus, kill it and have the shell and a little DNA that can make more of itself. Then you replace with DNA that makes neurotransmitter or growth factor. There have been a few small studies done on people with Parkinson’s., but only 10 people in the entire world have had it done. This research is currently in phase 1 of a pilot study/clinical trials. We have much research to do, as we don’t know if it can work for everyone, who it won’t work for, if not..why, etc.

Question:
How are Parkinson’s & PSP similar? How are they different?
Response:
PSP is really rare. It looks like Parkinson’s and they are similar in some ways, but with PSP you don’t have tremors, but they do have worse balance. Also, medications don’t work as well with PSP and they don’t get better with Parkinson’s medicine.
Dr. Samanta shared with Cori and all the kids that it is important for her to know that people with PSP are really in there. They know what’s going on and they are very sharp inside their mind. It is just their body that is going, but there mind is very intact. He thought it was important Cori know that about her grandpa and how important her interactions are with him.

Question:
What treatments do you feel are most effective now? What is your experience with deep brain stimulation?
Response:
The most effective and oldest treatment today is Leva-Dopa. This medication has an amino acid that brain cells can use and turn into dopamine. There are also lots of other drugs used that the brain responds to as if it were dopamine.
We were one of the first centers to start doing deep brain stimulation. Deep brain stimulation is like a pace maker for the brain. Electrodes are placed in circuit point and run currents through there.

Question:
Have robotics played any part in research aimed at discovering the cause or cure for Parkinson’s?
Response:
Dr. Samanta paused a bit here and said hmmmm. Robotics…well I don’t think they have ever been applied in any way yet with a possible cure. However, a lot of research equipment that is used to look for a cure involves robotics. This type of research requires precise measurements to study different levels of enzymes, proteins,etc. The precision of robotics is valuable for such studies. Another area that might come into play is auto ambulators. These are like robotic legs. They can work partly off the persons own muscle responses. There is the ability to possibly help train the brain and body to take bigger steps, help with balance, etc. Right now a big area that needs addressing is balance, especially with something like PSP where balance is especially an issue.

Question:
Do you have any thoughts about future bio-medical applications of robotics in the research or treatment of PD or PSP?
Response:
There is a lot of research looking into developing robotic applications to help with brain surgery. Robotic applications offer super precision. This ability to be super precise, will help us find very specific targets in the brain and help us be in the exact place we want to be in or put something in. It will also reduce mistakes, errors and complications. Dr. Samanta agreed that in future years we will see a lot more use of robotics in the research and treatment of Parkinson’s. He expressed that we are getting into an era where nanobots technology is growing.
We had the opportunity to share our solution ideas with Dr. Samanta and he really liked them. He was impressed with our ideas and agreed that they could actually be very useful in the future treatment of Parkinson’s. We had no idea just how realistic our solutions actually were. He added his ideas about how useful our nanobot idea could be also in the area of implanting stem cells because the nanobots could have the important job of making sure the cells weren’t growing too fast or not growing in a bad way. Like our team has talked about in the past, he shared that nanobots would offer the advantage of being able to deliver very specialized medicine.
We ended our conversation by expressing our appreciation to Dr. Samanta for all the time he gave us and all he shared with us. Dr. Samanta ended the conversation by wishing us luck on our project and he requested that we let him know how it goes.

Interview with Johan Samanta, M.D., P.C.

~Phone Interview with Johan Samanta, M.D., P.C.~

During the phone interview with Dr. Samanta

 

 We enjoyed talking to him and we learned a lot more about research on Parkinson’s Disease, the cause and cure, challenges and obstacles that researchers are facing, most effective treatments and thoughts on bio-medical applications of robots in the research or treatment  of Parkinson’s and PSP.

Johan Samanta, M.D., P.C.

Phoenix Arizona

Board certified in Neurology with specialized training in Parkinson's 

and Movement Disorders Clinical Associate Professor,

Neurology - University of Arizona College of Medicine

http://www.mdsdocs.com/jsamanta.htm

 
 

Interview with Laureen, Aiko and Linda

~Interview with Laureen, Aiko and Linda~

All three ladies are living with Parkinson’s Disease

We had the honor to meet three lovely ladies who are diagnosed

with Parkinson’s Disease for about 8 to 16 years.

Their personal stories are very touching and

we learned how they master their daily life with the disease. 

 

We also shared some great lunch and happy conversations with Linda, Aiko and Laureen. They love to be treated like “normal” people and love when people smile at them. One lady shared that she has two dogs which support her in her daily life. 

We learned a lot more about Parkinson’s disease from them and how it affected their lives.  They shared information about their various treatments and their challenges. 

We really appreciated how they all focused on what they are still able to do, and not on what they were no longer able to do. 

They all shared their hope that someday the medical field would not see them as a “disease”, but instead as “people with a disease”.  Each of the speakers shared how the disease has helped them to really appreciate the little things in life. They all lit up and got really excited about our teams idea to create robots that could help them with daily living skills and to assist them with movement and protect from common falls.  We are thankful that they took the time to be with us.

Linda and her husband joined us during one of our group meetings.

Linda is part of the Northern Arizona Parkinson’s Disease Support Group.

Laureen and Linda came to support us at the First Lego League Regional in Flagstaff.