An evening of Hope

Research begins with the patient, not in the lab

Professor Tamir Ben-Hur

25 people packed into my family room on Monday night to hear Professor Tamir Ben-Hur, the Israel S.Wechsler Chair in Neurology at  Hadassah Hebrew University Medical Center in Jerusalem, speak about the future of Parkinson’s research.  The one word we kept hearing throughout his presentation was “Hope.”  The standing room crowd listened intently to his presentation, hoping to hear those magic words:  we have found a cure for Parkinson’s.  But we all know the reality of our situation, and the best we can hope for now is an improvement in our lives with PD.

Prof Ben-Hur spoke about 3 key points.  First, he spoke about treatments being developed for PD.  One is using stem cells for treatment of Parkinson’s Disease.  Animal models have shown some success with stem cells generating dopamine neurons and movement functions improved.  Unfortunately, the implanted stem cells did not survive very well in humans.  It has taken 10 years to develop an improved method to generate stem cells and implant them and trials in humans will begin soon.   There is an international multi-center effort to find a way to do the tranplant successfully.  It is most likely that they will recruit patients who have movement symptoms. The downside is that side effects  may include increased diskinesias.

He spoke about the direction of DBS (deep brain stimulation) research.  DBS is the most important therapeutic option today. The most difficult thing is finding the exact spot in the brain to place the electrode.  The process he described was amazing.  If the surgeon misses by a mm, the emotional part of the brain can be affected with terrible side effects.  Prof Ben Hur is very excited about the next generation of DBS.  Researchers are looking at a Closed Loop system for DBS.  Brain activity can be read by the system.  When pathological activity is identified, the stimulator will be activitated to correct the symptoms.  It has been shown to work in animal models and is now in development for human patients.  Prof Ben Hur says that this should be available in a few years.

Second, he spoke about what we can do to prevent the disease.  We need to develop a means of early diagnosis to stop the disease early.  In PD, when pathological symptoms occurs, approximately 50% of the neurons have already died off.  Several areas being investigated are:

A blood test – when the brain cells die, some of the DNA shows up in the blood.  There are specific fingerprints that tell us where the  DNA came from in the body.  The technological challenge is to identify such small amounts of DNA.  The hope is that the general population can eventually be screened for an accelerated death of dopamine neurons in the brain, well before clinical symptoms appear.

Another blood test being developed looks for alpha-synuclein aggregation, which may come from the gut nervous system before it moves to the brain, causing constipation.  It may begin as a systemic disease for some people, not in the brain.

Use of a new MRI process, a hyperpolarizer, that shows the metabolic activity of dopamine in the brain.  This has wide ranging implications for PD and for psychiatric disorders.

Finally, he talked the future.  He spoke about using simple solutions that are widely available, not expensive and have no side effects.  One is using powerful anti-oxidants that can cross the blood-brain barrier to reach the brain cells.  Punicic Acid from Pomegranites is one anti-oxidant that is being investigated with positive results.  It is being developed as a food additive, so that it does not need the expense of going through the FDA to get approval.  This should be available very soon.

The final frontier for neurologic diseases is to use bio-markers to predict how the disease will behave and how it will respond to medication.  Treatment can be individualized and specific to the patient.  This also has implications for pharmaceutical research.  Bio-markers can be used to  create clinical studies using a smaller well-defined group of patients for a shorter time period, therefore decreasing dramatically the expense and time-frame for developing effective drugs for approval by the FDA.

Professor Ben-Hur ended his talk with just one word:  Hope

There is Hope for the future in Parkinson’s research and treatment.  As Prof Ben-Hur said, he thinks this will occur during his lifetime – and ours.  Let’s hope he is right.

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Even my dog was entranced by the presentation!

 

Looking Forward to 2016

The cures we want aren’t going to fall from the sky. We have to get ladders and climb up and get them.

— Michael J. Fox

As 2015 comes to a close, those of us in the Parkinson’s community are excited about the many new  research discoveries regarding the causes and treatments for Parkinson’s Disease.  It seems that every week in the past few months, another discovery, whether it is a drug or therapy,  has shown to be effective in either slowing the progression of the disease or in some cases, even reversing it.  In the 7 years since I was diagnosed, I have never been so hopeful that maybe this year will bring the big breakthrough.

This is exciting news, especially since some of those drugs that show a positive effect in PD patients have already been approved for other diseases, thus reducing the time for FDA approval for persons with Parkinson’s.  Even salicylic acid, the main ingredient in aspirin, which we all have in our medicine cabinets, has proven to be effective for reducing the cell-death that leads to Parkinson’s.  Today there was even more good news.  Researchers at Scripps Clinic and Scripps Research Institute in San Diego are beginning trials on humans using stem-cells taken from the patient’s own skin.  Watch this video on KUSI News  Once the pilot project is approved by the FDA, the clinical trials should open up to multi-national research centers.  Researchers expect this to be a long term treatment for the movement disorders associated with PD.    FDA approval could be made in the next 24-36 months.

For me, 2015 brought about many changes.  My second grandchild was born in May, followed two weeks later by the passing of my mother.  It was a very tumultuous, emotional time for me.  I began writing shortly before my mother’s death, which eventually led to this blog.  This was one of the things that helped me to get through that very difficult time.  Thank you to all of my followers around the world.  It has been a very gratifying experience to share my “adventures with Parkinson’s” with all of you, making new friends because of our common bond.  I have almost 100 followers, so if you have not yet followed “Twitchy Woman” either here or on Facebook, please follow now so that we can get to 100 by December 31.

So looking forward to 2016:

A cure, perhaps?  Or at least a treatment that reverses the progression of PD.  Michael J. Fox said that the Michael J Fox Foundation has one mission – to find a cure – and once that cure is found, he will shut down his Foundation.  Let’s hope that 2016 is the year that he will close up shop.

For me, I plan to continue writing, enjoying this new-found creative outlet that I discovered after PD diagnosis.   Maybe I will end up like every other Parkinson’s patient with a blog and write a book.  OK, maybe a pamphlet.

Speaking of books, I hope to review a few more in the coming months, including the just published “Goodbye Parkinson’s, Hello Life!” by Alex Kerten, whose Gyro-Kinetics Center in Herzliya, Israel is a leader worldwide in treating clients with Parkinson’s and other movement disorders.  I have just started reading this and want to try some of his exercises for relieving PD symptoms.  Stay tuned.

I have become a PD Advocate for the Parkinson’s Disease Foundation after having spent a wonderful weekend with 25 other women with PD at the PDF’s Women & Parkinson’s Initiative conference last September.   I am looking forward to engaging with other women with PD living in Los Angeles.   On January 17, I will be hosting a meeting for women with PD to learn about the Women & Parkinson’s Initiative and to hear from a local PDF Research Advocate about getting involved in clinical research for PD.   If you are interested in this or future events for Women & PD in LA, please contact me directly.

IMG_0387I will continue to work on my boxing skills with Rock Steady Boxing NY/LA.  It is very hard work and great exercise.  Boxing has improved my balance and reflexes, and most importantly, my tennis game.   Besides, the men way outnumber the women in boxing classes, which makes it even more fun.  (Just don’t tell my husband).

Ommmmmmmmmmm……..yoga is the one calming activity that I regularly participate in.    It keeps me aware of my body, my balance and stretches my muscles.  I can still do a tree pose successfully most days, no worse than the others in the classes I attend.   Shavasana, Corpse Pose, at the end is better than a nap.  When I am done with class I am ready to take on the day.

Finally, I am looking forward to a year of new adventures with my husband, and not allowing Parkinson’s to take charge of me.  I will be in charge of my Parkinson’s and continue to enjoy life with my family and friends.

Wishing all of you a happy holiday and wonderful, healthy New Year.

Sharon

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