International Stroke conference in Los Angeles

I had the pleasure to attend a luncheon presentation at the International Stroke conference in Los Angeles last week. There were over 4000 international scientists and healthcare professionals in attendance – the conference, not the luncheon. This is the venue where new papers are presented and new ideas are exchanged each year.

The panel discussion was led by Nancy Brown, the CEO of the Heart Association. She introduced Dr.  Mary Ann Bauman who works with the Association, Dr. Jeremy Payne, Neurologist and head of the Banner system in AZ and Dr. Ralph Sacco, Neurosurgeon.

The panel was narrated by Bri Winkler, a stroke survivor who works as a spokesperson for the Association. Bri is a young woman who suffered a stroke a few years ago and has recovered fully. She is among the lucky 10% who show little in the way of outward signs of the damage that a stroke can do. While Bri is indicative of the lack of age discrimination with Strokes, she is not representative of the 65% of stroke survivors who, while not requiring institutionalization, display deficits that stop them from returning to their former lives. While terrific to put a young face to stroke, I think that featuring someone who is working with the deficits a stroke can bring would bring home the devastation and the urgency of the needs, better than what is being done now.

It was interesting to hear the association express the thought that they want to reposition the programs toward brain health, healthy aging and cognitive health. We do think that it would be a more convincing argument  and a stronger case to be made for increased brain research, if the Association presented people who are affected by the changes in the brain that occur with stroke. It becomes evident, very quickly, of the need for research dollars and for the innovation of scientists and healthcare providers to analyze the brain, brain functions, neuroplasticity …the list goes on.

While stroke prevention is very similar in risk factors like heart health, the outcomes are significantly different. Heart attack victims get well, stroke survivors only get better. The Association could be stronger if it recognized this difference and build upon it. 

Happy New Year

We are starting off 2016 with an increasing effort to gain support to make sure those who have neurological problems confronting them daily have access to treatment and therapies designed to help each and everyone achieve the most vital and fulfilling life they can. 

As we open our doors to those with Parkinson’s and Multiple Sclerosis, we feel that we are barely scratching the surface of need. As the year goes on, we will continue to add services and treatments to make sure that each of you has the best chances available to regain control over your lives.

We met with Eric Barr last week and want to share his story with you. Eric was a professor in Theater at the University of CA Riverside. He suffered a number of strokes and is now working hard on his recovery. He and his wife have put together a short three-act play that shares his experience and his recovery to date. Eric further shares his experiences podcasting @ http://apieceofmymind.net/index.html

Eric will be coming over here to meet with our groups but for those of you outside the area, do follow his podcasts and follow his website: http://apieceofmymind.net

For any of you who did not get our newsletter, it is available on-line or you may email us and we will send you an electronic or a hard copy – your choice.

Happy New Year and let’s work together to make this the best year ever. 

 Care That Treats the Whole Person, 

Rather than an Ailment

NeuroVitalityCenter Programs to Expand by Yearend

Neuro Vitality – Brain Fitness – Neurological Health –

Many of the disorders involving the brain are idiopathic meaning that we do not know their exact cause but, on the other hand, we do know that many will respond positively to therapies - drug therapies, physical therapies and behavioral/emotional therapies.  Chronic problems come with their own set of issues and encompass one’s whole life affecting not only physical but the emotional and behavioral parts of one’s life. Learning more can help both the sufferer and the loved one who is helping to understand the challenges that are being faced, the methodologies that can help in day to day living and regain some control over their lives. 

At NVC we have seen that treatment of the whole person is key to hope and encouragement in dealing with disability and disorders. Different people respond better to different types of programs and activities. Therapies should be based on the individual as opposed to so many treatments that are based only on the disease or disorder.  And more, in many cases it is excellent to have a loved one participate along side. A good example of this is speech therapies for those who are having volume problems due to Parkinson’s. Understanding and working together, the patient and the loved one can make both of their lives better.

As we move toward our expansion, we will offer a full spectrum of programs and classes to assist those who seek help to better their lives. We will combine the physical and the behavioral programs with education and support to help each of you maintain the maximal wellness you can. In the next months we will be issuing our programs announcements – keep checking back with the web site to find the perfect membership fit for you.

www.neurovitalitycenter.org

Big Picture Progress: Solid and Gradual

Summer Fare:  Benefit extensions for stroke, Telemedicine rehabilitation, and NVC widens the tent 

Reporting in from the western regional task force meeting of the American Stroke Association there are a couple of lights at the end of the tunnel that are worth keeping our eyes on. As we well know after 36 years of providing long term rehabilitation, you can and will show improvement if you keep working at it no matter how long it has been since your last stroke. Practice, repetition and the will to keep trying along with the support that helps you to greet every new day as an opportunity makes all the difference. The group brought a revised time line from the investigating stroke physicians not stating that improvement can be documented for the first five months following a stroke. This extends the time from the earlier three months time frame. While we still do not agree with this, it may pave the way for some extension of benefits which will help all survivors and their families get more and better treatment.

The second item of interest was the report of the trials for telemedicine rehabilitation that are taking place at University of California Irvine. This is a computer based system that can be placed in the home and the patient can use it to encourage use of the limbs. This program could impact numbers of those unable to travel or without access to programs like what exist here in Palm Springs. We will be watching this very carefully to see if it is something that we can build on to help those who fall outside the easily driveable radius to partake in person at our facility.

Keep your eye on the web site for the new programs for Multiple Sclerosis and for Parkinson’s. We have a support group meeting here for Parkinson's and for caregiver’s of people with Parkinson's every Tuesday. We hope to continue that into the fall and will be introducing a menu of programs and services to help those who need extra rehabilitation.

Enjoy the summer – keep cool and remember to hydrate. 

Summer Heating Up at NVC!

June is the start of the summer season here in the desert – we replant our flowers, we overseed our lawns, we put away our long pants, and crank up the air conditioning. Summer is also a time that we do our planning of our programs and our events for the coming season and this year we have so many new things to do, our summer is going to be very busy.

Starting June 1^st we will be hosting group programs for Parkinson’s Disease sufferers and their families every Tuesday at 3:00PM. There will be educational sessions along with counseling and caregiver support programs throughout the summer. We feel this is an important component to care and are pleased to be able to offer this for the summer months.

Additionally, we hope to be able to offer a special speaker and luncheon during the summer months for those who are seeking help for Multiple Sclerosis. We will be working with the National MS Society on this program and promote this to MS sufferers and their families.

The Neuro Vitality Center is an active and busy place in the summer months and this year, as we welcome those who suffer from associated neurological disorders, we open our doors to each of you who may benefit from our services.

Watch the web site for new programs, for new events, for changes that will only make the Center a better place to be………..remember what Margaret Mead said:

"Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has."

The Truth About Stroke

May is Stroke Awareness Month. Most of you who are reading this blog don’t need a month to be aware of strokes – you likely are living with it every month of the year.

However, here are some stroke facts that you may not know or have forgotten and some of myths that should be forgotten:

MYTH	FACT
MYTH: Stroke cannot be prevented.	FACT: Up to 80 percent of strokes are preventable.
MYTH: There is no treatment for stroke.	FACT: At any sign of stroke call 9-1-1- immediately. Treatment may be available.
MYTH: Stroke only affects the elderly.	FACT: Stroke can happen to anyone at any time.
MYTH: Stroke happens in the heart.	FACT: Stroke is a "brain attack".
MYTH: Stroke recovery only happens for the first few months after a stroke.	FACT: Stroke recovery is a lifelong process.
MYTH: Strokes are rare.	FACT: There are nearly 7 million stroke survivors in the U.S. Stroke is the 5th leading cause of death in the U.S.
MYTH: Strokes are not hereditary.	FACT: Family history of stroke increases your chance for stroke.
MYTH: If stroke symptoms go away, you don’t have to see a doctor.	FACT: Temporary stroke symptoms are called transient ischemic attacks (TIA). They are warning signs prior to actual stroke and need to be taken seriously.

Treatment and rehabilitation for stroke are getting better each year but always remember speed is critical. At the first symptoms of a stroke or recurring stroke CALL 9-1-1 immediately and get to an emergency room. 

A Penny of Prevention.....

As we move forward at the Neuro Vitality Center with expansion of health services to enwrap other neurological disorders into the chronic care model that we have found to be effective for Stroke and TBI survivors, we continue to see the same long term rehabilitation issues confronting those who suffer similar problems (Multiple Sclerosis and Parkinson’s Disease) that we have seen for so many years with our Stroke and TBI patients. At the heart of the problem is a healthcare system that focuses on episodic care to the detriment of long term or longitudinal care for chronic conditions – care that takes place over the entire life of the disease or the disorder as opposed to treating each disease as an episode of care.

In a recent Wonkblog article, “The two most important numbers in American healthcare” by Ezra Klein, The Washington Post quantified the financial burden the problem puts on the nation as a whole. From the starting point that 5% of people account for 50% of healthcare spending, he extrapolates that, since healthcare accounts for 20% of our economy, 15 million Americans are consuming 1/10^th of our GDP (Gross Domestic Product) – almost $1.5 trillion. The conclusion, he states is simple – we have to help that 5%. However, not only is that 5% a difficult population to serve, the assumption made in the United States is that we need more costly or better medical care to best serve episodic and chronic conditions   instead of social services that are more prevalent in other developed countries.

A study by Yale School of Public Health, professor Elizabeth H. Bradley, PhD, looked at health outcomes internationally ( OECD – Organization for Economic Cooperation and Development –countries) only to show the United States is far behind in social service spending while total health expenditures exceed most of the 18 other OECD countries. This spending pattern does not translate to better outcomes in the United States.

We see the benefit of social service therapeutic programs every day at our community-based Neuro Vitality Center, not only in positive outcomes but in the saving of dollars spent on expensive clinical services in expensive clinical settings, and yet we struggle to find the dollars to keep the Center going. Please take these thoughts to the ballot box – together we can make change happen.