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06/28/11

Permalink 03:51:00 pm, by eleanor Email , 788 words   English (US) latin1
Categories: thoughts, The Law, Advocacy, Technology

COMPLEX CHRONIC DISEASES AND BASIC RESEARCH

Parkinson's Disease is one of the complex chronic debilitating neurological diseases that will greatly benefit from basic research.  It affects 500,000 people in the U.S. and is second only to Alzheimer's. World wide it is estimated 6.3 million people have the disease. It is caused by a loss of dopamine-producing brain cells. It usually affects people over 60 but does affect those younger in their 40's. The 4 major problems are: tremor, rigidity, slow movement and impaired balance and co-ordination. For more information:

http://www.pdamerica.org/forms/sign/save-one-trillion-dollars-in-ten
 

This is not a new disease but one that has been recorded in various medical practices since 5000 BC. In modern times it was formally recognized by James Parkinson's as "Shaking Palsy" in 1817 .   http://viartis.net/parkinsons.disease/history.htm

All this time it was only thought of as a terminal disease with no effective treatment.

    But in the 1940's and 50's neurosurgeons began surgery on the basal ganglia of the brain. There was some improvements in some patients, but it was risky.

However in the 1960's researchers in Parkinson's disease were able to compare the brains of those with Parkinson's and controls. Importantly the researchers discovered that the brain chemical Dopamine that allows for smooth co-ordinated movement was much lower than the controls  in the brains of Parkinson's patients.

This basic research led to drug trials of Levodopa in 1961 and 1962.

And finally the big breakthrough for Parkinson's patients "Levodopa Pills" were available for patient's treatment in 1968. Many people with Parkinson's Disease could now lead almost normal lives. 

When I graduated from college in 1957 as a Physical Therapist I thought I would be working mostly with polio patients. But when the polio vaccine which prevented polio was discovered  I became aware my patient load would be changing.  And it was.  MD's were now increasing their referrals to Physical Therapists and other rehab specialties for rehabbing their patients with Parkinson's Disease.

I had patient's with Parkinson's disease that were extremely advanced, moderately advanced and those with initial symptoms. Prior to the use of the levodopa pills the patients I saw were mostly extremely advanced. Many had contractures, most were wheelchair or bedridden and unable to communicate even with facial expression. I saw them in Chronic Disease Hospitals and in Home Care then in Rehab centers. I noticed the exciting change in my patients who were put on Levodopa Pills.

Unfortunately it was not a cure but a symptom reliever as progression in Parkinson patients continued. It also had some very unpleasant side effects.  Parkinson's can be a devastating disease. I found that it robs the person not only the ability to mobilize oneself or speak but the rigidity also involves the facial expressions so communication was just so difficult and was lost as the disease progressed.

  But over time basic research has continued.  And it has been very beneficial to people with Parkinson's disease. The first new drug following Levadopa  was Sinemet.  It was developed in the 1970's to help with the negative side affects of the drug Levadopa. This drug Sinemet was improved over time and received FDA approval in 1991. Then over time as patients progressed there have been newer drugs developed to ward off the devastating symptoms of the disease itself.  These drugs are  Mirapex, Requip, drugs known as COMT inhibitors, and  Comtan and Tasmar. They have even gone back to Surgery. The surgery is known as deep brain stimulation and is much safer than the earlier surgeries. Neurosurgeons now implant an electrode into the brain to stop many of the Parkinson's symptoms.

This has made the amazing difference  in allowing people with Parkinson's Disease to lead productive lives for a longer period of time.

This is why continued basic research is so vital in complex chronic progressive diseases. As research continues the knowledge grows and on the way to finding a cure drugs or procedures to help control symptoms are found.  And lets be honest the only way cures will be found will be to truly understand all the small ramifications of the central nervous system.This is where basic research is vital. I talk about how research is done in the US in a previous article.Dollars allocated to different kinds of research in USA

A week or so ago I read an excellent informative article on the current state of care for Parkinson's disease in the New York Times. The article including videos of people explaining how the disease affected their lives. http://www.nytimes.com/2010/08/24/health/24first.html

  I'm so afraid in this period of time where we're concerned about budgets that we'll forget the importance of continuing on with this basic research. Research that is needed before one can get to the point where a surgical procedure or a drug can be developed to alleviate all these devastating symptoms for these people and finally ....  A Cure !!!!

ellie

06/08/11

Permalink 06:39:00 pm, by eleanor Email , 241 words   English (US) latin1
Categories: thoughts, The Law, Advocacy

CARE OF THE DEVELOPMENTALLY DISABLED

A Failure to Protect

In the 1970s New York State finally emptied its scandalous warehouses for the developmentally disabled.  They replaced them with a network of small group homes.  I myself had experience with these homes in the 1990's. I was a Physical Therapy Consultant for a sheltered workshop. Most of my clients lived in these group homes. I had visited these homes and felt such a sense of relief that they weren't in a poorly run developmental center. Their lives seem to be so much better.  So it was with shock that I read in the N.Y. Times of the scandalous care that they are receiving in many of these homes across New York State. See article -http://www.nytimes.com/2011/03/13/nyregion/13homes.html

And then recently reading again in the NY Times the latest scandal at O'D Heck just made me cry. http://www.nytimes.com/2011/06/06/nyregion/boys-death-highlights-crisis-in-homes-for-disabled.html?pagewanted=1&_r=2&hp

What kind of people would treat people who have disabilities in this manner? And what kind of society would employ and allow this treatment of its disabled clients.  Why is there no training of the employees?  Why is there no standards of care? Why are these people not held accountable for their actions?  And why are they then rehired in a different place in the system?

The above video is heart wrenching and so is the video "Witness To Abuse" in the above NY Times article. Hopefully the disclosure by the reporter Danny Hakim of the N.Y.Times something will be done.

                                                           ellie

05/25/11

Permalink 03:45:00 pm, by eleanor Email , 1191 words   English (US) latin1
Categories: thoughts, Coping, Advocacy, adapting activities, Technology

AGING WITH A DISABILITY AND THE USE OF TECHNOLOGY

Technology and it's use is changing rapidly.  In many ways it means changing the way we do things. But to use it well it requires us to learn, experiment and think about what's the best use of technology for ourselves.

For example cell phones use is almost universal and a lot of young people are only using cell phones.  I myself was late to use a cell phone as I'm home most of the time. But when I realized the safety factor for older people and those with disabilities I bought one.  I also hesitated about spending money for a Kindle. Yet I recognized it's value to me when my son 's gave me one for Christmas. It's non- reflective surface, lightness and my ability to increase the type size made it a winner for me. I was kicking myself for not asking for one sooner. I also use an MP3 player when I'm outside working in my garden and when inside I attach it to speakers in my bathroom. 

Another area that technology has made a big difference in my life has been with mobility. We now have a large variety of lighter weight walkers, canes and wheelchairs. Once I experienced my own changing needs I was doubly aware of the necessity of the variety needed to meet each disabled person's specific needs. I've used a cane,loftstand crutch, walker, manual and electric wheelchair as needed over my many years with this disease.

Another very big change over the years is the way we get our news and communicate. That all started with the increased use of smaller computers with increasing speed in our homes. The use of the Internet for news and information has expanded to social programs like Facebook, Youtube and Twitter for example. And of course e-mail and skype both for business transactions and personal use.

But learning to use this wonderful new technology is also time consuming and can be frustrating as well as expensive. And when you're older it's just harder to learn new things. For those of us where cognitive loss and fatigue is part of our disability problem that makes it doubly difficult.

Yet people with disabilities have the same needs for social interaction as everyone else. However with aging they can be can be even more isolated and social action more limited. Therefore all these social sources through the internet can be so helpful. And lets not forget e-mail.

The use of this technology is like rolling off a log for young people. But for the older generation with disabilities it's a bit of a stretch. Yet an acquaintance of mine who is in his 90's and has medical problems writes the most wonderful monthly blog on nature.   Being a long lover of nature this Biology Professor uses his knowledge with great perceptive writing skills to describe what's happening "out there" every month. He inspires me to say I know we all can do it.   http://dwcrockerblog.blogspot.com/

I myself started my own blog because my son's encouraged me to blog and to share my perspective after having worked for years with MS patients as a Physical Therapist. And once I started I wanted to advocate for people with all disabilities by discussing issues and adding my viewpoint.

I am also on Facebook as my nieces asked me to join.  Now I don't get onto it as much as I should and I  mostly have just kept my friends as my family.  I kind of pop on and and see what all my sister's and brother's children are doing and keep in touch that way. I also post things that are interesting in my life too. Another niece helped me put my blog on my Facebook page.     http://www.facebook.com/profile.php?id=1208270945&v=box_3

I get e-mails and newsletters from various organizations I support on-line. A few weeks ago I received e-mails that MS Awareness week was coming up. So I went on to their site  I thought they had a very interesting promotion on a subject which I had written about in my prior blog. They used the term MS=  then you could put in what MS  meant to you. So I decided I would do this but in order to do this I had to join Twitter.

My son Sean was handy so he helped walk me through the process of joining Twitter.  And I wrote what MS= equals to me.  See my prior blog on this March 16th 2011 blog entry:  MS AWARENESS WEEK 2011  But then I decided I would like to put my picture with my comments as this is what most other people had done. However in order  to do this I had to go through Flicker. So I tried to get myself a "Flickr" account. But I found out that I could only get a Flickr account if I got a Yahoo Account first.

Luckily my son was still there as I was getting ready to flake out. But after a little trial and error I had a Yahoo account and a Flickr Account as well as a Twitter account. And I was able to put my picture with my message on their revolving screen which I had wanted to do.

  But now I'm moaning "  what do I do with this flickr account, yahoo account and twitter account." But my son said, "a twitter account could be a very good thing for you mom.  You're always saving articles that you see and want to write a blog around.  But you don't always get the time to write about it.  Now that your on twitter you can tweet articles on disability etc. And you could let people who read your blog know that they should check your twitter too."    See http://twitter.com/#!/elliesblogforMS      

So do check my twitter page as I will try to tweet all the different issues that I read and think of daily that mostly relate to MS and Disability.

You know I do all this from my home based computer.  Facebook ,my blog, twitter etc. I don't use any of the portable devices. They are expensive and I don't really need them.

I also use my computer for many other things too. In fact my life is in many  on my computer. It helps me organize my life. It saves me time by keeping everything I need in one place.

But I had to spend time and energy learning how to best use it effectively for me.  And I am very grateful to my sons who have been extremely helpful. If you think some of the new technology might be helpful to you but know you won't be able to get started by yourself on it or have questions. Do ask someone to help you. And distance doesn't matter. I have both friends and family who are doing this long distance by using:   GoToAssist http://www.gotoassist.com/en_US/entry.tmpl  

  In my next blog I plan to go over my own computer and show how it enables me to do what I want to do.  

As you only live once make it as full a life as you can by letting technology help where it's appropriate for you!!!                                ellie

Permalink 03:43:00 pm, by eleanor Email , 1018 words   English (US) latin1
Categories: thoughts, The Law, Coping, Advocacy, adapting activities

RESEARCH AND ACCESSIBILITY FOR PEOPLE WITH DISABILITIES

Three events happened this past month while I was chasing down and eliminating spam on my blog . The first was a book I read :"Curing MS " by a renowned Neurologist Howard L.Weiner. The second was the death of Max Starkloff who was a pioneer in Independent living for the Disabled. The third was the shooting attacks in Tucson Arizona. Each one of these could be a blog in itself. I still intend to discuss MS research and Dr. Weiner's book on my MS blog.  And I also do intend to discuss the remarkable life of Max Starkloff and the impact that he had on  people who have disabilities in this country on my Disability blog.

But the event in Tucson and then the stabilizing of Rep. Gifford's condition diverted my attention. I followed her progress intensely on TV, internet and newspapers. And I was thrilled to see her be allowed to move to a more intensive rehabilitation center.

As I returned to think about what my next blog would be it was obvious to me. These two blogs I was going to write both related to the current and the future progress of Representative Gifford.

The first book by Dr. Weiner was about research to find a cure for MS. But in a generic sense it is about the invaluable role for unhindered basic research into diseases. Unless we do basic research into understanding how the body functions and how it's affected by certain conditions there will never be cures. And without this research we will not gain the knowledge to advance our understanding of the condition  And without that the small gains thru many sources that help people to live with their conditions will be lost.

Rehabilitation of our motor system  for moving our body parts etc. has always been a focus of rehabilitation. But today luckily for Representative Gifford research into understanding the structure of the brain in depth has been ongoing for a good many years now. Thanks to modern technology and our research there is an exciting increase in our knowledge of the brain with it's complex system of neurons and the chemical and biological components that help the electrical messages go to where they are supposed to. 

So now we can fully include cognition, speech, visualization and all else that is essential to a well functioning human to the rehab program. Also very importantly researchers have learned just how much plasticity there is in our brain and research is ongoing to know how to maximize intervention to take advantage of that.

The United States is the world's leader in health research. So where and how does this occur is a question I asked myself. My research showed me the following (Click here for my source.):

With public funds 28 % of this research is done by the Federal government through the NIH, and other departments in government.  And there is some contribution (4%) from  State and local governments.NIH mission

The National Institute of Health (NIH) is the steward of biomedical and behavioral research for the nation.  This Institute started in 1887 within the Marine Hospital Service in a one room laboratory.  Since that time it has grown and developed as needed by the continuous discoveries of important scientific knowledge opening the doors to positive information affecting our health.

Today there are 27 NIH institute's under the Director of the Central Office of the NIH.  These institutes allow for in-depth research on all of the conditions that affect our citizens like the National Cancer Institute.  These Institutes have been developed as the need arose for more in depth understanding of certain diseases and conditions.  The National Institute of Neurological Disorders in Brain and Stroke  was established in 1950 . Thanks to the ongoing research in this Institute both basic and clinical         image                                                                                                                                our knowledge of the brain and nervous system has grown and is reaping great benefits for many people like Representative Gifford.  For more information on the role of the NIH click on the following link:http://www.nih.gov/index.html 

Research that uses private funds (for-profit organizations) include  54.1% from Industry which comprises mostly the : Pharmaceutical, Biotechnology and Medical Devices Industries. Investment in research and the conduct of the health research by Industries is driven by the aims of (1) generating profits and (2)  improving health conditions within the framework of creating profits. These Industries have undoubtedly made major contributions to the health of people in America and in the world. However the drugs and devices that they decide to develop are  dependent upon the analysis of profit making for the company.

Also private funds would include 3% from non-profit foundations / charities, medical research organizations, disease focused organizations and universities and colleges. These private funds many times are directed to fill a gap in a health problem needing attention.  We all may have been a  part of these private funds when we participated in various Runs, Walks, and other events for our favorite charities.

The other the area I feel is relevant to Rep. Gifford is the environment in which she will be returning to. This includes both thru her long recovery and when she has reached her full recovery. Thanks to all the people who have fought for those with disabilities to have more equal opportunity over the years her life will be so much better and easier. Thanks to our government for passing legislation like the ADA etc. And we must never forget what people like the late Max Starkloff  did for enriching the lives of those with disabilities. image

Max became a quadriplegic in 1959  at age 26 when his Austin Healey convertible slipped off a winding road.  Due to circumstances resulting from his condition he lived in a nursing home till he was 38. But he found a way to get out of the nursing home, he got married and he and his wife started Paraquad which became a national leader in helping other people with severe disabilities live at home,find jobs and lead regular lives.  Max Starkloff died at age 73 from complications from the flu on Dec. 27,2010.

 He lived much longer than anyone had expected when he became a quadriplegic in 1959. And what a life he had.

                                                                                       ellie

Permalink 03:41:00 pm, by eleanor Email , 1072 words   English (US) latin1
Categories: Advocacy, my life, Thoughts, information

HOW DID WE GET FROM BEE STINGS TO FAST TRACK FOR DRUGS SO FAST

And how did I get to walking like this at an event  from being wheelchair dependent  3 years  ago.

 

IMG_1092PB270001_thumb

 How?  Through science and technology and the development of new drugs

 

Scientific and Technological Research over the past decades have produced so much more information about MS and this has allowed new drugs to be developed. And even with no cure yet..we are being helped !!!

The first big breakthrough in Science was the understanding of the immune system. Dr.Weiner in his book," CURING MS ?HOW SCIENCE IS SOLVING THE MYSTERIES OF MULTIPLE SCLEROSIS " discusses how when he first started a study into MS in 1972 the knowledge of the immune system was at a very elementary level. However it and the study of virology was becoming a fascinating basic science. As a result vast progress in understanding the immune system has occurred.  In fact 7 Nobel prizes have been received over the past 25 years for research into our immune system.

The second important event was in Technology. The development of the MRI machine to image the brain. Here for the first time physicians/scientists could study the results of their research with an actual multilayered image of their subject matter. And of course people with MS could be diagnosed much earlier. But at that time there was no effective drugs to slow down relapses or disability due to MS. I remember when the first MRI came to our area at Albany Med. Everyone was excited as among other conditions it could give an early diagnosis of MS.  Yet as some people felt at the time if there was no effective treatment it was certainly a mixed blessing.

But then came the 3rd event. This was the development of  recombinant DNA techniques  this allowed scientists to genetically engineer proteins.  This led to the first drugs for MS- the genetically engineered Interferon's  (Betaseron, Avonex and Rebif) . And the development of these drugs were done with private money through the drug companies.

The first was Betaseron which was developed by the drug company Biogen. Betaseron showed through its 3 Phases of drug trials that it was safe and effective. And as it was classified as a biological orphan drug it could be a profit maker. This was necessary for the company to take on this drug as being a public company on the stock market they are required to make maximum profit for the shareholders. And since that time Avonex and Rebif which are also interferons were added to the list of MS drugs.

And other drugs that are not interferons have also been put on the market. Copaxone was one of the first and more recently Tyserbi . And now we have our first oral drug Cladribine on the market with others in the pipeline .  Also exciting is the new drug Amprya which helps the electrical charge go over damaged myelin sheaths covering the nerves. When I started Ampyra I got back my walking ability in the afternoon and increased my distance and speed.

In fact there are now 700 studies In North America  listed with the NIH (National Institute of Health).    image                     

For more details on locations go to :http://clinicaltrials.gov/ct2/results/map/click?map.x=165&map.y=171&term=Multiple+Sclerosis  

  Some of these studies will successfully produce new drugs that will help people with Multiple Sclerosis some will not and this is why new drugs can be so expensive .  Producing a new drug is costly and as the drug trials are done by Private- publically traded drug companies they put money up front into the research and making of the drugs. But they have to be certain they will make a good profit later.

Unfortunately as the costs are so high people who would benefit from them can be left without them. Particularly now in a time of recession and financial crunch .  People who are losing their jobs who had health Insurance with their jobs have lost their health Insurance. Those still employed are finding that their employer is  demanding they pay more of the cost of their health Insurance. People working for the Federal or State government who are still unionized are finding that they are also being asked to pay more for health Insurance.

And last night a local radio station WAMC reported that Epic our state's program for prescription drug assistance for  moderate to low income senior citizens is now going to be put through a major dismantling. Our new Governor Cuomo is the son of the past Governor Cuomo that put this wonderful program in place back in the 1980's. If this goes through there will be many senior citizens who will be back again to not being able to take their prescription drugs. Yes, we have Medicare D for seniors but from personal experience you have to fight to get MS meds. And in the past Epic has been wonderful by supplying the drugs while they fought with the drug company's to get them to provide coverage. I think they have a little more clout than each of us individually have. And these drugs are really expensive so co-pays are large.And there are no generics yet!

The use of appropriate drugs can make a tremendous difference in a person being able to be more productive and not being hospitalized or placed in a nursing home(which would cost more) thru having better health. And for those of us with MS the decreased amount and length of time in exacerbations and the slowing of disability cannot be underestimated in significance. ....But the yearly cost of these drugs have gone up tremendously just like other healthcare cost for example the chart below was in the Winter 2010 issue of MSQR 

    Approximate cost Approximate cost
DMT Producer Summer2007 Summer 2009
Avonex Biogen Idec $10,000 $23,736 to $30,660
Betaseron Bayer $10,000 $22,272 to $32,616
Copaxone Teva Pharmaceutical $10,000 $23,208 to $33,804
Tysabri Biogen Idec $28,400 $31,332
Rebif EMD Serono $15,600 $25,068 to $30,756

Why such big jumps? I think that's a question that should be explored.

I understand with health care costs sky-rocketing everywhere costs by the provider will be passed on to the patient. But in the case of Epic just to dismantle a program?  And are these profits we see pharma and the other health care plans and some providers making while many people can't afford their drugs or health care right?  Why are our costs higher than in other countries ?

I think we should do some soul searching and seriously answer these questions before we throw patients off the health care bus.  Are we no longer a society of equal opportunity for all ?

                                                                                                                                           ellie

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