Showing posts with label patient's advocate?. Show all posts
Showing posts with label patient's advocate?. Show all posts

Sunday, November 8, 2009

Keep Todays Memories For Tomorrow-Free Screenings

Sparks of Genius Brain Optimization Center to Hold Free Memory Screenings
National Event Stresses the Importance of Proper Detection and Treatment


Boca Raton, FL— Consumers who want a status check on their memory can take advantage of free, confidential screenings on November 17 as part of National Memory Screening Day, an annual initiative of the Alzheimer’s Foundation of America (AFA) designed to promote proper detection of memory problems and strategies for successful aging.
Memory screenings are a significant first step toward finding out if a person may have a memory problem. Memory problems could be caused by Alzheimer’s disease or other medical conditions.
Now in its seventh year, AFA’s National Memory Screening Day coincides with National Alzheimer’s Disease Awareness Month, which takes place during November.
On November 17, Sparks of Genius Brain Optimization Center will hold memory screenings at 7777 Glades Road, Boca Raton, from 10 am – 3 pm. Please call 561-859-4060 for more information or to make an appointment. You are also welcome to stop by. Refreshments will be provided.
At Sparks of Genius we offer cognitive training program which can slow down the progression of memory loss or delay it’s onset.
AFA suggests memory screenings for adults concerned about memory loss or experiencing warning signs of dementia; whose family and friends have noticed changes in them; or who believe they are at risk due to a family history of Alzheimer's disease or a related illness. Screenings also are appropriate for those who do not have a concern right now, but who want to see how their memory is now and for future comparisons.
The event features a face-to-face screening, which takes only about five to ten minutes, and consists of a series of questions and tasks. Screenings will be conducted by Dr. Rohn Kessler, Dr. Amy Price and Ninah Kessler, LCSW. The results do not represent a diagnosis, and AFA advises those individuals with below-normal scores or those who have normal scores but are still concerned to follow up with a qualified healthcare professional.
Eric J. Hall, AFA’s president and CEO, is urging consumers “to be proactive about brain health.”
”We pay so much attention to the health of our bodies, but we should be equally concerned about the health of our brains,” he said. “National Memory Screening Day offers the opportunity to find out how your memory is now and to learn how to protect it in the future.”

For more information about National Memory Screening Day, visit www.nationalmemoryscreening.org or call 866-AFA-8484.

Sunday, July 12, 2009

Immediate Post Surgery Wound Care Hints


By Amy Price PhD

After surgery wound care could be better addressed. The advice is usually to ice the area for twenty minutes at a time and don't get it wet for 48 hours to 21 days depending on the procedure because of infection risks. Who are they kidding...After bleeding, being washed down with iodine and being touched,probed,cut and stitched by hands I have no personal relationship with all that I want is a bath or a shower!

The risk of infection is serious as it can travel to your bones or become systemic and cause more damage than the original problem. It can travel through open places in the wound or through the stitching which acts as a wick. Until the area has healed over it is best not to swim or use a hot tub because of bacterial risks. It is important to follow your doctor's advice for changing dressings etc. If the area becomes hot to the touch, swells rapidly,starts pulsing or you start to run a fever get your doctor's advice.

To shower after spine and cervical surgery I purchased a silicon swim cap as this is completely waterproof and less irritating than latex. I cut generous pieces which I placed over the wound and taped it in place with duct tape. For arms and legs I used umbrella bags, big ones for leg and smaller for arm areas. I placed them over top of the dressing and bandage and taped this in place. You will still need to exercise care and try not to get the area wet...a bath could be a bad idea! If it gets a little damp in spite of all precautions gently dry the area, put on topical antibiotic and replace the dressing.

If this was an emergency room visit remember emergency rooms will only stabilize you, they have no obligation to provide treatment beyond this. An emergency room visit needs follow up with a doctor. At emergency if you have tendons exposed insist on being seen by a specialist on call. I had three fingers all with tendon avulsions stitched up with no repairs. It took a year of occupational and physical therapy to get the function back. A word to the wise...if you have broken something and they have splinted, cast or wrapped it and it starts to smell bad or the exposed areas turn dark and lumpy go back to the hospital. They don't mean literally black, if it darkens substantially, swells and get worse rather than better have this checked out. With a temporary cast the swelling can cut off the circulation and the tissue starts to die. I almost lost a hand this way as I was told if it turns black come back, since it cost me 10,000 dollars for the emergency room appearance and 273 dollars for a bandage available at the dollar store.I really wasn't up for a repeat visit!

The ice is easy in principle but not so easy for the drugged and injured to apply. Some people travel for surgery and it is a considerable time before they are at home to ice. Do yourself a favor and buy some instant ice at a pharmacy before your procedure or get the surgery to supply you with a couple of extra packs for the trip home. The ice takes down swelling and eases pain while helping your body heal. At home consider the wound site. An awkward area like the elbow,knees or shoulders may be best with a bag of frozen peas which will bend to the shape. A posterior neck surgery may benefit from an emptied and refilled with water large soda bottle (don't freeze the soda it explodes). Ask a family member or friend to do ice duty day and night. If you are like me and don't want to ask anyone for anything consider that you can buy them a gift, take them to dinner or return the favor. It is an investment in your healing. Be nice to those who care enough to be available, they do not benefit from you getting an attitude because you feel bad that you need the help and being thankful can go along ways towards preserving relationships

There will be a follow up post on scar care soon. This information is for educational purposes only and does not constitute medical advice. That is your doctor's assignment.

Sunday, May 17, 2009

Parkinson's Disease Stem Cell Sequel


By Amy Price PhD
I found an interesting addition to the Parkinson's post's in the form of an article from Nature. Many thanks from helpful individuals at the Open University in the UK for passing this on.

In the article in Nature Suchowersky O. Transplantation therapy for Parkinson disease: the good, the bad and the enigmatic. Nature clinical practice. Neurology. 2008 Sep;4(9):465
Parkinson disease (PD) affects an estimated 1 million cases in North America . Motor symptoms in PD initially
respond well to dopaminergic replacement medications, but because PD progresses the drugs gradually lose effectiveness after about 10 years resulting in gait dysfunction and complications such as dyskinesias
PD is not just a disorder of the dopaminergic system but involves other neurotransmitter systems which inform autonomic dysfunction, mood disorders, fatigue, pain, sleep disorders and cognitive function. Dopaminergic cell replacement, even if successful is thought capable of treating only motor symptoms.
Over 20 years ago, transplantation of fetal ventral mesencephalic cells into the putamen was
performed on a small sample of participants with reportedly good results. Regrettably further studies with larger participant pools failed to confirm the initial reports (Freed CR et al. [2001] N Engl
J Med 344: 710–719). PET and pathological analyses revealed adequate survival of grafted
neurons, and there was untreatable runaway dyskenesia. However clinical benefit was seen in
a small subset of patients, 16 years on autopsy results are available Mendez et al. showed survival of
grafts without PD pathology for 14 years in five patients (Mendez I et al. [2008] Nat Med14: 507–509). Another patient showed good clinical improvement l 5 years plus, before gradual worsening of motor function and development of gait and balance problems (Kordower JH et al. [2008] Nat Med 14: 504–506). Autopsy results from this patient 14 years after transplantation showed great graft survival but grafted neurons had pathological
changes typical of PD, including Lewy bodies and activated microglia (cell scavengers) were seen in large numbers
Liet al. reported similar graft pathology in three patients up to 16 years after transplantation (Li JY et al. [2008] Nat Med 14: 501–503). These results indicate that for stem cell therapy to be effectual long term in D research needs to be initiated to investigate the spread to youn grafted neurons and determine strategies to resolve this issue. I would hope that advancement in the area of Adult Stem Cell research will make this possible in the near future.

I am finding the stem cell story is not so new. I did hear about a very young women stricken with metasticized spinal cancer who was treated at Sloan Kettering with grown out adult stem cells taken from her own bone marrow over fifteen years ago. She is now a successful professional with no trace of malignancy in her body. I also remember twenty five years ago in Canada I knew three terminal patients who underwent adjustments to the bone marrow transplant protocol that involved growing out their own bone marrow cells. One person enjoyed a year free from blood cancer and then relapsed but the other two lived. It is strange that when I go to Pub Med , Google Scholar or even the University library there is no trace of this research performed for "humanitarian reasons"

There is also a lot of interest in the London Project where stem cell trials are close to human trials for those with macular degeneration. Pfizer is quoted as expected to announce backing of stem cell therapy, apparently with joint labs in Cambridge Mass and Cambridge UK but on the Pfizer site I didn't see this in place.

Individuals are reporting encouraging success for adult stem cell treatment where they are thier own donors particularly for orthopedic and cardiac applications. These treatments are largely privately funded. It would be great to see this in the mainstream covered by insurance and available for people regardless of income levels

Wednesday, May 6, 2009

More Than a Wheel Chair


I recently enjoyed a great flight with a group called Paralysed Veterans of America. People of all shapes, sizes and conditions along with dedicated physicians and carers formed a mighty team. These men were on their way to Aspen to ski and they were fun to be with. Even with missing legs,arms, spine injury, blindness, deafness or brain injury their zest for life and care for others was an example of power and unity at work.

The conversation was full of hope for new treatments, medications, regenerative medicine and ways to improve life for their fellow man. They do research,create equipment to make life easier, and help others navigate paperwork so families can put their lives back together

As we talked I learned they do more than ski and race cars. They have lobbied congress on behalf of all of us who are disabled so we are able to use commercial transportation, be treated with courtesy and receive the assistance to get from one location to another. Getting the luggage and extra equipment a disability brings from the customs hall to the next flight, or negotiating airplane steps can appreciate the complications well timed assistance can bring.If you encounter problems travelling with a disability this site can show you what to do They mentor the newcomers on the way out of the old life before the trauma into a destiny where life is not over or lessened it is just different. I heard no useless platitudes like "Get over it, others are worse off" but rather things like "Buddy have you tried this?" or "It will get better, I will go with you".

I was empowered by the raw courage in the face of obstacles others had deemed impossible and their group willingness to give life another chance. Most of these men face daily pain, memories they can not lose and disability yet their indomitable spirits did not quit and they helped each other.

I saw courage and dignity more clearly than in a military parade or in troops ready for action...these men showed us how to live after the party is over and they did it well.

To find out more about them or to donate to make these kind of trips possible see this link I like to remember that their gift of service and the price they paid allows me to walk in freedom. Life is all about giving back to the foundation. When each of us does our part the foundation will be there for us and those who come after us

Sunday, April 19, 2009

Parkinson's Adult stem cell Breakthrough and more




More about Parkinson’s and stem cells….Keeping you posted as I learn too… The photo showing where damge occurs is from web MD (2002)

Would you be surprised that the technology to implant neural tissue in humans to alleviate Parkinson’s Disease was available as early as 2001 and in case studies has produced more successful remission than any drug on the market and with fewer side effects?

Michel F. Levesque, M.D., F.R.C.S.(C), F.A.C.S.Cedars-Sinai Medical Center in Los Angeles, Associate Clinical Professor of Neurosurgery at the UCLA School of Medicine, and member of the UCLA Brain Research Institute applied for Phase 11 FDA approval in several years ago. This was granted but sponsor complications and new rules by the FDA have put this phase on hold until Levesque and company can jump through the new hoops and negotiate more sponsors. This is tragic for Parkinson’s patients who could die or degenerate significantly before help is available.

It seems that the FDA would apply the same standard to our own cells that they do to foreign drugs. Pharmaceuticals take a ten year, 750,000 million dollar investment on average to bring to market and to start to make a profit. I do wonder about the stability of stem cell companies that have not counted the cost or prepared a strategy and stored up ammunition for battle. What did they think was going to happen? Nevertheless it makes one long for the days when scientists bit the bullet and practiced on themselves and family members. The results produced their own script. It seems today the trend is to scorn the establishment while begging to get into ‘the inner circle’. This cannot in all fairness be blamed on the FDA but rather on the inconsistencies of human nature and the need to belong. It is tragic that ethics and human decency for ‘the little people’ are tossed aside in the parade of blind ambition that ignores the simple concept that if you take away from the foundation (those that have supported your growth) the structure will destroy you…but I digress, on with the story….

It does seem strange that it is a woman’s ‘right’ to terminate a child but it is not an individual’s right to choose their own stem cells. The right to terminate brings death and is endorsed but the right to life through the harvesting of our own stem cells is denied by an outside source.

It is not like the FDA is even particularly good at culling out the problem children in the industry or adding to medical knowledge. A simple Google search on major drugs and problems in approved FDA pharmaceuticals is an eye opener in politics and commerce rather than the mainstream of patient safety for which they purport to represent.

Levesque and his colleagues did a successful case study with a man suffering from Parkinson’s in 2001 and yet in 2009 Parkinson’s patients are still dying needlessly. The FDA is still a bureaucracy which people are distracted into attacking while Scientists followed by the masses line up on the adult stem cell or embryonic bandwagon instead of putting partisan economics and politics aside to join together as scientists to promote healing and answers for those without hope.Here is a little about the study below:
“MATURE NEURONS DERIVED FROM THE PATIENT’S OWN BRAIN CAN BE TRANSPLANTED BACK SAFELY AND IMPROVE SYMPTOMSWe recently presented the clinical outcome of our autologous method at the International Congress of Parkinson’s disease and Movement Disorders in Rome. In accordance with our institutional review board, we transplanted a patient with advanced Parkinson’s disease with differentiated neurons derived from an initial needle biopsy. At three years post-operatively, the overall Unified Parkinson’s Disease Rating Scale (UPDRS) improved by 81% while “on” medication and 83% while “off” medication. We demonstrated here the long-term clinical remission of Parkinson’s disease symptoms in a single patient.Because of their biocompatibility, safety and potential integration into the host striatum, autologous adult neural stem cells and stem cell-derived neurons represent an effective alternative to current cell therapy aimed at the restoration of dopamine neuronal loss in Parkinson’s disease. Under the guidance and supervision of the Food and Drug Administration (FDA) office of Cellular, Tissues and Gene Therapies and the Center for Biologics Evaluation and Treatment (CBER) we are about to begin Phase II trials using this promising cell therapy.
CONCLUSION
Degenerative and traumatic disorders of the brain represent an enormous burden to the patient, their family and health care providers. The current debate between the embryonic stem cell proponents and those who are opposed to their use distracts from other avenues with promising outcome, such as adult stem cell therapy. It also overlooks other important issues of resource allocation between basic and clinical research, health insurance, and patient care. Scientific knowledge has rapidly progressed in the last five years (written in 2004) and stem cell research and therapy remains a very promising field for treatment of neurological disorders. In a recent biotechnology industry meeting, a presentation had the approximate title: “Businesses are from Mars, Academics are from Venus”. What was forgotten there is that patients are from planet Earth and this is what should guide our efforts “ (Levesque, 2004)For the complete story read here and for an update on where things are today check out this link

Love S et al., Glial cell line-derived neurotrophic factor induces neuronal sprouting in human brain, Nature
Medicine 11, 703-704, July 2005
Slevin JT et al., Improvement of bilateral motor functions in patients with Parkinson disease through the unilateral intraputaminal infusion of glial cell line-derived neurotrophic factor, Journal of
Neurosurgery 102, 216-222, February 2005
Gill SS et al.; “Direct brain infusion of glial cell line-derived neurotrophic factor in Parkinson disease”;
Nature Medicine 9, 589-595; May 2003 (published online 31 March 2003)