Memorial Day - How do you Celebrate?

How do you Celebrate Memorial Day?  Do you have any great recipes to share?

My family and I don't have any set plans every year, but we always go to the local music festival Riverfest, cook-out and try to hang out by a pool/lake at some point during the long weekend.  Our grilling food of choice is typically just burgers and hot dogs.

I do remember as a little girl, my dad making home-made ice cream - YUM!!!  I miss that. 

Here is a great website with some amazing recipes you and your family might want to try this holiday weekend.

http://www.recipe4living.com/articles/plan_a_quick_and_easy_memorial_day_barbecue_party.htm

QUICK FACT:  Memorial Day, originally called Decoration Day, is a day of remembrance for those who have died in our nation's service. Memorial Day was officially proclaimed on 5 May 1868 by General John Logan, national commander of the Grand Army of the Republic, in his General Order No. 11, and was first observed on 30 May 1868, when flowers were placed on the graves of Union and Confederate soldiers at Arlington National Cemetery.

Fox 16 and Donna Terrell

We had a wonderful opportunity to work with Donna Terrell on a news story about clinical trials.  She really focused on the common misconception of being a human guinea pig.  I think she did her research and represented the story with good clear facts and I was delightfully suprised.  I hope folks in central Arkansas saw the story, if not you can still check it out online.  I hope the link before will take you to the video to see it.  If not just go to fox16.com

Watch the Clip

Parkinson's

Parkinson's disease is named for the English physician, Dr. James Parkinson who described the disease in 1817 as "Shaking Palsy". It was not until the 1960's that the biological and chemical changes in the brain of persons with PD were identified.

Parkinson's disease affects over 2 million people in the United States alone. For every 100,000 people, 20 new cases of PD are diagnosed every year. Most PD cases are in persons over the age of 50. However, there is a significant increase of patients diagnosed in their 30's and 40's. There is also a form of PD that affects persons in their teens.

Researchers have discovered many of the chemical mechanisms in PD, however, the cause of PD remains unknown. One known trigger for PD is sleeping sickness (encephalitis), a viral infection that damages the same area of the nervous system as PD. This is rare, except for cases arising immediately after the world wide epidemic of sleeping sickness between 1918 and 1932. In recent years, many young people have developed PD like symptoms following the use of an illegal drug.

At Clinical Trials, we strive to search out pharma companies developing investigational drugs for diseases like Parkinsons.  For example, we currently are recruiting new patients for this study:  www.advancedparkinsonsstudy.com

The Arkansas Chapter of the APDA has many valuable resources.  Check out their website: http://www.arparkinson.org/index.html

There you will find Support Group Information, Caregiver Help and more.  Since there currently is no cure, your best option is with current treatments to help with the symptoms and Hope Through Research!  Volunteer Today!

Diabetes blog

I think it is very important for patients suffering from any disease to not only be educated about their disease but to be in touch with others experiencing similar problems.  It is a great way to cope and it will help give you great tips/advice and just in general a Great Support System.  Below is a link to a recent blog I found online.

If you have Diabetes, you should definitely check it out.  I've also included some excerpts, so you know what to expect.

http://diabetesstopshere.org/2011/05/12/love-hate-lists-and-diabetes/?utm_source=Facebook&utm_medium=Post&utm_content=051211-love-hate-lists&utm_campaign=DSH_BLOG

Having a positive attitude is important… but let’s face it, diabetes isn’t all sunshine and roses (or glitter and unicorns, for that matter). So today let’s vent by listing ten things about diabetes that we hate. Make them funny, make them sarcastic, make them serious, make them anything you want them to be!!

Exploring Early-Onset Alzheimer's

Here is a story by KTHV in Little Rock with video clips.  Take a look and let me know your thoughts!
http://www.todaysthv.com/news/story.aspx?storyid=156715

Among the 5.4 million patients today nationwide, there's a growing number of Early Onset Alzheimer's.
We're told about 3,800 people have the progressive, debilitating dementia right now, many diagnosed in their 50s.

Dr. Kenneth Morgan Sauer speaks on this and he currently works at the Longevity Center at St Vincent in Little Rock.  "We are understanding Alzheimer's better so we are actually able to identify those patients who are Early Onset instead of claiming a psychiatric disorder," Sauer said.

As research continues, Sauer still warns of high risk factors ranging from high cholesterol to diabetes.
"Currently in modern research we're not even seeing anything close to a cure. What we're trying to do find treatments to slow the process down," Sauer said.

Blog for those caring for people with Parkinson's & Alzheimer's

Discovered a Blog for people caring for those with Parkinson's & Alzheimer's.  Here is where to find it and below is a recent post
http://www.parkinson.org/Caregivers/Caregivers---On-The-Blog/May-2011/Lessons-Learned-About-Caregiving-for-a-Person-With

Lessons Learned About Caregiving for a Person With Parkinson’s and Alzheimer’s Disease

 The following was taken from the journal of Vernon Gokey, caregiver to his wife Marianne:
Lessons Learned About Caregiving for a Person With Parkinson’s and Alzheimer’s Disease

1. Patience!!
2. Have the ability to be interrupted without question.
3. Humor is important.
4. Always be positive.
5. Be able to answer the same question over and over as if it was asked the first time.
6. Handle hallucinations as real, but don’t dwell on them.
7. Relieve fears with simple explanations. They become fearful when they don’t understand.
8. Don’t talk about what is happening tomorrow; it creates anxiety during the night.
9. Be prepared to switch tasks without prior notice.
10. In later stages of Parkinson’s, be prepared for falls and spills. Shakes and loss of balance become more prominent.
11. Eliminate cleanup by using a towel under the chin when brushing teeth or giving pills. Use straws for drinking (I drilled a hole in some sippy cups to insert straws).
12. When chewing becomes a problem, prepare food that can be eaten with a spoon, such as chicken a la king, chili, soup or food that can be cut bite size like pancakes or omelets.
13. Become a pro at changing the subject or diverting the thinking process.
14. Create a simple routine to be used every day. It helps maintain a constant in their life.
15. Use satin sheets and satin gowns or pajamas. It helps to get them in and out of bed.
16. Install handicap bars in front of toilet if possible. This allows them to hang onto the bar while you are taking down their clothes or pulling them back on. They also help when you have to wipe them and or have to apply medication.
17. If the car has cloth seats, use a garbage bag on the seat. It makes it easier to get them in and out of the car. The bag helps to rotate them.
18. Parkinson’s slows the reaction time. When asking a question or giving a direction, allow time for them to process the request. It may be 3 to 6 seconds before they answer
19. Take care of legal affairs early in the progression while they still of sound mind and they can still write and sign their names. Their hand writing will keep getting smaller and because of the shakes it will become illegible.
20. A wheelchair and a lift chair will become necessary to save your back and your time. Wheelchairs allows mobility so you can take them out of the house to socialize at grocery stores, restaurants, or malls. When I took her to the grocery store, I bought a small basket to sit on her lap. We put the light items in the basket and the heavy ones went in bags I hung on the handles.
21. Install toilet seat hinged elevator lifts under the seats. It makes it easier to sit them down and to pick them up also saves having to buy a handicap toilet (saves money).
22. Hire care givers to come in a couple times a week, or more often if you wish. I found the agencies could not guarantee the same person every week. And also don’t allow caregivers to lift patients. I feel that consistency is very important so I went with private care givers, one of the best things I ever did.
23. Build ramps to the outside for the wheelchair (I built ramps to the garage, the lanai from the kitchen and the bedroom. I also built ramps into the shower for the shower chair). 

Vernon Gokey was caregiver to his wife, Marianne, for several years after she was diagnosed with Parkinson’s and Alzheimer’s. He kept a journal during this time, and  kindly gave us permission to reprint the tips that appear in this blog.

Would you participate in a Clinical Trial?

Have you ever considered participating in a clinical trial?  Do you know anyone that has participated in a clinical trial?

Clinical trials are how we learn more about possible new treatments and cures for all diseases.  Without research we wouldn't have the medical advances available today. 

Some people say "I don't want to be a guinea pig."  The difference is a research volunteer is being fully informed and giving their full consent to participate and a guinea pig is not given the option to decide whether or not to participate.

Which brings me to Informed Consent.  Informed consent means that as a patient, you are given information so you can understand what is involved in a trial, including its potential benefits and risks, and then decide freely to take part in it or not.  The informed consent process is an ongoing process. If you enter a trial, you will continue to receive any new information about your treatment that may affect you willingness to stay in the trial. Signing a consent form does not bind you to the study. You can still choose to leave the study at any time.

Did you know that only 3% of qualified patients actually enroll into clinical trials?  In turn, it takes more time and money spent on recruitment to find qualified patients in order to meet the number of patients set for a particular trial. 

Why should you care?  The more time and money spent will directly effect you if the drug goes to market.  Tired of those expensive medications?  Be informed and participate if you can and are willing.

If you meet the criteria for a particular trial and decide to volunteer, remember that all the testing, exams, medication is provided to you at no cost.  Some studies may require frequent or long visits, but there is usually some compensation for your time and travel.

Tell us about your experiences! 

FDA OKs new Diabetes pill

The Food and Drug Administration says it has approved a new diabetes pill from Boehringer Ingelheim and Eli Lilly for patients who can't control their blood sugar with older medicines.

The agency approved Tradjenta tablets for adults with type 2 diabetes, which affects 24 million people in the U.S.

People with the disease have trouble breaking down carbohydrates, because their bodies have become resistant to the protein insulin. They are at higher risk for heart attacks, kidney problems, blindness and other serious complications.

Tradjenta works by blocking the DPP-4 enzyme, which releases insulin-boosting hormones that help control blood sugar levels. Merck and Bristol-Myers Squibb already market similar drugs in the U.S.

The FDA approved the drug as a stand-alone treatment or in combination with older diabetes drugs like metformin.