Generic vs. Branded Drugs for Parkinson’s Disease

Currently, there are multiple pharmaceutical companies that manufacture a generic formulation of carbidopa/levodopa, dopamine agonists, monoamine oxidase inhibitors and anticholinergics. If you have Parkinson’s, are taking brand name medication and then are offered a generic substitution for one of your Parkinson’s medications, you should know that the FDA requires that generic drugs must show an “essential similarity” to the branded drug prior to market approval, but that in some cases, this standard is not high enough. A review supported by NPF chronicles compelling evidence that if you are in more advanced stages of the disease, switching from branded drugs to generic, or from one generic to another, may have adverse effects. The authors, including NPF National Medical Director Dr. Michael S. Okun, believe that the standards for approving generic drugs for Parkinson's may not be strict enough to demonstrate that the generic alternatives are equally effective.
Work with your physician to develop a tailored treatment plan. Using generic drugs may provide a cost savings, but they may not be appropriate for you, especially if you already tolerate the branded drug.
If you make the switch, be sure to follow these tips:

• Report to your physician how effective the drug is
• Carefully keep a diary of any side effects
• Record dose adjustments that your physicians make (higher or lower)
• In general, try to stay with a single drug manufacturer for your generic medications (You may need to ask your pharmacist to special order for you)

When attempts to tailor drug therapy with a generic drug have been unsuccessful, have your doctor appeal to the insurance company for a branded drug. It is important to include meticulous details of the various adverse side effects with the generic medication in your appeal letter.
If you have questions about this information, please call NPF’s Helpline at
1-800-4PD-INFO (473-4636).
Ask the Pharmacist about your medications in NPF’s online forum.

Medication timing critical in Parkinson’s disease

Marjie Zacks
Hospital News - A one-week disruption of his Parkinson’s medication schedule resulted in nearly three months of distress for Lorne Collis after he returned home from a brief hospital stay for a kidney ailment in December 2009. “My tremors were uncontrollable,” says Collis.

“My restless legs syndrome was extremely uncomfortable. It took about three months of getting back on my medication routine and exercising before my body felt normal again.”

It’s a common experience. People with Parkinson’s enter hospital for reasons that may or may not be related to Parkinson’s and find that the hospital’s drug rounds do not coincide with their own medication regimen. However, in Parkinson’s, a minor change in medication timing can have major negative effects on symptom management and general recovery.

The uneven release of dopamine can result in a person suddenly not being able to move, get out of bed or walk down a corridor. It can also lead to serious complications such as aspiration pneumonia and bowel obstruction.

“When Parkinson’s symptoms get out of control, it tends to exacerbate the reason why the person is in hospital.” says Barbara Snelgrove, director of education and support services for Parkinson Society Canada. “It also makes care of the person more difficult for health-care professionals.”

To address these issues, Parkinson Society Canada is the first Parkinson’s organization in North America to introduce Get it on time, an innovative education and awareness program designed to ensure that people with Parkinson’s receive their medication on time, every time, whether they are in emergency rooms, hospital wards, or long-term care facilities.

Get it on time was developed and implemented successfully by Parkinson’s United Kingdom. Parkinson Society Canada has adapted it to the Canadian health-care environment, with financial support from the Canadian Institutes of Health Research and the Canadian Patient Safety Institute.

Launched in January 2011, the program uses the voices of people with Parkinson’s and their care partners to target the “Get it on time” message to nursing staff and front line health professionals through in-service training and communication tools such as information kits, posters and Get it on time stickers to attach to patients’ charts or care plans.

The program also has a self-advocacy component, encouraging people with Parkinson’s to bring their own medication to the hospital or care facility and inform staff about their precise medication needs.

“We’re approaching this on many layers,” says Debbie Davis, chief executive officer of Parkinson Society Central & Northern Ontario, one of the regions piloting the national program. “We know that it can improve quality of life for people with Parkinson’s while they are in hospital or in a care facility. We also know that the people caring for them will have an easier time if they are educated as to what Parkinson’s is and what they can do to make people’s lives better.”

To date, over 50 Get it on time presentations have been made to long-term care facilities, retirement residences and Parkinson’s support groups in Ontario. The campaign will expand to Ontario hospitals, this fall.

Get it on time is being piloted in communities in Saskatchewan. In Quebec, it is called Le prendre à temps. Parkinson Society Canada is seeking funding to roll out the program nationally.

Lorne Collis has already benefited from Get it on time. In hospital recently for complications relating to Crohn’s disease, he says, “Because of my knowledge of the Get it on time program, I advocated for myself. I said, ‘these are the times I take my pills – 6 a.m., noon, 5 p.m., 9 p.m.’ One nurse had a relative with Parkinson’s, so she understood. She spoke to the charge nurse. They allowed me to take my own pills at my scheduled times. When I left hospital, this time, my Parkinson’s symptoms were fine and totally under control. It made a huge difference.”

For more information about Get it on time, contact general.info@parkinson.ca.                       

Song used as therapy for those afflicted with Parkinsons

Reinisa MacLeod
Herald Tribune - You put your right foot in,
You put your right foot out;
You put your right foot in,
And you shake it all about.
You do the Hokey-Pokey,
You turn yourself around.
That's what it's all about!

Though one might not make an immediate connection between doing the Hokey-Pokey and Parkinson's disease, it's actually become a tool for Grande Prairie's Parkinson's support group.

According to speech pathologist Matthew Brown, the song and dance is one of the best known across every generation, its popularity dating back more than 60 years.

Because of this, he chose it as part of a singing activity for a speech and voice therapy group he often leads every month. The group is a casual event that takes place before the monthly Parkinson's support meetings at Wild Rose Manor.

At first Brown thought the participants would be unenthusiastic about doing the Hokey-Pokey dance that goes with the song.

Instead, it's become a highlight.

"(Everyone) loved that part of it," he said. "It became this really great thing. Those who could stand were standing up, that part was really cool.

"They really dug it, so we kept it."

Parkinson's disease is a degenerative disorder that attacks the nervous system. Those who have it experience difficulty with muscle co-ordination, tremors, or shaking, a difficulty moving and walking. The disease also affects one's throat muscles, and leads to trouble swallowing and speaking loudly.

It most commonly affects people over the age of 50, and can be prevalent on one or both sides of the body and gets increasingly severe over time.

The loss of bodily control often leads to anxiety, depression, dementia and hallucinations.

"Parkinson's is a confusing disease because it fluctuates so much," said Doreen Larsen, a participant in the speech and support group. "One day, or one hour, you can do things really well, maybe speak well, or your balance is really well – you're co-ordinated. A little while later you try to do something similar and it's not as effective."

Brown said the vocal group explores the Lee Silverman Voice Treatment method, which utilizes a variety of techniques to help those who have the disease speak louder.

"The whole gist of it is loudness, not just producing loud voice, but thinking loudly, breath control, posture corrections in order to project a loud voice," he said.

The group is a fun way for local residents who experience the disease to keep their speech in shape for as long as they can, Brown said. The participants all provide input and feedback as to what to explore and work on, and other methods to keep their vocal quality from declining.

Brown said that the primary exercises for the group include casual conversation, vocal warm-ups and, of course the singing.

"It might seem like we're joking around and having fun," he said "(but) there's always an undercurrent of we're actually doing direct therapy."    
                

New treatment may help those with Parkinson's disease

Maureen McFadden
WNDU.com - Parkinson’s disease is one of the most common neurological disorders with as many as 60,000 Americans diagnosed every year.

Patients may have tremors, stiffness, and loss of motor control as the disease progresses.

Now, a new study is showing experimental gene therapy may hold real promise for some patients.

60-year-old Walter Liskiewicz spends most of his time tickling the electronic ivories.

The accomplished new-age jazz musician and singer has a string of hit songs under his stage name, Waldino.

Connie Smith, Walter’s wife, says, "He was very prolific. People couldn't understand how he could write so many songs. It's because he was stuck in a chair."

For more than 18 years, Liskiewicz has struggled with Parkinson’s disease. Increasing disabilities forced him to retire at age 44 from his first career as an oral surgeon. Medication helped control the disease early on, but eventually, Liskiewicz started losing his ability to speak and sing.

Walter says, "My life was going down the tubes."

Dr. Peter LeWitt heads the Movement Disorders Program at Henry Ford Health System in Michigan. LeWitt is studying gene transfer therapy to treat Parkinson’s patients.

Dr. LeWitt says, "The foot is now in the door, opening, perhaps, a better way to treat people than just medications."

During the transfer procedure, doctors attach a specialized gene onto a harmless virus and infuse it directly into the brain. Researchers believe that gene, known as GAD, regulates a chemical in the brain that can improve Parkinson’s disease symptoms.

Soon after the surgery, Walter and Connie began to notice small, but meaningful, changes.

Connie says, "Just to see him…the eyes sparkling, the smile, the facial expressions. It was really exciting.”

A cutting edge procedure that may help this dentist-turned-performer not miss a beat.

Researchers say despite concerns that the gene therapy could have unforeseen risks, those enrolled in the study had no significant side effects.

They say the therapy could potentially be repeated, and larger trails would need to be conducted before the FDA would approve the treatment as safe and effective.

RESEARCH SUMMARY

BACKGROUND: Parkinson's disease is a progressive disorder of the nervous system that affects movement. It develops gradually, often starting with a barely noticeable tremor in just one hand. While tremor may be the most well-known sign of Parkinson's disease, the disorder also commonly causes a slowing or freezing of movement. There's no cure for Parkinson's disease, but medications can help control some of the symptoms of Parkinson's disease, and in some case, surgery may be helpful. (SOURCE: Mayo Clinic)

CAUSES: A small region deep within the brain is the source for the symptoms of Parkinson's disease. When brain neurons in this part of the brain begin to die, these cells can no longer manufacture the molecule dopamine -- a chemical critical for controlling movement. The exact cause of Parkinson's disease is unknown, but several factors appear to play a role, including genes. Researchers have found specific genetic mutations that likely play a role in Parkinson's disease. In addition, scientists suspect that many more changes in genes -- whether inherited or caused by an environmental exposure -- may be responsible for Parkinson's disease. Exposure to toxins or certain viruses may trigger Parkinson's signs and symptoms. (SOURCE: Mayo Clinic)

NEW GENE THERAPY: For the first time, gene therapy has proven successful in Parkinson's patients. The therapy uses a virus that is stripped of its infectious properties and delivered with a thin tube into the brain's subthalamic nucleus -- a structure "the size of a pine nut" that is involved with movement. Researchers followed 45 patients for six months after the procedure at seven U.S. medical centers. Half the patients showed improvements early on, which they still sustained six months later. Most current therapies and research approaches target dopamine to treat motor symptoms associated with Parkinson's disease. In contrast, the focus of the current gene therapy strategy is on increasing GABA -- a brain neurotransmitter that regulates movement. In Parkinson's disease, GABA is reduced in the area of the brain known as the subthalamic nucleus, causing it to be overactive. Investigators feel this might be a better way to help advanced Parkinson's disease. (SOURCE: Henry Ford Health System)

FOR MORE INFORMATION, PLEASE CONTACT:
Dwight Angell
Director, Media Relations
Henry Ford Hospital
dangell1@hfhs.org
(313) 876-8709