Sleeping With the Enemy

Artwork by Sherri Woodbridge Copyright 2011
Artwork by Sherri Woodbridge
Copyright 2011

My first few years with Parkinson’s were crazy. Trying to get the timing of the drugs right, the dosages, the amounts, dealing with side effects. Looking back, I think one of the most frustrating aspects to the drugs was how sleepy they made me.  But because of the Parkinson’s itself, when everyone else was laying their head on soft pillows at night, dozing into blissful moments of deep sleep and already dreaming dreams, I  was chatting online with a new friend who also found herself in my shoes – unable to sleep in the wee hours of the night and morning because we had Parkinson’s disease.

When you think of PD, you usually picture someone shaking, but there’s more to it than that. Like wreaking havoc with your – what was once known as – sleep pattern. Ah, what we wouldn’t give to be able to sleep like a baby again, but that is actually what we do. We sleep like babies. Up and down all through the night, sometimes awaking from bad dreams, sometimes too hot from night sweats, sometimes awaking in fear due to nightmares from the drugs we take.

What to do, what to do.

Here are  a few suggestions to making sleep more attainable. Everyone’s different, so what works for some, may not work for all.

  1.  Put on relaxing music. Quietly, as everyone else is sleeping, remember? My daughter can only fall asleep with her ear plugs in and listening to music as she tries to fall asleep.
  2. Read a book. Preferably a boring one.
  3.  Make sure you’ve taken your medications. If I miss my evening dose, I am almost always guaranteed to have battle with the restless leg syndrome monster and that guarantees me at least an hour and a half more of not being able to sleep.
  4. There is a plethora of sleeping aides on the drug store shelf. Some recommend one over the other, but it comes down to what works best for you, if they’re giong to be helpful at all. It’s a good idea to run it by your doctor first before adding more drug substances to your mix.
  5. Essential oils are the rage and there is actually a mixture for sleeping that my daughter introduced me to that you rub on your feet. Her oil rep made her own mixture so you’d have to contact a Doterra rep or someone who knows essential oils.
  6. Many people are going for other remedies which I cannot recommend given I haven’t and don’t intend to try them, but they swear by their effectiveness (one  being medical marajuana).
  7. Melatonin seems to be a very popular sleep aid for people who find it difficult to sleep and is natural.
  8. Sleep-time tea, Nighty-nite tea… There are also many teas to relax  and  help you get to sleep. Check your grocer’s shelves.
  9. A technique that I have found that works for me is, as I am laying in bed (and maybe oddly enough, I can only fall asleep in one position) I intentionally make my body relax and then begin to pray. It works 100% of the time.

What is your suggestion on sleeping with the enemy – Parkinson’s disease?

More Info on New PD Drug

AbbVie Announces U.S. FDA Approval of DUOPA™ (carbidopa and levodopa) Enteral Suspension for the Treatment of Motor Fluctuations in Patients with Advanced Parkinson’s Disease

· DUOPA is the first and only treatment providing 16 continuous hours of carbidopa and levodopa for motor fluctuations in advanced Parkinson’s disease

· In a clinical trial, patients treated with DUOPA experienced significantly greater improvement in “off” time than patients treated with oral carbidopa-levodopa immediate release tablets

NORTH CHICAGO, Ill. January 12, 2015 – The U.S. Food and Drug Administration (FDA) has approved AbbVie’s (NYSE: ABBV) DUOPA™ (carbidopa and levodopa) enteral suspension for the treatment of motor fluctuations for people with advanced Parkinson’s disease. DUOPA is administered using a small, portable infusion pump that delivers carbidopa and levodopa directly into the small intestine for 16 continuous hours via a procedurally-placed tube.

DUOPA was approved by the FDA as an orphan drug, a designation granted to products intended for the treatment of rare diseases or conditions affecting fewer than 200,000 patients in the U.S.

“There is unmet need for treatment options for patients with advanced Parkinson’s disease. As the disease advances, it can be difficult to control motor features,” said C. Warren Olanow, M.D., Professor, Department of Neurology and Department of Neuroscience, Mount Sinai School of Medicine, and lead investigator of the DUOPA pivotal trial. “In clinical trials, DUOPA was shown to significantly reduce the amount of off time advanced Parkinson’s disease patients experienced.”

In the advanced stages of Parkinson’s disease, patients may begin to experience “off” time, or periods of poor mobility, slowness and stiffness. Additionally, in Parkinson’s disease patients, the spontaneous emptying of the stomach becomes delayed and unpredictable, which can affect the timing of when orally administered medicines leave the stomach and are absorbed in the small intestine. DUOPA provides patients with the same active ingredients as orally-administered carbidopa and levodopa immediate release, but is delivered in a suspension that goes directly into the small intestine via a tube placed by a percutaneous endoscopic gastrostomy procedure with jejunal extension (PEG-J). This type of administration is intended to bypass the stomach.

“The FDA approval of DUOPA is another significant milestone for AbbVie’s pipeline,” said Michael Severino, M.D., Executive Vice President, Research and Development and Chief Scientific Officer, AbbVie. “This advancement is important for patients with advanced Parkinson’s disease and their care teams, as it provides a new therapeutic option to help manage motor symptoms.”

“Due to the progressive nature of Parkinson’s disease, it can be difficult to treat over time, especially in the advanced stages,” said Joyce Oberdorf, President and CEO, National Parkinson Foundation. “Our organization is encouraged by the introduction of a new therapy that may provide another treatment option for affected patients and families.”

Good News!

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FDA Approves RYTARY for Treatment of Parkinson’s Disease

– Jan 08 2015

The Parkinson’s Disease Foundation (PDF) alerts the community that RYTARYTM, an extended release formulation of carbidopa/levodopa, has been approved by the US Food and Drug Administration (FDA) for the treatment of Parkinson’s disease. The approval was announced today by the drug’s manufacturer, Impax Pharmaceuticals.

Among the medications available to treat Parkinson’s disease, carbidopa/levodopa, often taken as Sinemet(R), remains the gold-standard for easing motor symptoms. But as Parkinson’s disease advances, the drug becomes effective for shorter time periods. This often makes it necessary for people with Parkinson’s disease to take the carbidopa/levodopa four or more times a day to control symptoms.

Even then, people with PD taking the drug experience drops in their levels of levodopa, causing a worsening of motor symptoms as the drug “wears off.”

In recent years, drug manufacturers have tried to develop a formulation of carbidopa/levodopa that would release more slowly over time, and keep levodopa levels more even, thus reducing “off times” for people with Parkinson’s disease. The manufacturer of RYTARYTM states that the drug is designed to reduce off times in people with Parkinson’s disease.

“A new drug for PD is always a cause for celebration. RYTARYTM is formulated to kick in rapidly, then maintain blood levels longer than immediate-release carbidopa/levodopa,” says Kathleen M. Shannon, M.D., Chair of PDF’s Medical Policy Committee and Professor of Neurology at the PDF Research Center at Rush University Medical Center. “This makes it potentially useful for people with Parkinson’s who are having wearing off of drug benefit between doses.”

The manufacturer has announced its expectation for the drug to be available in February 2015 in four strengths. The dose of RYTARYTM must be adjusted carefully as there is not a simple 1:1 relationship between the dose of carbidopa/levodopa and that of RYTARYTM. People with Parkinson’s disease who are interested in RYTARYTM are advised to discuss with their doctors the potential risks and benefits of the drug in comparison with other PD drugs.

PDF welcomes the addition of this new tool for clinicians and people with Parkinson’s disease. For additional information about medications for Parkinson’s disease, please contact PDF’s HelpLine at (800) 457-6676 or info@pdf.org or use our free resources below.

Download Fact Sheet: Understand PD Medications

View PD ExpertBriefing: Medication Side Effects

View PD ExpertBriefing: Managing the Motor Symptoms of PD

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