Category Archives: Treatments

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?

GOING FOR THE CHOCOLATE

I am part of an internet support group. The question was posed on the discussion board: “I was wondering if craving sweets is an unusual symptom of Parkinson’s Disease. I am still trying to get acquainted with the ever transforming symptoms of the problem.”

The following replies were posted: “I just got back from the store with a gallon of ice cream, a package of Pepperidge Farm Milano cookies, a chocolate pie and 3 bottles of Magic Shell… so I would have to say yes to your question.”

That reply was followed by another: “Let’s see- 3 bags of chocolate covered raisins, a big dark chocolate bar, chocolate ice cream, and chocolate covered donuts…”

The honest to goodness truth of the matter is, Parkinson’s disease takes a lot from a person. It takes your independence, for one. It takes the spring in your step for another and leaves you with an awkward shuffle instead. It takes the swing in your arm and leaves it motionless. It takes a happy mood and leaves you snappy and swift to bite back. And it takes your sense of smell and leaves you thankful you can no longer smell certain odors. However, while it can and often does take away your sense of taste, that leaves you with a greater sweet tooth.

Now, one can grumble against such losses and complain to those who will stop to listen, but you’ve gotta admit– this is a priceless gift, however expensive this one, wonderful luxury may turn into.

Who could ever imagine such an extraordinary blessing? We don’t need excuses or reasons stretched far and wide, stuffed with lies in order to engage in such a once formidable past time such as sitting by the pool side and eating decadent See’s Candies milk chocolate covered Bordeux’s, sprinkled with chocolate jimmies, washed down smoothly with an iced-cold Starbuck’s chocolate mocha. We need no excuse! We have Parkinson’s disease. And I say, if you’ve got it, flaunt it. Take advantage of each and every blessing it affords you. You’ve gotta start somewhere. Go for the chocolate.

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.”

Day 22: Parkinson’s Disease and Dementia, Part 2

Although Parkinson’s disease is widely known as a movement disorder, people are becoming well aware that it can (and does) include dementia along with its already too long list of symptoms that develop as the disease progresses.  More commonly associated with tremors and rigidity, dystonia and more, people with Parkinson’s have a six times greater risk of developing dementia than others.

Dementia is described as a significant loss in brain function, and can include memory issues, a slowing down of one’s thought processes, concentration diifficulties, apathy, and hallucinations. It also tends to be less common in the initial stages of early onset Parkinson’s (you get to have it longer but at least you may not have to deal with the dementia aspect as soon).  However, as you gain birthdays, your chances of dementia gaining ground increases. So, stop having birthdays. 
 
There are two types of dementia the Parkinson’s patient looks at (why bother with more – two’s already two too many) – Parkinson’s dementia and  dementia with Lewy bodies.  

If a patient with PD develops dementia at least a year after the onset of motor symptoms that are related to PD, this is known as Parkinson’s dementia. If symptoms of dementia appear before or at the same time as Parkinson’s symptoms, this is known at Lewy body dementia. Much like Parkinson’s disease, symptoms vary from patient to patient according to variables present. 

Those who go on to develop dementia in PD, in addition to motor problems, have a greater deterioration in their attention, an inability to judge the environment around them, and struggle with their ability to be flexible. Their memory problems, however, are not as severe as those found in people with Alzheimer’s disease.  

Though those with dementia and having Parkinson’s disease may not endure the severity of memory issues as those of an Alzheimer’s patient, they do have to deal with changes in their attention span, cognition (the activities of thinking, understanding, learning, and remembering) and their ability/inability to carry out tasks. They also frequently deal with having hallucinations and sleep disturbances.

Having symptoms of mild cognitive impairment (MCI) in/with Parkinson’s disease is not uncommon and it is estimated that one-quarter to one-third of people (some research shows a whopping 50-60% but for now we’ll ignore those numbers as 40% tends to be high enough) with the disease have (or will have) MCI. Research also shows that 80% of patients who have had PD 20 years +, will have have developed dementia. Take into consideration that most people are diagnosed after the age of 65… Let’s not even go there for YOPD…

Most all patients with Parkinson’s disease have been concerned at one time or another as to whether or not they will develop dementia. Research has shown that MCI can help to identify early signs of demetia in people with PD, quickening the onset of treatment.

There is evidence that treatment with rivastigmine can greatly improve the symptoms of dementia for a period of time, controling the symptoms of dementia and having a positive effect on them. There are other meds available to control symptoms

In part one of Parkinson’s Disease and Dementia, we talked about those little monsters called ‘Lewy bodies’. It is believed that only a small minority of people with Parkinson’s do not have Lewy bodies. In early stages, they are mainly found in the middle part of the brain – also known as ‘middle brain’ in the Hobbit world. Later, the Lewy bodies spread to other areas of the brain, thus earning the name ‘little monsters’.

Come back tomorrow for part three of Parkinson’s Disease and Dementia where we’ll talk about the havoc those little monsters wreak called ‘hallucinations‘. Shoud be boatloads of fun…

 

 

New Drug Approved for PD Patients with Orthostatic Hypotension

This recently in from:

Yesterday the U.S. Food and Drug Administration approved the drug Northera — the brand name for droxidopa — to treat orthostatic hypotension in Parkinson’s patients.

Learn more about the FDA’s decision.

This approval after a lengthy review process is a true victory for people with Parkinson’s experiencing this common and debilitating symptom. Orthostatic hypotension is a sudden drop in blood pressure when standing, which can cause dizziness, falls and injury.

Since taking Northera can raise blood pressure when lying down, users are cautioned to sleep with their head and upper body elevated.

 

 

Related Posts Plugin for WordPress, Blogger...