medication

Study: People skip Parkinson’s, Alzheimer’s meds as prices rise

March 1, 2020 Life, Research

Rising drug costs are hampering the care of patients with debilitating neurological disorders like Parkinson’s disease and Alzheimer’s, a new study finds.

Patients are less likely to fill necessary prescriptions as out-of-pocket costs increase, said senior researcher Dr. Brian Callaghan, a neurologist with the University of Michigan, in Ann Arbor.

“It’s a pretty predictable 5 percent to 10 percent drop for every $50 increase in cost,” Callaghan said.

For patients with Parkinson’s disease, not taking medications as prescribed can severely impact their quality of life, he noted.

“The Parkinson’s medicines are supposed to help make their tremors better, help them walk faster better. Theoretically, it could prevent falls and hospitalizations,” Callaghan said. “It’s not really preventing people from dying. It’s enabling people to live better and have better symptom control.”

Previous studies have shown that out-of-pocket drug costs are rising for neurologic medications, Callaghan said.

To see how these higher prices affect patient care, Callaghan and his colleagues singled out three neurologic diseases for which there are effective drugs available at a wide variety of prices:

  • Parkinson’s disease, where the drug pramipexole cost $35.90 for a 30-day supply in 2016, compared to $12.40 for the drug ropinirole.
  • Alzheimer’s disease, where a month’s supply of rivastigmine was $79.30, compared to $3.10 for the drug donepezil.
  • Peripheral neuropathy, where pregabalin cost $65.70 for a month compared to $8.40 for gabapentin.

The researchers used a private insurance claims database to track more than 80,000 patients’ prescriptions during a 15-year period, comparing how often they filled prescriptions with their out-of-pocket costs.

In 2015, the Alzheimer’s drug donepezil cost about $3 for a 30-day supply, and researchers found that people filled their prescriptions about 70 percent of the time. On the other hand, the drug rivastigmine cost about $100, and people filled those prescriptions only 45 percent of the time.

A $50 increase in out-of-pocket costs was associated with an overall 12 percent decrease in a patient’s access to Alzheimer’s medications, the researchers found.

The same pattern held for Parkinson’s patients and people with peripheral neuropathy, which causes numbness and pain, usually in the hands and feet.

“I am not surprised,” James Beck, chief scientific officer for the Parkinson’s Foundation, said of the study results. “The free Parkinson’s Foundation Helpline team hears similar stories from people with Parkinson’s disease every day. The cost of medications is a key factor in their budgets and everyday lives.”

The medication regimen for people with Parkinson’s is especially complex, “and the timing of multiple pills a day often taking into account meals is incredibly arduous,” Beck said. “Therefore, missing doses of medications will have the effect of a reduction in quality of life. People may not be able to move as well, sleep as well, or do the activities they enjoy as a result of missing their medications.”

Callaghan pointed out that medication adherence is probably even worse for patients with disorders like multiple sclerosis, where there are only a handful of medicines available and all are expensive.

Callaghan and Beck recommended that patients talk with their doctor and pharmacist if they’re struggling to pay for their medications. There could be cheaper drugs available that would work as effectively.

“For Parkinson’s disease, there are three types of medications that people often take as their first medication. The evidence suggests that starting with any of these medications leads to similar positive outcomes,” Beck said. “Therefore, people with Parkinson’s disease and their providers can work together to identify what might be the most affordable medication to start with in treating their Parkinson’s disease symptoms.”

The study was published online Feb. 19 in the journal Neurology.

Article from UPI.

Read more

Why some Parkinson’s patients develop harmful addictive behaviours

January 1, 2020 Education, Life, Research

A QIMR Berghofer study has discovered how the medications given to people with Parkinson’s disease cause some patients to develop addictive behaviours such as problem gambling, binge eating, hypersexuality and excessive shopping.

Medicines that increase dopamine levels in the brain are the cornerstone of treatment for symptoms of Parkinson’s disease. This neurodegenerative disorder damages nerve cells that produce dopamine in the deep structures of the brain.

QIMR Berghofer Medical Research Institute lead researcher and St Andrews Hospital neuropsychiatrist Dr. Phil Mosley said while dopamine replacement therapy was effective for most people diagnosed with Parkinson’s disease, about one in six people treated with the medication developed impulse-control behaviours, such as gambling.

“We found people who developed these addictive behaviours differed in the way their  interacted with dopamine-containing medication, which gave rise to the impulsive behaviour,” Dr. Mosley said.

“None of these people had a history of addictive behaviours before diagnosis and only developed them after they began treatment with dopamine-replacement medications.

“There is currently no way of predicting which individuals are at risk of these terrible side-effects.”

More than 80,000 Australians are living with Parkinson’s disease, with most people diagnosed after the age of 65, although about 20 percent are of working age, according to Parkinson’s Australia.

Dr. Mosley said the study recruited 57 people with Parkinson’s disease from St Andrews War Memorial Hospital in Brisbane, in collaboration with neurologist Professor Peter Silburn.

“We used an advanced method of brain imaging, called diffusion MRI, to reconstruct the connections between different regions of the brain, akin to developing an individualised brain “wiring” diagram for each person in the study,” Dr. Mosley said.

“We asked our participants to gamble in a virtual casino, which gave us a readout of impulsive and risk-taking behaviour in real time.

“By combining data from brain imaging, behaviour in the virtual casino, and the effect of dopamine-replacement medication, we were able to identify people who were susceptible to impulse-control behaviours.

“More broadly, we found a clear link between the strength of the connections in the brain, within circuits that we think are crucial for making decisions and suppressing impulses, and impulsive behaviour, even in people without clinically-significant impulse-control behaviours.”

Dr. Mosley said the study findings indicated that brain imaging and computer-based testing could be used in the future to determine which individuals were at risk of developing these harmful behaviours when treated with dopamine-replacement drugs.

“These disorders are often a second blow to people and their families living with Parkinson’s disease. Some individuals suffer financial problems or relationship breakdowns because of these harmful behaviours,” he said.

“We could offer targeted education to at-risk individuals, or adapt their treatment regimen to minimise the potential harms from these therapies.”

The study’s co-author Professor Michael Breakspear said the findings could also have implications for other psychiatric conditions that are marked by impulsivity, such as ADHD, alcohol and drug addiction.

Article from MedicalXpress.

Read more

Parkinson’s and depression: it’s not all in your mind

October 1, 2019 Caregivers, Education, Life

Depression is a very real and debilitating condition that many Parkinson’s disease sufferers experience. ParkinsonsLife guest writer Dr Nicola Davies explores the causes of and treatments for depression and Parkinson’s.

It’s well-documented that people who have been diagnosed with a chronic illness such as Parkinson’s are at higher risk of developing depression as well. Indeed, it’s estimated that 50% of people diagnosed with Parkinson’s will experience depression.

As Suma Surendranath, professional engagement and education manager at Parkinson’s UK, says: “Parkinson’s is a long-term progressive condition for which there is currently no cure, therefore a diagnosis can be a psychological blow for a person and those around them as they may well be concerned about what the future might hold.”

The following scenario is a common experience among many newly diagnosed Parkinson’s sufferers. First there is confusion: ‘What does this mean?’, ‘What can I do?’, ‘How will this impact me?’ Then the shock comes as the reality of the disease sets in and the impact that it will have on the rest of your life is realised. The shock gives way to grief and depression. The feeling that your life has ended and your hopes and aspirations have been shattered is less time than it takes to make a cup of tea. As one person with Parkinson’s told us, “When I was diagnosed, I came home and cried. I thought it was the end of my life.”

“There is evidence that suggests depression is an early symptom of Parkinson’s”

However, receiving a diagnosis for Parkinson’s isn’t the only factor that can cause depression in people with this condition – the very course of the disease changes the brain chemistry that usually keeps depression at bay.

Surendranath says: “Depression may occur amongst people with Parkinson’s as a result of the condition as dopamine, the neurotransmitter that becomes depleted with Parkinson’s, is [also] involved in motivation and a sense of reward.”

Experiencing depression after receiving a diagnosis of Parkinson’s isn’t a sign of emotional weakness or a flaw in character. Depression is caused by an imbalance of chemicals in the brain, which is what Parkinson’s is all about: low levels of chemicals in the brain.

There is evidence that suggests depression is an early symptom of Parkinson’s. Despite this, people with Parkinson’s aren’t routinely tested for depression and therefore might not receive treatment for the condition.

It remains unclear whether the medications prescribed to reduce the physical symptoms of Parkinson’s contribute or worsen symptoms of depression. It is also unclear how Parkinson’s affects pre-existing depression or how medication prescribed for Parkinson’s impacts pre-existing depression.

Surendranath says: “While medication, in the form of anti-depressants, can be beneficial to people with Parkinson’s it is still important to ensure that there are no adverse effects from medications interacting with each other.”

Words of hope

Depression is treatable even if it co-exists with other conditions. Depression is also limited in duration. Often, finding the right mixture and combination of drug therapy can improve both the physical symptoms of Parkinson’s and the symptoms of depression. However, it is important to know that the treatment of Parkinson’s must be comprehensive and include both the physical as well as the emotional symptoms.

Reaching out can also ease the depressive symptoms associated with Parkinson’s. As one patient told us, “I started meeting other people with Parkinson’s and it helped all of us to talk to someone who had the same condition.” There are many physical and online communities where other people with Parkinson’s can meet up virtually, or in person, and share their experiences with others who are feeling the same and suffering from similar symptoms.

Most importantly, you have to set a goal in for your life. Unless you have something to aim for, or something that drives you to get up every morning and face the day fighting, you will find yourself drifting through life. It is best to accept that you have Parkinson’s and move on.

Dr Nicola Davies holds a Master’s and a PhD in Health Psychology. She is a member of the British Psychological Society and the Division of Health Psychology. Article from ParkinsonsLife.

Read more

Radical PD treatment tested in patients

March 1, 2019 Life, Research

A radical Parkinson’s treatment that delivers a drug directly to the brain has been tested in people.

Patients in the trial were either given the drug, which is administered via a “port” in the side of the head, or a dummy treatment (placebo). Both groups showed improved symptoms, meaning it was not clear if the drug was responsible for the benefits. However, scans did find visual evidence of improvements to affected areas of the brain in those given the drug. The study’s authors say it hints at the possibility of “reawakening” brain cells damaged by the condition.

Other experts, though, say it is too early to know whether this finding might result in improvements in Parkinson’s symptoms. Researchers believe the port implant could also be used to administer chemotherapy to those with brain tumours or to test new drugs for Alzheimer’s and stroke patients.

Parkinson’s causes parts of the brain to become progressively damaged, resulting in a range of symptoms, such as involuntary shaking and stiff, inflexible muscles. About 145,000 people in the UK have been diagnosed with the degenerative condition, which cannot be slowed down or reversed.

For this new study, scientists gave patients an experimental treatment called glial cell line-derived neurotrophic factor (GDNF), in the hope it could regenerate dying brain cells and even reverse the condition. Participants underwent robot-assisted surgery to have four tubes placed into their brains, which allowed GDNF to be infused directly to the affected areas with pinpoint accuracy, via a port in their head.

After an initial safety study of six people, 35 patients took part in a nine-month “blinded” trial, where half were randomly assigned to receive monthly infusions of GDNF and the other half dummy infusions.

Dr Alan Whone, principal investigator, said patients in the trial had, on average, been diagnosed eight years previously, but brain scans of those given the drug showed images that would be expected just two years after diagnosis.

He said: “We’ve shown with the Pet [positron emission tomography] scans that, having arrived, the drug then engages with its target, dopamine nerve endings, and appears to help damaged cells regenerate or have a biological response.”

Tom Phipps, 63, from Bristol, said he had noticed an improvement during the trial and had been able to reduce the drugs he takes for his condition. Since it ended, he has slowly increased his medication but is continuing to ride his bike, dig his allotment and chair his local branch of Parkinson’s UK.

“My outcome was as positive as I could have wished for,” he said. “I feel the trial brought me some time and has delayed the progress of my condition. The best part was absolutely being part of a group of people who’ve got a similar goal – not only the team of consultants and nurses but also the participants.

“You can’t have expectations – you can only have hope.”

Following the initial nine months on GDNF or placebo, all participants had the opportunity to receive GDNF for a further nine months.

By 18 months, when all participants had received GDNF, both groups showed moderate to large improvements in symptoms compared with their scores before they started the study. But the authors say the results need to be treated with caution because of the possibility of the placebo effect – when a patient feels better despite taking a medicine with no active ingredient.

Researchers hope that further trials could look at increasing the doses of GDNF or the duration of treatment.

Experts said it was “disappointing” that the difference in symptoms was not significant. But they said the study was still of “great interest” and warranted follow up research.

The findings from the trials are published in the medical journals Brain and the Journal of Parkinson’s Disease.

The study also features in a two-part BBC Two documentary series, The Parkinson’s Drug Trial: A Miracle Cure? on 28 February and 7 March, at 21:00. (Viewable only from the UK.)

Article from BBC.

Read more

How to be a Parkinson’s Caregiver

November 1, 2018 Caregivers, Life

As any caregiver knows, Parkinson’s disease is both chronic and progressive. It persists over a long period of time and the symptoms worsen.  Often the disease has been present for many years before active care even is necessary.  This fact alone can bring many challenges along the way.  A loved one secretly may have adapted their life to this condition, hiding any symptoms.

When the time for care arises, a caregiver first has to take inventory of what is working and what isn’t.  A caregiver may have believed their loved one was perfectly fine, and come to realize the truth is far from that. A caregiver for someone with Parkinson’s must be very organized, informed, patient and able to modify daily life to any situation that may arise.

In the latter stages, it’s important for a caregiver to take a step back and not become totally entrenched in the caregiving and uninvolved in their own life. Since Parkinson’s can persist for many years, by the time the latter stage arrives, a seasoned caregiver will be an “old pro.”

Managing Symptoms

There is no “across-the-board” standard for how Parkinson’s affects any given patient. Just as everyone is different, every person’s reaction will be unique. The most common symptoms are tremors, muscle stiffness and slow movement.  These symptoms intensify as the disease progresses and alone can cause problems in daily living activities. A caregiver must be constantly evaluating what condition their loved one is in. Parkinson’s is unpredictable and a loved one may be resistant to take assistance for as long as they can hold out. This makes caregiving more complicated. However, it is their caregiver’s responsibility to help keep them, above all, safe in any environment. One important tip is to initially ask a loved one what they need, and not assume. During the latter stages, a caregiver should be familiar enough to anticipate and prepare for a loved one’s needs.

In the latter stage of the disease, movement itself becomes nearly impossible. A simple task as dressing could take a person with Parkinson’s disease literally all day to accomplish. Walking is very slow, if at all. A lack of balance causes frequent falls and automatic movements, like the swinging of arms when walking, disappear.  A caregiver should try to not be frustrated, but instead, be patient, and respond with love and humor.

As the disease progresses, communication difficulties and heightened anxiety become more prevalent. In the early stages, a loved one is able to hide symptoms easily, but as the tremors and stiffness worsen, a joke about getting older may be a good cover-up for the fact that daily duties are becoming harder and harder to handle.

What can a caregiver do? Get help!

With a loved one in the advanced stages of Parkinson’s disease, it is nearly impossible to handle it alone. Whether in-home care or out-of-home, help is necessary.  Whether in-home or a permanent move, options are available for caregivers to find some relief.  There are many kinds of caregivers, from live-in spouses to long-distance children. No matter the caregiver, a support system is mandatory!

You, the Caregiver

The National Parkinson Foundation’s publication “Caring and Coping” divides caregivers into these categories:

  • Stage One: The Expectant Caregiver
  • Stage Two: The Freshman Caregiver
  • Stage Three: The Entrenched Caregiver
  • Stage Four: The Pragmatic Caregiver

The first two stages are filled with learning. Once a caregiver is entrenched, they are knowledgeable, prepared and “in the trenches.” A caregiver in Stage Three “gets it.” The final stage, the pragmatic caregiver, has been in the thick of it for more than five years and through it all. They know what works and what doesn’t. They see Parkinson’s disease as what is was and what it has become. They laugh at things other family members may find sensitive and painful. They have become practical, realistic and are also experiencing much personal growth.

In the latter stages of Parkinson’s, it may be hard for a caregiver to find happiness in the simple moments. The major joy-killers are the everyday tasks like bathing, dressing and toileting. It’s hard to remember who a loved one was as a person pre-advanced Parkinson’s. Sometimes taking a minute to tell jokes, share stories and enjoy a fun activity will bring back the feelings of father/son, mother/daughter or husband/wife, whatever the situation.

The National Parkinson’s Foundation tells caregivers to “hang onto your sense of self.” Regular activities and routines are also important to keep, as much as possible. Emotional and physical exhaustion will only lead to more exhaustion. Finally, a caregiver needs to see themselves beyond the car giving role. It’s essential to remember individual life goals, independent of the caregiving demands. A caregiver must take time to maintain social contacts and actually schedule respite time.

Paperwork

Paperwork can be overwhelming for the average person. For a caregiver of someone with Parkinson’s, it can be frustrating and time consuming. It’s easy to lose sight of the goal and just rush to complete the tasks. From applying for benefits to doctor’s visits and financial records, it’s a very big task to take on for any caregiver.

The National Parkinson Foundation suggests caregivers take a look at the situation as a whole, using a “big picture” approach. Seeing options as working together enables caregivers to make rational, educated decisions. This frame of mind is especially important when deciding legal, financial and medical decisions for a loved one.  Take a step back, a deep breath and proceed with an open mind. The first part of the “big picture” is honesty. Don’t falsify any information on any documents. It will lead to more headaches and hassle later on by causing others to question your credibility. You want a loved one to receive the benefits he is entitled to by law.

The Foundation explains that the second part of this is consistency. When helping a loved one apply for different benefits and medical support, a caregiver must keep in mind that many programs will require the exact same documentation. The main question will be: What is a loved one’s health status at any given point?  When preparing legal documents, this may be measured against different definitions, but it is important to be truthful and consistent.  Use the big-picture approach to see how a loved one’s benefits will all fit together and what gaps may need to be filled.

Day-to-Day

The unknowns of the day-to-day caregiving are probably the most stressful for caregivers. Having systems in place of organization and support will make these situations seem less overwhelming.

Adapting the home environment is one of the major tasks any caregiver must take on. Whether at a senior residence or the person’s personal home, small changes can be made to avoid big disasters. Living areas, kitchens and bathrooms can be adapted to help the decreasing cognitive and physical abilities of a loved one with Parkinson’s. Make sure there are open pathways around the home and remove obstacles and unsteady rugs, decorations, etc. that may cause an accident. Put grab bars in bathrooms and even along hallways. Designate hot or cold on faucets with labels and colored tape. Leave items at chest or waist height so reaching won’t cause falls.

In addition to changing the environment, a caregiver must be able to help with adjustments on daily tasks such as dressing, teeth brushing, showering, etc. Confusion and unsteadiness make these seemingly standard tasks challenging. Help a loved one understand what is going on and proceed slowly, with care and compassion.

A very common symptom of Parkinson’s is “freezing.”  Help a loved one move around easier by pretending they are walking over something, or rock very slowly back and forth to get moving again. Exercise, to any degree possible, is very important to a loved one’s health and well-being. Sitting around will only make their mind-set diminish, as well as the physical aspects.

Encourage activity, communication and involvement socially as much as possible. As the disease progresses, these things will become more and more challenging to do. It’s important a caregiver encourage it when a loved one still is able to be involved.

For caregiving in the latter stages of Parkinson’s disease, challenges will arise. A caregiver should plan ahead and anticipate problems. Have paperwork done and organized. Separate tasks into smaller, manageable parts to encourage independence. The trenches won’t seem so deep then!

Article from Caregiver.com.

Read more

How to Travel (with greater ease) with Parkinson’s

July 1, 2018 Caregivers, Exercise, Life

For the average person, traveling is a minor frustration. Security lines, delays, crowded airports and cramped and long lines at snack shops and restaurants are par for the course. However, if you’re living with Parkinson’s, those things aren’t just frustrations, they can be so troublesome and aggravating to deal with that you choose to stay at home.

That’s why we decided to reach out to our Davis Phinney Foundation Ambassadors, many of whom are avid travelers, to get their best tips for traveling with Parkinson’s. Armed with this information, when you get out and about this summer, we hope you’ll do so with greater ease.

Medication Management

Managing medications topped nearly everyone’s list. Here are a few suggestions our expert travelers offered.

Bring more than you need. (And always know how to get more in a pinch.) When you’re headed out for a long trip, it’s easy to miscalculate; so, bring extra.

Put your medications in more than one location. This way if something happens with your luggage or you forget a backpack somewhere, you’re covered. Ideally, keep them in your carry-on bags or on you if possible.

Set timers or alarms on your phone so you’re always prompted to take them, even if you’re caught up in another activity.

If you’re going to be in multiple time zones, plan a consistent schedule for taking your medication. Your body doesn’t care that you started in Boston and ended up in LA – it wants Sinemet every three hours.

Sometimes travel days will stretch on and on, far beyond a typical day at home. If your awake time demands it, take an extra dose of something and make sure you account for those extra doses when packing your meds.

If you’re traveling with a companion or care partner, have them carry an extra dose of your medications.

Always carry a complete list of medications with you. And be ready to show them if asked.

Make sure at least one set of your prescriptions are in Rx bottles with labels. If someone in authority questions the contents of your pill bags or bottles and you can’t prove what the medication is, they can take them if they must.

If you have any liquid medications (e.g., the gel form of carbidopa/levodopa for the Duopa pump that’s approved in the US), you’ll need a letter from your doctor. Although you’re allowed to travel with medications greater than the three-ounce limit specified by the Transportation Safety Administration, those medications will be subject to additional scrutiny, and you’ll need the documentation from your doctor as part of that process. Be sure to keep these medications with you in your carry on. Do not put them in your checked luggage.

Planning

Consider traveling by train rather than getting trapped in those tiny airplane seats. Trains have plenty of legroom, there’s no TSA and you get an amazing view.

When buying plane, train or bus tickets, be sure to allow enough time between legs if you have to have a layover so you have the time you need—and more—to get to your next gate.

Travel when you’re at your best. For example, if you feel best in the morning because that’s when your medications offer you the best relief from symptoms, consider flying or traveling at that time.

Make a list of everything you could possibly need for your trip and save it. You might have different lists for bike rides, road trips, weekend getaways, international trips, work trips and long-term travel. Update your lists on your computer each time you travel so they’re ready to print out when you prepare for your next adventure.

Check the weather! If you need to pack a few days before you leave, and you pack for the current weather report, you could get stuck with the wrong clothes. Be sure to check again the day before you leave since weather reports change quickly, and you may need to adjust what you pack. Many people living with Parkinson’s don’t do that well in the heat or in the cold. Not having the correct clothing can be a real problem.

Put all of your paperwork in an easy to access location. This might be in the top pocket or your backpack or maybe the pocket of your pants or jacket.

Consider including in your paperwork an emergency contact list with information about your neurologist, primary care physician and other healthcare providers as well as the names and contact information of family members or other people who should be contacted in case of emergency.

If you tend to run late, avoid stress by getting to the airport extra early. Everything takes longer than you expect, so think through the steps you’ll need to take for airport security, airline boarding, baggage handling, lines at the bathroom, snack shopping, etc.

If you’re going to be out of town for a while, take a quick picture of where you parked or make a note in your phone in case you forget exactly where you left your car when you return.

Read up on flying with a disability so you know what’s available to you.

Getting Around

Carry a cane or a walking stick, even if you think you don’t need it. Stress often makes Parkinson’s symptoms worse, and travel is stressful. Even if you don’t need it, it’s a warning sign to others to not crowd you or run over you in the terminal or on the street.

Arrange for a wheelchair to get through the airport. This can help a lot in crowds or in unfamiliar places.

If you need to use a handicap bathroom, use them when you see them.

Take advantage of TSA Pre✓® and Clear.

If you need help, ask for it. If help is offered, take it. This includes having someone carry your bags, taking advantage of extra time allowed for boarding, having someone get food and bringing it to you, etc.

Take a disposable plastic grocery bag with you so you can open it up and sit on it on the plane. When you want to get out of your chair, the plastic reduces friction which makes it much easier to get out of your chair.

Practice getting in and out of your airplane seat (or any seat) before you go. One of our Ambassadors Amy Carlson made this great video to show you how to do it with greater ease.

Food & Drink

Have your food items at the ready since you need to separate them when going through security.

Fill your water bottle after security and between flights.

Bring more snacks than you think you’ll need on the plane in case you get stuck, delayed and re-routed and suddenly your two-hour flight turns into a six hour one.

Communication

Remember that communication is on the person with Parkinson’s. As Kathleen Kiddo says, “Nobody can read our cue cards so it’s our job to let them know what’s up.”

Consider wearing or traveling with a card that says something like, “I’ve got Parkinson’s and I need a bit more time and space. Thank you.”

Some people with Parkinson’s carry this card.

I'm not intoxicated, I have Parkinson's

Or this card from the Parkinson’s Foundation.

Sleep and Rest

Slow down and don’t overschedule your days. Choose the activities that are most important to you rather than trying to rush through to hit every possible spot. You will have the most enjoyable time if you learn how to conserve energy so that you have it when it matters most.

Try to time your travel so that you have plenty of time to rest once you arrive at your destination. For example, if you’re traveling to Europe, consider going a day early so you have time to get your body clock adjusted.

If you travel somewhere that has a significant time change, take a one to two-hour nap when you arrive. Go out for dinner and then go to bed at what would be a normal time for the part of the world you’re in. Immediately try to assimilate into the routine of your new environment.

Bring a sleep mask and earplugs. Many people with Parkinson’s have difficulty sleeping. Keeping a sleep mask and a pair of soft foam earplugs nearby can help you get some rest when you’re traveling. You might also consider bringing an inflatable neck pillow for additional comfort.

Clothes

Pack light and feel secure knowing that, unless you’re traveling to a remote area, you’ll be able to pick up anything you need once you reach your destination.

Travel in comfortable clothing that’s easy to get on and off in bathrooms. Slip-on shoes or sandals, shoes that don’t require you to lean over to take them off, are great for airports. And keep an extra pair of socks in your carry on for cold planes.

Wear knee-high compression socks for road trips and air travel. They keep the blood flowing and reduce swelling.

Bring a change of clothes in your carry on bag just in case.

Exercise

Consider bringing a jump rope. It travels well and it offers a great workout. It’s an aerobic and motor challenge, a great exercise for travel.

Whether in a car or on a plane or train, take time to get up and stretch every 30-45 minutes.

As much as possible, try to continue to exercise and do the things that are part of your daily routine for living well while you’re on the road. It can be a challenge when you’re in a different place and don’t have access to the same routine or equipment, but veering too far off schedule can create problems both when you’re traveling and when you arrive home. Adjust as needed, but continue to do the activities that make you feel well.

Miscellaneous

Use a label maker to put your name and cell number on loose objects, like canes.

If you don’t have a handicap placard, get one.

While you’re exploring new areas, consider checking out the local Parkinson’s offerings.  Does the place you’re visiting offer something in the way of support for people living with Parkinson’s that you don’t have where you live? If not, do they need your skills? Could you bring something to share with the community you’re visiting?

Don’t be afraid of letting your travel companion(s) know that you’re too tired to do certain activities and you just need time to rest.

If you have DBS, bring the Medtronic device wallet card (or whatever company made yours). You may be asked for it. It’s best to not try and explain DBS to security people.  Just say you have a “medical device” or even just say you have a pacemaker as that’s something they hear all the time. Remember, you can’t go through the old style security check machines or let them use wands to check you. Be prepared for a pat down.

Pay for luxuries and conveniences while traveling if you can. They’re designed to make your life easier and if you ever need that, it’s when you’re traveling.

If at all possible, travel with others who get you so well that they know when you need help and when to back off. They know when you need to rest and when you’re ready to go. And they, more than anything, can gracefully manage the unpredictability of Parkinson’s and not let it get in the way of a fabulous trip.

Maintain a sense of humor. Travel is difficult even under the easiest of circumstances. When something goes wrong, and it almost always does, the way you handle it will have a big impact on your physical and emotional well-being. Eventually, you’ll get where you need to go; so, in the meantime, have a good laugh about it.

Finally, while there’s a lot that happens when you travel that you can’t control, you can control your experience. Don’t let Parkinson’s stop you from traveling. As Jill Ater says, “Most people in the word are incredibly understanding and patient. If you like to travel, then it’s part of your living fully with Parkinson’s.”

 

Article from Davis Phinney Foundation.

Read more

New Medicare Cards

June 5, 2018 Life

When you’re enrolled in Medicare, you’ll get your red, white, and blue Medicare card in the mail. If you’re automatically enrolled, you’ll get your red, white, and blue Medicare card in the mail 3 months before your 65th birthday or your 25th month of getting disability benefits. Your Medicare card shows that you have Medicare health insurance. It shows whether you have Part A (Hospital Insurance), Part B (Medical Insurance) or both, and it shows the date your coverage starts.

Be sure to carry your card with you when you’re away from home. Let your doctor, hospital, or other health care provider see your card when you need hospital, medical or other health services.

new medicare card

New Medicare cards are coming

Medicare is mailing new Medicare cards to all people with Medicare now. Find out more about when your card will mail.

View an example of the current card.

10 things to know about your new Medicare card

  1. Your new card will automatically come to you. You don’t need to do anything as long as your address is up to date. If you need to update your address, visit your mySocial Security account.
  2. Your new card will have a new Medicare Number that’s unique to you, instead of your Social Security Number. This will help to protect your identity.
  3. Your Medicare coverage and benefits will stay the same.
  4. Mailing takes time. Your card may arrive at a different time than your friend’s or neighbor’s.
  5. Your new card is paper, which is easier for many providers to use and copy.
  6. Once you get your new Medicare card, destroy your old Medicare card and start using your new card right away.
  7. If you’re in a Medicare Advantage Plan (like an HMO or PPO), your Medicare Advantage Plan ID card is your main card for Medicare—you should still keep and use it whenever you need care. And, if you have a Medicare drug plan, be sure to keep that card as well.  Even if you use one of these other cards, you also may be asked to show your new Medicare card, so keep it with you.
  8. Doctors, other health care providers and facilities know it’s coming and will ask for your new Medicare card when you need care, so carry it with you.
  9. Only give your new Medicare Number to doctors, pharmacists, other health care providers, your insurers, or people you trust to work with Medicare on your behalf.
  10. If you forget your new card, you, your doctor or other health care provider may be able to look up your Medicare Number online.

For more information, visit Medicare.gov. 

Read more

Deep Brain Stimulation for Parkinson Disease

June 5, 2018 Education, Life
This article appeared in the Spring 2018 issue of The Network magazine.

Deep brain stimulation (DBS) is an advanced therapy for patients with Parkinson disease (PD) suffering from complications of carbidopa/levodopa treatment. It has been FDA approved for use in PD since 2002 and for tremor prior to that. DBS involves the surgical implantation of a device with electrodes that deliver electrical signals to specific areas within the brain. Once the electrodes are placed, they are then connected to an implanted pulse generator (battery) which is placed under the skin, typically in the chest. When the device is activated, it delivers regular electrical pulses to that area of the brain and results in improvement of PD symptoms. The exact mechanisms of how DBS improves symptoms are not known. However, we do know that it disrupts pathological signals that occur within the brain of PD patients.

Currently, DBS is approved for those patients with a diagnosis of idiopathic PD, who have had symptoms for four or more years and suffer from motor complications that are not controlled with medications. Motor complications refer to the medications not lasting as long (wearing off), levodopa induced dyskinesias (extra, abnormal and involuntary movements) and dose failures.

Individuals who would not benefit from DBS are those with atypical forms of PD, those with signs of dementia and those whose symptoms do not improve with levodopa. Depression and anxiety do not preclude someone from receiving DBS, but these should be addressed, treated and well controlled prior to proceeding.

The process of implanting DBS for patients is a lengthy process. It involves careful pre-surgical screening, two or three surgeries and many follow up programming appointments. The first step is what is called an “Off/On Test.” For this test, the patient comes to an appointment with the neurologist after not taking PD medications from the night before. The patient is then examined in this “Off” medication state. Then, the patient receives a higher than usual dose of carbidopa/levodopa and then re-examined once those take effect.

The next step is to have a formal neuropsychological evaluation performed. This evaluation typically takes about a half of a day and includes extensive testing of memory, language and other cognitive abilities. Once these two preliminary evaluations are complete, most DBS centers hold a multi-disciplinary case conference to discuss these results and the patient’s candidacy for DBS surgery. If there are no contraindications to surgery, the patient will meet with the neurosurgeon who reviews the procedure and the potential risk of surgery. Often times, an additional pre-operative medical evaluation is also required to screen for other medical conditions that could pose additional surgical risks or potential complications. The patient also receives a pre-surgical MRI of the brain to assist with placement of the DBS electrodes.

Most centers perform DBS implantation in two or three individual surgeries. After the DBS device is implanted, the patient then returns to the clinic to turn the device on, typically after three or four weeks. The number of programming appointments needed varies from one patient to the next but can take 6-12 months to reach optimal settings. The battery is checked at routine follow-up appointments and depending on which device is implanted, the battery will need to be replaced from time to time.

Not all symptoms of PD will improve from DBS therapy. The general rule of thumb is if particular symptoms improve after taking carbidopa/levodopa then those symptoms can be expected to improve with DBS. The caveat to this rule are refractory tremors. Tremor in PD can often be resistant to carbidopa/levodopa, but responds well to DBS. In addition, DBS can significantly reduce problems with medication wearing off and dyskinesias. Walking difficulties in PD can be varied and complex. Some of these may respond to DBS but many do not, including balance. Therefore, patients should consult with their DBS physician prior to surgery in regard to their specific walking issues.

Symptoms that are unlikely to improve with DBS are those symptoms that worsen with levodopa, balance, memory problems, speech and swallowing difficulties. DBS can also allow the reduction of some of the PD medications, although it is not realistic to expect to stop all PD related medications after surgery.

It is important to understand that DBS is not a cure however, it is very effective at treating many motor symptoms of PD and improving quality of life.

Ryan T. Brennan, D.O. is an assistant professor in the Department of Neurology at Medical College of Wisconsin.

Read more

Lifestyle Changes in Improving Quality of Life in PD Patients

February 1, 2018 Exercise, Life

In this video, Susan H. Fox, MB ChB, MRCP(UK), PhD discusses the importance of lifestyle in dealing with PD, emphasizing the importance of sleep and exercise.

 

Video from Panorama Patient Network.

Read more

Duopa device among newer treatments for Parkinson’s disease

January 1, 2018 Awareness, Life, Research

Until August, Kern Jackson avoided going out in public.

Parkinson’s disease had progressed far enough that the levadopa pills he’d taken since 2008 weren’t as reliable to ease the symptom of his muscles freezing up. In the past two years, he had to take the medicine more frequently as it wore off quickly, leaving him unable to move.

“I was taking pills every two hours, and during the night,” said Jackson, 70, a retired physician who lives in Medical Lake. “It would take 20 to 45 minutes to be effective, then I’d be moving normally for about an hour. It was hard to plan to do anything.”

So in August, Jackson chose to get a newer Duopa device through Dr. Jason Aldred, a neurologist at Northwest Neurological. The Spokane clinic partners with Inland Imaging, where patients go in for an outpatient procedure to make a small incision in the stomach wall and insert a tube in the small intestine.

The external Duopa device has a pump for continuous delivery via the tube of a levadopa gel, contained in a medication cartridge that patients reload once a day into the device.

According to Aldred, the Duopa device first became available in 2015 after U.S. Food & Drug Administration approval, and it’s among a couple of newer developments for Parkinson’s treatment. The clinic also is participating in two clinical research trials that are attempting to slow disease progression.

The day after his outpatient procedure, Jackson saw Aldred at Northwest Neurological to program the system’s medicine dosage. Clinic staff observed Jackson’s movements for a day during office hours to make sure the new system was syncing correctly for his ability to get around.

Jackson now wears the device in a belted pack around his waist, and he said it’s helped him be more active. He and his wife, Diana, have since traveled by airplane and walked on the Centennial Trail.

“I feel much more confident going somewhere,” Jackson said. “I just went to a men’s retreat in Idaho with my son-in-law, and things went well.”

Although estimates vary, about 1 million people in the U.S. live with the disease, according to the Parkinson’s Foundation. Symptoms include tremor, rigidity, extreme slowness of movement and impaired balance.

Levadopa, now used for more than 50 years to treat Parkinson’s, is often considered the most effective for treatment of motor symptoms.

“Levadopa is turned into dopamine in the brain and replaces dopamine,” Aldred said “That’s huge because dopamine is the natural chemical in the brain that’s low in Parkinson’s patients, so we literally have the ability to replace something that’s low to bring about remarkable improvement in movement, stiffness and tremor.

“However, it doesn’t slow the progression. It treats symptoms remarkably for years or decades. Parkinson’s progresses slowly, but it does progress, and it can cause horrible quality of life issues.”

The Duopa device is offered as a choice for some patients with moderate to advanced Parkinson’s if levadopa in a pill form becomes less reliable, Aldred said. Other patients might be candidates for deep brain stimulation, a therapy that’s been around since 1997, he said.

“As the disease advances for moderate to advanced Parkinson’s, the medicine kicks in and wears off,” said Aldred, adding that also long-term, the disease affects other nerves outside of the brain including in the stomach, so medicine is less effectively moved into the small intestine for absorption.

“We call it dose failure,” he said. “That’s actually a big problem; the medicine is sitting in the stomach and doesn’t move. With the Duopa device, the tube mechanically bypasses the stomach and goes into the small intestine, and the medicine is released physically past the stomach.”

Aldred said the Duopa device is new enough that, so far, just over 30 of its clinic patients have one.

“This is a very new treatment and largely people are slow to warm up to it,” he said, adding that some people might have a stigma about having a tube inserted, a procedure that’s sometimes associated with end-of-life issues.

The small amount of tubing that’s external is flexible, Aldred said, and it’s hidden often under clothing. It can be disconnect for up to two hours if needed.

However, Aldred said current treatments, including Duopa, only partially relieve symptoms, so the two research trials are attempting approaches that might slow or stop the disease’s progression.

Both trials are seeking to stem what is thought to damage cells in the brain that regulate behavior, cognition and movement. A main research focus is finding a way to stop or clear out Lewy bodies, which are abnormal aggregates of protein that develop inside nerve cells in Parkinson’s.

“We have some interesting, cutting-edge NIH, Michael J. Fox Foundation-affiliated clinical research trials,” Aldred said.

One is a vaccine trial using anti-bodies in an attempt that might prevent the spread of Lewy bodies in the brain. A second phase of that study started this month involving a handful of clinic patients.

The other trial will test Nilotinib, a FDA-approved medicine used in treatment for a form of leukemia, but with a fraction of the dose applied for patients with mild Parkinson’s.

“This is a medication that may enhance the clearing of Lewy Bodies from the brain that we think is destructive,” Aldred added.

“We’re trying to get to the point before it spreads,” he said. “That’s a novel way of treating Parkinson’s. These two trials if they’re proven to work, which they haven’t been yet, may be safe and effective ways to slow the disease progression or potentially halt the disease progression.”

There’s also a new device that came out this year for deep brain stimulation, Aldred said. “It was developed by St. Jude’s Medical (since acquired by Abbott). We can aim the electrical current more precisely in the brain to get better effect.”

The DBS treatment requires surgery to implant a wire with four electrodes that deliver an electrical current in the brain to regulate abnormal impulses and smooth out “on time” and “off time” experienced by patients as the impact of medication rises and falls.

The DBS treatment and the Duopa device haven’t been studied head to head on whether one is more effective than the other, Aldred said.

“If someone has moderate cognitive issues, we’d never want to do DBS,” he said.

Alternatively, he added that the Duopa device might be a choice for some patients who aren’t comfortable with DBS.

“I tell patients this is a heavy diagnosis, but there is lot we can do, and one of the things is exercise, ” said Aldred, who encourages physical therapy and regular exercise to maintain better movement and quality of life.

 

Article from The Spokesman-Review.

Read more

Wisconsin Parkinson Association Mission

Our mission is to provide hope, community, support, and resources for people with Parkinson’s and their loved ones.

Contact

13400 Bishops Lane
Suite 120
Brookfield, WI 53005
414.312.6990
[email protected]
Follow Us On Facebook

View Our Annual Report

Click here to view Wisconsin Parkinson Association’s 2021-2022 Annual Report.

Search Our Site

Copyright Wisconsin Parkinson Association 2023