Life

Caregivers: Caregiving Issues Facing the Multi-Generational Family

September 1, 2018 Caregivers, Life

There are many family situations today where you can find three, four or even five generations living under one roof. While the circumstances that result in multi-generational living vary from financial to health-related to simple family closeness, those who live in these types of households deal with many issues. Serving as the main caregiver for an older relative, dealing with grandchildren and having one of their own children living back at home after several years on his/her own can be a challenge for the best of families.

In dealing with your older relative, the most critical aspect is not just tending to their physical needs, but providing them with the emotional support they require as well. Often, it is coping with these emotional needs that is most time consuming and stressful. Family members often ask “How do I talk to my relative about. . . “(You fill in the blank.) The answer is “Not easily.”

Remember, your job is to help your older relative make informed, reasonable decisions for themselves, not to make the decision for them. It is also important to realize that they may be frightened about their overall condition, and that this frightened state is relayed through anger toward YOU, the main caregiver. It is crucial to keep the lines of communication open between the generations so that both of you can express your fears and concerns as honestly as possible. You may also wish to gain as much knowledge as possible regarding the older person’s condition so that you know what to expect of them now and in the future. In that way, you can let them maintain their sense of independence and well-being and provide the needed care when it becomes necessary.

Children, even at an early age, can be asked to take on family responsibilities. They can be very helpful and resourceful. They can perform everyday chores like cleaning and help in preparation of meals and laundry. They can also help Grandma or Grandpa by sitting with them, reading together or watching TV, among other things. By involving children, you are giving them an honest look into the daily caregiving process and you open the door to start a dialogue about aging issues in general.

The relationship between an older relative and a child is invaluable in that the older person provides educational and historical information that is passed on to another generation and the child can give new and fresh insight on things for the older person.

When an older relative begins to fail, either mentally or physically, it can be very confusing and sometimes frightening for a child. There are many resources geared specifically for children that explain the aging process. Children are seen as extremely therapeutic assets as families deal with the daily issues associated with the care of a relative.

Older relatives can also be an invaluable resource to their grandchildren. They can serve as educators, story tellers and, in many instances, serve as the primary providers of care to their grandchildren. Many older people end up “raising” their grandchildren due to a variety of circumstances. These older relatives struggle not only with the daily demands of care needed by their grandchildren, but also with the concerns and struggles that their own children (the grandchildren’s parents) face and their own health and financial issues.

Those who are in the “sandwich generation” often are faced with the daily demands of care needed by their parents or older relatives AND are responsible for the raising of their own children. In addition, they may have to deal with their own health and financial worries. Other responsibilities faced by this generation include the demands of a work schedule and their relationship with a spouse or significant other, in addition to their ongoing relationship with siblings and close friends.

Regardless of their age, there are many instances where the main caregiver in the family refuses to acknowledge that they can’t handle the load. They are too caught up in the daily grind that they don’t recognize the warning signals, which can include extreme fatigue, lack of rest, irritability, and frustration over lack of free time. Letting others know your feelings and that you need help is crucial to the caregiver’s mental and physical well-being.

It is also important to negotiate the exact roles of each family member in terms of providing care. Some may feel more comfortable with hands-on duties – others may want to only focus on household chores or helping with transportation or financial and legal issues.

There are many instances where the care receiver is very stubborn and resistant to any help, even from family members. In these cases you need to be FIRM in expressing the reality of the situation and that the person needs assistance. It is particularly important for those living in multi-generational households who often are providing 24 hours a day/7 days a week care to have an occasional respite break.

With family members living longer, many individuals are faced with the prospect of being a caregiver for a significant number of years. More and more families are opting to live in a mutli-generational household for a variety of reasons, including providing care for a loved one. It is important for the family to recognize that, in many cases, they will not be able to tend to all the needs of their relative, and that they will have to rely on others for occasional support. The support is available – just ask.

Information from Today’s Caregiver.

5 TED talks for people with Parkinson’s

August 1, 2018 Awareness, Life

TED Talks – an online series where expert speakers share their knowledge – has covered a wide range of Parkinson’s-related topics. We’ve picked some of our favourites:

1. Emma Lawton: Is confidence in my DNA?
Four years ago, creative director Emma Lawton was diagnosed with young-onset Parkinson’s at the age of 29. In this talk, Emma takes a look at how her own upbringing has shaped her confidence when dealing with her condition.

2. John McPhee: Walk smarter – living with Parkinson’s
John McPhee discusses his Parkinson’s journey, from his life changing diagnosis to his newly found passions. He has never let Parkinson’s take control of his life, and refuses to stop raising awareness about the condition.

3. Eleftheria K. Pissadaki: A mathematical model for predicting Parkinson’s
Research neurologist Eleftheria K. Pissadaki has dedicated her working life to brain disease, neurodegeneration and the etiopathology of Parkinson’s. In this talk, she assesses neurological electrical problems and their connection to Parkinson’s.

4. Erin Smith: Smile to see if you have Parkinson’s disease.
Erin Smith is a high school senior and founder of medical app FacePrint – a tool that uses facial recognition to detect early stages of Parkinson’s. Erin talks frankly about the inspirations behind her work – and how she got to where she is today.

5. David Denton – Compulsive Creativity and Parkinson’s disease
When David Denton was diagnosed with Parkinson’s he found himself with an urge for creative expression. He explains these impulses and shares some of the work that he has created since developing the condition.

Article from Parkinson’s Life.

Contact sports increase Parkinson disease risk

August 1, 2018 Awareness, Life, Research

Injuries from playing contact sports, such as rugby, boxing, and martial arts, have been linked to a heightened risk of dementia. A new study now says that contact sports may actually lead to other neurodegenerative diseases, and it explains why.

At Medical News Today, we have covered studies linking brain injury — usually as a result of playing contact sports — with a higher risk of developing various conditions later in life.

One such study argued that brain injuries could accelerate the processes that bring about Alzheimer’s disease, which is the most common type of dementia. It is characterized most prominently by memory loss, a sense of disorientation, and an impaired ability to carry on a daily routine.

Numerous studies during the past few years have suggested that repeated head injuries obtained from participation in contact sports are linked to chronic traumatic encephalopathy (CTE), which is a degenerative brain disease that can lead to dementia.

Now, a study led by researchers from the Boston University School of Medicine in Massachusetts has found that people engaging in contact sports may also be more likely to develop Lewy body disease.

In that condition, a protein called alpha-synuclein forms abnormal deposits known as Lewy bodies in the brain. Lewy body disease is associated with dementia symptoms, as well as with Parkinson’s disease.

Traditionally, scientists have believed that the motor symptoms — such as tremors, slowness of movement, and difficulty walking — experienced by some athletes are attributable to CTE.

However, the researchers argue instead that those symptoms are actually a byproduct of Lewy body disease, independently of CTE.

“We found the number of years an individual was exposed to contact sports, including football, ice hockey, and boxing, was associated with the development of neocortical [Lewy body disease], and Lewy body disease, in turn, was associated with Parkinsonism and dementia,” says study author Dr. Thor Stein.

The researchers’ findings are now published in the Journal of Neuropathology and Experimental Neurology.

Risk increased in long-term sports players

Dr. Stein and team drew their conclusions after studying 694 donated brains from three sources: the Veteran’s Affairs-Boston University-Concussion Legacy FoundationBrain Bank, Boston University Alzheimer’s Disease Center, and the Framingham Heart Study.

They found that the total number of years that a person had spent playing contact sports was associated with an increased risk of developing Lewy bodies in the cerebral cortex.

People who participated in contact sports for over 8 years had the greatest risk of developing Lewy body disease — six times higher, in fact, than the increase in risk seen in people who had played contact sports for 8 years or under. Moreover, people who had both CTE and Lewy body disease had a higher risk of dementia and Parkinson’s than those who only had CTE.

These findings may not be surprising. After all, as the authors note, previous research had already shown that the number of years spent playing contact sports can be used to predict the severity of dementia-related pathology, as well as the severity of CTE in former players.

This research, the scientists add, builds on data provided by existing studies, though further efforts should be made to ascertain, with more exactitude, the health risks to which repeated brain injuries expose athletes.

“Future studies incorporating more participants with neocortical [Lewy body disease] and contact sports play will be necessary to more accurately determine the best threshold and risk of contact sports participation,” the researchers write.

Article from Medical News Today.

Caregivers: Important discussion topics to have with your loved one

August 1, 2018 Caregivers, Life

A care partner is an essential, active participant with the person with Parkinson’s in their care. While most care partners are spouses, children, siblings, parents and even friends can all be considered care partners. As your loved one living with Parkinson’s becomes less independent and more reliant on your care, your role as a care partner transitions to caregiver.

As a care partner, you are an essential member of the care team supporting the person in your life living with Parkinson’s. Your role as a care partner will evolve over the years and asking questions will help you and your loved one have an ongoing conversation about how to best partner in care to encourage you both to live well.

Here are some important discussion topics to have with your loved one:

Communicate often with your loved one to help them understand and accept your concerns and desire to help and support them. Talk about how much you expect or wish to be involved in care. Care partners typically have the most frequent and ongoing involvement in the lives of people with Parkinson’s. This brings both benefits and challenges as you will often notice effects of Parkinson’s that your loved one may not be aware of. You may find yourself feeling frustrated as you encourage your loved one with Parkinson’s to do activities to help them live well that they may not necessarily want to do, such as exercising, speaking louder or attending an appointment with a healthcare professional.
Talk about how much you expect or wish to be involved in care. Transitioning from spouse, child, parent or even friend to care partner can change your relationship with your loved one with Parkinson’s. It is important to have discussions with your loved one with Parkinson’s and the rest of the care team about everyone’s expectations about your involvement in your loved one’s care and your relationship outside of serving as a care partner.
Set up rules or even agree on a “catch phrase” that your loved one with Parkinson’s can use to let you know when they feel that your guidance and encouragement may be feeling like nagging or too much pressure.
Speak up during medical appointments. You, as the care partner, are both significantly impacted by Parkinson’s and very familiar with the effects it has on your everyday lives. If your typical medical appointments focus only on the person with Parkinson’s, let the Parkinson’s healthcare provider know that you are an active member of the care team and will be contributing during the appointments as well. Writing down the three most important things that you would like your partner’s medical provider to address is another practical step to ensuring your concerns are heard by healthcare providers.

Information from Davis Phinney Foundation.

Video: Not all disabilities are visible

July 1, 2018 Awareness, Education, Life

In this video from Parkinson’s UK, people all over the world talk about their Parkinson’s.

Driving Dilemmas: Risk vs. Independence

July 1, 2018 Caregivers, Life

Driving a car is a symbol of independence and competence and is closely tied to an individual’s identity. It also represents freedom and control and allows older adults to gain easy access to social connections, health care, shopping, activities and even employment. At some point, however, it is predictable that driving skills will deteriorate and individuals will lose the ability to safely operate a vehicle. Even though age alone does not determine when a person needs to stop driving, the decision must be balanced with personal and public safety. Driving beyond one’s ability brings an increased safety risk or even life-threatening situations to all members of society. Statistics show that older drivers are more likely than others to receive traffic citations for failing to yield, making improper left turns, and running red lights or stop signs, which are all indications of a decrease in driving skills. Understandably, dealing with impaired older drivers is a delicate issue.

The road to driving cessation is anything but smooth. Each year, hundreds of thousands of older drivers across the country must face the end of their driving years and become transportation dependent. Unfortunately, finding other means of transportation has not noticeably improved in recent years, leading to a reluctance among older drivers to give up driving privileges and of families to remove the car keys. The primary issue facing older drivers is how to adapt to changes in driving performance while maintaining necessary mobility. Despite being a complicated issue, this process can be more successful when there is a partnership between the physician, older driver, family or caregiver.

Dramatic headlines like these have ignited national media debates and triggered the pressing need for more testing and evaluation of elderly drivers, especially with the swell of the Baby Boomer generation: “Family of four killed by an 80-year-old man driving the wrong way on Highway 169. 86-year-old driver killed 10 people when his vehicle plowed through a farmers’ market in southern California. 93-year-old man crashed his car into a Wal-Mart store, sending six people to the hospital and injuring a 1-year-old child.”

According to the Hartford Insurance Corporation, statistics of older drivers show that after age 75, there is a higher risk of being involved in a collision for every mile driven. The rate of risk is nearly equal to the risk of younger drivers ages 16 to 24. The rate of fatalities increases slightly after age 65 and significantly after age 75. Although older persons with health issues can be satisfactory drivers, they have a higher likelihood of injury or death in an accident.

Undoubtedly, an older adult’s sense of independence vs. driving risk equals a very sensitive and emotionally charged topic. Older adults may agree with the decline of their driving ability, yet feel a sense of loss, blame others, attempt to minimize and justify, and ultimately may feel depressed at the thought of giving up driving privileges. Driving is an earned privilege and in order to continue to drive safely, guidelines and regulations must be in place to evaluate and support older drivers.

Dementia and Driving Cessation

Alzheimer’s disease and driving safety is of particular concern to society. Alzheimer’s disease (AD) is the most common cause of dementia in later life and is a progressive and degenerative brain disease. In the process of driving, different regions of the brain cooperate to receive sensory information through vision and hearing, and a series of decisions are made instantly to successfully navigate. The progression of AD can be unpredictable and affect judgment, reasoning, reaction time and problem-solving. For those diagnosed with Alzheimer’s disease, it is not a matter of if retirement from driving will be necessary, but when. Is it any wonder that driving safety is compromised when changes are occurring in the brain? Where dementia is concerned, driving retirement is an inevitable endpoint for which active communication and planning among drivers, family, and health professionals are essential.

Current statistics from the Alzheimer’s Association indicate that 5.3 million Americans have Alzheimer’s disease (AD) and this number is expected to rise to 11-16 million by the year 2050. Many people in the very early stages of Alzheimer’s can continue to drive; however, they are at an increased risk and driving skills will predictably worsen over time. The Alzheimer’s Association’s position on driving and dementia supports a state licensing procedure that allows for added reporting by key individuals coupled with a fair, knowledgeable, medical review process.

Overall, the assessment of driving fitness in aging individuals, and especially those with dementia, is not clear cut and remains an emerging and evolving field today.

Physician’s Role in Driving Cessation

While most older drivers are safe, this population is more prone to vehicle accidents due to decreased senses, chronic illness and medication-related issues. The three primary functions that are necessary for driving and need to be evaluated are: vision, perception, and motor function. As the number of older drivers rises, patients and their families will increasingly turn to the physicians for guidance on safe driving. This partnership seems to be a key to more effective decision-making and the opinions of doctors vs. family are often valued by older drivers. Physicians are in a forefront position to address physical, sensory and cognitive changes in their aging patients. They can also help patients maintain mobility through proper counseling and referrals to driver evaluation programs. This referral may avoid unnecessary conflict when the doctor, family members or caregivers, and older drivers have differing opinions. (It should be noted that driver evaluation programs are usually not covered by insurance and may require an out-of-pocket cost.)

Not all doctors agree that they are the best source for making final decisions about driving. Physicians may not be able to detect driving problems based on office visits and physical examinations alone. Family members should work with doctors and share observations about driving behavior and health issues to help older adults limit their driving or stop driving altogether. Ultimately, counseling for driving retirement and identifying alternative methods of transportation should be discussed early on in the care process, prior to a crisis. Each state has an Area Agency on Aging program that can be contacted for information, and referrals can be made to a social worker or community agency that provides transportation services.

Resources do exist to help physicians assess older adults with memory impairments, weigh the legal and ethical responsibilities, broach the topic of driving retirement and move toward workable plans. The Hartford Insurance Corporation, for example, offers two free publications that make excellent patient handouts: At the Crossroads: A Guide to Alzheimer’s Disease, Dementia and Driving and We Need to Talk: Family Conversations with Older Drivers.

These resources reveal warning signs and offer practical tips, sound advice, communication starters, and planning forms. Other resources can be found through the Alzheimer’s Association. Physicians can also refer to the laws and reporting requirements for unsafe drivers in their state and work proactively with patients and their families or caregivers to achieve driving retirement before serious problems occur. Ultimately, assessing and counseling patients about their fitness to drive should be part of the medical practice for all patients as they age and face health changes.

Driver’s Role in Driving Cessation

“How will you know when it is time to stop driving?” was a question posed to older adults in a research study. Responses included “When the stress level from my driving gets high enough, I’ll probably throw my keys away” and “When you scare the living daylights out of yourself, that’s when it’s time to stop.” These responses are clues to a lack of insight and regard for the social responsibility of holding a driver’s license and the critical need for education, evaluation and planning.

Realizing one can no longer drive can lead to social isolation and a loss of personal or spousal independence, self-sufficiency, and even employment. In general, older drivers want to decide for themselves when to quit, a decision that often stems from the progression of medical conditions that affect vision, physical abilities, perceptions and, consequently, driving skills. There are many things that an older adult can do to be a safe driver and to participate in his or her own driving cessation.

The Centers for Disease Control and Prevention suggest that older adults:

Exercise regularly to increase strength and flexibility.
Limit driving only to daytime, low traffic, short radius, clear weather
Plan the safest route before driving and find well-lit streets, intersections with left turn arrows, and easy parking.
Ask the doctor or pharmacist to review medicines—both prescription and over-the counter—to reduce side effects and interactions.
Have eyes checked by an eye doctor at least once a year. Wear glasses and corrective lenses as required.
Preplan and consider alternative sources and costs for transportation and volunteer to be a passenger

Family’s or Caregiver’s Role in Driving Cessation

Initially, it may seem cruel to take an older person’s driving privilege away; however, genuine concern for older drivers means much more than simply crossing fingers in hopes that they will be safe behind the wheel. Families need to be vigilant about observing the driving behavior of older family members. One key question to be answered that gives rise to driving concerns is “Would you feel safe riding along with your older parent driving or having your child ride along with your parent?” If the answer is “no,” then the issue needs to be addressed openly and in a spirit of love and support. Taking an elder’s driving privileges away is not an easy decision and may need to be done in gradual steps. Offering rides, enlisting a volunteer driver program, experiencing public transportation together, encouraging vehicle storage during winter months, utilizing driver evaluation programs and other creative options, short of removing the keys, can be possible solutions during this time of transition.

Driving safety should be discussed long before driving becomes a problem. According to the Hartford Insurance survey, car accidents, near misses, dents in the vehicle and health changes all provide the chance to talk about driving skills. Early, occasional and honest conversations establish a pattern of open dialogue and can reinforce driving safety issues. Appealing to the love of children or grandchildren can instill the thought that their inability to drive safely could lead to the loss of an innocent life. Family members or caregivers can also form a united front with doctors and friends to help older drivers make the best driving decisions. If evaluations and suggestions have been made and no amount of rational discussion has convinced the senior to cease driving, then an anonymous report can be made to the Department of Motor Vehicles in each state.

According to the Alzheimer’s Association, strategies that may lead to driving cessation when less drastic measures fail include:

Family meetings to discuss issues and concerns
Disabling or removing the car
Filing down the keys
Placing an “Expired” sticker over the driver’s license
Cancelling the vehicle registration
Preventing the older driver from renewing his or her driver’s license
Speaking with the driver’s doctor to write a prescription not to drive, or to schedule a formal driving assessment

Finally, it is suggested that family members learn about the warning signs of driving problems, assess independence vs. the public safety, observe the older driver behind the wheel or ride along, discuss concerns with a physician, and explore alternative transportation options. Solutions There are a multitude of solutions and recommendations that can be made in support of older drivers. Public education and awareness is at the forefront. An educational program that includes both classroom and on the road instruction can improve knowledge and enhance driving skills.

The AAA Foundation provides several safe driving Web sites with tools for seniors and their loved ones to assess the ability to continue driving safely. These include AAAseniors.com and seniordrivers.org. They also sponsor a series of Senior Driver Expos around the country where seniors and their loved ones can learn about senior driving and mobility challenges and have a hands-on opportunity to sample AAA’s suite of research-based senior driver resources. Information on the Expos is available at aaaseniors.com/seniordriverexpo.

AARP offers an excellent driver safety program that addresses defensive driving and age-related changes, and provides tools to help judge driving fitness. Expanding this program or even requiring participation seems to be a viable entry point for tackling the challenges of driving with the aging population.

CarFit is an educational program that helps older adults check how well their personal vehicles “fit” them and if the safety features are compatible with their physical characteristics. This includes height of the car seat, mirrors, head restraints, seat belts, and proper access to the pedals. CarFit events are scheduled throughout the country and a team of trained technicians and/or health professionals work with each participant to ensure their cars are properly adjusted for their comfort and safety.

Modification of driving policies to extend periods of safe driving is another solution. Older drivers nearing the end of their safe driving years could ‘retire’ from driving gradually, rather than ‘give up’ the driver’s license. An older adult can be encouraged to relinquish the driver’s license and be issued a photo identification card at the local driver’s bureau.

The Alzheimer’s Association proposes several driving assessment and evaluation options. Among them are a vision screening by an optometrist, cognitive performance testing (CPT) by an occupational therapist, motor function screening by a physical or occupational therapist, and a behind the wheel assessment by a driver rehabilitation specialist. Poor performances on these types of tests have been correlated with poor driving outcomes in older adults, especially those with dementia. Requiring a driving test after a certain age to include both a written test and a road test may be an option considered by each state. Finally, continued input and guidance will be necessary from AARP, state licensing programs, transportation planners, and policymakers to meet the needs of our aging driving population.

It is appropriate to regard driving as an earned privilege and independent skill that is subject to change in later life. In general, having an attitude of constant adjustment until an older individual has to face the actual moment of driving cessation seems to be a positive approach. Without recognizing the magnitude of this transition, improving the quality of life in old age will be compromised. Keeping our nation’s roads safe while supporting older drivers is a notable goal to set now and for the future.

Article from Today’s Caregiver.

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.

WPA on The Morning Blend

June 5, 2018 Awareness, Community Outreach, Education, Life

Jeremy Otte, our director of outreach & education, and board member Ron Mohorek were on the The Morning Blend on TMJ4 this morning talking about Parkinson’s and our upcoming Symposium!

Thanks to Amada Senior Care for including us!

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 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

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.
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.
Your Medicare coverage and benefits will stay the same.
Mailing takes time. Your card may arrive at a different time than your friend’s or neighbor’s.
Your new card is paper, which is easier for many providers to use and copy.
Once you get your new Medicare card, destroy your old Medicare card and start using your new card right away.
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.
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.
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.
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.

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.

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Caregivers: Important discussion topics to have with your loved one

Here are some important discussion topics to have with your loved one:

Video: Not all disabilities are visible

Driving Dilemmas: Risk vs. Independence

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

Medication Management

Planning

Getting Around

Food & Drink

Communication

Sleep and Rest

Clothes

Exercise

Miscellaneous

WPA on The Morning Blend

New Medicare Cards

New Medicare cards are coming

10 things to know about your new Medicare card

Deep Brain Stimulation for Parkinson Disease

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