Parkinson's and Depression | U-Step Blog

Parkinson’s and Depression

Depression is often the number one factor negatively impacting a person with Parkinson’s quality of life, more than any of the physical symptoms a Parkinson’s patient experiences. That is a powerful and difficult fact to absorb. The strong connection between the two is important to understand in order to address it with the deserved seriousness. Some may believe that facing a chronic illness would be the impetus for depression, and yes, that can be the case, however, when it comes to Parkinson’s disease, often depression is a precursor to a diagnosis. While not everyone with Parkinson’s suffers from depression, enough do that it is important to understand the causes of the depression and the necessary steps to take if it does develop.

What ultimately comes first, Parkinson’s or depression? The answer is – it depends. There are studies that show that people with clinical depression are 3 times more likely to develop Parkinson’s, which means that depression can be an early symptom, as a 2015 study indicates. Parkinson’s disease is a degenerative disorder in which neurotransmitters that are in charge of dopamine production die. People generally associate the lowered dopamine levels of Parkinson’s with movement issues such as tremors, lack of balance, and stiffness. But dopamine is also a “mood-lifting hormone”, which is why its loss in Parkinson’s sufferers can lead to depression as one of the earliest symptoms, seen long before tremors even develop.

Treating Parkinson’s depression with medication

Often the first step in treating depression in Parkinson’s patients is making sure that their Parkinson’s medications are properly regulating dopamine. Once it is regulated, one’s doctor can help find the proper medications that will not adversely affect Parkinson’s medications. It is important to note that there are even some natural supplements that can negatively impact Parkinson’s medications, so it is important to be forthcoming with your doctor regarding any supplements you are interested in trying. Finding the correct medication to treat depression can be a difficult process, whether it be for depression associated with Parkinson’s or not.  But it is possible to find the correct mix of medications so that both the depression and other Parkinson’s symptoms improve. It’s imperative to understand that depression is inextricably connected to Parkinson’s and to treat it as a part of the larger picture of one’s treatment.

Treating with movement

Another way to treat depression is to keep moving. Movement is one of the most essential things one can do if they have Parkinson’s to keep muscles strong and maintain mobility (one of the main reasons U-Step was created). For Parkinson’s patients struggling with depression however, the benefits go even further as exercising gives your body a boost of endorphins and lifts your mood. If you are interested in taking up a new exercise but aren’t sure if it’s appropriate for you, please consult your physical therapist.

Relaxation and sleep

Sleep loss impairs task performance, cognitive performance, and can dramatically affect your mood. Making sleep and relaxation a priority in your day can help improve depression. Efforts should be made to create a bedroom that is conducive to healthy, restful sleep.

Talk therapy

Talk therapy is a useful step whether or not you are dealing with depression. When one is experiencing mild depression, talk therapy can be the best way to get back to recovery, but if you are experiencing severe clinical depression, talk therapy in conjunction with the right medication can do wonders. While medication acts as an incredibly necessary band-aid, talk therapy gives people the tools and skills they need to cope with depression in the long run.

It may seem tempting to focus solely on the physical symptoms of Parkinson’s you are experiencing. But the emotional and psychological needs are equally important and depression experienced with Parkinson’s is often completely treatable. Understanding this and enthusiastically taking hold of the situation to address it with your care team can bring solutions, drastically improve your quality of life, and with that bring a more optimistic light.

Parkinson's awareness month

What You Need to Know About Parkinson’s

It’s Parkinson’s Awareness Month! While not all, but many of our customers use a U-Step to help with Parkinson’s, we want to contribute to your “Parkinson’s awareness”  and hopefully share some lesser-known facts and statistics to broaden your understanding of the disease.

It’s more common than you think

Did you know that there are about 60,000 newly diagnosed Parkinson’s patients every year in the United States? The majority of these cases are men (about 50% more than women) who are 62-years-old or older, but there are those that are diagnosed as young as 50 – and some even younger (Michael J. Fox was diagnosed at 29). This early diagnosis is considered early-onset or young-onset.

Early Symptoms of Parkinson’s are Confusing

Not all early symptoms would make one assume that Parkinson’s is the diagnosis. Of course, there are symptoms connected with mobility that can be seen at an early stage like limb stiffness, balance issues, tremors, and even stooped posture. But there are others that you would not necessarily associate with Parkinson’s unless you stay well informed. These less obvious early signs can include smaller handwriting, changes in the voice, loss of smell, constipation or uncontrollable movements during sleep.

Early Diagnosis is Difficult

Parkinson's Diagnosis

There is no one conclusive test to receive a Parkinson’s diagnosis. Most people who finally come to a diagnosis of Parkinson’s have gone through a myriad of tests including a physical and neurological exam, blood tests, imaging tests (like MRI, CT, and others), and some of these tests are simply to rule out other possible diagnoses. Being aware of persistent symptoms as they come up (like the early signs listed above) and not accept them as simply your “new normal” will give your neurologist the best chance of properly diagnosing your condition.

It’s All About Dopamine

Parkinson’s develops as specific brain cells are destroyed, specifically in the substantia nigra, the part of the brain that is responsible for producing dopamine. Known to most people as the “happiness” or “feel-good” hormone, dopamine is responsible for much more than good vibes. As a neurotransmitter, dopamine also helps with important body functions such as movement, sleep, learning, memory and more. The early signs of Parkinson’s become much more understandable and less disjointed when we look at them through the lens of dopamine loss. The majority of Parkinson’s medications are geared toward either getting more dopamine in the brain (either naturally or synthetically) or blocking the enzymes that break it down.

The Cause is Unclear

The majority of Parkinson’s cases are not genetic. In fact, approximately 15% of patients diagnosed with Parkinson’s have a familial link to the disease (caused by a gene mutation that was passed down). So, wouldn’t that mean that many other people in their family should have the disease as well? It is clear from the research that while genetics do have an impact on Parkinson’s developing in an individual, there are “environmental factors” (toxins and pesticides for example) that contribute as well, but there is yet to be a clear causality link when it comes to these external factors.  

Keep Drinking Your Coffee

Most of us don’t need an excuse to drink coffee, but research suggests that drinking your daily cup(s?) of joe could actually be preventing Parkinson’s and even Alzheimer’s. But just as environmental factors that can cause Parkinson’s are unpredictable and not a clear indicator that you will develop the disease, it’s not advisable to start a coffee habit if you have avoided it for this long especially if it is part of an overall healthy lifestyle (which is also great for Parkinson’s prevention).

No One Experiences Parkinson’s in Exactly Same Way

While there are many common symptoms among those that suffer from Parkinson’s, the disease manifests itself differently from person to person. In particular, symptoms will develop in varying orders and degrees – meaning one person might begin experiencing a few motor symptoms immediately, while others will develop non-motor symptoms in the beginning (like loss of smell, smaller handwriting, and others mentioned above).  There is such a wide spectrum of possible symptoms which is why body awareness is key.

U-Step Walker

Diane Holland and her father

Exercise is a Huge Component of Treatment

While medications that mimic dopamine are common in Parkinson’s patients, never underestimate the power of movement. Parkinson’s patients are often timid about movement due to their tremors and impaired balance, but maintaining movement is one of the best ways to improve mobility. Through physical therapy and continued movement throughout the day, Parkinson’s patients can not only slow down the effects of Parkinson’s on their mobility but it can also improve it over time. Continuing to stay mobile with neurological walking aids and other more physical activities (like boxing and dance) will improve not only Parkinson’s patients’ mobility, but their quality of life including improving sleep problems, fighting fatigue, and improved overall mood.

Your Physical Therapist May Be Your New Best Friend

Because movement and exercise are such a critical part of managing symptoms (including early diagnosis symptoms), finding the right physical therapist who specializes in working with those with Parkinson’s can be key. As Karen Hales from “Neurology Solutions” writes: “Parkinson’s physical therapy should be the first medicine in the treatment of PD. Properly trained physical therapists (PTs) can address issues beyond just the condition’s motor symptoms. Specific exercises targeting PD can have a large impact, and PD experts agree that physical activity is beneficial to PD patients at all stages of their disease, including at early diagnosis. “

Your physical therapist will not only provide you with exercises you can do to improve your mobility and guide you in your Parkinson’s journey, they can also help you select the most appropriate walking aid for your needs and help you decide when it’s a step you might have to take and when. A Parkinson’s diagnosis itself is daunting enough, your Physical Therapists is there to partner with you when making decisions about your current and future mobility needs.

Many People live Busy, Active Lives with Parkinson’s

Because the symptoms of Parkinson’s vary from person to person so greatly, it is impossible to generalize on what a person can and cannot do when living with it. There are very successful well-known celebrities living active lives with Parkinson’s, such as Comedian Billy Connolly (who has used the condition as material in his performances) and Alan Alda.

The former United States Army officer and NASA astronaut, Michael R Clifford, spent over 665 hours orbiting the globe during his three space flights – one of them whilst dealing with Parkinson’s. The American astronaut hid his sickness for years but eventually decided to share his story after realizing that Parkinson’s had never stopped him from reaching his goals. In 2014, he collaborated on The Astronaut’s Secret, a documentary film about his career.

There are many more non-public figures living active, successful lives with Parkinson’s as well.

Caregivers Can Make All the Difference

Care partners play a major role in the team of people treating Parkinson’s. They offer an outside view of how a loved one has been doing in the interim since a previous visit. They are likely to recognize new symptoms or subtle changes that the person experiencing Parkinson’s does not or is simply not willing to admit.

For example, a loved one’s mood or behaviors may have changed and he or she may be more withdrawn. These could be signs of depression, which is a clinical symptom of Parkinson’s and is treatable with medication. A person with Parkinson’s might otherwise dismiss this as a reaction to their diagnosis or not even mention it to the doctor.

Sharing in a loved one’s journey with Parkinson’s disease means integrating the diagnosis together into your lives, adapting your routine and supporting him or her as the disease progresses — essentially, establishing a care partnership. This can sometimes be challenging; from learning about the disease and how best to help your loved one, to remembering to also care for yourself. However, the adjustment often proves to impact both loved ones in so many positive ways. There are steps you can take to help adjust to your new role as a care partner while maintaining a healthy and supportive relationship with your loved one.

There is Still No Cure for Parkinson’s

While the medical establishment has not yet found a cure, there is unprecedented research and development going on today in many countries and in many different fields of science in the exploration of new treatments and cures. There has never been a time to be more optimistic about increased assistance for living with Parkinson’s, and hopefully in the near future – a cure.

A Walker as Unique as You Are

Parkinson’s Awareness month is coming up in just a few days and many people are not aware that many people with Parkinson’s need a different, specialized walker. 

If you, your loved one, or your patient are able to control a standard rolling walker, then, by all means, continue using it. If however, you suffer from Parkinson’s, Multiple Sclerosis, Ataxia, CP or PSP and your mobility needs are not addressed by these basic walkers, then you need to ensure your safety.  Simply stated: getting a walker that supports your specific needs can dramatically impact your quality of life.

Stability Starts with “U”

Balance is the dominant issue with most neurological conditions and individuals with these conditions are at greater risk for falling. That is why the U-Step was designed with its signature “U” shaped base that surrounds the individual and braces them from falling in every direction.  The solid welded base is so strong that it does not flex and bend when you push down on it as you can feel with standard walkers. 75% of the weight of the U-Step is in the base which gives it a very low center of gravity, and is much more stable than other walkers that have their weight distributed proportionally from top to bottom.

Reverse Braking System

With a standard walker, it is hard to come to a standing position without the walker getting away from you. U-Step’s reverse brake keeps the walker stable in brake mode and when you’re ready to walk you squeeze one of the hand brakes and you can walk with it. When you are ready to sit down, the walker will remain a steady support for you then as well. This unique system gives you more confidence with every step as you are actively disengaging the brake and reducing your worry of having to activate the brake if you feel yourself falling.

Tension Control

A common problem with regular walkers is that they simply go too fast for people. Rolling walkers are only helpful if you are able to control them. Our tension feature allows you to dial up the resistance on the main turning wheels and in doing so the walker rolls with some resistance and it’s much easier to walk with. If you ever feel that your walker is moving too fast (or too slow) you can adjust the tension control to your level of comfort.  

Laser Module for Parkinson’s Freezing

Since we focus on neurological conditions, we developed specialized accessories to meet the needs of our customers. Over ten years ago, we introduced our laser module for reducing Parkinson’s freezing and based this revolutionary idea on a paper by a neurologist named Dr. Callahan. The laser module projects a bright line on the ground in front of the user and this helps the majority of Parkinson’s patients walk better with less hesitation. Not only does this reduce the frustration of getting from point A to point B, but it also reduces falls. It is quite remarkable seeing someone go from walking with reluctance to walking with confidence before your eyes.

Durability

The U-Step was designed to handle hard use. As we are well aware, the more severe the condition the stronger the walker needs to be. We designed our bottom frame to be made out of steel tubing in order to handle the stresses people with neurological conditions put on their walker. People with conditions that have advanced – such as Multiple Sclerosis, Ataxia,  Parkinson’s, CP and PSP are very hard on their walkers and from our experience, these customers are our best testers! They can destroy a standard walker in months, but the U-Step’s strength is designed to absorb the stress put on it. (They are also built to be repaired after extensive rough use where other walkers simply snap and must be discarded.)

Every condition that restricts one’s ability to move freely is a challenge. Parkinson’s, like other neurological disorders, comes with unique challenges – as unique as everyone struggling with the symptoms.  The devices that help you manage those challenges also need to be uniquely tailored to support and give a sense of security.

Can a uniquely designed device make that much of a difference?  It can – it does. There is nothing more rewarding than seeing the return of a confident stride in mere minutes because a customer switches to a properly suited – uniquely designed device.

Avoid the Risks, Avoid the Falls | U-Step Blog

Avoid the Risks, Avoid the Falls

In our January blog post, we discussed the scary prospects of falling, its high recurrence and potential complications. Once above the age of 65, falling is often the first descent on a slippery slope towards failing health. In such cases, the best remedy is actually prevention. As such, we present to you part two of our falling posts, in which we take a deep dive into the risks of falling, and what can be done to prevent them. Through this education, you and your loved ones can be alert to the risk factors for falling, and how to avoid them. Be aware– it could mean life or death.

Movement, Strength, and Balance

Among several of the leading personal risk factors, several related to activity and daily movement stand out. Maintaining an active lifestyle can be life-saving.

Risk factor #1: Muscle weakness, particularly in the legs.

Weak muscles in older people can greatly increase the risk of falling compared to those who maintain muscle strength and tone. Maintaining as much activity and strength building in the legs as possible can not only decrease potential falls, but can have positive effects on endurance and flexibility, which can also reduce risk.

Risk factor #2: How one walks.

Did you know that how you walk can determine your risk factor for falling? When walking properly and with a steady gait, older adults lower their risk. Similarly, poor balance and difficulty walking can raise the stakes. While difficulty with walking properly can be caused by a neurological cause or certain kinds of arthritis, it can also be caused by other medical conditions and treatment, like which medication the individual can take. Noticing a change in how you walk should be reported to a medical professional. another factor to difficulty walking can be simply a lack of exercise. Older adults who maintain a degree of exercise in their routine can benefit and be more stable.

Risk factor #3: Blood pressure drops when getting up from a lying down or sitting position.

Postural hypotension, which causes a drop in blood pressure when getting up, occurs in many older adults. This in turn could lead to a potential fall shortly after rising. While the exact cause can vary, several issues can effect the severity and likelihood of experience this drop. Dehydration, or some medications may cause this. Scientists have also linked it to diabetes, Parkinson’s disease, infection, and other neurological conditions. Being aware and taking care, as well as being sure to stay hydrated and getting up slowly could help mitigate this risk. Always be sure to check your medications for side-effects so you can be mindful when beginning to stand.

Maintaining Movement

Although all three of these risk factors involve problems in and during movement, elderly people can struggle to maintain an active lifestyle. Though pushing through discomfort and fear and continue to move regularly is essential for preventing falling, it is easy to opt for easier options which discourage movement. Many elderly people, especially those with Parkinson’s Disease, opt quickly for scooter and other motorized choices. Yet it is not the only option. One U-Step user may have reduced her risk for falling significantly by making the choice to try our walker instead. Here is what her son told us.

Steven Klopfer’s mother was diagnosed with Parkinson’s Disease in January 2014. After using a traditional walker for two years and struggling, she was ready to give in an get a prescription for a motorized scooter. The doctors wanted her to be able to get around, but did not want her to lose her muscle tone and the benefits of continued walking. During a visit to their neurologist to get paperwork for a power scooter the doctor intervened.

Her son described the visit: “The doctor thought Mom would be able to use a U-Step walker.  Mom first tried it at her doctor’s office and even though she could walk better, she still objected and wanted the scooter. That’s when the doctor told her that if she didn’t “move it she’d lose it”, meaning, “use your muscles or they will stop working for you.”  Mom and I reached a deal–try the U-Step for 2-weeks, if she wasn’t able to walk better and safer, we would take the next step and get the scooter. That was three years ago. She’s still walking with her U-Step.”

Although Mrs. Klopfer could have given in to her fears, her choice to use the U-Step walker made sure she didn’t “lose it.” This fateful visit most likely saved her from increasing her risk of falling.

Other Risk Factors for Falling

Other preventative measures can allow individuals to reduce the risk of falling. Some of these risk factors include:

Risk factor #4: Vision problems.

Trouble with vision, a lack of good depth perception, or eye conditions like cataracts or glaucoma could lead to falling. Be careful of what glasses you wear- multi-focals when moving, or poor lighting in your home could potentially increase your risk. Don’t skip the light switch; maintaining proper lighting could be a game-changer for preventing a spill.

Risk factor #5: Disorientation or confusion.

While visiting friend or relatives can be relaxing and fun, waking up in an unfamiliar environment and getting up without waiting to orient and familiarize yourself with your surroundings can increase the danger. Taking the time to remember where you are can be a big factor in preventing falls. Asking for help in a new place is never a bad idea.

Risk factor #6: Side effects from medications and taking multiple medications at once.

Be careful to check your medications, and be aware of their effects! Some medications, while they are necessary for health, can come with baggage. Dizziness and confusion are common side effects to certain drugs. Even without a known side effect, studies have shown that taking four or more medications can cause falling. Knowing these risks and taking time to get from place to place may help prevention.

Though there are many risk factors for falling, being aware of these causes can help older adults make informed decisions to avoid and even potentially prevent falls. Maintaining activity and taking care among other steps, could save you or your loved ones in the future.

Don’t Wait Until It’s Too Late: Falls are Dangerous

Falling is a major contributing factor to the deterioration and death of the elderly.

Community awareness can help us prevent falls in our loved ones and preserve their lives for what may be (many) additional years.

One in every three people in the US above the age of 65 falls each year.  By age 80, over half of all seniors fall every year. Someone who has taken that first serious fall is 2-3 times more likely to fall again. Falling leads to injuries and fractures in the body which make it the leading cause of death among the elderly. Many will be admitted to the hospital; after admission, 40% do not return to independent living…. and 25% die within a year.

These statistics are alarming and difficult to digest. Even so, they are actually most likely far lower than actual numbers, because many falls are not reported. We think “Mom will be fine,” and move on. Only statistically, she won’t be.

Falling Statistics | U-Step

The core causes of falling are issues with balance, strength, or both. One’s strength might be impaired by lack of physical activity or surgery. When it comes to balance there are several factors: impaired vision, medications (use of multiple medications), and diseases to name a few. Environmental hazards like poor lighting or loose carpeting can have an impact as well.

Statistically, women have a higher risk of falling than men. This is most likely because of the alarming rate of hip fractures from falls specifically in women. As this 2014 NPR article highlighted, breaking a hip can lead to a range of other frightening health complications for older adults, including the fear of future falls and significant loss of independence. And women are particularly vulnerable: among older adults, the rate of hip fractures in women is more than twice as high as in men.

“Falls have long been a leading cause of fractures, head injuries and fatalities among the older adult population,” says Michael Pacifico, MOTR/L at The Miracle Movement Therapy Center at Procare Physical Therapy in Altoona, Pennsylvania. “According to the American Academy of Family Physicians, falls account for 70 percent of accidental deaths of persons age 75 and older. As we age into our older adult years, our overall strength and resiliency decreases, including muscle mass and bone density; which leaves us at a greater risk to have serious or permanent damage from a fall.  Subsequently, the recovery time from these types of injuries also increases.”

Pacifico works with patients on specific skills and adjustments to help avoid falls: “As we age, it becomes increasingly important that we pay more attention to how we complete daily tasks, and to modify these techniques to maximize safety and functionality. Through practicing these techniques, we can increase the client’s safety and minimize fall risk so that they are able to live their lives to the fullest potential for as long as possible.”

He specializes in working with clients suffering from movement disorders such as Parkinson’s Disease and Multiple Sclerosis, among others. “Balance and safety are especially important in this patient population. Setbacks in the form of injuries resulting from falls have increased potential to become not only a threat to their independence but in some cases are life threatening.”

Ustep walkers, created with specific features for those suffering from neurological conditions such as Parkinson’s and Multiple Sclerosis, have a unique design for fall prevention. The Hallmark of the U-Step is the “U” shaped base that surrounds you,  bracing you from falling in every direction. In addition, the “squeeze-to-go”  braking system and the rolling resistance control, are integral for safe walking.  

Pacifico adds, “I have found great success utilizing the U-Step II walker in my clinic due to the added stability of the walker, as well as the visual and auditory cueing provided in the cueing module to combat freezing most often associated with Parkinson’s Disease. The reverse braking system adds to the safety of the device by providing a solid walking aid that requires the conscious effort of the client to release the brakes to facilitate movement.”

Parents and Falls | U-Step WalkerWhile trying to recover from that first, most dangerous fall, many people have a walker recommended to them for support and to prevent additional falls.  Second falls carry additional significant physical decline and risk. Pacifico explains that the role of a physical therapist can involve preventing future falls in addition to aiding the healing from those that have already happened. “As an occupational therapist, part of my job is to ensure that my clients are properly educated in safety techniques necessary to minimize fall risk, including but not limited to transferring from one surface to another, safely standing up while using an assistive device (ie: walker, cane), and while ambulating.”

Mike Studer, President of Northwest Rehabilitation Associates in Salem Oregon emphasizes the importance of getting up and moving as much as possible after a fall. Studer explains, “Walking re-introduces skeletal and muscular loading, a light yet dynamic stretch, as well as an active muscle pump. Each of these elements can help to reduce the primary complications of such injuries like hematoma, pain, swelling, and structural damage to a muscle.”

Inactivity and being confined to a wheelchair or bed rest, on the other hand, can cause a loss of strength and endurance and harm the healing process. Studer adds: “The use of a structurally-sound walker, such as the U-Step, can afford the option of greater support, and less pain-induced compensations in efforts to walk – which can be equally damaging.


According to Studer, without regular movement, whether that be by walking or by range of motion, loading, massage or an active muscle pump, the collagen fibers of the body do not heal properly and become painful scar tissue. This causes “swelling, and both bone density, as well as contractile fibers, are ultimately weaker.”

The biggest challenge in fall prevention is that no one wants to begin using a device to prevent falls…. until they have fallen. Convincing someone whose mobility is deteriorating to make this type of change in lifestyle prophylactically is very difficult.

Mr. Studer has a system for dealing with the understandable resistance to accepting that it is time for a medical device to assist in walking/prevent falls: “In my clinical practice, we use objective measures to justify care, as other practices do, but also to educate patients. I have used measures of gait speed and tolerance for a 6-minute walk test comparing their performance with and without an assistive device, for the primary purpose of education. When patients see that they could not tolerate a full 6-minute walk without a device, or see that they walked over 1/3 farther with a device…it does not take much convincing from me. The measures speak for themselves, and the preventative step of using a walker becomes evident when the goal is to stay safe and active.”

If you or a loved one is showing any signs in increased weakness, problems with fatigue, balance or has had a “scare” or “almost fall”, now is the time to look into options. Having a frank discussion about preventing falls, looking into devices that can help today can make all of the difference in the world. Speak to your doctor and discuss your mobility concerns. Speak to a physical therapist or visiting nurse about what options may be best for you. Thinking ahead, being realistic and anticipating the danger can make a life-saving difference.

Holidays, Family Time and those “Hard Conversations” | U-Step Blog

Holidays, Family Time and those “Hard Conversations”

The holiday season is a time for great joy, family gatherings, and everlasting memories. For many of us, holiday time is when we finally have a few vacation days to spend time with our loved ones. This quality time together with family can also allows us to observe more clearly if they have significant mental and functional changes.  

I have heard from so many patients and professionals that holidays, as family time, become our opportunity to also have some of these emotionally challenging conversations with our parents, grandparents, or other family members. Conditions deteriorate over time, and extended visits often make the need for increased care clearer to those of us who are looking in from the outside.

That doesn’t mean it is easy for our loved ones, however, to hear.

One of the hardest things I ever had to do in life, was to tell my Mother that she could not eat anymore. A respiratory therapist figured out that some of the food she was eating was going into her lungs and was the cause of her chronic breathing issues.  When I learned about this problem, I told the therapist that I would speak to her. With a lump in my throat and a tear in my eye, I looked my mother in the eyes and I explained to her the situation. She listened carefully and trusted me and did not fight it; her will to live was very strong.

Through working with Neurologists, Physical Therapists and thousands of spouses, children and caregivers of U-Step Customers, I have some timely advice to keep in mind as you head home this holiday season and hope that you can have positive conversations with your loved ones despite the difficult circumstances.

Many people see a mobility aid (a cane or a walker) as a last resort, something that they don’t need until there is major trouble, it is accepting the fact that “it’s all downhill from here.” It is our job to gently help them understand that getting the right walker for their needs can be a fresh start – it will increase their independence and build their confidence in living an active lifestyle. Sadly, if a walking-aid is introduced too late with a person losing cognitive ability, they might not be able to learn to use this walking-aid when they absolutely need it to prevent falls.  Broaching the subject of when to introduce a walker can be a delicate task, but I would like to offer some ideas to help make it easier:

The Earlier the Better

Start having these conversations earlier than you think you need to. Don’t wait until the situation becomes dire or even looming on the horizon to discuss the future. Talk about what signs you all feel comfortable with to know when it’s going to be time to incorporate a walker. This makes the conversation far less pressure-ridden as you are creating terms you are all happy with before there is a sign of trouble.

A Path to Independence

Help them understand that a walker is not a crutch to be seen negatively but a gateway to independence. They are not losing independence by using a walker – they are gaining it. They will be able to walk to the corner store, meet up at a local park with their friend for a stroll, and have the confidence to do so. Things they used to enjoy but are now avoiding can be a part of their life again.  

Fall Prevention

The statistics on the danger of falls, the cascading problems after falls and how often people wait to get the help they need until after falls are staggering – even scary. While the numbers are compelling, in most situations, they are not the best way to talk about preventing falls with your loved ones. Nothing will make your loved one lose his or her independence as much as a fall will. Try instead of focus on how much independence one gains from the increased mobility of a walker (or cane.) In some cases, it is best to discuss how this lessens the burden on others in the family.  

Sometimes a person of authority can be helpful in convincing loved-ones to use a walking-aid.  I remember one neurologist telling me that when he thinks that a person is at risk of falling, he insists that they get a good walker to prevent them from hurting themselves. He said if you are not willing to listen to my advice, I cannot continue treating you.

Change Takes Time

None of us like to introduce change, and most of the significant changes we do may come only after weeks or months of thinking about it first. We should give that same time to consider change to our loved ones. Bringing up the issue with the goal of checking back about it in a few weeks gives someone time to digest the idea. You can also show them that you are serious and want to help by checking yourself if your loved one’s house is ready for a walker. Go through their house and see what literal stumbling blocks may be in your way. If you are able to, help them remove the obstacles to allow for an easy transition. You will show you are helping “pave the way” while also making it easier for them to say “yes.”

Sometimes trying out a walker is the easiest way to change someone’s mindset. One day I went to a person’s house to demonstrate a U-Step that was recommended by her neurologist.  Her adult son stopped me before I got in the door and told me to ignore his mother’s comments. He said, “she isn’t going to like you because she does not want a walker.” Just as the son anticipated,  she was very antagonistic and clearly took out her angst on me. After my demonstration, I left the sample for a two-week trial. About a week later, this very happy customer called me and thanked me up and down for bringing the U-Step walker.  

Remember it’s a Two-Sided Conversation

Acknowledge their hesitancy. Never speak at your loved-one – tell them that you understand their feelings. It’s important to listen to everything they have to say regarding their feelings on getting a walker, their body’s abilities, and struggling with what they are going through. Make sure they know that they have been heard and make sure they know this is a two-way conversation. It helps to ask open-ended questions so they don’t feel like you’re pushing your agenda on them.

At the end of the day, no matter how much we express our concerns with our parent, spouse, or loved one – the decision to actually use a walker or cane is in their hands. I have seen so many families’ lives changed for the better with the introduction of the right device, gifting loved ones the ability to walk freely and safely.

May you have a wonderful holiday season with much time for family, love, laughter… and difficult or not, successful conversations.

Advancements in Parkinson’s Early Detection

Advancements in Parkinson’s Early Detection

Over the past several months, a surprising number of new innovations and research findings have come out related to early detection of Parkinson’s. While U-Step Neuro walking aids are always there for Parkinson’s patients,  we rejoice every time new research comes out that makes early detection, treatment, and delaying symptoms of Parkinson’s possible. The following are the most recent promising and innovative advancements in Parkinson’s research that we are excited to share with you.

Mobile Apps

The advent of apps has certainly changed our lives, but is it possible that an app could help us detect early signs of Parkinson’s? Taking advantage of the various sensors in our smartphones today, iPROGNOSIS has created an app that uses these sensors to analyze voice quality, steadiness of hand, typing, and even facial expressions (from photos). While this app is still in testing phase, the insights gained could have a tremendous impact on the way in which we detect Parkinson’s in the future.

Typing

After studying a small set of individuals typing (some of whom had early signs of Parkinson’s) over several months researchers concluded that there are clear markers of Parkinson’s that can be determined by the way we type.  Comparing one’s typing against the common frequency or simply by noticing hand tremors while typing, this useful tool could be one of the simplest ways to detect early signs of Parkinson’s for both doctors and individuals. While the results of this study are currently 78% accurate, the researchers are confident that given a larger research pool they can fine-tune their study and improve its accuracy.

Signs in the breath

Is it possible that one day we will simply be able to breathe into a tube and know if we’re showing early signs of Parkinson’s or any other neurological degenerative disease? Nanoparticle biosensor technology has advanced so much that the Israel Institute of Technology began studies to test the accuracy of a nanotube sensor array to detect early sign biomarkers of Parkinson’s disease. After computing their results, they compared their findings to midbrain ultrasound and smell detection tests, which are the current standard for testing for early stages of PD, the researchers are hopeful that this breath test could become the new standard.

Retinal Scanning

Not all early signs of Parkinson’s are motor signs. In a small study in South Korea, participants who were diagnosed with Parkinson’s but were not yet being treated were compared to an age-matched control group with retinal scanning. The results were consistent showing that the Parkinson’s patients had more retinal thinning in comparison to those in the age-matched control group. While this study shows a lot of promise standing on its own they are also looking into a connection between retinal thinning and a reduction in dopamine-producing cells by the brain (also associated with PD). It is believed that once the researchers are able to understand the connection between retinal thinning and dopamine that we will be able to monitor Parkinson’s treatments more accurately in the future.

 

The good news in all of this is that every year we are moving closer and closer to not only early detection but also hopefully, a cure. An early diagnosis might seem scary, however, the more vigilant we can be regarding early detection the more we can understand and prevent symptoms from interfering with patient’s lives. We at U-Step strive to give all of our customers more mobility, longevity and quality of life. And part of that mission is celebrating the hope for future elimination of Parkinson’s and other conditions altogether.

Physical Therapy Month

The Power of Physical Therapy

In honor of physical therapy month, we at Ustep want to celebrate our important partners in bringing patients and customers increased mobility and motor function: physical therapists.

We live in an “instant gratification” society. So much of what we want to buy/see/do is available with the click of a button. Physical therapy is not a quick fix or a magic pill; it doesn’t work instantaneously. But for many, it has the power to change one’s life in a deep and lasting way.

Medication is often a quick way to get you to the finish line of temporary pain relief. But while reducing or eliminating pain (temporarily), medicine cannot return functionality to injured bones and muscles. It cannot help us regain strength that we have lost and it cannot help us achieve enough mobility to return not just “feel better” but be healthier.

Physical therapy is one of the most important things a person with a condition or injury can do for themselves. What is the power behind this practice?

Medication Prevention

As we alluded to above, physical therapy is the best long-term alternative to drugs when it comes to improved mobility and pain management (without all of the nasty side effects like potential addiction, masking the true source of the pain, liver damage, and more). Learning how to use your body correctly and rehabilitate is the BEST way to work towards a mobile, and opioid-free life.

Understanding the Root Cause of Your Pain

Working out your pain source and how to fix it is one of the key objectives of physical therapy. Rather than only treating symptoms, your physical therapist is invested in finding out why your body is hurting you and in working with you to adjust to your condition’s limiting of your capabilities and/or movements, rehabilitate from an injury, and/or strengthen your weakening body.

Self-Empowerment

When we come to a place where we begin to understand the root of our weakness or pain, we can work together with the physical therapist to improve our bodies over time. If you do your exercises consistently you will eventually see improvement and gain strength.

Preventing Surgery

When you continually use your body incorrectly or mask your pain with medication your body will not improve and surgery may be in your future. A physical therapist can get to the root cause of your mobility issue and potentially avoid surgery.  

Fall Prevention

As you get older you become more prone to falling, a leading cause of death among the elderly. 40% of the elderly who fall do not return to independent living afterward and 25% die within one year of falling. And once you fall, you dramatically increase your chances of falling again. It used to be common to prescribe extra calcium and vitamin D so that elderly bones are strengthened and can sustain a fall, but now there is a strong focus on exercise and working on balance. If you have been feeling a wobble in your step, work on your mobility and balance as soon as possible with a physical therapist. Your life could depend on it.

Recovery

Yes, recovery. We cannot promise you that in your specific circumstance that you will come to a complete recovery, especially if you have been diagnosed with a neurological disease in which case PT provides excellent prevention and strength as your disease progresses. However, of all the treatment options out there, physical therapy is the only one that has the potential to help you regain lost capabilities. This is a long process and takes a lot of commitment and work on your part, but the dream of a mobile life is highly possible and your physical therapist is there to partner with you on your journey.

Recommendations for mobility aids

The expertise and knowledge that physical therapists have is instrumental in patients finding and purchasing the right mobility aid. Physical therapists see devices such as canes and walkers as powerful alternatives to wheelchairs, as it keeps patients up and moving. We work together as a team to keep you (or your loved one) up, moving, and ideally as independent as possible.

If you are currently undergoing physical therapy, talk to your physical therapist about the walking aids that are available. Use their vast knowledge to make sure that whichever products you own remain the best choice for you, and of course, make sure to acknowledge their efforts and all that they are doing for you.

 

U-Step Lasercane

What a Difference One Little Red Line Makes: Explaining Parkinson’s Freezing and How Cues Help

There are many things in life we take for granted until there is a problem. Walking is definitely one of them.

The basic function of walking is an engineering marvel. We have the majority of our weight above the center of gravity of our body, unlike all man-made products. We expend very little energy moving by shifting weight from one leg to the other as we traverse nearly endless combinations of surfaces and obstacles. In order for us to walk easily and safely, our brain processes many different signals from our body to avoid falling.

About 1/3 of people with Parkinson’s disease experience “freezing” episodes, in which one simply cannot walk. According to The American Parkinson Association, “freezing episodes are sudden, short, transient blocks of movement that occur primarily with initiating walking, turning, navigating through narrow spaces or approaching obstacles. Freezing can last just a few seconds or up to several minutes. Freezing can limit household and community mobility, increase risk of falling and contributes to reduced socialization and quality of life.”

The part of the brain called the “Substantia Nigra” stops producing enough neurotransmitters to convey these signals/messages. It is at that point when Parkinson’s “freezing” presents. Given the brain does not have enough information to know if it is safe to walk, the brain stops you from taking steps.

One proven way of reducing this freezing is by using external cues. One simple cue that generally works for people is placing strips of tape on the floor. The lines on the floor tend to reduce the hesitation.

There are cues – such as physical cues – i.e. holding onto a walker – and vibratory cues that give you a sensation to go that are sometimes effective but not often utilized.

Not everyone responds to cueing.  Approximately 70% of people with Parkinson’s benefit and the level of benefit varies dramatically. There is a difference between Parkinson’s disease and Parkinsonism as was explained by a top Movement disorders specialist (Jeff Bronstein, UCLA). In general, if a person has Parkinson’s symptoms but they do not benefit from the standard Parkinson’s medications, such as Sinimet, they have Parkinsonism and not Parkinson’s disease.   What is interesting is those with Parkinsonism tend to benefit more from cues than those with standard Parkinson’s disease.

For the 70%, why do external cues help? Neurologists are not 100% sure why. I think the best way to explain it is to compare walking to solving a complex math problem. You break up the problem into steps and solve them one by one until you solve the whole problem. Similarly, walking is actually a process made of many smaller ones. When we go to walk, we use our eyes to automatically take measurements of distances to the walls and furniture and other obstacles, and this feedback is plugged into our walking program. This requires a lot of data processing. (If this is hard for you to imagine, close your eyes and try walking normally, your brain will cause you to hesitant too.) If we are not getting enough information quickly, can we figure out how to walk with less information? If you just focus on the next few steps versus walking across the room, it is much less to process. So you focus on just a few steps at a time until you cross the room. Rather than scanning a whole room, if all you had to focus on is a line very close to you, that would be less mental processing. This is one reason why a line on the floor (visual cue) helps.

This is why laser modules on the U-Step and Lasercane are installed to project a line on the floor close to the user. We have helped tens of thousands of people with Parkinson’s freezing. This line needs to be positioned close to you to be effective. If the line is even three feet ahead of you, it becomes less helpful.

In addition to visual cues such as lines on the floors, there are other cues that can also be helpful. Audio cues, for example. When someone with Parkinson’s freezing focuses on a beat pattern, this tends to help them walk and pace themselves. This beat pattern can be found in music or by using a metronome device where you can set the best beat rate.  At U-Step, we incorporated a metronome into our electronic cueing device so people can benefit from both in one product conveniently attached to the handlebar of the U-Step 2. In general, physical and occupational therapists recommend the beat pattern be set slightly faster than the person’s walking. They do not expect people to keep up with the beat, they find this to be most effective.

While freezing itself is involuntary, several strategies can help people with Parkinson’s disease recover during a freeze. If you find yourself stuck, do not “fight the freeze.” That can make it even harder to move forward. Instead, focus on another type of movement, such as moving your arms, until the freeze passes.

Caregivers can also help someone to:

  1. Reverse direction;
  2. March in place;
  3. Find a rhythm;
  4. Aim a laser cue;
  5. And, to countdown.

Freezing isn’t just an inconvenience. It can also be a threat to overall health and wellness — particularly as Parkinson’s disease progresses. Caregivers can help to help promote safety while boosting the quality of life for people with Parkinson’s.

One last thing to keep in mind: Some physical therapists specialize in helping patients with Parkinson’s disease. Be sure to ask your neurologist or physical therapist about other potential treatments for managing freezing.

The Gift of Walking | U-Step Blog

The Gift of Walking

If you are a customer of ours, it is likely that you have been impacted by Parkinson’s disease in some way. Whether it’s a spouse, a grandparent, friend, or patient, watching someone suffer the symptoms of Parkinson’s can make one feel helpless. One of the biggest reasons why I created U-Step was to actively do something to help. Giving someone with a neurological disease the gift of WALKING – something the majority of us take for granted – is a feeling like no other.

Several months ago, we launched a new UStep website. The process of finding the right company to work with to update our site took much consideration but we finally settled on a company who then subcontracted the work to a website designer named Gabi Schnaider.

Gabi, it turns out, had a vested interest in building the website because his father, Pablo Schnaider, had Parkinson’s Disease. Gabi was already familiar with our company because he had done his research and purchased our Lasercane for his father several years prior. As this was uncovered, we knew we had found the right man for the job. In addition to having all of the right web development skills, he also understood the heart of our company.

The development of our website extended over a year as we figured out what we wanted and pulled together all the various components we needed.  During the course of the development, Gabi’s father, unfortunately, passed away. As you would expect, he was overwhelmed by sadness and a sense of helplessness upon the passing of his father. Even months later, Gabi was not the same.  

We continued on with the project and towards the end of it, Gabi shared once again his sadness over losing his father.  I knew how unbelievably close they were, and having lost my parents, I was able to relate and feel his pain. What could I do to comfort him?  Out of the blue, I said to Gabi, “your father was a very good man and I would like to donate a U-Step 2 to someone with Parkinson’s in his memory.” Gabi quickly got back to me and said that he would take me up on my offer – it was taking a negative situation and turning it into something positive.

Gabi and his family were active in the Parkinson’s community and without having to search too far, they decided to provide the U-Step 2 to a former neighbor, Linda  Burdman. Once that was decided we quickly arranged a time and place to meet – we didn’t want to waste a single minute. I came with my daughter and we met Gabi’s mother, his sister, and of course Linda and her husband.  We sat around having cold drinks and got to know each other. Gabi shared pictures of his father and extended family with us. It was cheerful, comforting and relaxed.

Finally, it was time to introduce Linda to the U-Step 2. I adjusted the walker to the suitable height for her and explained the basics about using the product and we decided to go outside where there would be more room to walk. As we were approaching the door, I quickly noticed Linda’s gait pattern – short shuffling steps.  At that point, I stopped her and explained to her about the cueing module that projected a red line of the floor to address her Parkinson “freezing”. And suddenly – she started to really walk – with healthy steps and a normal speed.  

Even though I am the designer, to see a person dramatically improve in seconds before my eyes never stops feeling like anything but a miracle.  Mrs. Burdman became comfortable with the U-Step in minutes. She figured out quickly how to use the reversed brake – squeeze to go and let go to stop.  She had limited endurance and very quickly learned how to pivot to sit down.

It got very emotional. Linda while sitting on the U-Step 2, was hugging everyone!  She was so happy. Out of the corner of my eye, I saw Mrs. Shnaider – look up to heaven and say, “Pablo – this is for you!”  We ended up taking pictures and shared some delicious strudel while going over the finer points of using the U-Step 2. It was an uplifting moment for all those involved.   Reflecting on this experience, it is a blessing to be able to help someone in need and see how it can help raise our spirits during our own sad moments in life. I am certain that Gabi becoming our web developer was no “coincidence”.

 

Have you seen a U-Step 2 or Lasercane change someone’s life right before your eyes? Have you had your own experience where you knew something couldn’t be “just a coincidence”? Share your story with us.  

Finding the Right Kind of Support | U-Step Blog

Finding the Right Kind of Support

Every new day brings opportunities for people to experience the profound feeling of being valued by another person. Expressions of value differ based on circumstances. But in healthcare, when patients and clinicians come together, it is for the special purpose of improving and supporting optimal health.

We all need support. Every day, physical therapists (PTs) support people with movement difficulties due to disease, trauma, illness, developmental and acquired disabilities, and physical and emotional pain. When people have to use their arms to stand up and walk, their ability to normally and safely move is impaired. If their movement impairment is significant, then they may need more extensive upper body support.

When patients contact me, often their posture is collapsing to the point that their walker is no longer supportive enough, and walking is becoming extremely difficult. A wheelchair may seem to be their only option but they still have hope for something better. As a PT, it gives me great satisfaction to share with them a different perspective and to offer multiple options that may address their movement impairment or walking problem. After my evaluation is completed, initially much of my billable time is focused on improving my patients’ health literacy so they have a clear understanding of the resources available to help them move better, and so they can choose a treatment approach that suits them.  

Bob, Carol, and I first crossed paths in the spring of 2017. Bob has Parkinson’s disease (PD) and he was having a lot of hip pain, too. Walking in his home and retirement community was becoming not only difficult but unpleasant. He was also having trouble getting in and out bed and chairs. After examining him and his home environment, and discussing with him and Carol the options available under his Medicare benefit program, he decided on a two-pronged progressive course of action: a PT-prescribed home exercise program and an upgrade from his 4-wheeled walker. So, I enrolled him in the Otago Exercise Program (OEP), which he could safely start with minimal help from Carol, and I brought a U-Step platform walker with a cueing module for him to try under my supervision.

As of the time I wrote this article, I have progressed Bob’s OEP every month or so as he has continued to make slow, steady gains in flexibility, strength, endurance and balance control. The OEP is a slowly progressive exercise program that was developed by the University of Otago in New Zealand. Developed countries around the world have adopted this program for their senior citizens as a fall risk reduction intervention. The United States adopted this program in 2012. For more information about the OEP and effective fall interventions see this informative compendium by the Centers of Disease Control and Injury Prevention.

The U-Step walker was developed by Jonathan Miller initially to assist his mother, who was struggling to walk because of PD. I have known Jonathan through phone calls and emails over 2 decades. His company, In-Step Mobility is based in Illinois. Although I’ve lived in California for more than 40 years, my roots run deep in the Mid-West where my sense of real hospitality developed. Even though I now live and work in a fast-paced technology-driven bubble called the San Francisco Bay Area, it still takes me 10 minutes to say “Hello!” and even longer to say “Goodbye!” Sometimes I feel these are hallmark signs of a disappearing era. And then I talk to the folks I know in the Mid-West who share the same hardwired appreciation for words like “Please!” and “Thank you!”, and who know how to provide really good customer service.

Because I see the personal and clinical value of the U-Step walker, I have periodically asked Jonathan if he would make platforms to attach to the U-Step walker so people with severely collapsing postures could have more equipment options to help them continue to safely walk. In 2013 the stars aligned. More people were coming to me because their arms and legs could no longer hold them up, and one of my patients, a lovely lady named Olive, agreed to be in a video to help me show Jonathan what we clinically needed to help her safely walk more upright.

Fast forward to June 2017. Bob is the first person in California to receive a U-Step platform walker. He is able to maintain his independence and can walk in his home with minimal pain with this upgraded walker system. He walks faster and he can more safely turn around so he can get in and out of the elevator in his retirement community. In addition to all the walking exercise he gets by walking to the community dining room and social events, he formally exercises 2-3 times a week by following the OEP (which includes a structured walking program). Bob and Carol’s quality of life has improved as his abilities to exercise and walk have improved.

Other reasons I value In-Step Mobility and the U-Step walker include:

  • Extremely Stable: This is an important safety feature as my patients with severely collapsing postures tend to be very concerned about falling so they often try to avoid standing and walking whenever possible.
  • Infinitely Adjustable: The height of the platforms and the angle of the handles can be adjusted to meet my patient’s individual ergonomic needs so they are optimally comfortable when standing and walking.
  • Intuitive: The walk is intuitive to operate and requires very little physical effort for me to set it up out of the box.
  • Unique Cueing Feature: The U-Step platform walker with cueing module can be set up to uniquely provide visual and/or auditory cues for my patients who need additional external input to maintain the rhythm of walking and to practice the simple-to-advanced stepping exercises I give them as homework.
  • Great Customer Service: In-Step Mobility staff provide really good customer service support to patients and PTs. They kindly and patiently help people understand the criteria for Medicare to cover all or part of the cost of the U-Step walker, with or without platforms and the cueing module.  

If you are a person with PD or you are having a hard time walking with your regular walker, please reach out to your local physical therapist! This licensed professional can examine you, discuss with you your exercise and equipment options, and possibly be able to help you qualify under your Medicare benefit program for an upgraded walker, like the U-Step platform walker. All 50 States in the U.S.A. now give patients the right to directly access a physical therapist without a referral from their physician, so I encourage you to call your local physical therapist. This person is there to help you find the right kind of support to keep you moving.

 

About Lise McCarthy: The letters after her name mean that she is a physical therapy doctor and clinical specialist in geriatric physical therapy. Her practice provides house-calls primarily to older people living in the San Francisco Bay Area in California. She very much enjoys her role as Assistant Clinical Professor, Volunteer, at the University of California at San Francisco, helping to teach the next generation of physical therapy doctors about geriatric care management standards of practice. In 2014 and with the support of many others, she became the founding Chair of the Cognitive and Mental Health Special Interest Group of the Academy of Geriatric Physical Therapy. Many consider her a national expert on care management strategies that can help people impacted by cognitive and mental health conditions improve their quality of life.

Disclosure statement: Over the past 18 years, Lise McCarthy has received 3 U-Step walkers (e.g. U-Step I, U-Step II, and U-Step with Platform Attachments) with cueing modules as samples. These walkers (along with other walkers from different manufacturers) have been used in her practice to help her determine what kind of walker system would best suit her patients’ needs and abilities.
My Spouse Has Been Diagnosed with Parkinson’s Disease - What Now?

My Spouse Has Been Diagnosed with Parkinson’s Disease – What Now?

The past few weeks of your life have felt like a whirlwind. You sat with the doctor, they probably explained to you the medical prognosis, treatment options, and at least some of what to expect. But what now?

We want to suggest a few tips from healthcare professionals, service providers, and spouses who have many years experience with Parkinson’s Disease. While you might feel lost in a fog right now, it is important to start educating yourself to feel better prepared and empowered in your new reality.  Once you are properly informed you can then spend the rest of your time focusing on the one your love, their needs and creating some time for self-care.

Below is a compilation of information to get you started:

To Google or not to Google?

The internet is full of endless resources and if you were to start Googling now you will probably spend hours going down the rabbit hole. To reduce your overwhelm we have gathered a few of our favorite resources from The Michael J. Fox Foundation for Parkinson’s Research website which has a wealth of information on a wide variety of related topics. Spend some time getting to know the site and the “virtual community” that you can find there. Also, visit the Parkinson’s Foundation and AARP. You might want to start with the following articles:

Find out who the best physical therapists are in your area that deal specifically with Parkinson’s patients. Of course you should consult with your spouse’s doctor, but you may also want to ask for recommendations from Parkinson’s forums or anyone you know personally in the area having a good experience with physical therapists. In addition, the Parkinson’s Foundation website has a services locator feature that allows you to search by zip code.

Become more educated about your health insurance, coverage, and rights.

Your insurance coverage needs are going to change. Allocate some time to have a proper phone or in person meeting with a representative who can walk you through what you will need to do for claims and any other services that are covered by your insurance and, more importantly, which ones are not.

Looking towards the future, mentally prepare for changes to your home and lifestyle.

When a person receives their diagnosis of Parkinson’s, in most circumstances by just taking medications they have many years of proper non-impaired mobility. Time and again, the spouse of a Parkinson’s patient is the one who will have to be the most proactive about adjustments to the house, car, and other aspects of your lifestyle. However much you can anticipate these future needs, the easier the transition is going to be. Again, this is where participating in online communities and having a good relationship with your spouse’s doctor will be crucial. Here are a few things to start thinking about but keep in mind that everyone’s home, circumstances, and timeline are different:

  • Will you need to eventually install a ramp?
  • Will you need to rethink your current car needs?
  • Is your bathroom set up properly?
  • How soon will you need a cane and/or walker?

While these issues are not of immediate concern, it is good to keep these issues in mind so you can easily adapt when the need arises.

Research walkers before they are required.

For many, the realization that the time has come for a walker can be very difficult for a person with Parkinson’s to accept. While the need for a walking-aid after a Parkinson’s diagnosis is far from immediate (in fact in most cases it’s several YEARS in the future), it is important to keep in mind that this is where the patience and insight of a spouse can be invaluable. There are specialized canes and walkers that have specific features to help with stability and Parkinson’s freezing. They can not only prevent falls, but can also help those with Parkinson’s to lead active lifestyles. 

There is danger is in waiting too long to use a suitable walking-aid. Falls can be devastating physically and emotionally.  Also, it is better to start using a walking-aid earlier than later so the person masters its use.  Fortunately, insurance companies and Medicare often reimburse most of the cost of these specialized walking-aids because of their effectiveness in preventing falls.

Having regular check-ups with your neurologist and knowing what your options are before you need to rely on them will give you and your spouse some peace of mind.

Emotional and physical support for you, and for your spouse.

Clearly, your spouse is going through something right now that was unimaginable only a few short months ago, but don’t underestimate the toll that any serious diagnosis can have on the spouse of a patient as well. Your self-care will become just as important in the coming weeks of what we hope will be many long years you have together. Figure out those few things that make you feel empowered and bring you joy, preferably on a daily basis. Whether that be making fitness a priority, meditating, or meeting up with a friend that lights you up for coffee once a week. Really sit and think about what you can do for yourself and, most importantly, follow through. For more information on this topic, Barry Jacobs, a clinical psychologist, further explains in this AARP article the need to find support, take care of oneself, and to communicate your needs to your spouse.

So what now? Take a breath. Rally your support team behind you, and get started with educating yourself to make confident initial steps for you and your spouse.

How U-Step Began | U-Step Walker

The U-Step Story: How the Company Began

I grew up with a mother who had trouble walking. She was born with a rare Muscular Dystrophy Disease called “Charcot Marie Toothe”(CMT). As a result, she had slightly deformed legs, club feet and poor muscle strength in her legs. She was born in 1928, and back then they did not know what caused her problems. She did recount memories from childhood of specialists throwing around the name “Charcot Marie Toothe” at the Mayo Clinic, but she only received a proper diagnosis later in life.  

My mother underwent multiple surgeries on her legs that probably did more harm than good. I have no childhood memories of running with my mother, or walking very far. I remember as a teenager, there being a discussion over whether she could walk about a mile to our synagogue for the Jewish High Holidays. My father did all the laundry until we were old enough to help because she could not walk down a flight of steps to the basement.

Pauline-Miller-with-her-UStep-and-Jonathan

U-Step founder Jonathan Miller with his mother, Pauline at his wedding

Despite her condition, overall, life was normal. My mom was limited but still functional. But then I hit my early twenties and her walking got progressively worse that she could no longer walk without holding on to something; a wall, a piece of furniture, or someone’s arm. And yet, she didn’t complain.

As an adult, I think back and ask myself how could she not? We didn’t really dwell on her challenges because she just bore them. By the time she was 60 years old, she could not walk independently at all. That was around the same time that my father passed away, so she no longer had his assistance – or companionship – making things even more challenging for her.

My mother finally came to the realization that she needed to address her mobility problem, so she went to physicians, therapists and an orthotist who all specialized in walking. This intervention should have addressed the problem. She sought the assistance of all the right people. Yet after ten weeks of therapy, thousands of dollars in leg braces, and a standard walker, she was not doing well. She made peace with wearing leg braces but, to add insult to injury, they were too cumbersome to use.

I have a clear memory of the time I was home and she was struggling with all her hardware and finally seeing her breakdown in complete frustration. It surprised me; my mom was a fighter who had persevered through so many challenges. When I saw her defeated like that, even if momentarily, I knew right then and there that she – we – had a problem.

I started to pay more attention, and I got more involved.  I realized that my mom needed my help to get her back to walking.   I accessed the situation… and I didn’t have to be a doctor or physical therapist to realize that her walker was not stable enough to properly help her.    So I went out looking for a better walker and we tried a few with wheels but, she could not control them.   I could not believe there was not a single walker on the market that could meet her needs.  

I started to wonder if I could design a suitable walker for her.  I had never done anything like this, but, having grown up with an engineer father, I was not afraid to try it.  I liked spending time with my father when he would fix things or, even better, when he would devise something for the house.  It always started with an accurate to-scale drawing on graph paper.  No scribble allowed!   I also learned to draft designs in high school woodshop class.  Who knew this skill would come in so handy in real life?

I was determined to find a way to make a walker stabile enough. As stable as holding onto a wall or someone’s arm. I visualized a stable base that surrounded my mom – and that is where the U-shaped base came from.  It surrounds you – and braces you in every direction.  

U-shaped base that surrounds the user, increasing support and stability.

After some initial drawings that would not have passed my father’s exacting standards, I set off to Builders‘ Square to buy materials for the project, including cables, furniture casters, lawn mower wheels, water pipes and fittings,  and other odd items to try to concoct an original walker for my mom.

A few days later, I started to fashion the first “U-Step” in my mom’s basement.   I did not have the tools or skills for working with metal so I stuck to wood for everything but the water pipe handlebars.   I worked with power saws, drills, and sanders to fashion the U-shaped base.   It sure wasn’t pretty but, I was on my way to having a working prototype.   I remember bringing it upstairs for my mom to try it.  She grabbed onto the handlebars and stood up and started to walk!

I asked her what she thought and she said that it was good.  Really?!  So I was encouraged to continue.  I then jerry-rigged a braking system with the help of a cousin, Alan Woodhouse (a tool-and-die expert), who generously gave of his time to get this project done.  So my mom started using this primitive walker around the house and it did the job.  Being able to place some weight on the handlebars was enough to keep her knee from buckling, so she did not need the leg braces and she was walking with just the help of this walker.   Amazing!

I was thrilled to have an actual, functioning solution to improve my mother’s life. But…. wow was this walker ugly!  I remember my buddy who was in business stopping by to see it. Years later he confessed that at the time he had thought I had gone off the deep end.  He could not visualize how I could turn this monstrosity into a reasonable product to use.   But unaware that he felt that way and undaunted,  I continued the project and with some financial assistance from my mother,  I contracted a metal fabrication company to produce a more refined version of the “U” shaped frame –  that in the end cost me over $2,000 to make.  So after all of that work and expense, my mother had a presentable walker to use in and out of the house.  Success!  I was relieved that my mother got back some of her independence.  (And I got back some of my freedom.)

The story could have ended there.  Not long afterward, my mother was using this walker at her internist’s office.  Dr. Weiss took a long look at the product and how my mom did with it and said: “this could help a lot of people.”  He reached out to me and encouraged me to produce this walker for others.   I considered his suggestion.  I had always wanted to go into business.   That is what I studied in college and I was working in new product marketing research and consulting for a firm in downtown Chicago.  I started the process of turning “Pauline Miller’s Walker” into a business.  I started to do some market research, business planning, and redesigning the “U-Step” for production. A $2,000 cost per unit wasn’t going to fly in the market.  

Years later I ran into Dr. Weiss – who also coined the name “U-Step” – and I thanked him for his initial encouragement.  He told me that he had second-guessed himself and thought – what if he was wrong and I spent my energy on this project and it failed? He was relieved to learn that his first instinct had been right!    

It took about a year, but I used the money I had saved since graduating college and completed my first production run of ten units.  Progress.   Those ten only cost $600 a piece…. and I was able to sell them for $395!  I sold at a loss because I knew I had to prove the concept before I could start making money. Depleting my funds, I managed to obtain an SBA loan for $60,000 to pay for a production run of 50 units, which took me a full year to sell and break even.  No salary for me at that point. With no money left to go on, I started to get creative about funding; I put about $40,000 on personal credit cards (over which I am still waiting for my wife’s forgiveness), and I was still working out of our apartment.   

My big break came when a very satisfied U-Step customer asked me about the business.  Her husband (a successful businessman), and his investment group put in enough of an initial investment to really get the ball rolling.   It was time to find a manufacturer able to produce our product at a much lower cost, so I could finally start making a living.  

Although I had managed to secure some initial funding, I had another big hurdle: I had a brand new product but did not know exactly who my customers would be, or how to reach them.  My first instinct was to meet with physical therapists to educate them on the product and have them prescribe it.  As I did, I heard from many therapists that they all thought the U-Step would be great for their Parkinson’s patients. That, combined with an article in a Parkinson’s newsletter, jump-started sales to the Parkinson’s community.  I had two top Parkinson’s centers request brochures for their patients.  Almost immediately, these offices started to prescribe our product many times a week.  I figured if I could sign up more neurology offices to recommend the product, I was on to something.  And that worked!  I ended up traveling around the United States meeting with major neurological centers and slowly but surely the business grew.  We became a Medicare provider and we sold mostly directly to patients.  

We are now finally in a position to be able to help people all across North America (and some internationally) in improving their quality of life, reduce hospital stays, increase mobility and function, and reduce falls and the many tragedies that ensue from them. We are launching new U-Step models with increased specificity to meet various needs depending on conditions, and various accessories to further customize each walker for each customer.

My mother used her U-Step for over ten years before passing away.  It kept her up and walking and in her own home, which is what she wanted.   Every time I receive an email from a physical therapist, U-Step user, or a customer’s caregiver about how our walker has changed someone’s life, I think back to my mother and think that in her merit, so many people have been helped.

I tell all of my employees to treat our customers like they would treat their own mom. It is also why I never stop at “good is good enough” with our design.  The U-Step has been through many redesigns to make the product the best possible.  Every product I make has the same level of care and devotion as I had when making the first unit for my mother.  

When I initially decided to study business I could never have imagined that through the pain and struggle of trying to help my mother when there was no help to be found, I would “stumble” upon a business that would give me such a sense of purpose and satisfaction.  I feel blessed to work in a field that I am passionate about and that I can help people avoid falls and stay independent.