Ask When They Last Saw Their Neurologist
Please remind them of the relative value of seeing their neurologist every six months. Although the progression of Parkinsons may be slight or subtle, their healthcare provider is usually the constancy-of-care. The movement disorder physician can advise therapy and guide the treatment plan for the person-with-Parkinsons.
Living With A Husband Who Has Parkinsons
For the most part, living with Parkinsons is like having a third person with you at all times. Imagine having someone with you who takes control randomly and changes his mind at will. Its stressful. The major issue I have found living with Parkinsons is its unpredictability.
In terms of our lives, I am most challenged by my inability to plan. I never know how Parkinsons will impact my husband. Dennis can be doing something fairly normal, such as having dinner or watching television. Then, suddenly, he cant walk. Sometimes his is even frozen in place. He can be ready to go to a football game one minute and unable to get out of the car the next. He can enter a party with enthusiasm looking energetic and lively and find that he has to leave the festivities a half hour later hardly able to navigate out the door. Our lives have become a best guess scenario in terms of how Dennis body will perform at any given time.
This unpredictability is often misunderstood by people who dont know Parkinsons symptoms or appreciate the complexity of the disease. I understand their confusion and sometimes disbelief. It is difficult to accept that a person with Parkinsons who looks healthy enough one when he entered the room lacks the control to buck-up, push through or hold on a minute.
Living Alone With Parkinson’s Disease
Kara LaMarre, Support Group Facilitator for the Alpena Parkinson Support Group and Debby Orloff-Davidson, MPF CEO
Living alone has its advantages. There’s no one to clean up after. You can do as you please when you please. There is a downside however, especially if you have to deal with issues associated with Parkinson’s disease, such as freezing and falls.
At our recent Annual Facilitator Training Program, a panel of five individuals gave their insight into living alone as safely and as independently as possible with Parkinson’s disease. Peggy, Doug, Jeannie, Jonathan, and Nona, who live in both urban and rural areas, provided practical ideas for persons living in their home without the benefit of having a companion to aid them when a need arises.
Doug has organized his house – and himself – to conserve energy and perform tasks. He has motion sensors that turn on lights in each room as he enters. He hangs a tennis ball from the ceiling in the garage, so when he pulls his car in and the tennis ball touches the window, he knows he has parked correctly. He eliminates the need for daily cleanup of the bathroom sink by using an electric shaver and toothbrush while taking his shower. Doug also uses plastic cups and bottles to avoid problems with breakage. Doug feels strongly that organization and planning ahead greatly reduce incidences that may cause problems for him.
Recommended Reading: Do Lewy Bodies Cause Parkinson’s
Tips For Living Alone With Pd
Living alone with Parkinsons involves adapting to your circumstances. Here are a few tips for making everyday tasks easier to manage:
- Tailor your living space to your needs. One benefit of living alone is the ability to organize your own space. Place essential items where you can easily see and access them, so you can find what you need when you need it.
- Keep a pair of pliers handy. This multi-purpose tool can help assist you with opening jars or bags.
- Adjust your phone settings. There are various options that can simplify using a smartphone. Consider turning on these features to better control your phone and stay connected:
- Touch Accommodations: This feature changes how the screen on your device responds to taps, swipes and other gestures.
- Voice Commands: Voice assistants like Siri or Google Assistant reduce the need to use your hands for phone access. These tools can be used to launch applications, make phone calls and dictate text messages.
When To Make The Initial Move To Assisted Care
A common reason to move a PD patient to assisted care is the overwhelming strain it can put on their loved ones. Caregiver burnout is very prevalent and difficult for those taking care of PD patients. Its a physically taxing and mentally draining job. Recurrent falls occur among 39 percent of PD patients, with an average of 20 falls per year, according to recent studies. Because of this, caregivers are often afraid of having patients move around too much, which is the opposite of the therapy they need.
Assisted care communities employ educated and trained staff. Their care plans include awareness and interventions of potential fall hazards.
Recommended Reading: Early Signs And Symptoms Of Parkinsons Disease
Recommended Reading: Can You Live A Good Life With Parkinson’s Disease
Care And Services Provided In Assisted Living Communities
Many Americans may have lingering negative stereotypes when they hear the term assisted living, bringing to mind drab, impersonal nursing homes that serve as a poor substitute for remaining at home. Luckily, this is far from the current reality, and for seniors living with Parkinsons disease, an assisted living community may be an ideal option.
Read Also: Parkinsons And Physical Therapy
What Are The Risk Factors Of Contracting Parkinsons Disease
According to the Mayo Clinic, doctors and researchers still havent pinpointed the cause of Parkinsons disease, but theyve identified several risk factors. Most likely, Parkinsons disease is caused by a combination of environmental exposures and genetics.
Don’t Miss: Do Parkinson’s Patients Have Seizures
Adapt To The Diagnosis
An essential first step is coming to terms with the diagnosis and understanding that Parkinsons disease is progressive. That means it changes over time, and your role changes with it.
Another important focus in the early days is to consider, along with your loved one, how to share the diagnosis with others so you can prioritize your needs. Dont shy away from being honest with your family.
Find A Parkinson’s Expert
Finding a doctor who is an expert in Parkinsons disease can help you get the best possible care. Look for a neurologist, a doctor who works with brain and central nervous system conditions such as Parkinsons. When possible, a movement disorder specialist a neurologist with additional training to treat people with Parkinsons at every stage of the disease can be a key addition to a quality care team.Neurologists with Parkinsons expertise and movement disorder specialists can often recommend other healthcare professionals who can help treat day-to-day challenges. A holistic, team-based care approach can help you live well with PD.
Also Check: What Is The Progression Of Parkinson’s Disease
Home Safety Considerations For Parkinsons Disease
Mobility problems are common symptoms of Parkinsons disease, therefore maximizing the safety and accessibility of a patients home is a top priority. Since seniors with PD often use mobility aids like canes, walkers, rollators or wheelchairs, wide, clear pathways in rooms and hallways are important. The following home elements can make it difficult for a person with limited mobility to get around their home safely.
You May Like: Jobs For People With Parkinsons
Parkinsons Disease Is A Progressive Disorder
Parkinsons Disease is a slowly progressive neurodegenerative disorder that primarily affects movement and, in some cases, cognition. Individuals with PD may have a slightly shorter life span compared to healthy individuals of the same age group. According to the Michael J. Fox Foundation for Parkinsons Research, patients usually begin developing Parkinsons symptoms around age 60. Many people with PD live between 10 and 20 years after being diagnosed. However, a patients age and general health status factor into the accuracy of this estimate.
While there is no cure for Parkinsons disease, many patients are only mildly affected and need no treatment for several years after their initial diagnosis. However, PD is both chronic, meaning it persists over a long period of time, and progressive, meaning its symptoms grow worse over time. This progression occurs more quickly in some people than in others.
Pharmaceutical and surgical interventions can help manage some of the symptoms, like bradykinesia , rigidity or tremor , but not much can be done to slow the overall progression of the disease. Over time, shaking, which affects most PD patients, may begin to interfere with daily activities and ones quality of life.
Recommended Reading: What Does End Stage Parkinson’s Look Like
Learn Everything You Can About The Disease
Parkinsons disease is a movement disorder. If youre a caregiver for someone living with Parkinsons, youre likely familiar with some of the symptoms of the disease.
But do you know what causes its symptoms, how the condition progresses, or what treatments can help manage it? Also, Parkinsons doesnt manifest the same way in everyone.
To be the best ally for your loved one, learn as much as you can about Parkinsons disease. Do research on reputable websites like the Parkinsons Foundation, or read books about the condition.
Tag along for medical appointments and ask the doctor questions. If youre well informed, youll have a better idea of what to expect and how to be the most help.
Find The Best Options For Assisted Living For Parkinsons Disease
When researching potential options for assisted living, look for a community with a multidisciplinary treatment approach. Living spaces that get patients out of their rooms and moving around can offset the progression. Skilled staff can keep trained eyes on residents and provide quick medical attention. A sense of community will also go a long way to normalize the disease and make your loved ones feel at home.
Know that even in the later stages, theres still potential for a patient to come into a community of encouragement and specialized care and see incredible results.
At Vineyard Bluffton, the professional staff perform assessments on a regular basis as well as watch for any change in conditions to assist in monitoring and making sure that those with Parkinsons Disease get the care that they need.
Also Check: Are Weighted Blankets Good For Parkinson’s Patients
Parkinsons Disease And Movement Disorders Center
Our center provides compassionate and timely treatment to patients with movement disorders, such as dystonia, ataxia, essential tremor and similar conditions. But our mission goes beyond patient care excellence. By offering educational events and support groups, we empower patients and caregivers to become better partners in their health.
Dont Miss: Parkinsons Posture And Gait
Make Your Loved Ones Life A Little Easier With These Thoughtful Gifts
Our editors independently research, test, and recommend the bestproducts youcan learn more about ourreview process here.We may receive commissions on purchases made from our chosen links.
Parkinsons disease is a progressive disorder that develops as a result of losing dopamine-producing neurons. These cells are mainly located in the part of the brain called substantia nigra pars compacta, explains movement disorders neurologist and Parkinsons expert Lynda Nwabuobi, MD. With degeneration of these cells and hence, depletion of dopamine, Parkinsons disease includes symptoms such as tremor, bradykinesia , and rigidity manifest.
This condition can make it more difficult to complete everyday tasks, like moving about the house, putting on clothes, and even speaking. It can be challenging to manage Parkinsons, especially on your own, so having friends and family there to support really can make the difference. Dr. Nwabuobi says its important to remember that Parkinsons is not fatal and many people live full enriched lives with the condition.
One of the ways to help someone in your life dealing with Parkinsons this holiday season is to give them a present that not only makes them smile, but works to make their life more manageable and puts some level of control back in their hands. Here are some gift ideas theyll be sure to love and appreciate.
Dont Miss: Parkinsons Disease Treatment Guidelines
Don’t Miss: What Not To Eat With Parkinson’s
What Are The Symptoms Of End
Stage four for Parkinsons disease is often called advanced Parkinsons disease because people in this stage experience severe and incapacitating symptoms. This is when medication doesnt help as much and serious disabilities set in.
Theres an increased severity in:
- How you speak a softer voice that trails off.
- Falling and trouble with balance and coordination.
- Freezing a sudden, but temporary inability to move, when you start to walk or change direction.
- Moving without assistance or a wheelchair.
- Other symptoms such as constipation, depression, loss of smell, low blood pressure when going to stand up, pain, and sleep issues.
Many times someone with advanced PD cant live on their own and needs help with daily tasks.
Stage five is the final stage of Parkinsons, and assistance will be needed in all areas of daily life as motor skills are seriously impaired. You may:
- Experience stiffness in your legs. It may make it impossible to walk or stand without help.
- Need a wheelchair at all times or are bedridden.
- Need round-the-clock nursing care for all activities.
- Experience hallucinations and delusions.
As Parkinsons disease progresses into these advanced stages, its symptoms can often become increasingly difficult to manage. Whether you or your loved one with end-stage Parkinsons lives at home, in an assisted living facility or a nursing home, hospice services can optimize your quality of life and that of your family members as well.
Complex Parkinson’s Disease And Palliative Care
Complex Parkinson’s disease is defined as the stage when treatment is unable to consistently control symptoms, or the person has developed uncontrollable jerky movements .
These problems can still be helped by adjustment or addition of some of the medications used to treat Parkinson’s disease, under the supervision of a doctor with a specialist interest in Parkinson’s disease.
As Parkinson’s disease progresses, you’ll be invited to discuss the care you want with your healthcare team as you near the end of your life. This is known as palliative care.
When there’s no cure for an illness, palliative care tries to alleviate symptoms, and is also aimed at making the end of a person’s life as comfortable as possible.
This is done by attempting to relieve pain and other distressing symptoms, while providing psychological, social and spiritual support for you and your family.
Palliative care can be provided at home or in a hospice, residential home or hospital.
You may want to consider talking to your family and care team in advance about where you’d like to be treated and what care you wish to receive.
Recommended Reading: What Helps Parkinson’s Patients Sleep
Parkinsons And Your Spouse Or Partner
Schedule regular open, honest and frank discussions with your significant other. Give your partner room to voice frustrations not only with Parkinsons disease but with you. Talk about money issues on some sort of regular basis as well, as issues like this can very easily create background anxiety in even the best of times.
The two of you should consider some sort of couples therapy or regular meetings with some trusted, impartial observer who can provide a forum for sharing frustrations and ideas on how to overcome those frustrations. You need to be able to talk about the inevitable role changes that occur when Parkinsons enters the picture.
When you were healthy, perhaps you both worked and made near-equal amounts of money, but now perhaps your contribution to the familys finances is not as great as it once was. If this is the case, your spouse might need to work more at a time when he or she also needs to put in more time to care for you and your needs. How do you feel about this? How does your partner feel? Talk it out and, if need be, talk it out with a counselor.
It is amazing how effective talking can be. Just sharing feelings and fears can resolve a million problems. If your spouse is stressed at all the new obligations she faces in caring for you, you, in turn, feel depressed by your helplessness. Sharing your feelings with one another will defuse any resentment that tends to build in reaction to the pain and stress you both inevitably feel.
Stage Four: Symptoms Are Severe And Disabling And You Often Need Assistance To Walk Stand And Move
Stage Four Parkinsons disease is often called advanced Parkinsons disease. People in this stage experience severe and debilitating symptoms. Motor symptoms, such as rigidity and bradykinesia, are visible and difficult to overcome. Most people in Stage Four arent able to live alone. They need the assistance of a caregiver or home health aide to perform normal tasks.
Dont Miss: Que Es La Enfermedad De Parkinson Y Sus Sintomas
Read Also: How To Know If You Have Parkinson’s
Remind Them To Remain Hopeful
Help them to remain hopeful, persistent, and positive. Speak quietly to yourself and promise there will be better days. Whisper gently to yourself and provide assurance that you really are extending your best effort. Console your bruised and tender spirit with reminders of many other successes. Offer comfort in practical and tangible ways – as if you were encouraging your dearest friend. Recognize that on certain days the greatest grace is that the day is over and you get to close your eyes. Tomorrow comes more brightly… Mary Anne Radmacher