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Tuesday, June 18, 2024
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How To Support Someone With Parkinson’s

Parkinsons Disease And Movement Disorders Patient Support

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The Norton Neuroscience Institute Cressman Parkinsons & Movement Disorders Center is dedicated to offering diagnoses and advanced treatments for people with Parkinsons disease and related movement disorders. Along with clinical care, support resources and education at every step, patients and their family members play an important role in the holistic care we provide.

With treatment and support for the whole patient, not just the disease, Norton Neuroscience Institute is the choice of more patients for their neurological care than any other provider in Louisville or Southern Indiana.

Eating With Parkinsons Disease

Specially designed eating utensils for Parkinsons patients feature padded or built-up handles to help facilitate the eating process. Individuals who have difficulty controlling the fine motor skills necessary for eating and drinking may also benefit from weighted utensils and cups. Knives with a curved blade can allow PD patients to cut their own food with a rocking motion instead of the traditional sawing motion that may be more challenging. Serving meals in bowls or on plates with high lips or sides can make it much easier for patients to scoop food onto utensils and encourages self-feeding. Dishware with non-skid rubber bottoms can be helpful as well.

Read:Dysphagia: How to Help a Loved One Eat and Drink Safely

Prescription medications may also cause side effects like dry mouth, so it is very important to always encourage your loved one to sip on liquids during meals and throughout the day. This will help facilitate eating and swallowing and ensure they stay hydrated.

Be Sure Medications Are Taken

This is crucial: If your loved one is forgetting his or her medicine, he or she may not be functioning as well as possible.

To avoid making mistakes or having to bug or nag your loved one, develop a tool you both agree works, such as a smartphone reminder or a hard-to-miss wall calendar. Being consistent with medication can make a difference in both of your lives and lifestyles.

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What Can A Visit To Hospital Be Like For People With Parkinsons

Luckily, Ingrid hasnt yet needed a long stay in hospital. Her check-ups used to be face-to-face but since the Covid-19 pandemic, theyve all been on the phone. Our in-person appointments were always very positive experiences. Ingrid was seen by specialist Parkinsons nurses at Westmorland General Hospital , at a clinic that was run two days a week.

Theres never any traffic on the journey, and I can drop Ingrid off right outside the door and quickly find a parking space before going back to meet her there are never any issues with parking, which makes the outing much easier. Most of the staff there know us by name, which is really comforting, and our main point of contact there has only changed once in seven years, so they know Ingrid very well, which is very reassuring.

Ask When They Last Saw Their Neurologist

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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.

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Home And Occupational Environments

Patient activities and environmental precautions. Patients should take reasonable care to avoid devices that generate strong EMI, which may cause the neurostimulation system to unintentionally turn on or off. Patients should also avoid any activities that would be potentially unsafe if their symptoms were to return unexpectedly. These activities include but are not limited to climbing ladders and operating potentially dangerous machinery, power tools, and vehicles. Sudden loss of stimulation may cause patients to fall or lose control of equipment or vehicles, injure others, or bring injury upon themselves.

Control of the patient controller.Advise patients to keep the patient controller away from children and pets in order to avoid potential damage or other hazards.

Activities requiring excessive twisting or stretching. Patients should avoid activities that may put undue stress on the implanted components of the neurostimulation system. Activities that include sudden, excessive or repetitive bending, twisting, or stretching can cause component fracture or dislodgement. Component fracture or dislodgement may result in loss of stimulation, intermittent stimulation, stimulation at the fracture site, and additional surgery to replace or reposition the component.

Household appliances. Household appliances that contain magnets may unintentionally cause the neurostimulation system to turn on or turn off.

What Types Of Sensors Are Available

There are also multiple methods of collecting the data:

  • Data passively captured without a patient having to wear any new sensors for example, capturing typing data by placing software on a patients computer with the patient continuing to interact with the keyboard as he/she normally does. Typing data that is collected can include how long a patient spends touching a key and how long it takes between touching one key and the next.
  • Data passively captured by a sensor without the patient having to do any additional tasks the sensor can be placed on the wrist, ankle or trunk. The sensor can also be in the patients cell phone.
  • Data actively captured by a sensor the patient wears the sensor and then performs certain tasks beyond what he/she typically does in his/her daily activities. This could include finger tapping, for example. Sometimes the sensors are too complicated or large for the activities to be performed at home, and the patient needs to come to a neurophysiology lab for the data collection.

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A Lower Protein Diet To Help Meds Work Better

Your diet can impact how well your medication helps to manage common Parkinson’s symptoms, including tremors and constipation.

Diets heavy in protein, for instance, can limit your body’s absorption of levodopa in Sinemet, a common medication used in the management of Parkinson’s disease. As a result, some doctors recommend that people with Parkinson’s limit protein intake to 12 percent of their total daily calories. And taking your medication on an empty stomach before your meals can help your body absorb the drug, notes the Parkinson’s Disease Foundation.

The Michael J. Fox Foundation recommends avoiding certain foods because of possible medication interactions, including:

  • Cured, fermented, or dried meats or fish
  • Aged cheese
  • Fermented cabbage
  • Soy products
  • Red wine and beer
  • Iron supplements
  • In addition, fruits and vegetables in your diet may protect nerve cell function and possibly help keep Parkinson’s symptoms under control. Fruits and veggies also provide fiber, which can stimulate bowel movement and prevent constipation. Ask your doctor for a referral to a nutritionist to help make it easier to follow a healthy diet.

    A Guide To Wearable Tech And Parkinsons Disease

    Apps and devices can help people with Parkinson’s

    For those of you who read my blog last week, you are aware that the main theme of the International Congress of Parkinsons Disease and Movement Disorders was Technology in the Diagnosis, Monitoring and Management of Movement Disorders. This inspired the topic for my current blog wearable technology in Parkinsons disease.

    Wearable technology refers to numerous methods by which movement information is captured on a continuous basis using various sensors worn by a patient. The basic technology being used in the research efforts currently underway typically consist of various combinations of accelerometers and gyrometers . The technologies differ mainly in the algorithms used to interpret the data that is collected.

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    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

    Get Outside And Walk Together

    Drop by and say hello and get a feel for their mood. Are they frozen-in-form or just slightly rigid? The goal is simple, to go outside and, for example, walk to the mailbox and back. Tell them how valuable exercise is proven for people-with-Parkinsons, no matter what stage of their disorder or their age.

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    Learn More About How Parkinsons Affects Families & Relationships

    Much more can be found in a powerful new edition of Davis Phinney Foundations free Every Victory Counts® manual. The Every Victory Counts manual has an entire section on Parkinsons and the family along with tools care partners may find useful along their caregiving journey.

    Its jam-packed with up-to-date information about everything Parkinsons, plus an expanded worksheets and resources section to help you put what youve learned into action. Color coding and engaging graphics help guide you through the written material and point you to complementary videos, podcasts and other materials on the Every Victory Counts companion website. And, it is still free of charge thanks to the generosity of our sponsors.

    Request your copy of the new Every Victory Counts manual by clicking the button below.

    What Is A Medical Power Of Attorney

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    A medical power of attorney, sometimes called a durable power of attorney for health care, is a legal document that gives another person the ability to make medical decisions on your behalf if youre unable to make the decisions. In the United States, there are some specific state laws for setting up a medical power of attorney. The person you choose may be referred to as your:

    • Health care agent
    • Health care attorney-in-fact
    • Patient advocate

    A medical power of attorney agent must follow any predetermined guidelines that you specify. However, this person can make significant decisions, including whether to continue any life-sustaining treatment you may eventually need. Your agent may also decide if you will be an organ donor after death, but this persons authority otherwise ends once youre no longer living.

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    Adapting To Life With Parkinsons

    From the time of diagnosis, you and the person you care for will probably experience a range of emotions, such as, sadness, fear of the future or anger. Communicating well with each other so that you can each express your feelings or concerns will help you both to manage them and adjust to changes over time as Parkinsons progresses.

    Initially you may not need to provide much physical support. Many people with Parkinsons remain independent for years. What your caring role involves will depend on how the condition affects the person you care for, the activities they do and what resources are available to help them.

    One of the most important things you can do is to educate yourself and the person you care for about Parkinsons. It is an unpredictable condition but being aware of symptoms, treatment options, available resources and the likely progression will mean that you can anticipate and better prepare for physical and emotional difficulties as they arise. Make sure that you know how to get the help you need when the time arises.

    Maintaining a positive attitude and a sense of humour will undoubtedly help you both to cope. Encourage as much independence as possible, allowing the person extra time to do things if necessary. Remember too that symptoms tend to fluctuate from day to day, and even hour to hour, so be flexible about how much support you need to give.

    Medical Power Of Attorney And Parkinsons Disease

    A Parkinsons disease diagnosis is a life-changing event that can alter the way you think about your future. Having Parkinsons can put life into perspective and bring up issues that you may not have thought about, including how you want to be cared for if you cannot advocate for yourself.

    Several members of MyParkinsonsTeam have said theyd like to get advance directives in place but havent gotten around to it. As one member shared, I still need to get power of attorney for my daughter over me just in case, since I live with her and two of my grandkids. Another said, Needed to make my daughter power of attorney cant sign my name anymore ugh!

    If youve been dreading the process of creating a living will or filling out advance directives, you may have more peace of mind after checking off this critical task from your to-do list. As another member wrote: Im going to be brief. You need a medical power of attorney. You can get a form and complete instructions on Google.

    Here are some details on medical power of attorney and how to select your health care agent.

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    Discuss Openly With Your Loved One

    Together, you can develop strategies to implement them according to the stages of the disease. This will help you maintain the health and quality of life of you and your loved one. Having a game plan can help you maintain your energy to enjoy the good moments with your loved one.

    Remember that even though you are there to help them, your loved one wants to maintain their independence and find ways to meet certain needs on their own.

    Keep a positive attitude

    Symptoms of Parkinsons disease are unpredictable and different for everyone. The physical and mental state of your loved one can change greatly from one day to another depending on medication effectiveness. Some activities, events or travel plans will likely be cancelled or postponed, but your attitude can have a significant impact on how you feel. Focus on what the person with the disease is capable of doing rather than what they cannot do.

    Enjoy life and create good memories. The ones you were used to may be less frequent, but you have the opportunity to create new and different enjoyable moments.

    Getting Dressed With Parkinsons Disease

    Taking Care of Someone with Parkinsons Disease

    Dressing someone with Parkinsons disease may become a time- and labor-intensive task as their motor skills and strength wane. In addition, muscle stiffness and painful muscle cramps can make dressing difficult and unpleasant. Whenever possible, replace buttons or zippers with Velcro or magnetized fasteners. Opt for loose-fitting clothing, which is easier and more comfortable to get on and off. An extra-long shoehorn can help with putting on shoes while seated. One of the most important things for a caregiver to remember when providing assistance with dressing is to go slow and set aside plenty of time for this activity of daily living .

    Read:Tips for Dressing Someone with Parkinsons

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    Related Diagnosis: Lewy Body Dementia

    Current research is helping to differentiate dementia related conditions in relationship to Parkinsonâs disease. Doctorâs use a 12-month arbitrary rule to aid in diagnosis. When dementia is present before or within 1 year of Parkinsonâs motor symptoms developing, an individual is diagnosed with DLB. Those who have an existing diagnosis of Parkinsonâs for more than a year, and later develop dementia, are diagnosed with PDD.

    In the simplest terms, Lewy bodies are abnormal clumps of proteins that develop in nerve cells. Cholinesterase inhibitors, medications originally developed for Alzheimerâs disease, are the standard treatment today for cognitive DLB and PDD symptoms. Early diagnosis is important, as DLB patients may respond differently than Alzheimerâs disease patients to certain drug, behavioral, and dementia care treatments.

    This challenging, multi-system disorder involving movement, cognition, behavior, sleep, and autonomic function requires a comprehensive treatment approach to maximize the quality of life for both the care recipient and their caregiver. It is very important to pay attention to symptoms of dementia and to search for an expert clinician who can diagnose the condition accurately.

    Cubii Pro Seated Under Desk Elliptical Machine

    • Fits under your desk or in front of your couch for more exercise opportunities

    • Can be synced to your device to track your mobility throughout the day

    • Quiet, low-impact exercise

    • Very heavy would be hard to relocate or move into new position

    • Some users report that the app is ineffective or unreliable

    While there is no cure for Parkinsons, a combination of exercise and the proper pharmacological therapy can alleviate symptoms, says Dr. Nwabuobi. Animal data suggests that exercise affects dopaminergic neurotransmission and neuroplasticity. Clinically, it helps patients maintain their balance, mobility and activities of daily living, she explains further. The Cubii Pro Seated Elliptical Machine is a great way to get in physical activity throughout the day, whether doing work at your desk or lounging on the couch. Its able to sync with smartphones and fitness trackers to keep an accurate record of your pedaled distance, calories burned, and more.

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    How New Hospital Facilities Can Help People With Parkinsons And Their Carers

    Parkinsons is the fastest growing neurological condition in the world and currently, there is no cure. Its a progressive disorder with more than 40 symptoms which affect everyone differently. There are over 40 symptoms, the main ones being tremors, slowness of movement and rigidity. Clive*, from Kendal, cares for his wife, Ingrid*, who is living with Parkinsons. He explained some of the details which need to be considered when building new hospital facilities for patients with specific needs, such as supporting and helping those with Parkinsons, and their carers.

    Pro’s Virtual Art Show


    Last years virtual art show was such a hit, we will do it again this year. Our wellness programs have included hobbies, gardening, singing, and creative writing. We know that creativity in all its expressions improves wellbeing. This program will feature visual arts.

    Lets make it a special night and take a tour through our virtual art show highlighting local artists who are living with Parkinsons. These artists are gathering to share their work with us! Invite your friends, celebrate and visit with some artists in our PD community.

    FRIDAY, December 10th, 4:00 5:30 PM

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