New Spoon for Hand Tremors

New Spoon for Hand Tremors Makes Mealtime Easier

 

 

 

 

Picking up a utensil to feed one’s self is a luxury that people take for granted. For others with neurological conditions causing tremors, this basic activity can be a source of frustration and embarrassment.

 

 

 

 

GYENNO’s ‘Smart Spoon’ tries to eliminate that problem. It’s a stabilization utensil gadget that offsets 85 percent of unwanted tremors for users affected by diseases like Parkinson’s.

The spoon has been in production for almost a year, and was revealed at the Consumer Electronics Showcase in Las Vegas in early January 2017.

 

 

 

 

While GYENNO’s product is still new to the North American consumer’s market, the technology has been employed in China for a while.

 

The utensil uses sophisticated stabilization control algorithms and motion learning technology to adjust to the user’s tremors, helping the person eat regularly.

 

This video is produced by the manufacturer, and demonstrates how the GYENNO Smart Spoon helps people with hand tremors eat independently:

 

 

 

 

 

 

 

The Smart Spoon is similar to another stabilization utensil from Lift Labs called Liftware, a Google purchase back in 2014.

GYENNO holds a patent for their own spoon’s tech, which they’ve called the best on the market.

 

 

 

 

“The GYENNO uses special PID [proportional–integral–derivative controller] control technology and attitude stabilization technology to make a better performance, higher frequency response and more accurate position control,” said Dehuai Li, marketing officer at GYENNO, in an interview with Motherboard.

 

“That makes [the GYENNO Spoon] 85 percent tremor canceling while Liftware just 75 percent.”

 

 

 

The GYENNO Package Contains:

 

1 Spoon Head

1  Fork Head

1  Intelligent

Hand Shank

1 Power Cable (the fully-charged battery can run for 180 minutes).

 

 

 

The GYENNO Spoon already has hundreds of users who have raved about being able to feed themselves once again, Li said.

 

  • Read Amazon consumer reviews of the GYENNO Spoon.

 

“You want to feed yourself, you don’t want someone else to feed you,” he said. “It improves your confidence and dignity. Many of these diseases have no cure, so we want to improve the quality of life.”

 

Through its cloud-based data collection, GYENNO has created its Medical Chronic Disease Management program to provide physicians and scientists with valuable information and statistics on the progression of symptoms and the disease in general.

 

For example, GYENNO Medical synchs the real-time symptoms of hand movements recorded by the GYENNO Spoon to study how the hand movements and tremors are expressed (frequency and amplitude, speed, accelerated speed and rotation of hand tremor). GYENNO collects data from users to assist scientists and physicians with research on disease progression, utilizing data-mining technology to explore data characteristics to help with early Parkinson’s Disease screening.

 

 

This video discusses everything that comes in the GYENNO Smart Spoon box, and provides a brief review:

 

 

 

 

Thoughts, questions, tips?  Feel free to comment below.

 

 

 

 

 

 

You may also be interested in:

Caregiving for Parkinson’s Disease

Parkinson’s Disease Myths

Parkinson’s Swallowing and Dental Problems

Parkinson’s Disease and Low Blood Pressure

Getting the Right Testing for Dementia

About Me

Create Your Own Blog

 

 

Please help others by sharing this post. Share on Google+Tweet about this on TwitterShare on LinkedInDigg thisPin on Pinterest

Book Review of “Our Dementia Diary”

 

Book Review of

“Our Dementia Diary”

 

 

 

Rachael and Irene were supposed to live a long and happy life, retire and travel the world. But a thief called Alzheimer’s visited in 2004 and began tearing apart the lives they had carefully built for a quarter century.

This is a remarkably honest story of the enduring love between two people coping with uncertainty and the eventual loneliness of losing a spouse.

The author, Rachael Dixey, professor at Leeds Beckett University copes by keeping a journal—a way to release her feelings. She ties these entries with “interpolations” to make sense of it all. She wonders if a more appropriate title might be Fifty Shades of Dementia.

 

 

Dixey manages to find strength amidst the tears to take care of herself and find the humor. She hires in-home caregivers for Irene while she works (for sanity). When Irene is hospitalized and then placed in a care home, she visits almost every day and soon realizes the toll it takes when Irene recognizes her and says, “I love you” and the next day, forgets and walks past her in the corridor.

During the nine-years, from Irene’s diagnosis to her passing, Rachael writes of the full range of emotions—from the love she and Irene shared to missing Irene, feeling lonely as a singleton, dating (nothing lasts but gives her strength to be stronger for Irene), and even contemplating Irene’s death. Through it all, she visits Irene regularly, cares for her, feeds her, and feels Irene in every room of their house.

She recounts with humor the folly of dealing with social services. Irene attends adult day services in a county that only covers healthcare and receives healthcare in a county that covers social services such as adult day care. After almost a year, they work it out where she feels assured of not losing their home. Meanwhile, she takes time off periodically. The time away gives her greater appreciation for what she and Irene had despite some funny (in hindsight) foibles during her travels.

She recounts the good times they had going on “epic walks,” camping, exploring the mountains, trees, and sunsets. She misses those quiet mornings together. She struggles to remember the bad unusual behaviors for five years before Irene’s diagnosis at age 57. Home movies help her see the beginnings of Irene’s inexplicable behaviors. She’s able to piece together those embarrassing outbursts when Irene would storm out of restaurants after finding something wrong with her meal. She recalls the desperate cries at home when Irene couldn’t find a piece of clothing she had worn for several days in a row (likely because Rachael removed it for washing). And yet, Irene’s heart-wrenching cry early on returns to her from time to time, “I don’t know who I am anymore. Please help me.”

Written by an author based in the UK gives us Americans a refreshing expression of care between partners. Her writing is characterized as informed humility. We gain greater awareness and knowledge of what it’s like to live with Alzheimer’s while feeling the angst and pain of losing her soulmate. Written by one of a gay couple gives us an endearing portrait of how love among LGBTs is no different than love among (dare I say, traditional?) male-female partners. Oftentimes, because of ongoing discrimination, the bond of their love seems stronger.

I’m glad she chose to write, Our Dementia Diary – Irene, Alzheimer’s and Me and that her and Irene’s story is being shared. The LGBT caregiver’s voice is one that needs to be heard.

 

Based on a review by Brenda Avadian, MA,  who serves as President of The Caregiver’s Voice.

 

 

More information from Amazon:

 

This is a love story from start to finish, Irene and Rachael’s. Based on the diaries of Rachael Dixey who looked after her civil partner Irene after she developed early onset Alzheimer’s disease, the book opens with the lines: Irene, Alzheimer’s and me – Alzheimer’s came between us. It does that, drives you and the love of your life apart, going your separate ways because you cannot follow.

That’s the story really, that’s it. The end. But it is also the beginning of the story, which shows how life can still be lived despite losing a life partner to dementia, and how to cope emotionally and practically with a disease that robs you of your loved one a thousand times before they die.

 

 

The story charts the daily decline and inexorable loss of Irene to dementia. With the dramatic deterioration in Irene’s health Rachael turns from lover and soul mate to career and, finally, single woman. Eventually, no longer able to cope with Irene at home, she makes the agonizing decision to allow Irene to be put in a care home. There she spent her last six years. When she died aged 66, the couple had spent half their life together.

This book is a powerful and moving account of the progression of dementia, and raises serious questions about how our society cares for those who develop the disease, especially at a young age and in the gay, lesbian community. It also deals with loss and grief, during the illness and afterwards. Their memoir will be invaluable for anyone affected by dementia, those working in mental health and those caring for a loved one with a life-changing and incurable illness.

Our Dementia Diary tells with brutal honesty of love, loss and life with Alzheimer’s and opens up discussion of how dementia can be handled better.

 

 

 

Also Recommended:

The 36-Hour Day, 5th Edition A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss

This best seller is the definitive guide for people caring for someone with dementia. Now in a new and updated edition, this best-selling book features thoroughly revised chapters on the causes of dementia, managing the early stages of dementia, the prevention of dementia, and finding appropriate living arrangements for the person who has dementia when home care is no longer an option.

 

 

 

The author, Nancy L. Mace, M.A., is currently teaching dementia care internationally. She has been a consultant to the Office of Technology Assessment, U.S. Congress, and to the Alzheimer’s Association, and she was an assistant in psychiatry and coordinator of the T. Rowe and Eleanor Price Teaching Service at the Department of Psychiatry and Behavioral Sciences of the Johns Hopkins University School of Medicine.  

 

 

 

 

 

You may also be interested in:

Book Review of “Can’t We Talk About Something More Pleasant?”

A Hospice Reflection

Preparing For Your Elderly Parent to Move In

Avoid or Slow Dementia By Building Cognitive Reserve

The MIND Diet for Fighting Dementia

First Signs of Alzheimer’s

Alzheimer’s, Elevated Cortisol and Your Genes

The #1 Alzheimer’s Care Tip

Preserving Alzheimer’s Patients’ Dignity

Stop Alzheimer’s Wandering

Amazon Echo Great Help for Dementia Patients

Caregivers Can Help With Aphasia

Dementia-Proof Cooking with Fire Avert

Convincing Your Parents to Transition to Assisted Living

FBI Warning: Seniors Getting Scammed!

Should You Get a Medical Alert System?

My Review of LifeStation Medical Alert System

Jitterbug Touch3 Smartphone Review

Dealing With Caregiver Anxiety

Managing Dementia Related Incontinence

About Me

Create Your Own Blog

 

Please help others by sharing this post. Share on Google+Tweet about this on TwitterShare on LinkedInDigg thisPin on Pinterest

Caregiver Guide to ALS

 

Caregiver Guide to ALS

 

 

 

 

What is ALS?

 

Amyotrophic Lateral Sclerosis (ALS), also called Lou Gehrig’s Disease or Motor Neuron Disease, is a progressive, neuromuscular disease that attacks nerve cells and pathways in the brain and spinal cord.

 

Motor neurons, among the largest of all nerve cells, reach from the brain to the spinal cord and from the spinal cord to muscles throughout the body. When these motor neurons die, the brain can no longer start and control muscle movement. At this time there is no cure for the disease; however, over the past decade, we have made amazing strides in our understanding of the brain, the nervous system and genetics. Discoveries in each of these areas bring hope to people with ALS (PALS) and their families that some day a cure will be found.

 

Amyotrophic comes from the Greek language. “A” means no or negative. “Myo” refers to muscle, and “trophic” means nourishment–“no muscle nourishment.” When a muscle receives no nourishment, it atrophies or wastes away. “Lateral” identifies the areas in a person’s spinal cord where portions of the nerve cells that nourish the muscles are located. As this area degenerates, it leads to scarring or hardening (“sclerosis”) in the region.

 

As more and more nerves and muscles are affected, the person with ALS loses the ability to move, eventually suffering complete paralysis. The muscles used for breathing, speaking and swallowing also become affected. ALS does not affect the person’s mind, senses (feeling, tasting smelling etc.), bladder and bowel function or sexual drive and function.

 

 

Who gets ALS?

 

There are 30,000 people living with ALS in the United States and approximately 6,000 Americans are newly diagnosed with ALS each year. Symptoms usually appear in individuals between the ages of 45-65, though the disease has been reported in both younger and older persons. Survival after the confirming diagnosis is, on average, two to five years.

 

The progression of ALS varies with each individual. Ten percent of those diagnosed with ALS live for ten years or more. Family caregivers, physicians, nurses, physical therapists, speech therapists/pathologists, occupational therapists and social workers all working together with the person with ALS can help ensure a high quality of life and as much independence as possible.

 

ALS occurs more frequently in men than in women. For 90-95% of all ALS cases, there is no known cause. These cases, which appear to occur at random, are referred to as sporadic ALS. Between 5-10% of ALS cases are inherited. This genetic form of ALS is known as familial ALS. Sporadic and familial ALS do not differ in symptoms or progression. ALS is not contagious.

 

 

Symptoms

 

Some patients become aware of the onset of the disease when their hands become clumsy, causing difficulty in the performance of tasks like unlocking doors or writing. Others experience weakness in the legs and may trip or stumble. Other people notice they have problems speaking or difficulty swallowing.

 

ALS may be present for some time before any symptoms are noticed. This lack of noticeable symptoms occurs because the remaining functioning nerve cells compensate for the lost or damaged nerve cells. One early symptom is generalized fatigue. As muscle cells deteriorate, patients may experience stiffness, occasional jerking of the arms or legs, or twitching (fasciculations). Often symptoms begin in the hands and feet, then travel inward toward the center of the body. One side is usually more affected than the other. Eventually paralysis may be complete, except for the muscles of the eyes.

 

 

Diagnosis

 

There is no specific clinical test that can identify ALS. Diagnosis is made by a neurologist through a physical examination, a thorough patient medical history, and neurological testing. Diagnostic testing often includes the electromyogram (EMG) to test muscle activity, CT Scan or MRI (Magnetic Resonance Imaging), and extensive blood work. Sometimes muscle and/or nerve biopsies are performed.

 

The diagnostic process involves ruling out other potential causes of the symptoms the person is exhibiting. Because there is no conclusive test, people may find themselves with a diagnosis of probable or possible ALS until further identifying symptoms appear.

 

A diagnosis of ALS can be devastating to both the individual and the family. Anger, denial, fear, and a sense of loss are common reactions. For those who have been through a lengthy diagnosis process and the anguish of not having a diagnosis, finally knowing that they have ALS may actually bring a feeling of relief.

 

 

Treatment and Management of ALS

 

 

The Physician’s Role

 

The American Academy of Neurology has established guidelines for physicians treating individuals with ALS. These are based upon the following four principles:

 

Patient self-determination and autonomy are priorities; however, the way in which care and information are delivered to the person with ALS and/or his or her family should take into account the social, psychological and cultural background of the family. For example, in some instances the patient may prefer not to know the diagnosis and/or prognosis and the family may appoint someone else as medical decision-maker.

 

Physicians should provide the family with information well in advance of the time that decisions will have to be made regarding treatment options. Everyone involved should understand that decisions may change over time.

 

Caring for a person with ALS requires a coordinated effort among many people including family caregivers, therapists, nurses, and physicians. The physician should be responsible for ensuring the coordination of care from the time of diagnosis to the last stages of the disease.

 

A Living Will (Advance Directives, Power of Attorney for Healthcare) defining the treatment preferences of the person with ALS can be an excellent tool for communication among the person with ALS, the family, and the medical care team. The Living Will document should be reviewed every six months to reflect possible changes in preferences. This can often be a difficult topic and the physician should help by offering the family a chance to talk about it and to review it. In preparation, the physician should provide the family with information about the terminal phases of the disease.

 

Sample Health Care Directive

You can create, save and print out a legal Living Will/Health Care Directive simply and inexpensively online at LawDepot.  You can also log back in to make changes as necessary.  This service is available to U.S., Canadian, UK and Australian citizens.

See a Sample Health Care Directive

 

Helping people with ALS and their families requires empathy and sensitivity on the part of everyone involved.

 

 

Drug Treatment

 

In 1995, the FDA approved riluzole (Rilutek) the first and only drug for the treatment of ALS. Clinical trails of riluzole showed that the drug had a modest effect (2-3 months) on slowing the progression of ALS. Researchers continue to conduct clinical trails of potential new treatments for ALS. People with ALS (PALS) may want to discuss with their physician the option of participating in a clinical trial.

 

Approximately 50% of those affected by ALS may exhibit uncontrollable laughter or crying. This is referred to as psuedobulbar affect. Depression can also be a symptom. Some PALS experience Sialorrhea, drooling. All of these symptoms (depression, uncontrollable laughing/crying, and drooling) can be treated with medications and should be brought to the attention of the physician.

 

 

Living with ALS

 

While it is true that there is no cure for ALS, much can be done to help the person live with the disease. Treatment aimed at relieving symptoms can be very effective.

 

Generally, people with ALS should continue their usual daily activities, stopping before they become fatigued. They should be encouraged to set their own limits of exertion, and to plan how they will use their energy and strength. The physician will probably suggest exercises, including breathing exercises, to strengthen unaffected or less-affected muscles. These exercises are not vigorous or tiring, but are intended to help maintain mobility and prevent joint stiffness and muscle contracture.

 

There are a wide variety of assistive devices for enhancing the quality of life for the person with ALS:

 

 

Mobility

By working with physical and occupational therapists, PALS and their caregivers can identify appropriate devices to help maximize independence and reduce caregiver strain as changes in mobility occur. Braces, canes and walkers can help PALS maintain independent mobility for as long as possible.

As the disease progresses, wheelchairs, lifts and other special equipment can enable PALS and their caregivers to work as a team to keep the person with ALS connected to the world around them and to ensure appropriate care.

 

 

Communication

A speech therapist can help PALS maintain their speaking ability for as long as possible; however, the loss of speech does not mean the loss of the ability to communicate. Assistive communication devices, from simple boards to sophisticated electronic devices and computer applications, permit communication even into the latest stages of ALS.

 

 

For more communication help, see Caregivers Can Help With Aphasia

 

Rapid advances in technology have resulted in products that dramatically increase the independence of people with very limited mobility, allowing them to “speak,” operate lights and other controls, and remain contributing members of their families and communities. As of January 2001, Medicare policy was changed to include coverage of many of these communication devices.

 

 

 

Breathing

As muscles weaken, breathing becomes more difficult and less effective in the person with ALS. Individuals may find that they have problems sleeping, wake up feeling tired or wake up with a headache. Several options exist for individuals whose breathing becomes inadequate.

 

Several non-invasive options for helping breathing exist. One of the most frequently used is called a BiPAP (biphasic positive airway pressure). The person with ALS wears a mask over his or her nose at night connected to the BiPAP, which helps increase the flow of air into and out of the lungs.

 

When the person requires more help breathing than can be offered with any of the noninvasive methods, a permanent ventilator can be used. The ventilator then does the person’s breathing for him or her. This option can prolong the life of a person with ALS but it increases the need for care and the cost of care. The willingness and availability of caregivers can impact this decision.

 

Deciding whether or not to use the various types of assistive breathing devices will be one of the hardest decisions PALS and their families need to make. Preferences regarding breathing support should be discussed with the physician and included in the Advanced Directives.

 

 

Nutrition

It is important for people with ALS to receive proper nutrition and to maintain a normal weight. As problems with swallowing develop, food can be processed to make it easier to swallow. A nutritionist or registered dietitian and speech therapist or speech pathologist can help develop strategies to ensure that the person is receiving enough nutrients, calories and fluids.

 

If the person is not getting enough food, or if choking and food inhalation become a problem, he or she may want to consider a feeding tube. The tube, referred to as a PEG, is surgically inserted into the person’s stomach. Food goes through the tube and enters the stomach directly. This can be another very difficult decision for PALS and their families. Preferences regarding the placement of a PEG should be discussed before the need arises and included in the Advanced Directives. As with all treatment decisions, they should be reviewed periodically.

 

For more help, see End of Life Feeding and Nutrition

 

 

Gathering the appropriate resources to meet the challenges of ALS can be financially difficult for many families. Both the Amyotrophic Lateral Sclerosis Association (ALSA) and the Muscular Dystrophy Association (MDA) have programs through which people with ALS can borrow assistive devices and equipment that they might otherwise not be able to afford.

 

 

Reaching Out

It is important that the person with ALS and his or her primary caregiver get the information and support they need. Financial, emotional and caregiving challenges can take their toll on PALS and their caregivers. Preparing for upcoming changes, establishing good communication with the physician and other medical team members, and pulling together a supportive community of family, friends, and social service professionals will help ensure the highest possible quality of life.

 

While the care needs of PALS can be intense, caregivers must also be aware of their own needs for respite, rest and emotional support. A diagnosis of ALS does not mean an end to enjoyment. PALS and their caregivers will find that they continue to laugh, to find joy in their lives and to gain strength from the love of their families and friends.

 

 

Best Source:

 

Amyotrophic Lateral Sclerosis – A Guide for Patients and Families by Hiroshi Mitsumoto, MD (Third Edition)

This extensively revised and rewritten new edition of the bestselling Amyotrophic Lateral Sclerosis: A Guide For Patients and Families addresses all of those needs, and brings up-to-date important information to those living with the reality of ALS.

The book is completely revised throughout and contains NEW information on:

  • Recently developed approaches to treating ALS symptoms
  • Use of non-invasive ventilators
  • Multidisciplinary team care
  • New guidelines being developed by the American Academy of Neurology for patients with ALS
  • The use of riluzole (Rilutek) to treat ALS

Amyotrophic Lateral Sclerosis covers every aspect of the management of ALS, from clinical features of the disease, to diagnosis, to an overview of symptom management. Major sections deal with medical and rehabilitative management, living with ALS, managing advanced disease, end-of-life issues, and resources that can provide support and assistance in this time of need.

 

 

Also Recommended:

 

Don’t Buy Too Many Green Bananas – Living With ALS by Delores M. Warner

This memoir was from a journal the author kept regarding the progression of ALS (Lou Gehrig’s Disease) as her husband fought this devastating disease.

She and her husband were problem solvers, and as she cared for him at home, the two of them worked out ways to compensate for his declining strength. If you know someone who has been diagnosed with ALS, they and their families will find this book provides information on resources and approaches to dealing with the physical aspects, in the story as well as the back of the book for quick reference. As well, the author writes an unflinching account providing insights into coping with such diagnosis with grace.

 

 

I Remember Running – The Year I Got Everything I Ever Wanted – and ALS by Darcy Wakefield

A little over a year ago, Darcy Wakefield was a single, 33-year-old, athletic, workaholic English professor, a vegetarian who had never had a serious health problem or injury.

Then she was diagnosed with ALS, and her world turned upside down.

I Remember Running is Darcy’s story of change and loss and challenges during her first year with ALS, as she struggles to make sense of her diagnosis and redefine herself in the face of this terminal illness.

With unflagging courage, wit, and eloquence, Darcy shares what she calls her “fast-forward” life, a life in which she applies for disability, leaves her job, and plans her own funeral as well as meets and moves in with her true love, buys a house, and gives birth to her first child in less time than it takes most of us to accomplish even one of these things.

Beautifully written and wholly inspiring, I Remember Running proves that it is possible to live a rich, meaningful life after being diagnosed with a terminal illness. This book will move readers to see the world in a different light.

 

 

You may also be interested in:

Caregivers – Protecting Yourself From Heavy Lifting Injuries

Shower Chair or Bath Bench Guide

Guide to Bathroom Grab Bars and Hand Rails

Find the Right Power Wheelchair

Mobility Scooter Buying Guide

Choosing a Medical Walker

Choosing a Walking Cane

Choosing a Transport Chair

Getting Your Wheelchair Into the Car

Caregivers Can Help With Aphasia

End of Life Nutrition

About Me

Create Your Own Blog

 

Please help others by sharing this post. Share on Google+Tweet about this on TwitterShare on LinkedInDigg thisPin on Pinterest