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ALS Worldwide
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ALS Worldwide
June 01, 2015

Newly Diagnosed? Who and What You Need to Know!

When an ALS/MND diagnosis is delivered early in the disease course, patients often have difficulty imagining what is to come. When they are walking, talking and eating with little difficulty, it becomes unfathomable to think the symptoms will get worse. Indeed, it is contrary to any patient's best interest to begin treatment by saying there is no way to stop the decline.

Newly diagnosed patients are often bombarded with books filled with pictures of wheelchairs and feeding tube options--the last thing he or she wants to see. Visits to the neurologist frequently focus on measurement of decline, a singularly depressing purpose, and one that can even discourage patients from returning to the clinic for follow-up examinations.

When time is of such importance, patients prefer not to spend it waiting to be seen to be given more bad news. And yet it is precisely because patients do not return to their neurologists that clinical trials suffer for lack of subjects, creating a downward spiral that has kept ALS/MND previously locked in a singularly negative space. A major focus should center on ways to keep the patient engaged and participatory in clinical trials and willing to return to the clinic on a regular basis.

Patients return to the clinic every three to six months after diagnosis. As the disease worsens and travel becomes more difficult, access to quality care diminishes, impairing quality of life. This prevents neurologists and clinicians from doing as much as they can for each patient.

A change in perspective and approach can create a better system that satisfies both patients and physicians. In the following article from ALS Worldwide's publication, A Paradigm Shift in ALS/MND Clinic Care, ALS/MND clinic personnel are described in detail, from neurologist to therapists. Our hope is that by better understanding a clinic's resources, patients and their families will be able to use the resources for the patient's greatest benefit.

Neurologist

It is universally acknowledged that ALS/MND is one of the most devastating diseases known to man. The neurologist must convey some of the most challenging and difficult messages to the ALS patient. Becaus of this, it is so important that their communication be constructive and sensitive. Low levels of respiration are an indication that a serious discussion needs to take place to make certain the patient understands what a tracheostomy and ventilation means, whether a diaphragm pacer is a viable consideration and how soon decisions need to be made.

The same is true when excessive weight loss has ocurred and malnutrition is in clear evidence. Whether or not to have a feeding tube inserted needs to be addressed and discussed fully. The ever present danger of pneumonia and ways to minimize the risk is also an important conversation to initiate. The challenge is to have all of these conversations at the most appropriate time when decisions can be made in a thoughtful and intelligent fashion. At the same time, initiating the conversation either too early or too late can be devastating.

All of this, and more, falls onto the shoulders of the neurologist and often places him or her in a particularly vulnerable position. A patient's stress, discomfort and fear about the unknown future sometimes surfaces as anger and resentment. Explaining the ramifications of the choices a patient makes takes long periods of time and multiple discussions. Psychiatrists spend years training to understand transference issues with patients, but neurologists rarely have the same opportunity in their training. Yet, neurologists are expected to handle all of these issues successfully for one of the most challenging diseases of our time.

Not only do neurologists recommend therapies and medications for patients, they are also involved in clinical trials and research. Recruitment of subjects, deciphering which trials represent the greatest opportunity for success and maintaining a knowledge base of research being conducted in other facilities are all part of the ALS/MND neurologist's responsibilities. The most successful ALS/MND neurologists understand these challenges and rise to meet them.

Physical Therapy

For years, many believed exercise would damage muscles still usable in an ALS/MND patient--but research has disproven this theory. Exercise helps muscles retain their energy and power, and a lack of physical activity can be harmful. If a healthy person lies in bed for a week, when he gets up his legs will be weak, his body unstable and his energy spent. Logically, the same is true for ALS/MND.

A variety of exercises can help maintain muscle memory and strength. Range of motion exercises, arm exercises, bicycling and walking are worthwhile pursuits. A local health club, a personal physical therapist, exericse equipment such as a pedaler, stationary bike or treadmill are all useful options, although none are normally covered by insurance.

Occupational Therapy

As the diesease progresses, many patients have difficulty holding a fork, tying their shoes or buttoning their shirt. While there are many catalogues that contain dozens of items that address these kinds of issues and much more, patients benefit from the attention of a person who knows just the right tool to help ameliorate most situations. Unfortunately, ALS/MND is not a static disease but continually changes, sometimes within as little as a few months. Because of this, access to an occupational therapist who can evalutate the problem and find a solution within the ALS/MND clinic structure is essential.

Nutrition

The nutritionist is one of the most important therapists an ALS/MND patients to see: weight loss is a huge issue for patients, and maintaining an adequate caloric intake is critical.

Several ways exist to maintain a healthy body weight and preserve muscle strength, daily function, and long-term endurance. While loss of appetite an dlack of nutrition can impair the function of the diaphragm, eating too much can increase ventilatory load, all reasons to maintain a healthy body weight. The speech pathologist and dietiian can provide practical advice on meals that are easy and safe to swallow as well as nutritious. More frequent meals and snacks throughout the day, increased calorie content and learning the chin tuck method for safe swallowing can be helpful.

Having a feeing tube installed is an excellent way to continue eating enjoyable, tasty foods while the feeding tube is available for medications, water and nutritional supplements. Smaller portions eaten six times a day are easier to consume than regular full meals. Shakes fortified with protein powder, soy cream, malted powder and high caloric value (HVC) liquid supplement should be consumed daily. Dairy products, often a cause of excessive phlegm, should be avoided. Preparing easily consumed foods, such as those in the cookbook The Houston Methodist Clinic has developed, can provide appetizing options.

Respiration

A respiration therapist and pulmonologist are essential team members who monitor any loss, recommend bi-pap support and inform the patient when their breathing is becoming marginalized. While exercising the diaphragm is rarely discussed, we know that when singers, dancers and musicians who play flutes or saxophones are diagnosed with ALS/MND, they have greater breath control and fewer respiratory issues because their diaphragms have such extraordinary initial strength. Creating exercises for the diaphragm and encouraging activities like yoga or singing can support--and in some cases improve--respiration.

One issue that surfaces regularly is bi-pap support. Patients need to know what their options are, when it is recommended, and what type of equipment to order. It would be particularly helpful if clinics had a variety of face masks available. The same is true for the suction machine that is so beneficial for removing phlegm and excess saliva. By having the equipment on hand, much of the fear associated with these devices can be diminished. Although photographs are helpful, having the actual product available, as is the case at the UC Fresno ALS Clinic, is far better.

Information about the NeuRx Diaphragm Pacing System should also be available for discussion while the diaphragm is still strong. This system requires minimally invasive surgery but once implanted enables enables ALS/MND patients to breathe normally. It has no moving parts, operates silently and is customized to each patient. Invented by Dr. Raymond Onders, this sytem is FDA approved and available from Synapse Biomedical. What makes this sytem particularly beneficial is that it preserves muscle strength and maintains vital capacity.

Speech

The speech pathologist is necessary not only for communication, but to provide ways to help patients minimize choking and maximize chewing and swallowing capability. Exercises to improve speech can be done at home--just reading out loud can help. One of the patient families we are in regular contact with discovered that if he holds his nose, his speech improves. Armed with a nose plug use for swimming, he's able to speak clearly and be understood more successfully. If projection is an issue, a small microphone attached to a shirt collar can be helpful. A voice banking system, currently established in several clinics, is beneficial so that if and when a patient needs speech augmentation devices, their own voice is connected to the computarized system. The speech therapist aware of the challenges ALS/MND patients face helps to minimize their discomfort and maximize their opportunities to maintain communication.

Cognition

10 to 15 percent of ALS/MND patients experience frontotemporal degeneration causing language and behavoral symptoms similar to dementia or Alzheimer's Disease. These changes in behavior, personality and logic can go unnoticed because it is assumed they are due to loss of motor function. Excellent identification tools have been developed by both Forbes Norris and Anne Rowling Clinics. Medications are also available to help control symptoms.

Social Work

Social workers help patients navigate a myriad of social services such as government assistance, disability programs and home care. The Mayo ALS Clinic has a social worker on staff who organizes a support session during the noon lunch hour to share information and enable patient interaction. Others provide monthly support groups to patients and caregivers. Finding transportation, home care, financial aid and other necessary support services can be overwhelming, which is why access to a social worker is important; the challenge is funding this service so it can be included within the clinic construct. 

Massage

Funding for a massage therapist is more of a dream than a reality. However, a weekly massage can do wonders for ALS/MND patients. Monthly massages for caregivers can allow them to recover from the strain caused by the heavy lifting and shifting of their patient. Clinics can help by identifying massage therapists that handle patients with disabilities and providing this useful information to patient families. While massage may seem like a luxury, in the world of ALS/MND, it is a necessity.

Emergency Room

Respiration issues caused by an infection, pneumonia or excess phlegm can send a patient to the emergency room of the local hospital where a physician or healthcare staff knowledgeable about ALS/MND may or may not be present. Therefore, it's important to prepare a packet of information to provide hospital staff. It should contain complete contact information about the patient's neurologist, clinic coordinator and anyone else who is familiar with his/her care. It should also contain a brief medical history, a list of all prescription drugs and their dosages, any other medications taken regularly, any respiratory assistance used at night or during the day and the names and contact numbers of key family and friends to contact if necessary. It's also a good idea to have written information about ALS/MND available, especially if speech is an issue.

In addition, a complete "informational sheet for hopsital personnel" can be downloaded from the ALS Worldwide website. These guidelines have been prepared by Professor Vincent Meininger, Dr. Pierre-Francois Pradat, Dr. Philippe Corcia and Dr. Gilles Bagou and should be printed and included with all other materials for an emergency room visit.

Home Visits

Home visits by a knowledgeable ALS/MND professional nurse should be included in the care of a patient because the treatment is so complicated. Administering and adjustint the mechanical devices needed to maintain breathing function and eating capability can be challenging for a novice. Communication devices frequently need adjusting. As the disease progresses, travel, even for half an hour, becomes prohibitive which is why patients cancel their clinic appointments or stop making them. Patients participating in clinical trials are often required to come to the clinic more frequently or to provide blood tests, all of which becomes challenging if the trial continues for two or three years. Patient caregivers are most often family members without any prior knowledge of this disease or how to best care for their loved ones. The sense of isolation that accompanies this diesease can become overwhelming. Even if care were available with the kind of expert training needed, most families don't know how to find it or cannot afford to pay for it privately.

For these reasons and more, a monthly home visit from a person trained to care for an ALS/MND patient is important but rarely provided due to lack of funding. Some countries with universal health care provide this service for all homebound patients, regardless of the disease, which includes ALS/MND. In the U.S., ALSA provides home visits to patients on an as needed basis in some states, depending upon the financial capability of a particular chapter. As the concept of home visits becomes more universal and funds are allocated to provide this service, ALS/MND patients and their families will become even greater beneficiaries.

Financial Expenses

In the United States, the cost for an ALS/MND patient is astronomical, running between $150,000 and $200,000 per year. Average families cannot afford this financial burden. Even those considered wealthy are staggered by the ongoing costs of care. Insurance companies do not cover therapeutic and emotional support, nor does Medicare, which leaves the patient and family members overwhelmed. The ALS/MND Clinics suffer a similar fate because hospitals do not provide sufficient funding to care for their patients. The full range of therapists may only be available once or twice a month, which limits scheduling clinic days.

However, in countries where governments provide universal health care, such as the Netherlands and Denmark, complete care is provided, from necessary renovations to create handicapped accessibility in the home, to daily caregivers, therapists and psychological support. Home visits by nurse practitioners is a standard feature so that patients who are homebound continue to receive quality care. Access to wheelchairs, hospital beds and a full range of support devices are readily available so that the patients' needs come first. All of this is funded by the government so the patients' families are not over burdened and can focus on creating the best quality of life for each other.

Could this be duplicated in other countries and the United States? Of course. All it takes is having the right priorities, setitng quality care above cost, the will to fund ALS/MND clinics fully and the desire to cover all costs of care for the patient and family. This is a big goal, but it is a most worthy cause.