Getting diagnosed with ALS means a big challenge for you and your loved ones. A lot of questions are likely to arise.
What happens next? What do I have to think about?
How can I handle all the changes? Where can I get help?
On this page you can find practical information mainly aimed at patients and their next of kin. This information has helped other patients find a way to live with the consequences of the disease. Everyone makes their own path. Some things might help you. You decide according to your own needs.
ALS is a disease with many faces. Not all who are diagnosed experience the same symptoms, nor does the disease always follow the same course. For some, the disease starts with weak legs or tripping, for others, its starts with weak hands, slurring of speech, or breathing problems.
Depending on symptoms, patients are diagnosed with different subtypes of motor neuron disease – ALS, primary lateral sclerosis, progressive bulbar paresis, Vulpian Bernhardt. What all these have in common is that the body no longer behaves the way one wants it to.
Dispite extensive international research on causes and possible treatments, there is at present no cure for ALS. What there is, is a drug that can slow disease progress, aids to alleviate symptoms, and physical and occupational therapy that can help you cope at work or in everyday life.
A speech therapist can help if you have trouble speaking. To increase your well-being, other types of support is available (e.g., psychotherapy or emotional support or financial advice). Ask your ALS-team plan for the types of aid you think might help you.
One question many are keen to have answered is: How long ...? Unfortunately, there is no answer for that. Noone can predict how the symptoms with progress for an individual patient. Most ALS patients will live approximately 3 to 5 years after the first symptoms appear. About 10 percent will live for more than ten years. Sadly, there are those who will live shorter.
This diagnosis is likely the biggest crisis of your life. Maybe it helps to know that there is a professional team there for YOU. Talk to your physician about alternatives, e.g., information about treatments, drugs, and medical equipment etc.
Talk to your ALS team if you feel uncertain. Make sure you understand the information given. If you do not understand, ask again or ask someone to accompany you to your appointment. It might be a good idea to have relatives or family members come along since the disease often will impact those who are closest to you.
You do not have to worry about slight impairments increasing during the course of the disease. People with ALS rarely develop dementia.
However, in a small group, 5 to 10 percent of all ALS patients, the disease does affect thougth ability and behavior. Some patients may develop behavioral changes that have a negative impact. These often start with aggressive behavior, the ignoring of social conventions, loss of empathy and the development of apathy.
Problems often arise in the interaction with others (e.g., family members, collegues etc). If the behavioral changes are pronounced, they are considered signs of frontotemporal dementia (FTD). If you should experience severe issues that are burdening you in your everyday life, talk to your physician about it.
If it gets truly hard for you to interact with other people, do not be afraid to talk to your physician about it, or ask someone to do it for you. Sometimes it can be hard for patients to notice behavioral changes themselves, these kinds of changes can be easier for family members, friends, or collegues to pick up on. Frontotemporal dementia may be unusal, but if you are affected, you will need help from your physician.
Some patients have a hereditary form of the disease, but for most patients it is a random occurance to get sick. Maybe you will experience some weird behaviors or reactions from your social surroundings, but it is not your fault. You have no reason to blame yourself, as far as we know today, there is no specific life event or behaviors that triggers ALS. Nor is ALS contagious! You will not contract ALS from close or intimate contact with someone who has ALS. It is thus not your fault that you are sick – and you are not contagious! Your family will not necessarily get the disease. If you feel unsure, and if there have been family members with similar symptoms, talk to your physician!
Try to rely only on information given from specialists, and do not let yourself be fooled by people claiming to be able to cure ALS through creams, pills, or miracle cures. To many strenuous movements, or enhanced weight training, will not cure ALS either – rather it may have a negative impact on the course of the disease.
Do not trust everything you find on the internet, not all that is written is necessarily true. Ask for scientific evidence. Unfortunately, from time to time, imposters will demand large amounts of money for treatments that they offer, without any evidence that it works. Ask your physician about your treatment options, or ongoing clinical trials and possibilities to be included.
There are different options to improve your well-being. Scientists and clinics have talked to thousands of patients in recent years, and collected information on what has been helpful to them. This knowledge might also be helpful to you.
Are you feeling completely disheartened? Are you worried? Are all your thoughts weighed down by feelings of hopelessness?
Many patients struggle with severe emotional issues after diagnosis. Many develop depression or severe anxiety. If that is the case for you, talk to your physician about it. Pharmaceutical treatment may be an alternative solution to alleviate an anxiety state or a depression.
In addition, try to get professional help in the form of psychological support. There are physicians, phychotherapists, physiotherapists, patient organizations, religious communities, etc, that can help you deal with the situation and the emotional crisis in a better way. They can help you find balance.
Some people feel ashamed of their physical limitations. Patients suddenly will not leave their homes because neighbors look at them in a strange way when they walk or talk. They no longer attend social events because they are afraid of being stared at. They no longer answer the phone because of slurring and are afraid the person on the other end will get the wrong idea. Enlighten people on what ALS means! Do not be embarressed that you have it and do not isolate yourself!
Your body is affected, but the disease does not affect your thoughts, how you feel about your family, your friends, or the world around you. A lot will change when getting diagnosed, but people are still interested in your thoughts and opinions – as much or as little as they were before the disease. You are a human being and a part of life!
Social support from family and friends is the most crucial factor to maintain quality of life after getting sick. Basically, all patients can attest to that, whether the disease is ALS or something else. Do not isolate yourself. If you do not have family or friends around, seek professional help. Maybe some in the family are negative or have a reluctance to face facts but be patient – your family members also need time to process and accept the situation. Next of kin also need support since they are also affected by the situation to a great extent. Interestingly enough, next of kin state that there are also positive aspects of the new situation, despite the difficult conditions.
It is often more difficult for children to deal with the situation. To see dad or mom, someone who in the eyes of the child has always been strong and competent, lose their strength and their abilities is not easy. Talk calmly to your children about the disease and what will happen. Many patients are surprised to discover how strong even children can be in this situation.
If the situation is to much of a strain on the children – seek outside help (maybe a specialised phychotherapist or your treating doctor can sit in at a difficult conversation). In the end, it is an individual path, and every family member may react differently.
Put words to your thoughts, talk to others about your worry and your unforfilled hopes. Talk about difficult things, that maybe others at first might not want to hear but talk about hard stuff anyway! Maybe you will need outside help to figure things out? Ask for help!
Talk to your family (even if you lost contact years ago). Talk to friends and neighbors. In addition, there are patient organizations with contact persons and trained personel, and that offer support from people with personal experience as a patient or next of kin.
Maybe it can be of help to you to exchange thoughts with others living with the same disease? Exchange personal insights, perspectives, and experiences. Deside for yourself if, and when, you need to talk to someone. But make sure to talk!
Even if it seems impossible right now, try to be present in the moment and find joy in the little things in everyday life. Many patients find a way to live with the disease when they have had enough time to adjust. With enough support and knowledge of what has helped others, you can also find a way.
Consider practical aspects of everyday life. Will you have to renovate the house to adjust your living space? When will it be time to tell your boss or your collegues? Maintain your ways of communication for as long as possible since communication makes it possible to participate in life.
There are technincal aids (e.g., eye-controlled communication aids) that can help you communicate after your speech has been affected. You can also have your voice recorded, so it can be digitized and used later with speech synthesis software.
Find out early on what possibilities technical aids might offer, so that you can apply, and try them out, before they are needed. General information on what equipment and software is available can be accessed through patient organizations, speech therapists, occupational thearapists, or directly from suppliers of such devices.
A sense of control and knowledge of available options is very important. Reflect on how you would like to spend your remaining time. Is the use of treatments like a ventilator an option for you? Talk to your physician, your next of kin, and your friends about your wishes, so that they know what to decide on your behalf if there is an emergency.
Consider writing an advance healthcare directive/living will. Try to be clear about it if you decline life-prolonging measures. Be aware that your views and wishes may change over time, so discuss with others over and over again. If you do not wish life-prolonging measures to be taken, it needs to be prevented.
Your family members could have the wrong idea when it comes to what you actually want and how you are actually doing. Medical decisions are highly individual and are not only influenced by your current needs, but also by personal preferences, cultural values, or religious beliefs.
Finally, you are not the only one who needs to rewrite your future life, your family will also need to find a new concept for their future life. That is one of the hardest things. Finding a solution is hard, but possible. Some find that it helps to think about what will no longer be possible in the future. Accept the grief over that but live in the present moment.
There are many practical options that can be useful when it comes to planning for the future, like time capsules, diaries, and messages for future events.
Try to find your individual solution that works for you and the people close to you. There is not just one solution, everyone is unique and has different ideas. The members of your ALS healthcare team are here for you. You will, on your own or with the help of others, find your path.