A guide for people with ALS
Having ALS diagnosed: What now?
Many people who have a serious illness are torn between having a positive attitude to keep the illness away and the knowledge that they have to accept at some point they have a serious illness. Other people approach it by “fighting against it”, even others take things as they come, day by day. To help you cope with the disease and to build hope, the ALS Liga wants to be there for you and your family. This part is meant to give you personal suggestions, and to give tips to you and the people around you who together are faced with changes.
Normal reactions to the news you , yourself or someone else close to you has a serious illness, are:
- anxiety about the future
- disbelief concerning the diagnosis
- concern for loved ones and friends
- sadness of the loss of your expected future
- anger towards the medical sector or friends and family
- isolation because suddenly you feel different than people surrounding you
- intense sadness
- relief because you finally know what was wrong with you
Some people want to fully face to reality of the situation for themselves first before they go to others for help, others find it easier to immediately involve family and friends. Gradually, people start to “rethink” their lives and plans. One of the hardest things is finding a balance between keeping a positive attitude and the acceptance of having a serious illness.
Talking about and recognizing feelings within the family circle is of vital importance. The illness not only touches the person that’s ill but also the people close to him. Sharing of highs and lows with family and good friends, means you can help each other.
Sharing the diagnosis with others
Before having being diagnosed you have probably been submitted to a whole array of tests. People close to you have been concerned and it’s important that at some point they know what’s the matter with you.
Open and honest communication is very important to avoid friction and misunderstandings. Don’t make assumptions about the feelings of others. How much you share with others, is very personal. People don’t automatically have the right to know everything about your personal life and it’s possible you don’t feel like talking about your situation over and over again. On the other hand, when the illness progresses, you might want people to understand that your body weakens but your brain and your mind doesn’t.
The more people know how you feel, the easier it is for them to offer help and support. Don’t be afraid to ask for help, people sometimes feel uncomfortable and think it’s better to wait until they’re being asked.
On the other hand there are other people find it hard to accept the disease or being confronted by it and they’re afraid or nervous to engage themselves and behave distantly.
Telling the children
How and what you tell your children is very dependent of their age. In any case does the ALS diagnosis have an influence on every family member and feeling excluded is often worse than understanding the whole picture.
Talking and listening
One of the most important things is to talk and listen
- with people who are qualified in giving you more information and professional support;
- with family and friends because they have to know how you feel, so they can be supportive. You have to know how they react;
- with the ALS Liga.
It’s important to remember that your feelings and those of the people around you will change, because there will be highs and lows.
You may have the feeling that you’re crying or laughing uncontrollably on what seems is the wrong time. This could be because that’s how you feel but usually it’s the result of the fact that the disease has an influence on your brain.
This can be painful for you and disturbing for the people around you but this is entirely normal. Sometimes medication helps.
Strategies to cope with ALS
Social workers, psychologists, advisors and support groups can be very useful. You can learn from people who are familiar with the problems you’re confronted with, share understanding with others who are faced with the same challenges and learn from people who are in a further stage of ALS to learn how to cope with the problems you will face.
The ALS Liga, nursing homes and other organizations provide in these services to offer social and emotional support through the progression of the disease.
A life with ALS can be looked upon as a succession of progressive functional loss but is also a unique strategy for enrichment. The choice is yours. If you choose for enrichment, this can take many forms. The choice is very personal.
You can choose for closer relationships with family and friends, to make new friends who have the same experiences and a lot of other people who are involved with ALS.
You can learn about computers and how to communicate with others through the internet and other similar services.
You can learn to appreciate other things in the world surrounding you, things you used to feel as being self evident; you can make time to read and to listen to music and to learn more about spiritual consciousness.
The list can become longer and longer and will surely not contain everything you always wanted to do but can certainly hold enough for a full and satisfying life. It all depends on your attitude and imagination. Hope, faith, love and a strong will to live don’t offer a guarantee on immortality, only a proof of the uniqueness of human beings and the chance to grow, even in the most grim of circumstances.
Accepting the challenge
Accepting ALS doesn’t mean “to give up”. It’s the First step to make the best of your life with ALS. A lot can be done to help you lead a productive and pleasant life. Be positive but don’t minimalize the situation, ALS remains to be a very serious condition. On the other hand it’s unnecessary to keep pondering the negative aspects of the illness.
You could be one of the people who live longer than 5 or 10 years with the illness. In neurological research no one knows when there’ll be a breakthrough, maybe sooner than expected. These facts give hope.
When you’re a person who decides to take on his condition first hand, the following is a number of practical things you should do without delay.
1. Contact the family doctor
Your doctor may refer you to the closest ALS hospital. He/she can also help to apply for an illness benefit or approve an appliance for help at home. Encourage your doctor to rely on specialists and therapists for advice. Talk about the availability of your doctor for house calls when the illness advances.
2. Apply to the ALS Liga
The league provides different services to assist people with ALS. Let the union know that you’re a person with ALS, that you’d like to register yourself with them and that you want to receive all possible useful information.
3. Apply for a parking card for handicapped people at FOD (federal government)
People with ALS have a right to get a parking card for handicapped people. Report this application to the ALS Liga and ask for support.
4. Apply for a Medical Alarm
This can be useful to announce your condition to others, in case you can’t talk.
5. Contact your car Insurance company
When you don’t declare your handicap, your policy might be void.
Change in life roles
Everything becomes different with ALS. Remember however that living with change is part of a normal life and that we’re good in adapting ourselves to those changes.
How you feel
No doubt family and friends will struggle to support you through the emotional rollercoaster life with ALS is. The many life adaptations that are necessary lead to sadness and loss, guilt and frustration and even fear and resentment. All of this can be mixed with feelings of hope and optimism and an outspoken fighting spirit.
To keep these feelings to yourself, can lead to misunderstandings and isolation of people around you. Try to share these feelings with someone, this will help to order your thoughts and to ban the chaos.
A lot of the professionals who help you, have an education in emotional or psychological care giving. You can ask them when you can find a listening ear to help you structure your thoughts. Research tells us that the best you can get out of a life with ALS is when you can be open about your feelings and don’t give guilt and resentment a chance.
How others feel
We know ALS influences the whole family, because normal routines and lifestyles are being turned upside down and lead to significant emotional changes for everybody. Others take over tasks that were originally yours. Careers can become frozen, which can create financial problems. A lot of people will try to hide their feelings of loss and helplessness to protect you.
When ALS advances, the character of your relationships may change which in most cases brings you closer to eachother. Whether you live in a family, as a couple or in a network of friends, keep what was unique in these relationships before you got ALS. Prevent everyone becoming your “care giver” by accepting help for your physical limitations from the outside. Above all, try to recognize when your loved ones want to share their feelings and try to encourage this.
Intimacy and sexuality
Physical intimacy is the core of any loving relationship. We need to feel close and be to others. Although ALS doesn’t affect sexual capacities, sexual expression can become harder when other movements become hampered. Then it’s time to openly talk about these changes and alternatives.
When you’re a man and you find movement difficult, try having sex with your partner on top and vice versa when you’re a woman. When sex becomes impossible in every position, there are other ways to show affection and to enjoy sexual intimacy like masturbation and oral sex.
Consider, if necessary, to talk with a professional like a sex therapist. It’s all about experiencing life the fullest with ALS. Sex can be less of a problem for some couples but show your love in other ways like hugging and kissing.
Some family members don’t know how they can show love. If normally they’d give you a kiss or a hug, encourage them to continue doing so.
Tools to stay on rails
An ALS diagnosis can interrupt the best of plans but that doesn’t mean you have to sto making new ones. Rather you have to learn about your disease and learn how to cope as well as possible.
You can help yourself to sustain by keep being organized and to keep track of your changed needs, the people you contacted and what for, planned meetings, medication you have to take, etc.
Retains these forms at home in a map that’s easily accessible to you and your care givers. These next things are important:
1. Personal details
This holds your contact data, your day of birth, your living agreements, information about your care givers and the type of ALS.
2. “About me”
On this page you can describe how ALS influences you and your current individual needs. This could be useful in case of hospitalization and for people who come give care to you at home.
3. Communication registry
This is a convenient tool to register what’s being said if you had contact with professional people from health care. This way these people can also see which visits you’ve had.
4. Paper with professional contacts
This is where you keep name and contacting information about all professionals you see at home, in the hospital, …
5. Equipment registry
After a while you’ll probably different kind of equipment coming from various source. With this form you can register every item that you have received by date, and who you should contact about this equipment.
6. List of medication
Here you can register the medication you take, how to take these and possible side effects and alternatives.
7. Appointment log
Here you log every appointment that has a connection to your treatment as an ALS patient.