PEOPLE WITH ALS

Naturally, anyone who receives an ALS diagnosis will have innumerable questions about the disease, the prognosis and the available treatments. One of our primary goals is to help provide the answers.

 

For starters, if you’ve been diagnosed, it’s important to learn about your insurance coverage, healthcare facilities and how to obtain support for yourself and your family. This website provides information on Certified ALS Centers and ALS Specialty Clinics in Wisconsin as well as a link to The ALS Association National website for ALS Centers/Clinics throughout the United States. This website also lists ALS Support Groups which are available throughout Wisconsin to provide much needed support for ALS patients and their families.

 

You may want to contact your medical insurance provider and request that you be assigned a case manager to be your primary point of contact.

 

If you served in the military, contact the Department of Veteran Affairs at 800.827.1000 about eligibility for health, vocational rehabilitation and disability programs and services.

 

If you haven’t already done so, we strongly encourage you to register with The ALS Association Wisconsin Chapter in order to have access to all the resources and services provided by the Chapter. Click here to register online. Specific questions may also be answered by connecting with a member of our Care Services Staff by phone at 414.763.2220 or email robin@alsawi.org

WE ARE HERE TO HELP

Receiving a diagnosis of ALS is challenging and overwhelming. There is so much to know, and a great deal to consider. There are so many questions and many times it is hard to know where to start or even what to ask. No two people with ALS are exactly alike or will have the same experiences but there is a vast pool of knowledge from others with ALS, their family, friends, caregivers and other health care providers. The ALS Association Wisconsin Chapter is a combination of all of these individuals with one main goal:  to assist and support you in your journey with ALS. 

 

This website is one resource with a great deal of helpful information, however it doesn’t take the place of connecting with others. If you, a family member or a friend, have been diagnosed with ALS, we encourage you to register with the Chapter to be able to benefit from the Wisconsin Chapter’s programs and services and to join the Wisconsin Chapter family.

 

The other links on this page will take you directly to our ALS Association National Office website where you will find much helpful information. If you have any questions or would like more information, the Chapter Care Services Team is here to help. We are here for you and we are in this fight together. 

TIPS FOR THE NEWLY DIAGNOSED ALS PATIENT
by Will Hubben

Will Hubben was diagnosed with Lou Gehrig’s disease in July 1998 and died in May 2004. In November 2000, Will created The ALS Research Digest, an electronic newsletter designed to provide information about the disease to the ALS community. Shortly before he passed away, Will shared a number of personal coping devices that helped him immeasurably, including some advice that he wished he had followed sooner rather than later.

 

1. Be compassionate to yourself. If you are like me, your first reaction to being told you may have ALS is shock and fear. We all go through wild emotional swings when we hear such dreadful news. Allow yourself to go through denial, grief, anger, and whatever else you feel without criticizing yourself for it. It’s natural and necessary for you to experience powerful emotions. Many feelings will arise again and again as ALS progresses. This will pass, and being gentle with yourself is a big help.

 

2. Reach out to family and friends. Many people may want to help and not know how. Talking openly to a family member or friend about your situation will help both of you cope. Ask for assistance with preparing meals, running errands, doing household chores, or ask to be taken to the movies. Building a support network will help you and your primary caregiver. Also, this allows family and friends to get involved.

 

3. Learn about ALS. Knowledge is power. ALS tends to make people feel powerless. Learning all you can about the disease, about supplements and drugs that might slow progression, and about current research, can help empower you. Sharing what you learn will help raise awareness about ALS and the need for more research money.

 

4. Do everything you can for your health. Improve your diet, quit smoking, take up yoga and/or meditation, practice positive visualization, get plenty of sleep, and work with your doctor to develop your own regimen of helpful vitamins. Every little effort will help you, both physically and mentally.

 

5. Take charge of your treatment. Pick your health care providers carefully. Remember, they work for you. Talk to your primary care provider and your neurologist about any vitamins and supplements you may want to take. Ask lots of questions. If they don’t patiently and respectfully answer (or research) all of your questions, fire them and find someone else. Don’t be passive about your treatment options. You are always in charge.

 

6. Develop a relationship with a major ALS center. Centers and clinics associated with The ALS Association have a lot of experience with ALS. They take a multidisciplinary approach with ALS patients and can be helpful at every stage of the disease. The ALS clinical team is there every step of the way to provide expert medical care to people living with ALS. A list of ALS centers and clinics affiliated with The ALS Association can be found at  http://www.alsa.org/community/centers.cfm.

 

7. Do things you have always wanted to do. Take that trip to Europe, spend more time with your family, go skydiving, write a book, or raft the Grand Canyon. Whatever it is, go ahead and do it. In a few months, you may no longer be able to do these activities.

 

8. Find ways to help others. One of the best ways you can help yourself is to help other people with ALS. Consider raising money for research, joining advocacy efforts, volunteering for clinical trials, attending support groups, and reaching out to others who need emotional support. Giving to others enriches your life as well as theirs.

 

9. Practice hopeful, positive thinking. Maintaining a positive attitude in the midst of trying circumstances takes practice, but it’s worth it. Not only is your moment-to-moment experience improved, but experts agree that a positive attitude can improve your body’s resistance to disease. Remaining hopeful helps me to enjoy my life, in each moment. In addition, a lot of promising research is being conducted in many different areas of investigation. Remember, a breakthrough could happen at any time.

 

10. Stay ahead of the curve. Get a wheelchair when walking difficulties begin, even though you can still walk. Get a feeding tube before you lose weight. Begin using augmentative communication aids before you need them. Get respiratory support by using a BiPAP at night as soon as possible. By taking these and other steps early, you remain in control. No one with this disease regrets doing these things early; many regret waiting too long.

 

The ALS Association thanks Will Hubben for his contribution to this FYI.

Created May 2004. © 2004 by The ALS Association

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