Help Needed for Woman Caring for Husband With ALS

To my friend's friend -
Learning that a loved one has a serious medical condition is never easy. For women, who most often end up being a primary caregiver, there are many sudden concerns, responsibilities and burdens. It's a strange time when part of you is somewhat in shock and paralyzed by the news while you also want to do as much as you possibly can to help.

First things first. It's important to have a basic understanding of the disease and disease process. You will find information on ALS ( Amyotrophic Lateral Sclerosis) on this page: https://www.empowher.com/media/reference/amyotrophic-lateral-sclerosis-als

At a later point in time you may want more in-depth information about ALS. The National Institute for Neurological Disorders and Stoke provides helpful data, including information on clinical trials, at http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/amyotrophiclateralsclerosis.htm

Support groups are going to be very helpful for your family. Medical professionals are only going to be able to provide limited time during visits, and you're going to have a lot of questions that other patients and caregivers will be able to answer. I understand you have an appointment with the ALS Association, which is great. For other readers, here's contact information for them.

ALS Association
http://www.alsa.org/

We also have a support group, specific to the Phoenix area, on EmpowHER. You can find it here: https://www.empowher.com/groups/als-support-group-phoenix-az

One of the major concerns that comes up with any serious medical conditions is finances. First, for treatment. The ALS Association can provide some guidance and we can also direct you to resources as well. Costs are highly dependent on whether or not you have insurance, co-pay requirements, deductibles and other factors. This can seem overwhelming but there are resources out there to help you find support to cover the expenses. One example is NeedyMeds, a nonprofit organization that helps needy people with medication expense issues: http://www.needymeds.org/

Due to the nature of ALS you may also be looking at the steps needed to obtain Social Security Disability coverage for your husband. This link has information to help you: http://www.alsa.org/policy/ssa.cfm

I've tried to hit some of the key points for you, but I know that you will have many more questions along the way. We have a wide range of information on our site to help and you're also welcome to directly ask the questions on your mind through the "Ask" feature on the site or to contact me through the private email system.

This is a difficult time for both of you. I'm not going to say that I know how you feel because I don't. I do know that you would likely appreciate knowing you've got an online support system already working on behalf of your family and we will be here for you if needed. We hope to be of comfort to you, and your husband, as you go forward in treating and living with his illness.

Take good care,
Pat