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ALS NEWSMAGAZINE NEEDS YOUR HELP

MDA/ALS Newsmagazine needs you, not only to read the magazine but also to help us create our stories. The personal accounts of people with ALS make our articles more truthful and more interesting. If you’d like to be interviewed about one of the following topics, please note the contact information that follows the list.

TOPICS

Have you had experiences with particular technologies, including low-tech technologies, and products you think might be of interest to people with ALS or their caregivers? How has assistive technology improved your life?

Respite Care: We'd like to hear from people who have had good and/or bad experiences using respite facilities

Role Changes: What are some of the ways the roles in a family change when one member develops ALS? For example, a spouse may have become a bread winner, or a child may have become more of a cook, etc.

Living Will Language: What are some of the instructions you've written into your Living Will in order to best guide doctors and loved ones in case of a medical emergency?

Decision to Stop Ventilation: Are you the family member of a loved one who decided not to prolong survival with ventilation? Why did he or she make the decision?

Hospital Stays: Did you have a good hospital stay or a bad one recently? Do you have any tips or advice to offer others with a hospital stay in their futures?

ALS Side Effects: Have you experienced side effects they don’t talk about in the books?

Humor: Have you had a humorous ALS experience you think worth sharing?

Family: Have you talked to your children about your diagnosis? What did you tell them? What were the circumstances of the conversation?

Working Caregivers: Are you a working caregiver or a person with ALS whose caregiver works? How do you handle this arrangement? What kinds of adjustments have you made to accommodate both illness and work? What accommodations have employers made for you? Have you used hours through the Family Medical Leave Act?

Anger and Emotional Abuse: How do you contend with issues of anger? Have you experienced emotional abuse, either as a person with ALS by a caregiver, or as a caregiver by a person with ALS?

Losing Your Voice: What preparations have you made for losing your voice? If you’ve already lost your voice, what tips and advice can you offer to those who haven’t yet?

Tranquilizers and Antidepressants: Have you been prescribed tranquilizers or antidepressants? Have you found them helpful or not?

Emergency Backup: Have you experienced any problems with the loss of electrical power? What preparations have you made for backup? Do you have special tips or advice to offer?

Please send an e-mail to publications@mdausa.org and mention the ALS Newsmagazine, along with with your name, age, phone number, e-mail address and a short explanation. We will keep this information confidential and will get in touch with you about an interview.

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http://www.mda.org/