For ALS caregivers
When you're the caregiver of someone with ALS, your daily life can evolve into the constant care of your loved one. You become their strength as you help them with the everyday tasks and functions we often take for granted. While you are critical in their life, it's also important that you take care of yourself.
Caring for a loved one with ALS is often a long-term job, and as the disease progresses, can often consume more and more time and energy. It creates stresses and strains in relationships as roles shift. As a caregiver, it's necessary to take time for yourself to create balance in your life. It's also important to realize that in the later stages of ALS, you will not be able to provide for all of your loved one's needs and be able to ask for assistance from outside healthcare resources.
"Rules of the Road" from the Family Caregiver Alliance
www.caregiver.org
- Take it step by step
- Spend time at the beginning understanding your situation and options, so you don't have to rush into action without a plan.
- A team approach is the key to success (remember, your loved one with ALS is a central part of that team).
- Conditions change along the way and your strategies will need to shift accordingly
- Knowledge and confidence will be gained a little at a time
- You must ask for the support you need.
As you care for your loved one on a day-to-day basis, you'll experience both the joys and the sorrows associated with such responsibility. You'll likely experience a range of emotions, all of which are normal for caregivers. When you have these feelings, reach out to others to help support you on your journey. Friends, family members, and support groups can help you work through your emotions. If necessary, your healthcare provider can also assist you in finding an appropriate counselor to speak to and help you through the caregiving experience.
Important Safety Information
- You should not take RILUTEK if you are allergic to any of its ingredients.
- Your doctor should do blood tests to check your liver function before and during your treatment. Call your doctor if you have a fever, cough, or difficulty in breathing while taking Rilutek.
- RILUTEK may cause you to feel dizzy, light-headed, or sleepy. If you experience any of these, you should NOT drive a vehicle or use machinery.
- If you miss or skip a dose of RILUTEK, do not take any extra tablets to make up for those you missed, but take your prescribed dose at the next regularly scheduled time.
- When taking RILUTEK, avoid drinking excessive amounts of alcohol; alcohol may contribute to compromising liver function and may be associated with an increased risk of liver problems.
- The most common side effects of RILUTEK that occurred during medical studies were weakness, nausea, lung function decrease (not associated with a reduction in vital capacity), headache, nasal symptoms, muscle tightness, abdominal pain, and high blood pressure. If any side effects become troublesome, contact your doctor.
- Be sure to tell your doctor and pharmacist about all other medicines you are taking, including nonprescription products and vitamins. If you have questions, please talk to your doctor.
Please refer to the full prescribing information using the link at the top of the page.
Caregiver Resources
10400 Connecticut Avenue, Suite 500
Kensington, MD 20895-3944
Phone: (800) 896-3650 or 301-942-6430
Fax: 301-942-2302
www.nfcacares.org
4720 Montgomery Lane, 5th Floor
Bethesda, MD 20814
www.caregiving.org
63 West Main Street, Suite H
Freehold, NJ 07728
Phone: (800) 838-0879 or (732) 577-8899
Fax: (732) 577-8644
www.wellspouse.org
800 Eastowne Drive, Suite 105
Chapel Hill, NC 27514
Phone: (919) 490-5577
Fax: (919)490-4905
www.archrespite.org
180 Montgomery Street, Suite 1100
San Francisco, CA 94104
Phone: (415) 434-3388
(800) 445-8106 (in California)
www.caregiver.org
Indication
RILUTEK (riluzole) is indicated for the treatment of patients with amyotrophic lateral
sclerosis (ALS).
RILUTEK extends survival and/or time to invasive breathing assistance.
Important Safety Information
- You should not take RILUTEK if you are allergic to any of its ingredients.
- Your doctor should do blood tests to check your liver function before and during your treatment. Call your doctor if you have a fever, cough, or difficulty in breathing while taking Rilutek.
- RILUTEK may cause you to feel dizzy, light-headed, or sleepy. If you experience any of these, you should NOT drive a vehicle or use machinery.
- If you miss or skip a dose of RILUTEK, do not take any extra tablets to make up for those you missed, but take your prescribed dose at the next regularly scheduled time.
- When taking RILUTEK, avoid drinking excessive amounts of alcohol; alcohol may contribute to compromising liver function and may be associated with an increased risk of liver problems.
- The most common side effects of RILUTEK that occurred during medical studies were weakness, nausea, lung function decrease (not associated with a reduction in vital capacity), headache, nasal symptoms, muscle tightness, abdominal pain, and high blood pressure. If any side effects become troublesome, contact your doctor.
- Be sure to tell your doctor and pharmacist about all other medicines you are taking, including nonprescription products and vitamins. If you have questions, please talk to your doctor.
Please click here for Full Prescribing Information.
The health information contained herein is provided for general educational purposes only.
Your healthcare professional is the single best source of information regarding your health.
Please consult your healthcare professional if you have any questions about your health or treatment.
