Electromyogram EMG. During an EMG, your doctor inserts a needle electrode through your skin into various muscles. The test evaluates the electrical activity of your muscles when they contract and when they're at rest. Abnormalities in muscles seen in an electromyogram can help doctors diagnose ALS, or determine if you have a different muscle or nerve condition that may be causing your symptoms.
It can also help guide your exercise therapy. Treatments can't reverse the damage of amyotrophic lateral sclerosis, but they can slow the progression of symptoms, prevent complications and make you more comfortable and independent. You may need an integrated team of doctors trained in many areas and other health care professionals to provide your care.
This may prolong your survival and improve your quality of life. Your team will help you select the right treatments for you. You always have the right to choose or refuse any of the treatments suggested.
But all this help is a two-way street, so I promise to:
Edaravone Radicava — The FDA approved edaravone in based on six-month clinical trial that showed it reduced the decline in daily functioning associated with ALS. The drug is given via intravenous infusion typically days in a row, once a month , and side effects may include bruising, gait disturbance, hives, swelling and shortness of breath. Edaravone contains sodium bisulfite, which may cause serious allergic reactions in people with sulfite sensitivity. Breathing care.
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You'll eventually have more difficulty breathing as your muscles become weaker. Doctors may test your breathing regularly and provide you with devices to assist your breathing at night. You may choose mechanical ventilation to help you breathe. Doctors insert a tube in a surgically created hole at the front of your neck leading to your windpipe tracheostomy , and the tube is connected to a respirator.
Physical therapy. A physical therapist can address pain, walking, mobility, bracing and equipment needs that help you stay independent. Practicing low-impact exercises may help maintain your cardiovascular fitness, muscle strength and range of motion for as long as possible. A physical therapist can also help you adjust to a brace, walker or wheelchair and may suggest devices such as ramps that make it easier for you to get around. Regular exercise can also help improve your sense of well-being.
Appropriate stretching can help prevent pain and help your muscles function at their best. Occupational therapy. An occupational therapist can help you find ways to remain independent despite hand and arm weakness. Adaptive equipment can help you perform daily activities such as dressing, grooming, eating and bathing.
An occupational therapist can also help you modify your home to allow accessibility if you have trouble walking safely. Occupational therapists also have a good understanding of how assistive technology and computers can be used, even if your hands are weak. Speech therapy. A speech therapist can teach you adaptive techniques to make your speech more clearly understood. Speech therapists can also help you explore other methods of communication, such as an alphabet board or simple pen and paper.
Ask your therapist about the possibility of borrowing or renting devices such as tablet computers with text-to-speech applications or computer-based equipment with synthesized speech that may help you communicate. Whether you are eligible for a clinical study depends on many factors related to your ALS and also whether there are ongoing studies enrolling patients. While many of these studies are promising, they are still only studies, and it isn't yet clear if these treatments will help people with ALS.
Talk to your doctor about what might be available for you. Explore Mayo Clinic studies testing new treatments, interventions and tests as a means to prevent, detect, treat or manage this disease. Make decisions now about your future medical care.
ALS Saved My Life | Jenni Berebitsky's Journey
Planning for the future allows you to be in control of decisions about your life and your care. With the help of your doctor, hospice nurse or social worker, you can decide whether you want certain life-extending procedures. You can also decide where you want to spend your final days. You may consider hospice care options.
Planning for the future can help you and your loved ones put to rest some common anxieties. You might first consult your family doctor about signs and symptoms of ALS. Your family doctor will talk to you about your symptoms and do an initial physical examination. Then your doctor will probably refer you to a doctor trained in nervous system conditions neurologist for further evaluation.
You may need many tests to diagnose your condition, and this process can be stressful and frustrating. I was no longer really a wife. I was no longer really a mother. I just had this other identity where I was taking care of someone who was getting worse and worse every day. My blood pressure went up.
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I lost quite a bit of weight in the beginning. And my boys, who were now working at least as hard as I was physically, had back problems and muscle aches. I still do, although maybe a little less frequently. I would be trying to walk somewhere, and I couldn't lift my legs. I would be trying to climb a flight of stairs, and I'd have to reach down with my hands and lift one leg after the other to go up a flight of stairs.
I couldn't run in my dreams. And I would wake up from these dreams because somewhere in the last minutes of the dream I would think, "but we can't both have ALS. This is what he's going through. I had a lot of things I had to pack. They all had to be put in boxes or suitcases, and I had to get this all done so that I could catch some kind of transportation, a train or a plane or something, and I could never get it done on time.
No matter how hard I cleaned or how fast I tried to control it, the mess just spread and spread and got bigger and bigger. So inevitably I missed whatever form of transportation it was. Finally I took some antidepressants, which made a big difference to me because they allowed me to sort out my concerns and prioritize what was important and what wasn't important.
He said, first of all, you're going to find out who your real friends are. People that you think you could count on are going to disappear, and other people are going to come from nowhere and help you out with this. And then he said, lots and lots of people are going to be taking care of your husband but nobody is going to be taking care of you.
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So you're going to have to find out a way to take care of yourself. So it was something I could fit in.
And it did help. I hated every modification that we had to make. I hated having ramps for wheelchairs. I hated having handicapped lifts in bathrooms. I hated having equipment all over the house. I hated that the kitchen became a pharmacy because I began to feel I was losing the only haven I had, which was my house.
But now, I don't know what it would be like to have a house that was not a hospital. One of our rooms is a hospital room now with a hospital bed. There are ramps all over the house. There is equipment everywhere. We're used to it now. The difficulty is there's no privacy. I don't have anywhere to go in my house now to be just sort of a normal person. I can't come downstairs in a slip to get a glass of orange juice or any of those things that people normally do in their own houses because I'm never alone in my house. In fact, there can be ten or twelve people in and out of the house in a week, bringing in supplies and doing various things that need to be done.
So it's made me retreat to a certain extent into my bedroom as a sanctuary. And I'd like to see that insurance providers would come to recognize the burdens that they impose on caregivers, not just for people with ALS but for people with Alzheimer's, for people with cerebral palsy, for people with all the other diseases for which hour care is essential to the well-being of the patient.
I'd like them to realize what kind of burdens their policies place on caregivers and on the patient, and I'd like to see them address how they can become more humane and more caring. Find local assistance in your area. Contact us. Interested in clinical trials? Search our database.