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Which advice would you give to someone who has just been diagnosed with Multiple Systems Atrophy?
Advice for the newly diagnosed with Multiple Systems Atrophy, written by people who have lived it. What they wish they had known on day one.
Be helpful to your caregiver; let them help you however they want to or can. Be cheerful and laugh; it makes their day.
Posted Jul 9, 2017 by Mary 1000
The best advice is to reach out for support and information. Don't feel that you are completely alone, there are resources available and people who understand. Connecting with other families who are dealing with the disease will be your best source for support. Connections can be made through this disease map and also through the various Multiple System Atrophy advocacy organizations around the world. Here is one MSA discussion group open to anyone around the world: groups.yahoo.com/group/shydrager
Posted Jul 11, 2017 by Pam Bower 2952
Try to do the thing you always dreamed of now.
Posted Jan 4, 2018 by Jan 1500
It is just a word to describe what the doctor thinks is happening to you. Do not be afraid.
At the same time, this is a disease that can move rapidly. A lift chair and full electric bed can help you stand. Walkers and wheelchairs can help keep you safe and conserve your energy. Get familiar with what your insurance will cover. I found many helpful items on Amazon simply by looking at the items other people bought.
We used grab poles, a scooter, an electric wheelchair, a manual transfer device, and today a hoyer lift. All did the same thing, made the impossible possible.
Our neurologist gave us some wonderful advice. He said to decide then how we defined quality of life. For us, this meant no feeding tube, no pacemaker, no tracheotomy and no ventilator. We may change our minds, but that is because we do not believe anything is written in stone.
At the same time, this is a disease that can move rapidly. A lift chair and full electric bed can help you stand. Walkers and wheelchairs can help keep you safe and conserve your energy. Get familiar with what your insurance will cover. I found many helpful items on Amazon simply by looking at the items other people bought.
We used grab poles, a scooter, an electric wheelchair, a manual transfer device, and today a hoyer lift. All did the same thing, made the impossible possible.
Our neurologist gave us some wonderful advice. He said to decide then how we defined quality of life. For us, this meant no feeding tube, no pacemaker, no tracheotomy and no ventilator. We may change our minds, but that is because we do not believe anything is written in stone.
Posted Mar 23, 2018 by [email protected] 3020
Translated from spanish
Improve translation
That should keep The inner Peace, because the road is not simple
Posted May 10, 2017 by Lorena 1000
