10 Tips for Patients Recently Diagnosed With ALS

Being diagnosed with amyotrophic lateral sclerosis (ALS) is a difficult and stressful time. You’ll probably feel incredibly overwhelmed in the first few days and weeks, and struggle to understand the ramifications involved. To help with the process, we’ve compiled a list of tips for patients who have recently been diagnosed with ALS based on information from the ALS Association.

 

Show yourself  some compassion
You will go through a whole host of different emotions in the first few weeks, from fear to anger, denial to grief. This is completely understandable and you need to give yourself time and space to do this. Be kind to yourself, tell yourself that this is a normal response and that the darkness you’re feeling will pass and you will start to feel more positive.

MORE: Discover seven facts about ALS you might find interesting

Get support
You are going to need your friends and family around you — not only to offer physical help but also to offer emotional support. Building a good support team is essential to carry on, to offer you choices but also to give your primary caregiver a break when necessary. Don’t be afraid to ask for help when you need it, people will be happy to help make life easier for you.

MORE: A prison chaplain shares his ALS story

 

Educate yourself
Find out as much about ALS as you can. Read online medical journals, websites, information about medication, treatments, alternative therapies, clinical trials, etc. The more you know, the more prepared you can be.

MORE: Learn more about the role motor neurons play in ALS

 

Look after yourself
It’s more important than ever to start adopting healthy lifestyle changes: quit smoking; eat a healthy balanced diet; take up activities that will help to relieve stress such as yoga or meditation; make sure you get plenty of rest. Ask your doctor about supplements you can take.

MORE: Study validates the use of social cognitive measure in ALS patients

 

Be proactive in your treatment 
Make sure you find the best doctors available who can treat your condition; find out about clinical trials and new treatments; ask lots of questions and get the answers. Research thoroughly and ensure you have the best team around you who are completely up to date about ALS.

MORE: Discover six ALS therapies that can improve quality of life

 

Look for a local ALS clinic
The ALS Association is affiliated with many of the country’s ALS clinics. These clinics will have the experience needed to treat your ALS and will offer a multidisciplinary approach to look after every aspect of your health.

MORE: Did you know that technology can improve communication between ALS patients?

 

Write a bucket list
Include all the activities you want to do and places you want to see and try to do as many of them as you can.

 

Become an advocate
You may not want to do this straight away, but as you come to terms with your condition you might want to reach out and support others who have been newly diagnosed or simply raise awareness and money for ALS.

MORE: This pastor hasn’t let his ALS diagnosis get in the way of inspiring others

 

Keep a positive attitude
We know this is easier said than done, but allowing yourself to think negatively will only make the time you have miserable. Try to live each day as best you can and enjoy each moment and remember, scientists and researchers are constantly working to find better treatments and ultimately a cure for ALS.

MORE: Did you know that there’s a robotic glove that improves mobility for ALS patients?

 

Stay one step ahead
Anticipating what you’ll need for the next step of your disease will help you maintain control. Get equipment (such as feeding tubes, communication devices, respiratory support, etc.) before you actually need them, rather than waiting until you do. This will help you get used to the equipment and be able to better utilize it.

MORE: Read more about respiratory options and decisions for ALS patients

ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

One comment

  1. HG says:

    It would be helpful to create a “voice bank” so that if you lose your ability to speak, automated text to speech software can use speech that is close to what you used to have.

    Maybe a little silly, “Keep doing what you were doing for as long as you can (even if its not the same quality of performance).

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