Advice and Tips from the Multiple System Atrophy Community

Advice and Tips from the Multiple System Atrophy Community

One of the great things about social media is that it connects people with similar rare diseases forming virtual communities. These groups can provide real comfort, education and advice from others going through the same experience. This shared advice and tips are shared at the multiple system atrophy patient and family conferenceexperience is valuable in so many ways, including:

  • Avoiding the feeling of being alone with a disorder nobody has heard about
  • Forming real and lasting bonds with others affected by MSA
  • Being able to ask questions or seek advice about any aspect of daily life with MSA
  • Sharing your experience, concerns, daily wins and losses, laughter, tears

As an example of sharing on social media and to generate actual tips and advice for this blog post we posted the question on The MSA Coalition Facebook page:

What is your one best tip or piece of advice for other MSA patients and/or caregivers?

Here are the first few responses we have received:

  • Remember it is the MSA taking over as your loved one acts very different than normally. Keep the good memories close!
  • Keeping a sense of humor to balance out the deep sadness that comes with having this disease or a loved one having this disease. One of my mom’s favorite things that I do is rub her feet and lower legs with almond oil and lavender oil.
  • Keep up with physical therapy for as long as you can do it (or afford it), and (here’s the tough one) try to stay positive.
  • Please keep a notebook of doctors’ visits, therapy, medication
  • Go slow, don’t take mobility risks, enjoy life while you can, always try to remember the good stuff, and not the bad, breathe!🙂 Sorry, more than one tip!
  • Exercise, physical therapy, & voice therapy as it helps with keeping swallowing muscles stronger long
  • Ask for help. I didn’t have family I could rely on so I found a couple of co-workers that I asked to help support me, they are now more than co-workers
  • Live life to the fullest. Do not let the disease define you.
  • Come together as a family unit. No one person can make it through alone. Also laugh when you can enjoy the time you have with them. Under the physical symptoms is still the person who was there before they got sick.
  • Just laugh and keep going until you can’t go anymore
  • Always remember the person you’re looking after, inside, is still the same funny wonderful person they were before, and and treat them with dignity.
  • Some advice for caregivers like myself, DO NOT BE AFRAID TO ASK FOR HELP! And, you have to take care of you in the process or you will literally be worn down to nothing
  • Patience and love. You are not alone
    My husband passed away from this terrible disease in 2009. He was a sick for 5 years.so I do know how difficult it is.
  • Don’t hold back any information from your kids. They must know what you as the patient or caregiver is going through or have to do. You cannot protect them from this. If you do you may find yourself in the wrong on their eyes. Be strong and out spoken and reach out when you need help.
  • Find support to help you as the caretaker! It takes a tribe! Cherish every minute, have no regrets!
  • Talk about the end early on. Have a plan before it’s too late for the person with MSA to make the decisions. Once that’s out of the way live life to its fullest!

We encourage you to join one or more MSA Facebook support groups that are linked to The MSA Coalition page to connect with others and share ideas for coping. Look for the group tab and you’ll see public and private groups, regional groups and special interest groups. A good group to start with is this private group which is a mix of both patients and care partners: https://www.facebook.com/groups/MSABuddies/

The Multiple System Atrophy Coalition has a vibrant and engaged following on Facebook. With more than 14,200 followers it is the largest MSA group on social media. We strongly recommend “Liking” and “Following” our page and then engaging in conversations via the comment section. MSA is very rare but there is no need to go it alone. Also, a great way to generate awareness for this little-known disease is to “Share” our posts to your own timeline