What can I give to provide entertainment and other activities the MSA patient would enjoy?

People with MSA begin to lose the ability to do things they used to do. Motor skills decline over time so holding books can be difficult for the avid reader, and hobbies such as gardening, and woodworking may become impossible. They may not be able to engage in their usual hobbies so think about things you can send them or bring when you visit that would provide some fun distraction. Be creative!

• Books on tape: Give gifts of Audible books. These are easy to send by email through Amazon and can provide hours of mental stimulation and enjoyment.
• Recommend podcasts: Send recommendations for podcasts that you have enjoyed. Podcasts are another source of entertainment that can be enjoyed by someone who is wheelchair bound or bedridden.
• Suggest shows/movies to watch: Share recommendations for movies and TV shows you think they may enjoy. Watching movies and TV is an activity that can be enjoyed by the patient and their family together at almost any stage of MSA.
• Give appropriate gifts of food and drink: Ask what the patient’s favorite food is that they can still enjoy. MSA patients usually develop swallowing difficulties so ask what appeals to the patient that can still be enjoyed before you bring anything over. Many MSA patients enjoy smoothies and ice cream or milkshakes even after eating solid food becomes more difficult to eat, so stop by with a smoothie or a milkshake if the care partner gives the go-ahead.
• Send email updates: Send regular emails telling the MSA patient about your daily life. The elderly parents of an MSA patient provided great joy to their son and his care partner with emails about what they did each day. When it became difficult for the patient to carry on conversations, the care partner was able to read the daily emails to him as a way of sharing news about the family. This provided special time each day for the MSA patient and his care partner to interact with each other as well. Again, be mindful that emails that simply brag about your busy, exciting life may be insensitive or upsetting so be careful of your tone. Just regular updates about your everyday activities are likely to be more enjoyable.
• Gift airline miles: If the MSA patient is still able to travel, consider giving airline miles if you travel a lot and have more than you need. Many MSA patients are able to travel early on in the disease. Family trips are extra special for people with terminal illnesses. It’s a way of making memories while the patient is still able to, and many people can’t afford to do so without some help.
• Visit from out of town: For family and very close friends who live out of town, talk to the care partner about a visit (in a post-Covid world.) Don’t wait too long. If there is a good time for you, and it’s okay with the care partner, schedule an in-person visit. Don’t stay too long — anywhere from three to five days usually is enough. Consider visiting in groups so you can entertain each other when the MSA patient and care partner are busy. Unless there is a lot of room in the house and the family insists you stay with them, consider staying at a hotel or Airbnb. Don’t expect to be entertained. Spend time with the MSA patient and offer to help. There may be chores around the house that haven’t been done in a long time. Get out the drill and hang up that fire extinguisher that has been sitting in the garage. Offer to put together the outdoor storage box that no one has had time to build. Offer to shop and cook a meal (and clean up after) so the care partner can relax and enjoy time with the family. These kinds of chores (which, of course, can be also be done by family and friends who live nearby) are incredibly helpful to the family.

Contributed by Patricia Libby Thvedt, former care partner to an MSA patient and member of the MSA Board of Directors.