Also for people with ALS (pALS), it is important to be able to fully enjoy small or large parties. Here are some tips to increase the party enjoyment and ensure that you are comfortable participating in the festivities.
Preparation
- Accessibility: Ask in advance if the location where you are invited is accessible to you. Are there stairs, thresholds or level differences that form an obstacle?
- Help from family and friends: Are you hosting guests yourself? If so, ask them to help with the preparations. For example, they can prepare a part of the party meal and bring it with them. You can also consider using a catering company.
Enjoyment is a priority
- Focus on the meaning of the festive days: Keep the essence of festive days in mind when planning and organizing meetings.
- Accept changes: Understand that the festive days will be different than before you had ALS. Be open to new ways of celebrating.
- Change your role: If you always organized the family meeting, you can still involved by planning and organizing instead of physically doing everything.
- Simplify gifts: Shop online or opt for gift cards. Use post-it notes with names on gifts and ask for help with wrapping.
- Share your feelings: Be open about your frustrations with ALS during busy periods. There is still joy and fun to be found, especially if you maintain the festive spirit.
Festive with a PEG Probe
- Advantages: A PEG probe makes life with ALS more bearable. It helps you to comfortably and safely obtain the necessary energy from food without chewing problems or choking.
- Participation in meals: You can still join family meals by having a liquid meal and then eating small bites afterward.
- Maintenance: The maintenance of the probe is simple and takes little time. Make sure the probe is securely worn on your body.
- Preparing your own food: You can prepare your own food with a blender. This is often cheaper and you know exactly what ingredients are in it. Avoid meat and fish products and some vitamin supplements with a high fat content.
- Joining in for a drink: You can enjoy diluted alcoholic drinks through the PEG.