Experiencing the effects of a progressive illness is a humbling journey. There are a great many tasks that become too difficult to do and attempting to do them creates more frustration than the end result is worth (especially when flubbing requires time and effort for cleanup of spills and corrections of mistakes). Because it seems selfish to ask for help, it is taxing and sometimes painfully difficult to do. As my abilities decrease it doesn’t seem to get easier, just more necessary. It is a huge relief for me if other people understand how to help me and offer to do so without being asked. Since things still need to get done, I made a list of ways to assist me in completing tasks. While these things may seem like common sense, they have taken time and emotional energy to figure out through problem solving and trial and error. We all have different personalities, and MS shows itself in different symptoms and challenges; so the things that would help me may not apply to you. What we need also depends on our level of mobility. At the same time, it seems silly for me not to share my own experiences in case they might help someone else. So, if it would help you, tweak my list and give it to your parent, your spouse or friend. These are mostly for someone who is very limited in walking.
I want to be useful. Please help me be productive by helping me find purpose in my days and peaceful rest at night. See value in the things I do and who I am. Encourage me.
Save me steps, preserve my energy and help me prevent falls.
Give me room to maneuver on foot or on wheels. Please don’t block my way as I have a limited amount of time and energy to get where I’m going.
When doing a task (like cooking, but other things too), do the running – get ingredients and bring them to me – that saves a ton of energy. Ask “What can I bring you?” Don’t walk away after doing one thing. Ask “what’s next?” or “what else can I do?”
When we go places, park close or drop me off at the door whenever you can. If possible, have someone wait with me while another parks the car so I don’t have to repeatedly decline help from well-meaning people (yes, I’m thankful for their offers, but a string of them results in unwanted attention and makes me start to feel pathetic).
It takes a great deal of energy and concentration to put one foot in front of the other or even stay upright, so I often need help observing my surroundings. If we are waiting somewhere, find a comfortable place for me to sit. Sit with me if you can. Think about the shortest way to get places and think to suggest breaks.
Give me opportunities to rest or nap, even if it’s just 10 minutes.
I often feel isolated and the walls start closing in on me. Just going for a ride in the car reminds me that there’s a world out there and allows me to regain perspective. If there’s an errand to run, invite me to go along but offer to let me wait in the car if I’d prefer. Suggest going out for a special drink, watching kids play at a park or visit with friends outside in comfortable weather. I have to ask for so many things on a daily basis that having to ask for an outing seems even more demanding, so if you could use your imagination to come up with ideas of places I can go and things I can do, I would be very appreciative.
When talking, try to eliminate unnecessary noise in the background (music, other talking, tv, etc.) because I have trouble filtering it out and staying focused on what I’m saying. If I need to take a break to leave, process what’s been said and collect my thoughts, allow me to do that and resume the conversation when my head is clear.
I am more sensitive to temperature than other people. Ask me if I’m comfortable. Offer a blanket or a fan. Help me gauge the temperature as sometimes I don’t realize I’m hot until I’m overheated.
If you are the same gender, please go with me to the bathroom in case I need help.
Troubleshoot for me when you can. Anticipate what I might need
Give me a place in the refrigerator for my medicine where it won’t be disturbed and I can easily find it. Ask if I’m on other medication where timing is important and remind me to take it or have it with me when we go places.
Thank you for caring about my needs. I did not choose to need help, but am so grateful people choose to help me.