How do we handle the mental and emotional aspects of this disease? The ALS clinic I attend never talks about this. Insurance certainly doesn't help with this. Even the two support groups I attend don't address this very often.
How do you cope with:
Here are some of the ways my wife and I cope with issues like these.
Balance. We try to find a balance between preparing for what lies ahead, and enjoying what we can today. There's no question that we need to get ready for what's coming, but we don't need to dwell on the negative, and we need to enjoy the time we have left.
Get the focus off self. We need to take care of ourselves, and our needs are increasing. But it helps to get our focus off ourselves, at least occasionally, and focus some of our time and energy on others. This helps us feel useful, and takes our minds off the negative things happening to us.
Prioritize, minimize, let go. We can no longer do all the things we used to do. We need to reduce some things (can't type on the computer as long), let go of some things (can't ride a bike anymore), and prioritize so we do the most important things.
Support groups. Getting together with those who are going through - or have gone through - what we're going through is helpful. We can share our struggles, hopes, knowledge, and encouragement.
Battle the disease. There are many ways we can fight back against this disease:
Trust God. Of all the coping strategies, I believe this is the most important. Some encouragement I get from the Bible includes:
Some favorite Bible verses:
"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."
I have felt that peace - though I can't understand it.
"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all."
It's nice to know that we can be renewed inwardly - and daily - even though our bodies are wearing out. And while it's hard to think of ALS as a "light and momentary trouble", these verses give me hope that I have an awesome heaven to look forward to.