- Are you sure it’s ALS?
- I have seen two neurologist who confirmed I had ALS. I’ve had blood tests to rule out possible other illnesses (no such luck). There is no definitive test for ALS. I pray everyday that it is a misdiagnosis, but, I accept that this is the battle I’m in.
- How long?
- You can google, I cant talk about this. I can tell you there is a lot of variety in ALS cases. People in their 20s to people in their 90s are diagnosed. The averages are super depressing and I just can’t. So…if you are talking to me please don’t ask / bring this up.
- Does it hurt?
- Not really. My left hand feels like it is wearing 3 wool gloves. I can’t turn caps on bottles, making the peace sign takes effort….and if I manage to flip you off with my left hand….you KNOW I mean business. My fingers still lock up sometimes and that really hurts…like a really bad charlie horse in your arm. My left leg / foot is starting to sustain some damage. I’ve noticed some balance issues…and I’ve fallen twice recently (both times I chalked it up to being clumsy).
- What can I do?
- Check in with me. This means a lot. A pretty big part of me is worried about becoming more and more isolated as the disease progresses. Sending a text, note, card, or phoning all help. At the same time, if I don’t respond right away just know some days are harder than others and I’m just brooding in my bat cave.
- Pray for or with me.
- Go for a (short) walk with me
- Play a board game with all of us
- Help with watching the kiddo when I’m at the dr, therapist, support group, etc.
- If you know a hair stylist who can make a house call hook me up. I need a haircut and going out to get one sounds overwhelming.
- Lame adult stuff. Jacob and I are getting back on our feet…but cleaning, grocery shopping, walking the dogs, cooking, getting an oil change. All the stuff that you kind of do on auto pilot as an adult is currently overwhelming.
- This list will grow and evolve with time as the disease progresses. Right now we are in survival mode and warm hugs, company, and prayers mean the most. The financial burden of ALS, coupled with the hours of care-taking, and the reality of helping a young son cope are all in the pipeline…but the how, when, what, where of it all is too much right now.
One response to “FAQ – February 14”
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Thank you for sharing this Marianne. It is very helpful to know what is going on and how to help. We love you!
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Hello,
I’m Marianne
Welcome to my ALS story. The corner of the internet devoted to the good, the bad, and the ugly of living with ALS. Here, I invite you to join me on a journey of love, hope, and sadness as I navigate this final phase of my life,
Marianne Has ALS 
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