You were just diagnosed with ALS now what? I can’t say what I did will work for you but here is the path that I took.
1. Second opinion which means double the tests but I would rather double check.
2. Get connected with your local ALS chapter asap
3. If you have your voice still start recording phrases. You don’t need a doctor to do it just start. Use a recording device that uses a SD card. Make sure you are in a quiet room and record, words, phrases, you reading or singing. You can ask your team about voice banking and also ask about double dipping. This is where they will create your own synthetic voice for your eye gaze. I highly recommend doing this as early on as possible.
4. Get set up with your wheelchair when walking becomes difficult. Each ALS chapter has a loaner closet for needed equipment until you can get yours.
4. Suprapubic Catheter has been a energy saver. If you go that route ask to have your feeding tube done in same surgery. This will reduce the amount of surgeries.
5. Use your resources Team Gleason and ALS association can help you just have to ask.
6. It takes a village please do not be scared to ask for help. We are all in this together. You are not alone.
I can only help give you the tools, it’s up to you to make the decision on how you want your journey to go.
I was sent a message while in the hospital saying I should give up trying because I have a few weeks left. I’ll let my god decide when it’s my time.
I want to give you hope, I want to let you know it can be hard but there are good days too. I want you to know I will be as honest as possible. I pray you don’t give up. Live your life to the fullest no matter the timeline because God has a plan and you are part of it.
#tamuraisadventure #rockinals
