My care journey with Synapticure

Person living with ALS

November 2, 2022

Person living with ALS
February 9, 2024

I’ve been living with slow progressing ALS since 2013. It’s been a long journey - it took three years to get a diagnosis, and because of where I live, I haven’t seen a neurologist since 2017 as they left the state. I love my home, but I can no longer drive, and I’m limited to the care and treatment my primary physician can provide.

I heard about Synapticure on social media and decided to reach out simply to learn more. I am thankful for the services Synapticure has provided me, and I wanted to give back by just sharing with everyone how they’ve helped me.

Here’s just a short list of what they’ve supported:

  1. Jean, their insurance navigator, put me in touch with multiple resources that offered assistance in my apartment and medical equipment such as an alternating air flow mattress for my hospital bed which greatly alleviated pain he was experiencing
  2. The care coordination staff worked with my PCP to get home care services. I now am accessing home nursing, PT, OT, SLP, LSW, and aide care(daily). My SLP is working with me on an SGD. My aides are helping with ADL and meals.
  3. Despite my medical records being spread over the last decade and multiple doctors, their team was able to consolidate all of my records to ensure I could get coverage for care and get referrals into a new neurologist
  4. Synapticure’s neurologist, Dr. Faber, was able to order ALS specific medications for me along with monthly labs and we were able to set that up with my home care team.
  5. The care team connected with the local ALSA chapter, who was able to help identify a local RT provider to perform PFTs and local DME supplier to provide Non-Invasive Ventilation after the PFT
  6. I have two children, so I wanted to make sure I knew if I had a genetically-linked form of ALS. Their geneticist, Brook Crooke, to complete genetic testing, which is awaiting results now
  7. Synapticure set up a referral to my local ALS clinic, hopefully to support telehealth visits but, if that’s not able to be done, my local ALSA chapter and home health group will facilitate transit

The care team checks in with my home care staff to ensure continuity of care and make sure I’m getting the best care I can get. My care team at Synapticure is checking in regularly via email and text, and I’ll be following up with Dr. Faber in late October.

I would recommend Synapticure to any ALS patient, even if they have a great care team already. They’ve been a life-line for me, and I hope they can help you too.

ALS patient

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