I am Debra Robertson

My story with ALS, I was looking for a new opportunity within the VA system, and that was a new position for Neurology. When talking about this job opportunity I was asked would I be interested in starting a ALS multi-disciplinary clinic. I said sure, wow had no idea what I was accepting. When I started this journey we had a motor neuron specialist physician that was seeing patients by himself. He had speech involved and that was it.

So here I come that had no idea what to do, my biggest supporter was our PVA representative. He gave me names of other coordinators that I reached out to.

Learning what the ALS Directive is, I started reaching out to the different services to get a team in place.

Our biggest push back as been in the physical therapy team member, we had a great one that actually worked with the ALS veteran remotely and he was part of rural health, he got pulled from us and now our local VA does not have the personnel to support us.

We have speech, nutrition, OT, respiratory, pulmonology, palliative care that is a part of our inner team. The GI and IR team do not understand the importance of getting the feeding tube placed quickly. Prosthetics are good getting equipment out timely.

But there is so much more I feel to do for these patients, I would like everyone to understand 1) how important it is to get these patients seen quickly 2) for the clinics to understand trying to get the appointments together as most patients live a distance away. 3) canceling patients appointments due to no response without reaching by other methods. 4) having myhealthyvet representative in the ALS clinic to help each veteran get registered.

I really want to make a difference for these patients, but it gets exhausting fighting to get things done and other teams do not want to make changes in their clinics or schedulers are not willing to change.

I keep trying every day to make one thing better.