Sorry to hear of your diagnosis. My husband received his definite diagnosis on 8.16. We are in patients with New York Presbyterian, ALS clinic. You will find very good resources on ALS.ORG They have documents by topic. If you call the ALS Association they may be able to help you. We are fortunate that they are active in the NY Metro area and they have been extremely helpful. There are also non profits out there that may be able to loan or give you equipment (they have grants).
We also had a diagnostic delay. Tom started having slurred speech in March. Coughing after drinking in
April. In NJ we have to wait for appointments with HCP and tests. So, it took from April to end of July for all of the physician visits and tests. Tests were: Blood, MRI, Chest Xray, Barium Swallow and EMG. Once diagnosed by NJ neurologist on 7.27 we were given an end of August appt with NY Presby, but then I was able to move it up to August 16.
With the earlier appts and tests, I had to call to see if there were cancellations or if we could be moved up in the schedule. We waited 3 months for swallow therapy with St. Barnabas Medical Center (no other provider in the area had openings either). But....Ny Presby said they did not want Tom to continue with the swallow therapy. He has bulbar onset ALS.
The Healthcare system in NJ is very backed up. Lots of delays.
