I've moved your post from a non- ALS related area to its own thread so it will get more traffic. I've also tagged @lisa g to make sure she sees it, as your post was addressed to her initially. Hopefully someone in your area of Florida will be able to provide some possible names for you.
Nice to meet you. I can see by your diagnoisis date that you've had this for quite a while so I'm assuming that your PLS. I am ALS UMN dominant. My speech and walking are affected but I can still do both just slower.
I go to the ALS multidisciplinary clinic at UA Miami. Its guite a drive but I only go twice a year. I keep a local pulmonologist located in SLW and my local PCP to handle any issues.
Are you in one of Dr Benatars studies? I have been in one of his studies for 2 years now. Do you see any neurologists now? If you didn't want to travel that far there is a good neurologist in Stuart, Premier Neurology . Dr Noor Yono and Dr. Rabih Kashouty initially diagnosed me.
How is your mobility?
Yes they are good. They are married. Dr Kashoutys father had ALS. They didn't offer an ALS clinic which is why I switched to Miami. I know someone in WPB that uses Nova clinic in Fort Lauderdale that they're very happy with. Again its a long drive.
I use a local pulmonologist in SLW that I highly recommend, Dr Pamer.
Thank you for the names of the doctors. It so hard to pick a new doctor. By word of mouth is better. I don't think I need a pulmonologist, yet my breathing seems fine but good to know for the future.
Are you still able to walk unassisted? Hope so, because once you need assistance everything changes. I love this forum so much great information.
A PFT is a pulmonary function test to measure respiratory. I have no issues with respiration as of yet so I have it checked every 6 months to see if there's any changes. Do you use a trilogy machine at night or during the day?
Tillie is correct, I was diagnosed with sleep apnea before I was diagnosed with ALS. My pulmonologist said a CPAP didn't help with ALS so even though my respiration is fine now that somewhere down the line I would need a bipap so he transitioned me to a trilogy.