I'm a new member of this unfortunate, exclusive club

[Fusia]

Hi, welcome, and I'm glad you found us.

After dx I decided I wanted to put together a local team to take care of my needs. I still left the door open at Mayo in Jacksonville but that's a two-hour drive. My local neurologist specializes in pain management but he has had two other ALS patients and was so willing to learn. He is the one who prescribed the power wheelchair. My local pulmonary doctor prescribed the BiPAP. I actually wrote both letters and they just signed them. I didn't have trouble getting either one.

I have a RT who comes to my condo when I want him. I haven't seen him since June. He calls each month and asks me if I need him to stop by. I order the supplies over the phone and am required to see him once a year. I ended up buying my own breathing test equipment so I know all my numbers and can control the time I test myself. I do see an ALS specialist about once every three or four months but it's not my diagnosing doctor at Mayo. My primary care doctor, pain management neurologist, and all the other doctors I might need are all within a 20-minute drive from me. I would go to Mayo when it comes time for a feeding tube but, other than that, I feel comfortable with the doctors I have here in town.

I also lived alone when I was diagnosed and the year following the diagnosis. I had just finished remodeling my retirement condo when I was diagnosed. After having some contractors look at it, I decided it wasn't large enough so a friend and I both sold our places and moved to the beach. Neither of us have family so it worked out pretty good. I immediately remodeled the whole thing to make it accessible and got that out of the way. There is room for caregivers when the time comes. The best thing is that I made some new friends and found a new church that I love. My housemate and I were both college professors but he was a lifeguard before that so he appreciates being back on the beach.

With this disease, staying ahead of the game really is key to a better quality of life.

Thanks, Kim,
It's good to hear that you are doing well with mostly local providers. I also love your story of you and your friend combining resources and ending up with a place at the beach that works great for both of you. I plan to stay where I am, and other than remodeling the master bathroom to include a roll in shower, there is very little that needs to be done.

Fusia

 

[Fusia]

Fusia,

One thing that helped me keep my energy was ordering prepared meals from Healthy Chef. The food is good, it's organic, free range and wild fish. You can build a menu each week and it arrives at your door each Friday. No cooking. Just remove the vacuum sealed top and pop in microwave for a couple of minutes. Decent portion sizes. I also get prepared frozen shakes from Daily Harvest and they have lots of delicious, healthy ingredients. You just fill the container up with the liquid of choice (milk, almond milk, etc) and throw it it your blender. It makes a creamy shake. You can add extra calories in the form of coconut oil, avocado, etc. if you need to increase your caloric intake. I rarely cook now and always have healthy food in the house. I wish they had this service back when I was working, although cooking was one of my hobbies.

Very helpful info, Kim, I will look into those. I love to cook, too, but it has become time consuming and aggravating, so no longer as enjoyable.