type 1 diabetes (or LADA) and ALS

[gnat]

Is there anyone else on this group who has type 1 diabetes or LADA and ALS? I was diagnosed with diabetes 4 years ago and now newly diagnosed with ALS. Not looking forward to the challenges of managing diabetes when my hands lose function. Keen to know how others have got on.

 

[Swaite1]

I have been a type 1 diabetic for almost 51 years and was in excellent health until my ALS diagnosis last July. I use an insulin pump and continuous glucose monitoring to control my diabetes. At this time, I'm still able to use my arms and hands but have the same concerns as you as my left arm and hand are getting weaker. Picking up a large cup of of soda and my hand shakes to hold it. I'll be interested to see how others answer this question because I know the day will come when the ALS will make controlling my diabetes nearly impossible.

 

[gnat]

Thanks for answering and for your information, I am not on a pump but think this might be a better way to manage it that multiple daily manipulations of pen and needle. Right now I am using fingerprick testing. Currently our funding in NZ is very restrictive for getting a pump and I would not qualify unless my control worsened. Although they might do on compassionate grounds if it is going to be much easier to manage that way. CGM gets no funding at all, and I have used it from time to time but right now am doing just fine without it as I am working from home and having limited meetings. Will save it for some travel I am doing in a month and later when it is too difficult to do the blood tests. Diabetes was hard, but this makes diabetes look fabulous! I ended up with my Graves disease relapsing (after 6 years in remission) about 3 weeks after the MND diagnosis, from the shock I'm thinking. Thought the breathlessness and fast heart rate were somehow the MND progressing really fast, then suddenly realised it was probably Graves, so actually was a relief.