Willow
The high blood pressure and cholesterol levels are relevant to people who have possible heart disease which can be managed by diet. Kudos to you for actually doing that; a close family member who's a medic tells me that very few people carry through on it, hence you are pretty special in your determination to take responsibility for your health. But a healthy diet for someone at risk for heart problems is a long way away from a healthy diet for someone battling ALS.
I don't have ALS; I have severe bronchiectasis in both lungs. The closest analogy to me which you are lkely to have come across is someone with cystic fibrosis. My healthy diet is lots of protein, lots of fat; ie lots of calories, with veggies and whole grains as rare treats because the effort involved in eating them far outweighs the nutritional value to me. People visiting me in hospital have tut-tutted about the way all these people are eating fast food and I have to explain to them that we are not like the rest of the world; it is a healthy diet for us.
I need lots of protein so that's the first priority, and steak marbled with fat is doubly beneficial because of the calories. French fries are pretty good as well since they are vegetables, just vegetables with lots of calories!
That is pretty close to what someone with ALS needs, so it's worth a try, particularly because you don't have specialist expertise to guide you. All I can tell you is that my diet is one approved for people with my own terminal disease; losing weight is something which my team takes very seriously indeed, and the aim is always to reverse it.
Adequate high calorie intake is essential because that is the fuel you need to burn in order to do anything. Resting is good, but you may need to rest less if you can up your fuel intake to give you the energy you need to do things.
And I do understand the problems with the invisible disability; you look ok on the surface so people think you must be ok, and you can carry on with the denial. Last wek I attended a retirement party and people told me how well I look; for the most part I did not explain that I do 8 hours a day of treatment and that if I skip even half of that I'm likely to be in hospital pretty rapidly. So far I'm still out of hospital so I may have got away with it!
The people here are amazing; I have no doubt that if their ALS aware nutritionists say T bone steaks are a no-no they will be onto me like a ton of bricks, and provide better advice. But even though you don't have much back-up in your smaller community you do have it here, and you will keep on getting back-up from the truly amazing people here for all of your journey. I wish you the best of luck on your way, and if there's ever anything you want to know about lung problems feel free to pm me. If all else fails I'll consult the close family member who's a medic so I don't say anything more than usually dumb for me...