Follower, welcome. Nikki gives good advice--there is a lot to try and you just can't do them all, so take a little time. This is a crushing diagnosis, and it takes awhile for the emotional roller coaster to slow down on occassion.
Tillie, we've seen no more dramatic changes, but Matt continues to move his feet and is now able to pull his legs over with him when he turns in the bed. Hip and thigh muscles? There are also fasciculations down below his knees, so they are continuing to spread back into areas where they had stopped. I think his arms are doing better, too. We had reached the point where I thought I was going to have to use the slip sheets to move him back up in the bed when he slips down, but he's now pulling himself back up (by grabbing the rails) by himself. Lifting a full glass of tea with his arm stretched out is still a no go (it must be closer to his body), but I'm seeing fewer spills and drops.
I wonder about the mechanism. Is the Lunasin fueling those motor neurons so they are now talking to what muscles are left? He's very gently exercising those that are returning--careful not to over do. Perhaps they weren't completely gone?
Unfortunately, the Diabetes is tossing a monkey wrench into things. Numbers in the 300s are normal and anything under 200 is very, very rare. This may be contributing to his fatigue. I'd sure love to know if that improved from the Lunasin, but I just can't seem to solve that piece (IWBWIWB, right Max?).
I did decide the carb count in the chocolate almond milk was too high, so I've switched the shake recipe. I now use unsweetened almond milk, 6 ice cubes, artificial sweetener if I add coaco, 1/3 to 1/2 banana and frozen berries if he wants a fruitier taste. By running it through the smoothie cycle twice on the Vitamix I can get a pretty smooth mixture.
I was taking Lunasin on my own, but the grittiness of the powder was more than my throat could take. I tried mixing it with all types of liquids, but none worked for me. Besides, since I'm bulbar onset I have to drink all my food and the two Lunasin shakes a day were filling me up so much I didn't have room for my 4 Boosts a day. Nikki suggested I try TUDCA, so that's what I'll start taking as soon as it arrives.
Just to mention I told Bill there was a lab research paper that postulated Tudca may benefit C9 ,which Duker and I have ,specifically. There was a small study of general PALS with some modest benefit too
Becky that continues to be great news on the neuromuscular front Good luck with the sugars!
Oh Tillie, I've fallen off on the videos. I need to do another and compare now. I think there will be a big difference, but it will be good to be sure.
BlueTrain and Azgirl, good luck with the Lunasin! Let me know if you come up with a good shake recipe!
Nikki, we just learned that Matt's liver enzymes are elevated--I suspect more from the Diabetes than anything else. We're stopping the statin (I wanted to drop it way back when) and he's sent a note to D r. B about the latest lab results, so we'll see what he says about the Riluzole. I just hope he takes this seriously and that we can keep the weight up while dropping the sugars. I doubt it, as it seems the high doses of insulin are probably contributing to his weight gain/retention. Grrrrrrrr.
Duker, I'd switch too, under the circumstances. How is the TUDCA?
Thanks for remembering me Nuts. I've decided not to make rash decisions about many things until I've come to terms with this whole thing. The one change I have made is to start reading my Bible again. I'm a long time Christian but I've neglected reading His Word and it is bringing me comfort not found in drugs. We baby sat our 17 moth old Granddaughter this past weekend and while I couldn't play with her like I wanted it was still enjoyable. I'm supposed to get a call tomorrow from Mayo, I'm not sure exactly what it is about, but I'm going to request again to be a part of any study they might be doing, especially the stem cell trial. If it doesn't sound hopeful that I will ever be selected I think I will give the Lunasin a try from my home. I'm so glad I have someone to talk to about this.
Your recipe sounds appealing, Azgirl--I think I'll try it. The chocolate milk gets to be a bit much. I think I'd go for white wine though--a nice chenin or sauvignon blanc, though on second thought it's probably a waste of good wine. Follower, welcome from a fellow (though not native) Iowan--not many of us on this forum at present. I was also diagnosed (confirmed) at Mayo.