My ALS Journey #7

My ALS Journey #7



hello it is June 2019 and this is a number six in my ALS journey I am still walking and talking still eating and breathing but I do know this quick fatigue in my legs and fatigue in my speech if I talk too much so you may notice at the end okay um first of all als is tough to diagnose and treat as I have said before and when something is that difficult people feel hopeless and that's a natural human state because human beings tend to hold and when there is no place to put our hope we look for other things to fill that void there are always plenty of people around ready to take your money and lots of nonsense around for such things and I want I would like to talk about five things that are basically confusing a lot of ALS sufferers and I think it's a cruel thing to do not all of these are nonsense some of them are just under research or they've been broadly publicized but they're still just conjecture and I'll point some of those things out first off Lyme disease there's a fellow on Twitter who insists that all als is undiagnosed Lyme disease one thing is you want to always look out for people who use all or every and secondly his firm belief is that the best way to treat ALS is with long-term massive doses of antibiotics which is basically how they create Lyme disease another bit of nonsense out there is this idea that overuse of antibiotics and anesthetics is actually the cause of ALS and this like I said it's not necessarily nonsense but it it is kind of under research and over orded and also it runs contrary to that first person who insists that the best treatment for ALS is massive doses of antibiotics a good example of how things can get very very confusing and number three there are lots of discussions about gluten sensitivity and allergy and because some of those symptoms look very much like ALS a lot of people have pinned lutein sensitivity as a cause of ALS there's very very little research to support this but like I said that information is out there I wouldn't stop eating bread just because of this number four is the effects of aluminum and we use aluminum in a lot of products and fast food wraps things and aluminum and we drink beverages from aluminum and so when when we see people with ALS and we say have you used a lot of soft drinks maybe that's it well it might be a false connection because a lot of people use ale use aluminum who don't have ALS and a lot of people have ALS don't use a lot of aluminum there also are some people who like to point at the fact that veterans are two times more likely to get ALS but from a scientific standpoint there are far too many variables for example I have a brother who died of ALS he was in the Navy in the South Pacific during Vietnam another brother who does not have ALS was an airborne paramedic in the 82nd airborne I was a two-by-four in field artillery two years active four years in the Army Reserve I do have ALS and both my aunt and my mother were never in the service and they both died of ALS so I don't really think that's a valid connection because there are just far too many variable that just can't be accounted for now one thing worth considering is this idea of antioxidants both Radha kava and Riley's all have the effect of neutralizing the neurotoxicity of free radicals now what that really means is if you have a diet that increases the free radicals in your body it can attack your nerves and poison them okay and so a lot of people are looking at this as because rylos all can lengthen a person's life what they're thinking is what if we eat a lot of foods that are high in antioxidants well it won't cost you anything to do that it's good nutrition and if it does use some good more power to you if it doesn't it's still good nutrition to things that you might also consider if it's legal for you a caffeine which is legal everywhere also good antioxidants CBD which is legal everywhere drink it is tea it's it's a good antioxidant and also weed which I don't recommend and finally another thing you can do for yourself which may actually slow the progression is to be careful about how much physical exercise you do a lot of people that I've talked to who have ALS when they were when they felt first onset before they were really diagnosed they operated under the normal assumption if you work a muscle really really work it it gets stronger as you work it but he may L ask the more you work it the faster it degrades so if you know you've had ALS it's best to be and and I have checked this with medical professionals moderate exercise is good extreme exercise is bad no exercise is bad so moderate exercise you don't want to over use those muscles because they will degrade faster but you don't want to not use them because the same thing will happen they will act raphy if they're not used so very very minor you're not going for hikes you're not going for long walks you're not lifting weights but normal daily activities are you know will be a moderate amount of exercise shouldn't overdo your your muscles now if you have one of those versions of the of ALS where you're two years from diagnosis to Cemetery it's kind of hard to make those kinds of adaptations god bless you do what you can but for those of us with very slow progression and I've talked to many people who have a relative for example one person this morning told me her grandmother had it for eight years so if you have a slow progression there are things you can do to be more comfortable and things that will not speed up the progression less is more in the case of ALS so I'll see you again in July incidentally I have had a genetic test knowing that both my aunt my mother and a other had ALS it should not be a surprise that my ALS is familial inherited through the family I the gene test does verify that the cause of my ALS is genetic anyway see you in July after my second ALS clinic

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