Memory Health: Alzheimer's Support Group

Something I need to get out while I still can...

Something I need to get out while I still can...

Hi kids. Got something I need to leave with you fellow demented folk and caregivers alike. I don't expect anyone to trust what I have to say but I do hope folks remember it the next time they are having a hard time getting through to their patient or patients in the MCI stage when you find yourself mentally stumbling over your mental two left feet. You used to be better. Clearer. For the caregivers, if only you could make that connection or communication stronger, even if for a little while...

One more slight digression before the fireworks but to state facts, I am indeed in the MCI stage of Lewy Body Dementia, marked by both Alzheimers and Parkinsons symptoms with a special twist (LBD is special, not I specifically): due to a quirk in how the Lewy Bodies attack the brain...well something like this; docs don't exactly agree on this part but for whatever reasons, LBD patients experience cyclic cognitive phases where when in an up phase I am alert, curious about the world around me, my speech is smoother, my gait is almost normal. When in a down phase I am basically Homer Simpson after a trip to Moe's. The only reason I mention this is that it does give me a pretty vivid view of the limits of my cognitive and physical abilities; I know how much is still "good enough" and how little it can be. The best The Cleveland Clinic can advise is....ok let us know if it gets worse. Well, its getting worse and so I am writing this down now while I still can.

OK we are all caught up. I needed you to know this so when I tell you the next part you will understand what I mean and that I know the difference between differing levels of cognitive ability.

I feel like I need to throw on a dozen or two more caveats but lets have at it and I can cover those at the end. What I am here to tell you is a very simple fact:

There is a compound occurring naturally in cannabis that can and does lift the fog from my mind when in the down-state and and restores my normal cognitive abilities for a time. That time has been as little as an hour and as long as four hours from a single dose.

This compound produces zero psychoactive effects; in fact it has naturally occurring anti-psychotics as part of its makeup.

This compound is from a family of compounds called "cannabidiols" or CBDs for short. And I am all about short.

There are no side-effects I have noticed from this aside from increased appetite and better sleep. It doesn't put you TO sleep, just helps you once there to remain relaxed and Z-ed out.

I am referring to "this compound" only because that is as accurate as I can reasonably be with this. There has been zero serious research on this and I am too far gone to effect my own. Thus I can only share what I have observed and what has worked for me.

EDIT:

As with many demented minds, it was all so clear in my head and yet when it hit digital "paper" I omitted maybe the most important part, the one most people will really care to know. Sorry. Going nuts can make getting this stuff right harder than it used to be.

The missed part is this:

A typical situation to give you just one real-world example, I can be in a down-phase and my expressive aphasia is worse, I have the Parkinsons "shuffle" and am generally mentally fogged-in. I do little to nothing but am not bored, just confused by my surroundings. Recall is almost non-existent. I can then ingest a 20th of a gram of Charlottes Cherries Sap (an extract made from Charlottes Web, 69% CBD, 2.3% THC), 34$ per half-gram at a local dispensary. Within 60 seconds of ingestion my mind starts to clear and I start looking around for something to do. Within 2 minutes my speech has smoothed out and my gait is largely normal again. I am in control again, not the dementia. There is little fog left, sometimes even none. I start making *plans* to do things, something impossible in the other state. There is no "high" or feelings of elevation, other than the general feeling of relief at being in some semblance of control of your mind again. My ability to multi-task is increased. The period of efficacy lasts between 1 and 4 hours; a double dose can last me an entire outing to the mall, something else totally impossible in the other state. My wife/caregiver has seen this and on her own told the speech pathologist she would get this for me as long as it had this effect, and he agreed. Getting this exact extraction has proven difficult of late.

ARTICLE RESUMES:

It goes without saying if I cannot even specify the compound, any use of this is for your own purposes and I will give you a 10-foot guarantee for it; ten feet from my desk and the warranty expires.

CBDs are present in very few strains since most are engineered for the high or THC content; CBD-based strains are anything but that. That said, the amount of CBDs in even a "CBD-rich" strain will probably top out at around 10%, far too little to be efficacious. For this is have any practicality, it must first be concentrated, often done chemically (but safe unless your an idiot college student, they are always blowing themselves up). The result is a small "dab" of concentrated cannabis about the size of a nickel and about as thick. This extract from the right strains of cannabis will produce the "magic formula" that does it for me. When the extraction is between 60-70% CBD, with less than 4% and more than 2% THC, a single .05 gram dose of this vaporized can lift the fog from my head in less than a minute and never more than two. Where I can't handle busy public places normally, I can with this.

If the extraction is more than a few percent off in the CBD part or off at all on the THC side, this doesn't work nearly as well. These figures are from lab-testing that is now standard in NV, nothing I did.

The two base-strains I have found to work the best for my dementia are Charlottes Web and Harleys Storm. Nothing else comes close or works as well.

My wife and speech pathologist were amazed at the change that happens.

But wait....thats WEED! POT! Whacky Tobaccy!

OK I have been trying hard to be as specific and precise as I can be; mind you I am fighting dementia myself. So lets be CFB as my drill sergeants said back in the day; Army loves acronyms: CFB is Clear as a F-ing Bell. Anyhow lets be very clear on a few things.

First, I am not here to advocate legalization or the moral rights or wrongs with cannabis. I happen to live in a state where its legal for everyone to grow and have so I have no legal rights or wrongs to deal with either. What I AM here to impress upon you is that under the right circumstances (dose, strain, etc) this works absolute wonders for my dementia and as a result, my quality of life. This is a true fact and everyone from my wife to my neuro at Cleveland Clinic are supporting it, mainly due to the results it produces.

The reason I tried so hard to step carefully in stating what it was that was actually working is that this absolute can NOT turn into one of those articles that claims cannabis cures cancer (or by the same token, cannabis causes cancer). The claims in any direction about cannabis are vague to the point of being dangerous. Allow me a simple analogy to illustrate what I mean. Saying cannabis helps cancer (for example) is as pointless as saying tree bark is great for headaches. No, a certain compound found in some tree barks can be purified and processed into aspirin as our grandparents knew it. So while its true that trace amounts of a headache cure CAN be found in tree bark, no one with a headache will go out and eat a tree expecting results. As educated adults, we understand the difference. Cannabis is no different. Cannabis by its, unprocessed or whatever is exactly like many think it is. However with the right strain, the right compounds in the right ratios can be extracted and at that point it is real medicine. So this is definitely not a "Cannabis cures X" story and anyone who says it to you like that is frankly full of caca.

Speaking of excessive values of excrement, you really need to do your own hands-on research on this if you hope to get any value from it. You cannot rely on established medical research as you might think after seeing all the stuff in the news of late that this study shows cannabis helps this or another study that cannabis use causes brain-damage or...take yer pick. The reasons are pretty simple if you don't know. Few key facts to keep in mind:

* Any studies claimed to have been done in this country are out and out lying because the DEA has forbidden any serious research into cannabis, pro or con. Been this way since at least the 70's.

* There HAVE been a handful of studies done and by reputable universities but there is a catch here too, thanks to the DEA. In this country, researchers can get permission from the DEA to do cannabis research but they are limited to getting material from a single place, a farm in Missouri I think. The cannabis grown at this farm is not grown by anyone who knows what they are doing and to a one the researchers have complained about the low quality of the material from this farm, yet they are forbidden from getting it anywhere else. This stuff is so bad the researchers have questioned if it is even cannabis. The THC content is like 2%, CBD 0%. I don't think you can even buy cannabis that low/bad anywhere.

Thus a vast majority researchers have been denied and the few allowed have been given substandard material to work with, ensuring a result of "no medical value". Anyone claiming anything else is full of....well you know.

I said the above not to trash the DEA or whatever but rather to make you think for yourself. I fell into this by accident, desperate to find something, anything that would treat my sciatica pain w/o knocking me out. If you are going to have or learn reliable information about this, you better do it yourself because each and everyone reading these words with dementia today will be beyond help even if real research started tomorrow, and that definitely won't happen with Jeff Sessions running things.

This works for me on levels that has impressed my entire medical team and is making the MCI period for us alot less painful than it used to be. Will it work for you? No idea; it might help anyone with dementia, it might only help LBD folks, who knows. I am simply stating its helping me regain a quality of life I thought was gone for good.

For more information on CBDs effects on the brain, here is something that spells it out better than I can:

leafly.com/news/science-tec...

Oh yeah the picture is from the very last plant in my very last crop. I am no longer able to raise and process like I used to so thats the end of that.

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Jeff,

Thanks for documenting this very useful information. I think cannabis will be legal across Canada beginning in 2018 - this should provide an avenue for professional, peer-reviewed research.

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Cheers Christian; it just drives me crazy to know there is something in there that can help others in my same boat but it feels like the trials of Sisyphus trying to get it out...and it really hurts to think that people in this spot can't have something that would help them so much due to nothing more than simple, willful ignorance. The worst kind. People will say what they will but Christian, you absolutely can NOT put a price or value on something that gives us our minds back, even if its just for a while. Its like a vacation from the dementia, a 24/7 occupation. I just wish I had enough of my brain left to keep doing my own research as I feel I got a ways nearer to the solution. Sadly right now I just have some correlative behavior and single data points on things which isn't enough to draw conclusions but man, I hope its enough to spur someone else to take up the task. Put is this way: it is my considered opinion that whoever can actually "package" the medicine in the right way will be a literal god (small G) or savior to millions. That is no exaggeration. I wish people could see what I have seen.

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ChristianElliott maybe I will be moving to Canada!

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Even though its "Sin CIty" which is a bit of a joke once you live here, everything from growing to consuming is legal here. Weather is hard to grow in outdoors, being the desert and all but I have developed methods of growing outdoors and even making the most of the weird desert seasons. Still Nevada is cheap and Vegas has the Lou Rouvo (spelt wrong probably) center on brain function here, kind of like a Mayo clinic for the brain. Excellent place in a really weird building. Nothing wrong with Canada; lived in Michigan much of my life but now, the warm dry desert air does more for me than those places can.

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@jeffcobb I am really sorry you are not able to continue growing? Your wife can't help you? I would grow it in a heartbeat if it was legal in my state. I am totally convinced - by all my personal research. I bought 17% CBD oil from a reputable source in another state, but unfortunately even taking twice the dosage it did not ease my pain, help me sleep, or increase my cognitive ability. And it was expensive! AFter so many other positive reports on this site, I just cried I was so disappointed. And I paid more for the 17%. Since my MS has progressed to the dementia state according to the last doctor test, I need help NOW!!!! to stop progression. I WILL NOT go to a nursing home and be a vegetable. That is so CRUEL!!! and pitiful way to end a life. When my dad was in that state and stopped eating, I said NO to a feeding tube for him; just let him go for pity's sake! It is inhumane! I want to find a way to get this medical plant that would help my 3 major problems before I become a brain-dead vegetable with a strong beating heart! Just let me go if I am there! But let me grow a plant in my garden to help me, along with my tomatoes and peppers and zuchinni and herbs and spinach and kelp! What is the blankety-blank difference. Tobacco is the main crop in my state, and its been scientifically proven to cause cancer, yet millions of plants are grown all around me. And I can't grow plants to stop my pain, dementia, and insomnia??? What happened to the freedom in America?????

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Greetings; yes my wife can and will "help" but its more like this: I was the chief cook and bottle-washer as my dad used to say on the grows from seed to final medication processing. I can no longer do that, not and expect anything useful to come of my labors. So right now its a kind of knowledge hand-off, the wife is learning and is motivated because she sees how much this helps my dementia and general quality of life.

Only have a tick this morning but wanted to sorta make a point you (and everyone) should consider: knowing what I know right now about how things work, I know that if I say something with CBD on it helps and someone else buys something with CBD on the label, there is almost zero chance it will work because there is alot more to it than that. To put it another way its like me saying I take a white pill and it makes my pain better so you (or someone, anyone) goes out, finds a white pill and takes it expecting the same results. Saying "cannabis" or even CBD (which is a whole family of compounds) is vague and ambiguous to the point of being useless. So the fact that you had high hopes and the CBD failed you so completely comes as about zero shock to me. To prove it, if your dementia and pain is in the neighborhood mine is in, I could suggest a relatively precise mixture that would do what you might consider amazing things for you. Not stronger or richer or anything, just the right mix. The right extract made from the exact right strain, etc. Oh and no psychoactive side-effects either.

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@jeffcobb I checked my bottle and it is Charlotte's web. It came for a well established store, but I understand what you are saying. None of the DMTs worked with me - alllergic to all of them. Only 1 out 11 psychotic meds helpt my PTSD, and that one doesn't help much. I usually have the opposite reactio

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@jeffcobb on a lot of meds. If it s supposed to take BP up, it will gone down, etc., etc., etc. So I am sure I would need a combo designed just for me and my messed up DNA. It is difficult for me to metabolize a lot of meds and also to use the nutrients from food. So, how would I ever find someone to personally design a combo for me? Probably a mute question because it would be too expensive. The one bottle of Charlotte's Web, supposed to be 17% strength, was $90, with 30% new customer discount. lol. I have cancelled 2 doc apppts this month just because we didn't have enough gas to drive the 45 miles. It is soooo frustrating to know there is something to slow progression of dementia and it is unavailable. The Capoxone that was $3,000 a month was easy to get aid from the company - they already have made billions in the last 19 years on the market. But a plant I could grow myself? Yes, just frustrating. Don't know where to go next. Thanks for all the info, though.

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First I wish I had a shorter name to address you by. Second and perhaps more importantly if I had to suggest to anyone already with the problem who wanted to find the "right formula" to spend a week in a state where recreational stuff is legal, and then have someone who knows what the point of your trip is to make a variety of things available. A single taste will tell you in 60 seconds if its the right one for you or not. You would not "smoke" anything and simply take little sips of vaporized cannabis extract. Within a day or two you would know if this would help you or not and if so, within a day or so more, know exactly what the right mix is for you. Since the stuff that helps the brain isn't the stuff that gets you "high" or otherwise mentally altered, you be more like sampling things at a buffet than say a night out drinking if that was your gig.

The point is no one can or will do this for you automatically, you need to make the effort to find the answer. In time I expect that to change but right now (and all we dementia patients have is 'right now') this is what it would take. Save your money from buying the stuff on the Internet. I have tried quite a few and w/o the right stuff in there, the extracts they give you will be as useless as a stick of gum.

Ultimately if so-motivated, when you find your exact mix, its actually almost childs-play to make your own in the privacy of your own home. And for those that care, its almost impossible to prosecute someone with pre-diagnosed/documented dementia. Just sayin.

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@jeffcobb my name is judi willis. thanks for getting back with me. I have not bought anthing on internet for just that reason. I was in a legal state when I bought the Charlotte's Webb "Everyday Plus" with a family member who vapes for her Crohn's disease (evidently the right combo because it is a miracle worker for her). The seller said he had several MS customers and understood exactly what "I needed." At that time I had not been diagnosed with

"outright dementia" like now, just the pain, cognitive failure, insomnia - which he said would help all 3, especially the insomnia. For a $90 very small bottle. Didn't phase me, but then neither does the oxycodone or the sleeping pills or the muscle relaxers. My psychiatrist did a DNA test to see why I am not metabolizing medicine used successfully for others and the result was that I am missing the gene that converts folic acid to folate. So,,,,,,,of course, another pill costs $30 monthly that is pure folate or something. and, supposedly, that is why I do not metabolize medicine or very many nutrients from food. I guess my brain is starving to death. Thanks be to God, it is my right brain shrinking and failing, and not my left brain (although I flunked the math, logic, and clock parts of dementia test which should have been left brain!) It would be nice to have test bottles, like you call a buffet to sample, like the pricerier stores have for essential oils. Most of those smell horrible to me, so it was great when I found a testing place, and finally found one that was calming and peaceful and smelled good. Now I wear a necklace pad-thing with the oil in it. Breathe deep when in a car! Breathe deep when around people! The seller did not offer a testing buffett. BTW, the vaping experience didn't phase me either. I lie here in bed and ponder the future, which is a no-no; the shrink says live in the moment (mindfulness and that route, been there, read the books, doesn't work if a person has lost control of the brain's nerves in the communication center!!!!!! - but then, no one understands that unless they have walked a mile in our bodies!!!!) I was told by an exprienced person that the smell and growth and process of the plants are very strong and can be sensed by the well-trained people in my neighborhood (even though all I can smell are the cows in the field next to us!). And, then there is my non-believing never-break-a-law (except speed limits) husband who refuses to even go there and does not know I went to the store and tried. I have read everything to him that has been posted on this site, though, and my state is "considering" putting it on a ballot. I could buy something in a legal state and bring it home, but he is still fearful of anything more than the bottle of oil I bought. I have a sister in a legal state that smokes the straight stuff, but then she doesn't care much about anything. Not much different than me, though, lying in bed all day with no appetite, no passion to travel anymore, no passion to read anymore, no passion to hike anymore, no passion to garden anymore, not even a desire to follow the path of my life-long passion of attending worship services with God's great family. In a old country house in constant need of repair, with 3 bedrooms we do not need, and an acre of ground that is difficult for my husband to take care of with a bum knee, now, but will not sale because it is in such dire need of repairs. We are not into winter and our heat bills, with 1/3 of the house shut off, can be over $400. No more co-pays for special doctors, no more medicines because I am out of the catastrophic zone because no more DMTs, and our income is $6,000 above poverty level for aid (what a joke). But, hey, I still trust God. He knows where I am. As long as I have my husband, I am okay for a few more years, I suppose, God willing. Thanks again for all your advice! May the peace and love of God overshadow you.

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Greetings Judy (much better); the truth is yes the smell on a good strain can be noticed; even in my legal state I had the cops here 2 times in a year, coincidentally right around harvest-time. However the moment I put a simple charcoal filter on the exhaust, the smell was gone and I haven't had complaints in years. This can be grown quite economically if the growing part is all you are dealing with. If there is more then the investment of a few bucks on Amazon will get you a modest tent (needed for light discipline) and exhaust with filter. Once in place, you can tell nothing inside the house or outside the window where the exhaust is. In my case I was already using an exhaust system (duct fan + dryer hose) because of the heat generated by the lights, just to fight temps. Adding the filter was childs play.

One other fundamental fact about buying current CBD products. Cannabis isn't called hemp for no reason (Ky was called the hemp state once, in a bit of irony) but CBD extracts from purely hemp don't work for most. In fact I don't know of anyone who tried it who had it do anything, from pain relief to digestive problems. There is simply something in the CBD thats extracted from cannabis thats not in the stuff from hemp and its NOT the THC. Remember, with CBD, we are referring to a whole family of compounds that vary from strain to strain (and of course, hemp has its own collection as well). Because of the way the laws are set up, the stuff from the Internet will always be hemp-based, so save your money. I too had that hope and purchased samples from various places, 99% pure CBD (which is actually as vague as saying 99% pure medicine), nothing. I can get the stuff from a local dispensary, lab-tested to 69% CBD, 2% THC and whammo, pain recedes, clarity of thought returns, motivation to get up and do things returns (very Type-A dude here). Like night and day.

I guess the last take-away here is that smoking a high-CBD strain in plant form will do zero good too. Its no different than gnawing on tree bark and hoping to get enough acetylsalicylic acid to cure a headache, it would be like eating a 100th of an aspirin and expecting results. So if you try something, make sure its a concentrate or extract (extraction results in concentration so there you go). Also, make note of the strain used to create the concentrate and the levels of things like CBD, THC, and a host of other compounds no one talks about because they are not sexy like THC or CBD. Meaning news-worthy. But they are all playing a part in whats known as the "entourage effect" where the sum or efficacy of a medicine is greater than its component parts. Think caffiene in aspirin or tylenol in Vicodin. We just don know which ones do what yet because research is needed. The best we can do as mere mortals is make note of what works and help ease the pain of others if we are able to. Thats what I am doing. I (sorta) teach how the disabled can do all of this for themselves so they can do their own learning. Can't do it much longer but I will as long as I can.

PS: I have a picture of one of my go-to medicines, an extract of a strain called Ringos Circus. Long medical history behind that strain but it does what I need. Anyhow I am showing the pics to show the lab results on the package. You can see the many other things that are involved with something as simple as a single strain, further supporting my argument that claiming "cannabis can cure X" as the worst kind of ambiguous BS.

The pics on my Google drive, purchased locally recently for 35 bones I think. Lasts me three weeks or more.

drive.google.com/open?id=0B...

drive.google.com/open?id=0B...

Hope they work.

J.

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jeffcobb always hitting wrong key! Demented me. Just got back from another specialist and have another diagnosis - a bacterial infection. More pills! Been told I have low grade bacteria in my system all my life. Use strong antibiotics and got bad thrush burned nerve endings on tongue. I am talking rabbit talk. My version of cannot have a linear conversation as neurologist wrote it on chart! Demented I suppose. Anyway, sent the photo

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Um...I am sorry Judy I am going to be forced to buy a vowel; what photo? In down-phase, very confused...not sure which button you are referring to either....

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@jeffcobb I hit the enter key too soon before message is complete. My right hand sometimes does what it wants to instead of what I am trying to do. My right little finger is always hitting the "enter" key and away it goes! I guess you won't be writing a chapter of that book today. I turned on the back porch light instead of kitchen light today. I think that would qualify for low-phase since the switches are on separate walls. And I must go back and correct every sentence, so we will take one day at a time, one convo at a time. I made the decision to not go to my brother's (even tho only 5 people) for Christmas dinner Saturday - just too low-phase. I like that phrase. We understand each other. More negative results in my health conditions came through new bloodwork. Be at peace today, and have a clearer tomorrow.

Judi

P.S. My husband just told me he had a dream that he was taking a evening stroll and looked at the moon, and Trump was sitting on the moon, and asking him questions and he was embarrassed because he didn't know the answers. He has MCI. But I passed that one on the last trip around the board and didn't even get to collect $200!! In fact, I landed on "in jail" without a "get out of jail free" card. Hope you played monopoly or you won't have a clue what that means! Trying colloidal silver today.

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Judy; in brief...colloidal silver? What for may I ask? I use it in my gardening/breeding activities to force a female plant to grow male parts or more to the point, generate pollen that I can use to impregnate other female plants of my choosing. Spraying 10% colloidal silver directly onto a female "bud" or flower at the earliest stage often turns just that bud male enough to do the job. Old, old trick.

As for Trump, well, to me, that man and all he stands for is a cruel joke on the 17 million of us in America with dementia. Real life is hard enough to figure out whats going on; for the past year I keep asking my wife if we are in some kind of Jabber-wocky land or something, some weird Alice in Wonderland thing. I did my share of hallucinogenics in the 70s and NOTHING like this ever happened on my worst day.

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@jeffcobb LMHO! that is so funny about silver and impregnation! Shows it is powerful stuff. I am taking it for my bronchitis flare up. My daughter is a respiratory therapist (certified and all that, suffering every day with Crohn's Disease, but a single mom) and she knows immediately when my cough is turning to a bad flare-up of my chronic bronchitis. But my primary doc only said "something is rattling around in there but not bad enough for treatment." But in the evenings it gets much worse, the wheezing and coughing, and she believe in colloidal silver for infections. Uses it for pink eye. 20 years ago, I tried it daily for my bacterial firbromyalgia, but didn't help it. So, because I am already on an antibiotic for the other bacterial infection, she reminded me today to start the Silver. It cures her infections, but hasn't stoppped my bronchitis in the past because it's too bad already. I am supposed to use a nebulizer every day for prevention, but never can remember to do that. When I get too tired, the bronchitis and asthma flares up (actually, I have exercise induced asthma, but at this stage in MS, it is fatigue induced asthma, and as you know, fatigue can be the worse symptom of MS, and it is with me, the fatigue worse than the pain and the chronic life-long insomnia.) (I think a parenthesis goes there). I believe it is the Swamp on Capital Hill that has been a cruel joke to Americans for many, many years. But people just sleep on and never even vote for senators or reps. Did you know EVERY one of them are millionaires? How can any of them relate to someone with an annual income of $36,000. They spend that in a week! I get on a soapbox when it comes to all 521 (? is that still right) people controlling this country and all its laws, raking in more millions from the lobbyists for the petroleum and pharmaceutical companies. It is a cruel joke that the American people have caused, simply by not voting during Congressional elections. Okay, another rabbit trail that I get passionate about and a corner of my brain comes to life. But, alas, no one lsitens to me, never did and never will. Congress and big corps control this country, not the stick figure know as POTUS. Just saying. Just talking. Whoops! This is a public forum and I have strayed. This may get deleted by those in control. There is always someone in control. I used to believe I was in control of my life - pretty much set my mind on a goal and finished it or achieved it, no matter the barriers. But NOW I cannot even control my own hand or leg or muscles or nerves or emotions or words! Much less plan any goal, besides praying for a good nights sleep, and that has been elusive all my life. Probably the cause of demyelination, huh??? Oh, for some relief. "When I get to Heaven, I will lay my problems down, pick up my robe, my home, and a crown."

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