Trump and MS

I have noted that the extreme negative attitudes I sometimes hear expressed about living with MS are similar to desperate entreaties about existing with Trump in the White House. Granted, Trump is quite similar to multiple sclerosis. Both are unpredictable and inflict damage with no notice.   Each is painfully arbitrary and serves no good purpose. So far, there does not seem to be much we can do about either.

MS is the product of a sick and damaged brain that can compromise everything we do.   Same with Trump. Now try going to an emergency room and telling doctors Trump is ruining your life. Realistically, there is no potion short of hemlock that can solve the problem for you. Let’s face it. We are screwed. We got it twice and have no redress. Being the south end of a northbound horse is not an impeachable offense.

28 Responses to Trump and MS

  1. Christopher July 23, 2017 at 4:04 pm #

    Veritable ‘prisoner’s dilemma.’ Life is cruel, and up to us to search for moments of grace to exalt us from the communal quagmire.

  2. Christopher July 23, 2017 at 4:24 pm #

    One thing that I’ve found to be important is practicing selflessness. So no matter how I am doing or what I am dealing with I’m always available for anyone who needs to talk about difficulty in their own life. It’s a legacy from my mother.

    Our current president seems to be unaware of the concept, and unfortunately so much potential good work is squandered.

    • Richard Cohen July 25, 2017 at 10:05 am #

      I am with you on selflessness, but a malignant narcissist would not have a clue. A poll yesterday said we are divided in half, 42% for and against impeachment. An impeachable offense would help.

      R.

  3. Dee July 23, 2017 at 6:07 pm #

    I sit in disbelief ______ Trump in office?

    How did this happen?

    It’s kinda like the alternate universe I live in

    after what ms has done over the last 35 years.

    It just plain SUCKS!!!

    Dee/OH

  4. Rita July 23, 2017 at 6:45 pm #

    With so many fires to put out as a result of the cluelessness that has invaded the Whitehouse issues around disease take a seat in the caboose of the crazy train. One distraction after another leaves me weary. I am already fatigued with this disease so I am trying to limit my exposure to the political circus. You would think with what Senator McCain is going through someone would say “wow what If he didn’t have insurance. He may not have discovered the cancer that was lurking. Maybe this healthcare needs more attention than partisan bickering “. Washington is broken so all of us who suffer with any disease have little hope for affordable relief. So we are broken also no matter how much we try to put on the brave face. We are broken. With little hope for a fix under the present administration and Congress. *big sigh*

    • Richard Cohen July 27, 2017 at 9:49 am #

      Correct. The sick and suffering are in the caboose. The Republican leadership does noter a whit about people’s health. They just want to wipe the name Obama from the face of the Earth. Racist? You decide.

      R.

  5. Christopher July 23, 2017 at 8:46 pm #

    It’s not ‘their’ fight, it’s ours.

    • Rita July 24, 2017 at 8:25 am #

      You are right Christopher. It’s our fight and if everyone suffering with chronic illness could see the power we have collectively regardless of race, gender, sexual preference, or religion we would win the fight! Alas rallying around a common denominator within these diverse groups has yet to be achieved. We need to use the “nuclear” option. VOTE THEM OUT!

    • Richard Cohen July 25, 2017 at 10:10 am #

      Members of Congress have perfect, privileged insurance. They cannot relate to thew 117 million of us who live with a chronic illness. That’s about half the population.

      R.

  6. Jane July 24, 2017 at 8:18 am #

    Amen to all of the above.

  7. Gala July 25, 2017 at 10:04 pm #

    I just do not understand. If Trump was elected President, give him opportunity to work! You do not think, that ISIS were growing under Obama? You did not see violence from illegals? You did not feel, that most refuges in Europe young 18-30 men, who assault women frequently? Compare Trump to MS it is nonsense. Sorry. Trump is not perfect men and his attitudes sometimes disgusting, but his main point right! He was entrepreneur, and his behavior grow from it. Just deal with it and give him time.

    • Richard Cohen July 27, 2017 at 9:52 am #

      Or not fair to MS.

  8. Andrew July 26, 2017 at 5:05 am #

    Marketing an Edsel so certain consumers believe it will be the greatest automobile they ever drove, will leave a lot of those consumers determined to refuse to recognize it should never have been allowed on the highway. Selling voters on excellent business acumen when overlooking the bankruptcies that screwed over so many workers, and ignored contractual obligations with indifference knowing that your lawyers can make suing you too prohibitive for the plaintiff to afford the legal pursuit, is immoral, unethical, and not “just good business practices.” Having no experience in public service is apparently not helped by a staff that may know what to do, if you refuse to listen to anyones advice because your own mental illness has you believing you are so superior while your attention span is so limited that you cannot read and process complex issues, means you are not qualified to be an executive in one of the most important jobs in the world. I hoped Mr. T would hire competent people to do the many jobs in the many cabinets, etc. but that hope was shattered quickly. Gala, asking me to give him a chance is like asking me to continue to take a medication that is causing severe adverse reactions and making my illness worse than it was before trying the suggested “treatment.” I see behaviors and personality characteristics that suggest serious mental health problems (yes, I am a qualified mental health professional) and possibly the onset of Alzheimer’s, which his father had before the age of 70–Trump’s current age. I get it that supporters want desperately to believe what they were told/sold. But, before changing my college education focus and entering the mental health field, I received scholarships to attend two campaign management schools. I was trained in campaign management along with Karl Rove and Lee Atwater. What I learned, experienced, and observed turned me into a committed “not-ever-again-republican.” Then Richard Nixon and Watergate reinforced the wisdom of my changed political beliefs to recognize I am actually a progressive liberal. So don’t bother trying to counter arguments with sound bites from Fox, Limbaugh, Breitbart, et al. I have pity, not respect, for people who believe Trump to be capable of doing the job for which he was elected by the minority of voters.

    • Rita July 26, 2017 at 12:19 pm #

      Andrew your Trump analogy about continuing to take medicine that is causing horrific side effects because the prescriber said to “give it time” is perfect! That was my experience with Ampyra. After I was hospitalized I realized, like many MS drugs being pushed by Big Pharm, it wasn’t the miracle MS drug it was touted to be! Caveat Emptor Trump voters! I also think he is in the beginning stage of dementia by his behavior.

  9. Christopher July 26, 2017 at 6:06 am #

    This man has had many opportunities, including starting an intelligent dialogue with the country. But so far all he has done is complain, blame other people for everything that’s wrong, and ridicule and insult others. He has done everything else except work, and he is woefully inept at the job of leading a nation. It’s embarrassing and perilous behavior. How long should we give him to stop screwing up and acting like a jerk? The job of President of the United States is a huge responsibility, not a place to gain work experience… it’s not an entry level position where we should just patiently wait until this man gets it right. You wouldn’t go to a surgeon without experience, or get on an airplane with an inexperienced pilot, and give him or her time to get it right and “just deal with it.” The President is acting in his own interest without thinking how his words and actions have wide reaching consequences, and that is dangerous. If he was responsible for only himself then no big deal, but he is responsible for an entire nation. We have made a great mistake in choosing this man for the job and we are paying for it dearly.

  10. Dale July 26, 2017 at 3:35 pm #

    Wow, can we go back a blog?

    Sad.

  11. Gala July 26, 2017 at 10:42 pm #

    Andrew, I am also skeptical to drugs, but I gave it chance and try. Dr. Krauthammer was also democrat, before became republican. I lived in socialistic country for 30 years and I really worried , where America going, when young generation demand to have everything without any obligation. You have point, that Karl Rowe was able to do G. W.B president, it means you got good training… Trump does not have staff, because his appointees not approved by Senate/Congress.

  12. Andrew July 28, 2017 at 3:32 am #

    Thank you, Rita, for your comments. Now for irony. Training in substance abuse knowledge, treatment, and research taught me that how we each respond to any drug/psychoactive substance is rooted in the drug, dose, frequency and our individual body chemistry. I fully recognize that certain medications that create horrible adverse reactions for some, actually significantly help others. There are drugs that I list as being allergic to on my medical forms. But I began Ampyra almost a year ago and it has been noticeably helpful to me. My leg strength has improved. Within the first month, my legs ceased what I called a “buzzy” feeling like low grade electrical charges. I can walk much further and with a quicker, stable gait. I have much less difficulty getting up and down from chairs. I am pleased I am taking it, for now. The literature warnings made me very apprehensive and cautious and still do. But for now, it hasn’t been a miracle but it has been a noticeable improvement. I have been on the same disease modifying medication for fourteen years with only minor side effects and negative reactions. A neighbor of mine who has MS, tried the same drug and it made her profoundly depressed with suicidal thoughts. I’ve been told that most drugs with serious adverse reaction potential usually happen within the first six months, maybe twelve. I would like to hear the most noticeable adverse reactions you had and how long it took for them to go away. I have had the odd effect of, on multiple occasions, leaving the house and forgetting my cane–which I have carried for about ten years, starting out because I never knew when out of the blue, I would get a severe leg spasm attack and needed something to lean on. I have gone from several spasm attacks a day to several a month and now cannot remember how long ago I last had them. I don’t know if Ampyra has done this or the powerful placebo effect, either way, I am grateful. I have only had one fall in the past year and that was bizarrely due to catching my toe on my folded and parked rollator/walker I forgot was up against a wall when I turned a corner. (footnote: thank you US Senate for not repealing the ACA. For now, I don’t have to worry about loosing insurance through my wife’s employer, supplemented by my Medicare. If it weren’t for this coverage, It would be a struggle to afford any of the MS medications I take.)

  13. Rita July 28, 2017 at 5:40 pm #

    Hi Andrew. I know others who have benefited from Ampyra. It just wasn’t for me. My symptoms increased and I ended up in the hospital. That was a couple years ago. I also tried it about 10 years ago when I was diagnosed RRMS and had good results but then I went with Tysabri stopped Ampyra. Next Tysabri was taken off the market and I switched to injectable. I had a good job with good benefits so I was lucky. Many depend on Medicare, Medicaid and the ACA to get these medications so I too am glad repeal failed. Anyhow, my point to this post was that everything that sounds good needs further investigation before believing the “fix” whether it’s medication or president. 🙂

  14. Andrew July 29, 2017 at 2:50 am #

    ditto, Rita.

  15. Christopher August 2, 2017 at 2:07 pm #

    I haven’t written personally in a long time–MS is very cruel. I just recently finished a blog post about the vagaries of living with progressive MS. You can read it if you like. It’s not easy to read, so I won’t be offended if anyone decides not to if they are easily upset. I don’t profess to being a good writer, so the post is pretty long. There is a blogger in New York, Marc Stecker of the Wheelchair Kamikazee blog, who is a much more eloquent writer about ProgMS. My style is more guerrilla writing in the trenches than cerebral. I’m not sure why I wanted to share, but I believe I should in expanding a more complete and diverse view of this awful condition. And sometimes that is more important to get past fear of exposure.

    I am grateful to Richard for letting all of us converse and share here, and I’m grateful for all of you sharing your experiences with humility, respect, humor and grace.

    https://www.edgeofthedivingboard.com/single-post/2017/07/31/The-truth-about-how-to-survive

  16. Jan August 2, 2017 at 10:43 pm #

    Anecdote lady here, progressing with my one-handed keyboard typing speed after two weeks with a left wrist cast/two fractures that have imprisoned my pinkie and ring finger in a more claustrophobic way than an MRI tube and makes typing with that hand impractical. (Wish one-handed typing is all that has been progressing. At least the cognitive is just fine). The cast comes off tomorrow.

    All those years of skating and no breaks…I way overdid housework, my ankles caved, and I kind of slammed onto the sofa–the sofa, ha!! Grocery store and Walmart workers have been ultra kind in bringing mart carts to me at my car. I can drive fine, but “walking” is precarious and I did not want to risk anything with a cast.

    Today, someone I know with MS mentioned a friend with an electric scooter she tried and liked for its height and speed. Weighs 70#. I have an old Honda CRV but neither van nor lift and have zero plans for either. Need to investigate weight if taken apart. http://www.emutrikes.com/theemutrike174.html

    Anyone have one of those? Your thoughts?

    • Rita August 3, 2017 at 8:51 pm #

      Jan, my family just bought me a Go-Go scooter that was used. It was about $300 and good shape. Breaks down into 4 parts with the heaviest piece weighing about 27lbs. After several bad falls within a 6 month period it’s my backup to my rollater when my legs aren’t cooperating which has been happening more frequently so they were concerned. Especially after it happened during there visit. I’m not ready to go full Go-Go yet but it’s nice to have it just in case.

  17. Jan August 2, 2017 at 11:28 pm #

    Oh, Christopher, I just hit your link and read all your thoughts. I am so very sorry. Yes, it all stinks, greatly. And you have been enduring much, so very much.

    Time to forgive your messy place and cut you slack on that one (and for you to do the same for yourself). You see, there is so much more to any one person than any tasks. Also, although a Christian, I have come more to terms that there is just stuff that I will not understand here, other than that we live in an imperfect world, as we, too, are so. And that life is just unfair. I used to live and do, but now I “think” about life so much more—its issues, its meaning,and its relative brevity.

    In the spring, we drove 30 hours RT to attend the memorial service of a man from our wedding party long ago who passed from ALS at age 55. I do not mention that again to say that others have this or that or to say something like, “Think of what you can do, not what you can’t.” It just isn’t that simple. Nor is it easy to be the one to endure such hard stuff as you had detailed.

    Personally, as nasty as both can be, I myself think that the emotional wreaks even more havoc than the physical.

    Christopher, kudos to you for getting that out and for expressing your feelings. So wish I could impart encouragement of value to you. Instead, perhaps think of the thoughtful impact you yourself have made. And the many affirming comments Richard has made in reply to you in knowing you have helped others reading here. Not that it all makes it better, but that you yourself have made an impact through all this ick.

  18. Christopher August 3, 2017 at 7:54 pm #

    Thank you, Jan. Yes… so unfair. And with that brevity it compounds the hurt and fear knowing that this is all we’ll ever have–no mulligans. So I keep struggling to find things to hold onto to anchor myself for a moment in some comfort, and it’s so elusive. That’s what I have been constantly searching for (as well as a cure) to share with everyone, and have found paltry little. Really hard to find a silver lining to dark clouds, and ruthless MS symptoms that consume hours like caramel corn. It’s all of you folks who have the best ideas and advice, and have kept me going. If I hadn’t progressed so fast in such a short time it might be much different. But the disease severely kicked my ass, and I’m still reeling from it. Now the whole healthcare fiasco is lurking like a psychotic grizzly bear in the background. Like I said in the blog post, only thing to do is “keep moving forward.”

    As imperfect as that may be.

  19. Rita August 3, 2017 at 10:30 pm #

    Christopher I am glad you are finding new ways to cope with this dreaded disease. It is not easy to find light when it seems like the darkness of each MS symptom gradually envelops and overwhelms you. I read your blog and can definitely relate to the helplessness one feels as you know your falling and there is nothing you can do to stop it and all you can say is “Damn how the hell will I get up” I have spent time on the floor trying to figure out MaCGyver maneuvers to get myself upright and hoping I could do it before I needed to pee. Reading about your experience brought it all back and renewed my fear of what may come. I enjoy reading your responses and admire and appreciate the research you share. Keep looking for the light in the darkness and exercise that thumb because you give me my light 🙂

  20. Jan August 3, 2017 at 11:03 pm #

    Go-Go scooter, or Go-Go boots? (Just kidding–thanks for your help, Rita!)

    You know, Christopher, my thinking too much can be my own personal worst enemy (and likely likely my husband’s realistic thinking is what nets the possible reality that most concerns him–hard to see that in his eyes). What I have endured, and do endure, would likely make many weak at the knees. (Ironic choice of words there, ha).

    So it works best for me if I just don’t think too much or too deeply about it. I mean, I do need to be realistic and responsible in my daily approaches (the cast, now splint, forced me to investigate shower benches, and the third I brought home is a keeper. Needed it for the cast; continued relief for the MS).

    Next on the agenda is that motorized scooter. While still at times unbelievable, it will provide freedom. And the wrist fractures have inspired me to sell my mostly unused skates–although two have suggested taking my rollator out onto the ice, today’s PT agreed that would be a bad idea: one fall, and possibly more breaks: foolish at this point. (So, I will continue to resorting to belting out loud sing a-longs to Huey Lewis and Billy Idol when alone). If you know the sport, the boots never even had the chance to get a usage crinkle.

    RE: “…it compounds the hurt and fear KNOWING that this is all we’ll ever have…” TOTALLY, so I try hard to distract and not go there. For me, it means part-time copywriting work, my faith in Christ (and that can seem tough at times), being a friend to another in some way of value. For others, something else: even a smile toward a stranger, some humor when humor to many would not seem possible, a blog reply to help another. Things that may seem small often aren’t.

    Worry itself for an unpredictable future with worsening issues only makes me feel worse. So I plow ahead and do as I am able, typically with a genuine smile and positive attitude. A key there is, “as able,” not, “as I think I should be able to do.” I’m trying to work better on that one (it’s not easy for “stubborn Fearless Fosdick,” as mom used to call me).

    I think of the late Barry, with ALS–he was working with some college using eye-tracking software to type. (And here I was, just managing my keyboard with one hand and having to look. For him, looking meant words, communication. The new splint allows typing, but I cannot fully use that hand normally yet). So, I think of perspective. But make no mistake–when perspective is really rough, it’s just really rough and not so easy to find inspiration. It’s also when other people matter; when faith matters (even as small as a mustard seed). And I’ve shed my share of distraught tears, usually privately.

    And no mulligans, that’s right. Come to think of it, I don’t golf anyway.

  21. Jan August 3, 2017 at 11:09 pm #

    Hate to add after that fun ending, but I’d be totally remiss if I did not also mention my husband, family, and friends as inspiration to forge on.