Now-and-then we hear that someone “died from MS.” I recently heard it from a woman with whom I was talking on a manufacturer’s product hot-line. It was just chit-chat and of course, I did not challenge her statement but realize it is pervasive.
Hearing people do not die from MS is a relief but it understandably tends to downplay the seriousness of the disease.
Although it is a relief to know the truth about it NOT causing death, the impact is, in fact, unimaginably negative. The vast majority of people have no idea what MS is and does to a person. Too often, those who know it does not cause death believe it is “easily manageable” and curable. The answers are “sometimes” and “no.”
Few realize its potential for debilitating cognitive and physical outcomes. It is equally important to understand MS can have an impact that ranges from profound to hardly any impact at all. Not everyone with MS suffers from a disabling effect. However, MS generally DOES impact quality of life.
I “think” no doctor ever tells a patient they could die from MS. Conversely they do not imply it could not cause a complication from which they could die. [See “MS Connection” blog entry Death from Complications.]
Overall, the perception of MS falls into the realm of “well, you look good!” Appearances can be deceiving.
Yes, MS often changes what we can and cannot do but “all is not lost.” It is incumbent on us to exploit the things we CAN DO and not limit ourselves unnecessarily. Case-in-point are the possibilities presented by Can Do MS (formerly the Jimmy Huega Center for Multiple Sclerosis.) Its stated purpose: “promoting the culture and belief that everyone living with MS has the power to live full lives.”
It is the opening of Act III of William Shakespeare’s play, Hamlet. Admittedly, it is taking dubious license to reapply this to the plight of multiple sclerosis, but it would seem “nobler” to take the path toward positive thinking rather than “suffer the slings and arrows” of MS.
After being told I “might” have MS, I adopted an attitude that the less I found out about it, the less likely I was to exhibit the symptoms. In other words, reading about the symptoms might cause me to imagine in a psychosomatic way that some ache or pain was MS when I was actually relatively healthy. I subscribed to the mantra “not everything is caused by MS, you know.” I believed knowledge – in this case – was counterproductive. Although I learned some things about MS, I generally avoided reading about it: the fear of creating mock symptoms was too great.
On the other hand, if something odd (healthwise) started to manifest itself in suspicious ways, I would see my doctor to determine if it was MS or something unrelated. Interestingly, the current lack of knowledge about MS means medical professionals most often investigate and eliminate other causes before ascribing the symptom to MS.
Today, I am not so sure “ignorance is bliss” as “tis folly to be wise” 1 when that mindset seems to be counterproductive regarding multiple sclerosis; if not most things in life.
Eventually, I had to stop working after becoming acutely impacted by MS. It was then I began voraciously learning more about the disease. I soon found I could not glean enough information to satisfy my desire to know. MS controlled me. It was time to start manipulating MS.
It saddened me that I could no longer do the work I loved. Heck, I could not work at all. However, I could keep mentally active and find a purpose in life, if I redefined myself. So, I did. It was actually not conscious other than my desire to just keep moving forward. (Ironically, MS can make even rolling over in bed difficult!)
I am uncertain of the day I starting using the tools that remained in my bag but I was definitely aggressive about it. I became a voice: an advocate; an activist for those impacted by MS.
My actions ranged from organizing and producing a conference for men with MS to simple one-on-one discussions about MS with others who had MS to actively seeking financial relief in an area not typically (or easily) recognized as a health accommodation: the Utilities’ cost of air conditioning.
Looking back, I unknowingly decided “to be.” I wanted to do all I could to keep from being the invalid. Yes: both meanings.
The attitude is healthy and all of us – MS afflicted or not – are better off using the abilities we have rather than bemoan the abilities we lost. Excuses for not doing a thing is okay but for doing nothing . . . well, that is what gave the word “excuse” such a bad reputation.
There is “a lot of negative” about having multiple sclerosis. But is there anything positive? Conventional wisdom says “no.” Then there is the Ron Popeil sales pitch “but wait, there’s more!”1
Perhaps deep down, most people are inclined to admit life is scary, while on the surface they move forward and down-play the scary and not-so-pleasant facts.
Although trite, it still holds true that life offers no guarantees other than death and taxes – even for billionaires. So, what parts of life can we manipulate to exploit a positive?
Case in point: Steve Jobs was not done living; yet “his time had come.” Evidently, Jobs chose a risky route of alternative and natural treatment for pancreatic cancer that, sadly, did not prove effective.2 Despite his illness and up to the time of his death, he skilfully manipulated outcomes within his control through his determination to keep developing his ideas and Apple’s products.
You know the adage, “when life gives you lemons, make lemonade.” If you have MS, you have a boat load of lemons! To make lemonade, you need sugar. When it comes to MS, that “sugar” is finding and making use of the most effective treatment or symptom management for you. However, to make an Arnold Palmer you also need iced tea. In regard to MS, the “iced tea” is an attitude of and belief in hope. A gratifying combination and a form of self-realization.
The legendary golfer, Arnold Palmer, was interviewed this past August by Golf Digest Magazine’s Dave Shedloski.3 During it, “The seven-time major championship winner unzipped his tan Ryder Cup jacket and pulled back his white shirt. Under clear medical tape there was a bulge on the left side of his chest, high up, just under his collarbone and near his shoulder — far higher than for most anyone else who receives a pacemaker.
That’s right. It was put there so it wouldn’t interfere with his golf swing.”
To believe nothing can be done to work around the impacts of MS amounts to a foolish capitulation. It would mean giving in and relinquishing all control. MS changes some or most of what we used to do but in reality we can still do some things we love. The key is often doing things in a different way. In fact, actively searching for and finding how to do as much as possible can, in itself, bring joy back into your life.
As in the iconic line from the 1985 dance single by Jocelyn Brown,“Love’s Gonna Get You;” you’ve“got the power!” Contrary to popular belief, you do not need anyone to “empower” you. In fact, finding how to do as much as possible can bring joy back into your life.
You do not believe it? Did you ever wonder how Stephen Hawking has dealt with ALS?4
“Geographic” note: Ironically, the idea and name for the iced tea and lemonade drink is believed to have come from a Denver area country club and Arnold Palmer himself.
The following is NOT a recommendation to “heal thyself” and is written as an imagined correspondence from one person with MS to another with MS. It is the meshing of real experience with “what could be or have been:”
Wow. Your swallowing issues sound similar to mine and seem haphazard without an obvious trigger. Interesting.
My swallowing problem can be excruciating and take me to my knees. Sometimes, swallowing is absolutely normal. Sometimes, swallowing makes me believe it is about to become an excruciating experience but nothing happens beyond that initial forewarning sensation. It annoys me that quite often, two months can go by without even a hint of a swallowing problem. Still, it can happen more than once in a day! Frustratingly, it can crop up when I am eating, taking pills, simply drinking water, or (although very rare) even from the normal function of swallowing saliva! It is neither consistent nor predictable.
Seven years ago, after briefly reading my email, I had gone to the kitchen and taken one of my OTC supplements (pill) but had difficulty swallowing it: “Difficulty” as in racking pain in the area between my sternum and neck. The pill would just not go down. The pain was so agonizing that I dropped to my knees, bent forward over the arm of the couch, and broke into an intense cold sweat.
After a few minutes, it went away.
I felt nauseous when I was finally able to stand but fought it off without up-chucking. Curiously, at that point my saliva began flowing like a leaky faucet so, I uncontrollably drooled and spit into the kitchen sink for a little while. My body slowly calmed down but I was physically exhausted.
Later that evening, after lying in bed for an hour, I suddenly remembered I had forgotten to take my multivitamin! As a consequence of my “episode,” I had completely forgotten about taking it. I got out of bed and took it but this time I had no difficulty swallowing it. Talk about being pleasantly surprised and relieved!
The next morning I was able to get an appointment with our Family Doctor who saw me that same day. He found nothing when he examined me but referred me to a gastroenterologist whom I saw the next week. After that examination, I was promptly scheduled for my first Esophagogastroduodenoscopy (EGD): a procedure used to diagnose and treat problems in the upper gastrointestinal (UGI) tract. During the EGD, a narrowing (stricture) of the esophagus was discovered, so an esophageal dilation (throat stretching) was performed. When I recovered I was given a prescription for lansoprazole (Previcid.) This “was indicated” due to the general relationship of Gastroesophageal Reflux Disease (GERD) to the swallowing problems they typically see. In other words, he had no way to determine if my swallowing problem was caused by MS. For a while afterward I did not experience obvious swallowing issues, however it was not long before these problems returned. Within a few months the gastroenterologist determined I should have another EGD and “throat stretching,” so I dutifully subjected myself to it once more. Again, there were no identifiable changes in my symptoms.
I found it extremely irritating that from the very beginning I had vehemently protested the diagnosis of GERD. For crying out loud, I was known for having a cast iron stomach! I had never experienced acid reflux or heart burn and on several occasions had been known to actually eat ice cream while drinking a beer without consequence. This was all to no avail: the gastroenterologists kept insisting I probably had “Silent GERD” so I just was not realizing that damage was probably occurring.
In spite of my protests, I followed the doctors’ counsel and treatments. After more than a year of no impact the gastroenterologists capitulated to my plea and consented to allow me to stop taking the acid reflux medicine – only because there was never conclusive evidence of GERD.
There has never been a doubt in my mind about the relationship of my swallowing problem to multiple sclerosis. It seems to me that too many of the medical professionals I have seen are obsessed with disproving the relationship of MS to many of the symptoms I exhibit. Why is it I too often I find myself with no explanation of my symptoms and the recipient of the glib and dismissive response “you know, not everything is caused by MS?” Well, duh! Are they actually willing to be an obstacle when it comes to diagnosing the source? Or am I simply being too impatient?
I should not be surprised: Once-upon-a-time the conventional wisdom was that stress did not cause MS exacerbations. It was finally proven that stress plays an undeniable role in MS exacerbations.
I suppose in the absence of a test to establish a relationship between a health problem and MS, there is an irresistible compulsion to rule out everything else often by way of expensive, somewhat risky, and almost always fruitless and tiresome medical procedures and treatments.
It seems so trite but true: I know my body and perhaps have a better recognition of some things than the medical professionals who too often, almost rudely, indicate they do not place much value on the patient’s knowledge and awareness. MERCIFULLY, the doctor who performed my third and most recent EGD (this year), essentially admitted that to me! If nothing else, he demonstrated my opinion had value! I was taken aback and enormously pleased to the point of being giddy. I fell all over myself thanking him and telling him how much I respected his acknowledgement and appreciated his care.
At one time I thought it was reasonable to believe symptoms were easily identified as MS related or not. Today I know better. With so little known about multiple sclerosis, researchers, doctors, and patients are all flailing about searching for the cause and remedies. It is undeniable that multiple sclerosis is not yet understood and probable that its many impacts will remain an enigma through our lifetimes.
It would be reasonable to presume I am depressed or incensed by all this but I am not. However it has instilled in me the importance of being my own advocate!
Mostly, I have discovered it remains important to “keep your chin up!” It helps you swallow.
We have had some good times together over the past 41 years, but now what you are doing to me is not acceptable. We did fight off the chicken pox, some sore throats along the way and even hepatitis in college. However from the best guess we can make around 8 years ago something went terribly wrong and you started attacking me. I knew something was not right, and went to the doctor only to be misdiagnosed for a number of years.
Now we know the problem, and are going to put an end to it for good. I know as I go through this there will be terrible times and I will feel miserable. Each time I reach that point however, I will be smiling inside, knowing it’s directed at you and your time with me is extremely limited. Enjoy your last couple of days as these doctors drop a nuclear bomb on you. You took precious time away from my family and even knocked me off the golf course! I will be extremely happy once you’re gone.
The article explains: “In HSCT, these stem cells (derived from a person’s own bone marrow or blood) are stored, and the rest of the individual’s immune cells are depleted by chemotherapy or radiation or both. Then the stored stem cells are reintroduced usually by infusion into the vein. The new stem cells migrate to the bone marrow and over time produce new cells. Eventually they repopulate the body with immune cells. The goal of this currently experimental procedure is that the new immune cells will no longer attack myelin or other brain tissue, providing the person, what is hoped to be, a completely new immune system.”
The “Catch-22” Many diseases/conditions cause a need to sit or lie down either primarily or often. Multiple sclerosis is just one of the many. Frustratingly, sitting longer than ½ hour can be unbearable, too. Standing can be difficult because of balance issues.
Per the August 19, 2014, article in Grandparents.com, The Risks of Sitting Too Much (click here), “Research shows logging long hours on the couch or behind a desk raises the risk of chronic health ills like heart disease, diabetes, and cancer, along with premature death – even among those who exercise regularly.” The article continued by citing an unnamed Australian study that purportedly found that “people who sat 11 hours or more a day had a 40 percent increased risk of dying over the next three years compared to those who sat for fewer than four hours a day.” If the intent is to frighten, that goal has been achieved!
Regardless of the accuracy of this finding, the primary dilemma for each of us with MS is what kind of exercise can I actually do?!
Some Options A National MS Society web article on exercise (click here) asserts “in addition to being essential to general health and well-being, exercise is helpful in managing many MS symptoms.” It suggests Yoga (click here) or Adaptive Tai Chi (click here) as potential exercise programs.
Yoga may require too much physical dexterity but Adaptive Tai Chi can be accomplished sitting in a chair. However, there are a significant number of people for whom these programs are so challenging that these are impossible or dangerous to even attempt.
What about exercising in water? (Click here.) “The unique qualities of water provide exceptional benefits to people with MS. Water helps people with MS move in ways they may not be able to on land.”
More Check out the interview with Dr. Jeff Hebert of the Rocky Mountain MS Center at Anschutz Medical Campus. (Click here.)
Do Not Neglect Exercise your mind. MS caused cognition and vision problems can make exercising your mind extremely difficult. If able, read. There are those who believe programs such as Lumosity are beneficial, however I found Wii Sports VERY helpful. It allows the user to use broad range of motion or slightly move the hand and wrist in order to play.
When I have the physical capacity/stamina, Wii is fantastic in its ability to help exercise and gauge eye-hand coordination and mental processing. The difference from Lumosity is that Wii Sports is fun and engaging. I cheated on many of the Lumosity exercises just to complete those and still got 50% correct. hmmmm
The Bottom Line It is vital to keep your mind and body active to the level at which you are capable. Do something. It is amazing what is actually possible and how much better you feel physically and mentally.
This blog posting only hints at the issue and is intended to encourage the assessment of your need and ability and further explore the options: regardless of your current health.
Are You a Doctor?! For too many years after I was first diagnosed with possible (yes, possible) multiple sclerosis, I was emphatically told numerous times that stress did not cause an exacerbation.
Other than the impact stress has on our general health over time, I was led to believe stress had absolutely no impact on MS. This opinion has changed.
In the June 24, 2014, NMSS on-line publication regarding a “Joint Medical Meeting (CMSC/ACTRIMS),” is an article, Mind Over MS, by Carrie L. Sammarco and colleagues at NYU Langone Medical Center in New York. It “reported very early results from The Mindfulness in MS program, a weekly program designed to reduce stress and enhance quality of life in 10 people with MS through mindfulness-based techniques, such as body awareness, breathing, progressive relaxation, meditation, visualization, and hypnosis.”
Finally some recognition of the potential for stress to negatively impact the progression of multiple sclerosis! Is this a “duh” moment?
The Lab Rat Roared It has been demonstrated to me over and over and over for years that some medical professionals (MPs) are bad at listening and have a tendency to view their MS patients as little more than lab rats. We who suffer the impacts of MS absolutely know our bodies better than anyone else. More often than not, we are surprisingly capable of making a correct albeit sheepish determination about a symptom’s possible cause: especially when there is a strong potential for it being caused by MS.
This is not to say we are always right, but my anecdotal evidence has proven this to be true more often than not.
Who has not heard a neurologist or other MP say something akin to “you know, not everything is caused by MS:” A not-so-subtle admonition and dismissal after you just told the MP you believe it is MS related. These are the highly educated medical “Board Certified” professionals and you are just the patient. Therefore, what a patient suggests as a cause is obviously flawed. The mocking disdain and dismissive attitude is more common than most people would like to believe. We ‘laypeople’ “are not sufficiently trained to make a credible suggestion about a possible cause of a medical concern.”
However, so little was and is known about the disease that the MPs — in what amounts to a waste of time and money — treat the pain in your big toe for some cause/malady other than MS. The next thing you know, you have gone through a couple of weeks and two hypodermic injections into your big toe to treat gout. The MP’s justification? “We have to rule out the other possibilities.” (An actual example situation.) Could not they first rule out MS as the cause? No. (Refer to the 10 words in this paragraph.)
Consequently, we generally accept the therapy an MP prescribes: even when it might do absolutely nothing to relieve or eliminate the symptom. However the symptom gradually subsides. – hmmm . . . perhaps it is MS?
Just Get Out
So, back to the stress topic . . . A tenet of the 70/Four70 MS Men’s Group is the belief in the need to maintain social contact. i.e. To regularly get out of the house to be with other people. Specifically, we believe that men with MS need to get and benefit from getting together with other men with MS.
Per the Betty Hardwick Center, “. . . humans are inherently social beings. Socialization, or enjoying other people’s company and maintaining a sense of connectedness to others, is an important component of stress reduction.” As a small group of men, this benefit is even more likely.
The Betty Hardwick Center article continues: “. . . quality, rather than quantity counts when it comes to interpersonal relationships. In other words, surrounding yourself with a large number of people who you don’t know very well is less effective than having 2 or 3 close confidants when it comes to successfully reducing stress.” Providing an environment of confidentiality, understanding, and frank discussion fosters the benefit.
Regularly meeting with other men with MS encourages the development of trust. Plus, a man sometimes feels more comfortable discussing some symptoms and issues with another man with MS before discussing it with a medical professional or even a member of his family. Describing a symptom to a medical professional is understandably met by a clinician’s viewpoint rather than a true understanding. Moreover, when describing a symptom to a family member or friend it is common to be met with the response “oh, I have that sometimes” when, in fact, they have never had what you are trying to describe. To complicate things, you also cannot find the right words to accurately describe the symptom!
The bottom line: meeting with other men with multiple sclerosis in a comfortable setting is of immeasurable benefit. It is a high priority stress relieving activity and should be an integral component of your healthcare.
It is important, if not ironic, for people suffering from MS related cognitive issues to remain aware that not everyone has their best interests in mind. This is true for all people in general. However, the very nature of MS probably dictates a need for some level of help from others. Understandably worrisome but does worry combined with MS naturally lead to depression?
As presented by Neil Cavuto on 16 June 2014, “One out of three of us is bummed-out and do [sic] not think things will get better.” Granted, he was not speaking specifically about multiple sclerosis (even given the fact he has MS) but it certainly applies. He was talking about all people all over the world and it naturally made me wonder about those of us with multiple sclerosis. Are we more or just as or less depressed (“bummed out”) than the general population?
According to Allison Shadday, LCSW, “Over the course of a lifetime, the prevalence of experiencing a depressive disorder may reach to nearly one in five for women, and one in eight for men – and some sources give even higher estimates.
Depression related to a chronic condition is sadly considered normal and seemingly accepted as inevitable.
It is probable that many MS patients when asked by their neurologist if they were depressed have said, “Heck yes! I have MS! Am I depressed every minute or even most of the time? No. But I am depressed for minutes or even an entire day; you know, for short periods.”
The bigger problem is lasting depression. “Facing a chronic illness naturally leads to feelings of uncertainty, grief, sadness, anger or fear. But when these feelings continue and disrupt quality of life and day-to-day functioning, depression may be the culprit.” [Source: National Alliance on Mental Illness fact sheet “Depression and Chronic Illness.”] This is one of the major reasons why it is important for us men with MS to get out of the house and socialize with other men: other men with MS. Men who actually know what we are going through without hearing us say much at all because they are experiencing or have experienced it.
Yes, 70/Four70 IS a support group but it, along with the Denver MS Men’s Group, is not a run-of-the-mill support group. We males do not deal with our MS as do females. That is neither positive nor negative; rather it is a reality. The male approach is hard to describe, but as one of our members succinctly put it: “No whining.”
As stated in the immediately preceding posting, “If nothing else, men do not like to show vulnerability or be perceived as weak.” But we do “want to know ‘what can be done . . .’”
Imagine: an adult with multiple sclerosis (MS) wallowing in self-pity and worry.
It is easy to fall prey to this state of mind. It develops so quickly you might not recognize the invasion of shameless insensitivity to the needs and concerns of partners, spouses, children and/or grandchildren, siblings, and parents: Insensitive and self-absorbed but understandable. “HEY! I’m the one with the health issue!”
Who does not believe that everyone in the family would be better-off adjusting life around the impacts of MS? It sounds reasonable but most often extremely difficult to accomplish.
Physiological differences between men and women can greatly influence the efficacy of a therapy. Women and men often perceive the challenges and workarounds differently.1. Men can be particularly obstinate when it comes to their affliction. Can it be that women do not have this resistance?
A man with multiple sclerosis might be willing to talk about the available programs for financial and physical assistance but avoids talking about the emotional toll.
Is there also a hidden impact influenced by the fact there are two to three times more women with MS than men? [NMSS]
For many men, exposing their emotions is too touchy-feely. Instead, men pursue (make it more important to know) the most appropriate medication(s), physical aid products, treatments and services available to help manage their MS. Anyone spending any time at all around men who have MS would not be surprised to hear a man with MS say he really does not need to be in a support group and “the one time [he] went, it was just a bunch of whining:” Something distasteful to most people but particularly repulsive to men.
Vanquishing multiple sclerosis is a campaign with two fronts:
Advancing MS research.
Most people with MS want to know about the current FDA approved therapies: What are the positive and negative impacts? We also want to know about the cutting edge therapies and natural/organic based (homeopathic) therapies.
Effectively helping individuals handle the daily struggles of MS.
We want a cure but in the meantime, we want to cope with MS the best we can.
The mission of MS non-profits is generally focused on research and addressing the challenges of living with MS:
“. . . by funding cutting-edge research, driving change through advocacy, facilitating professional education, and providing programs and services that help people with MS and their families move their lives forward.” [NMSS]
“. . . to improve the lives of those who live with multiple sclerosis and their families through care, education, support, and research.” [RMMS Center]
Really? I need permission?
The word “empowerment” is mercifully absent from these mission statements but pervasive in the mission statements and TV commercials of some non-profits.
To many, if not most, males, empowerment implies weakness. It is the equivalent of being given “permission.” If power needs to be given, it can be taken away. I do not know many — okay, any — men who believe they need to wait to be given power and most would go into battle with anyone who tries to take away power!
If nothing else, men do not like to show vulnerability or be perceived as weak.
Nonetheless and to the point; male or female, most people with MS impatiently want to know “what can be done for me today?How do I change the light bulb in my ceiling fixture?!”
Yes, men with MS, leave your house. Get out and about and mingle with other men with MS. It is GOOD camaraderie and pretty darned positive for your spouse or significant other, too!
There is research that postulates social isolation contributes to a condition of ongoing stress and can lead to serious health problems.
Quoting from an on-line article inMy Optimum Health “It takes effort to stay connected. Between kids and work and everything else, people are busy. Sometimes it may feel like it’s just too hard to stay in touch. But if you can find the time and energy, you may be pleasantly surprised at how fulfilling it can be. Having a few close, mutually supportive friends can be a key to staying healthy. Not only is having friends more fun, these relationships may also help you:
Stay mentally sharp
Reach your goals
Develop a more active lifestyle
Have better health outcomes
Enhance your sense of well-being and happiness
Lengthen your lifespan”
So ignore the inclination to use the excuse you “don’t have the energy” or “its too far” or anything else: GET OUT!
No RSVP is necessary (although we appreciate it) firstname.lastname@example.org See details on the Third Thursday Happy Hour page on this blog. Click here
“This isn’t about drinking. It’s about being with other men who know
exactly what you are talking about without feigning understanding.
You can order a water, soft drink, beer, coffee, tea or nothing!” ~ Kirk P. Williams
Whether you buy a lawn mower or auto or smart phone, equipment failure can stop you in your tracks and in the case of a wheelchair, this is not just a figure of speech!
Wheelchair repair may not personally impact you but you may know someone to whom this is critically relevant.
I received the following today, 8 May 2014, in an email from Monica Aden, Senior Manager, NMSS Connection Programs:
“Wheelchair repair is essential to many peoples’ mobility, independence, and ability to contribute to and participate in society. There’s concern that Medicare policies are restricting access to wheelchair repair services. If you’re a Medicare beneficiary who has experienced difficulty getting your wheelchair repaired, please help us better understand this issue by completing a short survey [https://www.surveymonkey.com/s/wheelchair-repair].
We ask that you share this email with your group members, peers and others in your network of support. The survey has been reviewed and approved by Society staff. The timeline for feedback is very tight — the survey closes early next week — so time is of the essence. Thank you in advance for sharing this with others. It is important that we hear from those impacted.”
In recent months and several times a week I “feel” healthy enough that I slip into thinking “I could work!” Then unceremoniously, the thought is slammed into the ground by the reality of my disability.
Is the phantom nature of Relapsing/Remitting Multiple Sclerosis (RRMS) the lessening of some disability followed by a different and heightened disability followed by improved ability and so on? Maybe it is just one major disability such as not being able to walk that sometimes improves and sometimes worsens.
Do we cry about any of it?
It is my contention that American males tend not to cry. Although I have come close many times and I certainly wanted to, I do not generally come to tears.
Derick Whitney’s posting “Why is it so Hard for Men to Cry?” in the blog, Psych Central, stated “It is ingrained in many men that masculine identity means holding back the tears except during times of extreme grief.” Pseudo Bulbar Affect aside, guys DO benefit from a good cry at least a couple of times in life! (See the July 21, 2010 “Emotional Freedom” article by Judith Orloff, M.D., in Psychology Today.) Sadness becomes a concern when any of us – male or female – stay depressed for an extended time with or without crying.
MS is a big source of disappointment, discouragement, sadness, and grief.
I lament the loss of my most productive income-earning years and find I am perhaps overly concerned about someday being within the Federal Poverty Level but I consciously distract myself by doing as much as I can for myself, my family, and as a volunteer. It is less important how others see me than how I view myself and without feigning humility, I do very little in comparison to most people in a similar situation.
For all (I’m relatively sure all) people, life comes with disappointment. Life also brings immense joy. Irrespective of how these truly weigh-out, I have chosen to dwell on the positive experiences. This approach to life has evidently been at least moderately successful since I have not experienced depression for any significant length of time. Sure, my mind wanders into the glorious past but I only conjure up the good times. This is certainly a more healthy way to look at the past than dwelling on the negative things in my life. The danger is in the potential for delusion and the tendency for my mind to create revisionist history. Sometimes I even believe I can still perform in the same way or better! A deluded positive slant still seems far better than wallowing in self-pity.
So, I do what I can and do not concern myself with what I did and can no longer do — at least in the same way. I look forward and up instead behind me and down. I see what I can do rather than what I cannot. For the most part, banging my head against a wall will simply produce a headache or worse!
Contrary to popular thought, MS has me and I have MS. It is not something to be ignored but to be dealt with and worked around as much as possible. Much like the value of π (pi), for practical purposes, my potential is infinite. Denying it is much like denying living.
Now what do I do with my life?
You might also want to read Laurie Clements Lambeth’s MS Connection blog entry “Crybaby” of March 14, 2014. [Part of the above posting is a comment to her blog.]
After 3 years, Colorado FINALLY has a Medical Exemption to Xcel Energy’s summertime Tiered Electricity Rates!
This applies to Xcel Energy’s Colorado electric service customers with a medical necessity for the high utilization of air conditioning in the summer and who are within the household income guidelines. Of course, a customer’s actual (historical) electrical usage may not make it practical and worthwhile to apply for this exemption.
I have received comments from several people with MS that it is disheartening a means test is still required and the program does not benefit enough Colorado Xcel customers with MS.
In general, the Colorado Medical Exemption Program (CMEP) offers a rate of $0.063 per kilowatt-hour (kWh) for all electricity used each month from June through September 2014. The rates will revert to the standard rates beginning in October of 2014. This means a participant will pay one rate for the entire summer therefore avoiding paying the higher tiered rate. All other customers are charged standard tiered electricity rates during the summer: $0.046 for the first 500 kilowatt-hours and $0.09 for use exceeding 500 kilowatt-hours.
The hope is this WILL help a meaningful number of people with MS and it is absolutely a substantial improvement over Xcel’s “experiment” last year.
Perhaps you or someone you know with a medical condition resulting in heat sensitivity can benefit. The exemption is available to any Colorado Xcel Energy customer with a medical need and not just those with MS. Individual homes will be receiving complete information on this exemption program in the next couple of weeks. It will include a letter from Patrick Boland (Xcel), Healthcare Provider form, Participant Application, and program description. NOTE: application submission deadline is May 1. Click here for general information on eligibility and the Federal Poverty Level. Call the Colorado-Wyoming Chapter of the National Multiple Sclerosis Society at 303-698-5439 to find out more. The Chapter is the official administrator of the CMEP.
If you are not eligible for this plan or choose not to participate, you may find Xcel Energy’s Average Monthly Payment Plan may also help balance out your energy bills during the year. This plan gives a more predictable monthly payment and spreads your heating and cooling costs over the entire year.
Many thanks to those Coloradans with MS who provided documentation and/or in-person testimony. Without their efforts, this accommodation would have never happened.
Evidently, researchers “have identified a brain protein that may play a key role in the memory loss associated with Alzheimer’s disease.“
I flashed back to the extended period of time when my neurologist had me on a once per month regimen of an intravenous infusion of a high dose of Solu-Medrol to “take care of the inflammation.” Is there perhaps a link between MS and the brain protein, known as Neuroligin-1 (NLGN1)? According to the article, this protein “has previously been associated with long-term memory formation.“
My hope is that there is a real potential for investigating the link between this protein and MS. It may be grasping-at-straws but with so little known about the cause of MS, perhaps this potential is worth at least questioning.
Dr. David Brown, chairman of the Clinic’s Anesthesiology Institute and one of the authors of the study said “It might work in many different disease processes that use neuro-inflammation as the central disease feature.” Zeltner reports “Brown believes that targeting microglia inflammation may have even more disease applications than they currently know.“
On Medicare Advantage? Make Sure Your Doctor is Still in Your Plan
Some physicians around the country are being dropped from Medicare Advantage networks and several MS neurologists have been speaking out about the issue, concerned that people with MS will feel the impact if their doctors are dropped.
The American Medical Association and approximately 90 specialty societies have taken the lead to address this with the Centers for Medicare and Medicaid Services and the National MS Society is working with the American Academy of Neurology to track the issue and determine impact. People currently on Medicare Advantage plans that find that their doctor is no longer part of the plan are able to switch back to Original Medicare between January 1 and February 14. See Medicare Interactive for more information.
Shortly after forwarding this info to others with multiple sclerosis, I received this reply email containing a cautionary tale . . . the names have been removed or changed . . .
“Might want to pass this on:
I encountered a small shock this afternoon. I had a scheduled appointment at [the MS Center] with [my doctor] today, first appointment after my [drug] infusion (which there is now only one infusion every six months.) I checked in, only to be informed that [the MS Center and hospital] no longer accept my Medicare Supplemental / secondary insurance: as of January 1.
I have had that policy since I started Medicare Part B back in 2009. Never thought to check if [the MS Center/hospital] was or wasn’t participating this year. After all, they always have AND well it’s [my big-name insurance company], right?!
So now I am on the hook for 20% co-pays at [the hospital]. My policy covers everything above whatever Medicare pays, at least for participating providers.
Can’t go back retroactively and change plans for 2014, of course. My error for not researching carefully this year and taking things for granted. My other providers are still taking [my big-name insurance company].
I just won’t be doing any overnights or surgeries at [that hospital]. As it turns out, the actual co-pays, as far as I have calculated them so far, for things like visits with [my doctor], his P.A., labs, etc. are minimal. But I will have MRI and other procedures done elsewhere.
Moral of the story: check your provider lists each year.”
Well established is the recognition and acceptance of “holiday funk.”
Christmas has a deep spiritual meaning to Christians. It is less about giving presents and mostly a time to think about Jesus. Still, to many people, Christmas is also supposed to be spent sharing ourselves with family and loved ones. A time to slow down our frenzied lives to enjoy “quality” time with our families and reflect on the blessings we have received. Certainly that’s what our culture presents as important. Heck, that is how it has always been and should always be! At least that is what I believe.
Today, I found myself in the midst of family and feeling useless and insignificant. Is that the MS or the Holiday funk?
I think a mix of both. I know the pseudobulbar affect is in play but I also believe the traditional “Holiday Blues” contributes a lot.
For the last few years I have felt lost, alone and generally miserable every holiday. When we open our Christmas presents as a family, I find myself incapable of inserting myself into the moment. I feel detached and unwilling to interact. But, I force myself. It is not fair to the others for me to inject and inflict my negative mindset. Even worse, I find I am incapable of wresting myself out of the mental fog. It is like being on the outside looking in. Yup, like the song.
Regardless, I was redeemed by a three-year-old whose awe and excitement about the day reminded me this day was not about me but had a much deeper meaning than I had ever realized. Oh sure, I wanted to present the woe-is-me version of myself and be the Ebeneezer Scrooge of the family, but I resisted and was so very glad. There is NOTHING to be gained by being pitiful but the feelings are there, none-the-less.
Wait . . . will the PC Police allow me to say that?! Bah humbug! I am tired of kowtowing to elitists and cowering in the corner. If words are upsetting, perhaps my physical appearance is equally upsetting! jzeeesh!
Egad . . . what do I do?
Having multiple sclerosis is humbling in so many ways yet social acceptance of most any speech or idea other than the radical has gone to the extreme of intolerance.
In the late 20th century using words as diverse as “handicapped” and “Secretary” fell out of favor as derogatory and limiting. “Disabled” and “Administrative Assistant” became preferred. These shifted focus and elevated the condition/task by causing people to rethink what they associated with the words in an attempt to garner empathy, understanding and respect. More peculiar was the change from Interior Decorator to Interior Designer. hmmm . . . somehow reality did not matter. True Interior Designers were denigrated as the result of elevating the Interior Decorator.
Traditional values and opinions have been ridiculed and censored throughout history. Is it real or is this something we simply allow by our silence? I think the latter. It is tacit approval by virtue of embarrassment.
If you hate holidays, perhaps saying “happy holidays” is offensive to you. Taking it to its progressive conclusion, exchanging thoughts or simply conversing with each other should be forbidden in case I or you say something that just might be “offensive” to anyone within earshot.
Consider the case of 50-year-old Martin Bashir who on November 15, 2013, suggested Sarah Palin should receive the same treatment as punished slaves in America in past centuries. I will not repeat it because it is not something I wish to put in writing. However, it was without doubt, a vile and disgusting visual image with sexual overtones suggesting violent behavior toward the opposite sex.
By virtue of this inflammatory and defaming insult, Bashir spoke his own thoughts and did not quote anyone. His words were intended to be accusatory and offensive and were not just an insult. To his credit, he resigned and apologized.
On the other hand, 67-year-old Phil Robertson (Duck Dynasty family head and self-described Bible-thumper) was quoting the Bible as something he believed. Rather than speak hatefully or endorse violence, he explained that the Bible – the book he believes to be the word of God – declares many things are sins but we are to love each other regardless. He stated “We never, ever judge someone on who’s going to heaven, hell. That’s the Almighty’s job. We just love ’em, give ’em the good news about Jesus . . . We let God sort ’em out later . . .”
Robertson was suspended indefinitely by A&E after saying that “everything is blurred on what’s right and what’s wrong. . . Sin becomes fine . . .” Although he continued with more adult descriptions of his thoughts, he said these things to a print reporter, not on TV. To his credit, he did not resign or apologize. [Click here for GQ article.]
The difference is one spoke hatefully. The other spoke out of conviction but humbly.
NONE of us lack bias and/or have the wisdom to take “truly” selfless actions to correct all wrongs. Unfortunately, today’s Americans tend to elevate the ideals of the extremes rather than pursue rational give-and-take positions. Too many insist on pursuing polarization. People who “shape” their beliefs and inspect all points of view, then extract the best from each viewpoint are better equipped to make appropriate assessments. Sadly, those who do not understand this approach accuse those with this attitude of being wishy-washy. There is an apparent willingness to ridicule those who do not believe in one-size-fits-all narrow-minded viewpoints and values. Although we desire to find the one rational solution for all situations, we only discover there are NO pat answers.
Independent and DIFFERENT opinions WITH CONVERSATION and CONSIDERATION are the pathways to problem solving. Mindless drone/lemming behavior is dangerous. Acceptance and forgiveness are too often forgotten and discarded.
As an ergonomist, I revel in diversity. I embrace it. The ridiculousness of censoring ourselves has become epidemic, sophomoric and irrational. Grow up. Get a spine. Speak out.
I hope we all experience a Merry Christmas with “goodwill toward all.”
A current ad on late night TV evoked in me a torrent of mangled thoughts. It promotes a compilation of Elvis Presley singing music including the song “C.C. Rider.”
I was immediately transported back to my teenage days when I played in a rock band and particularly the one weekend we were the back-up band for Wayne Cochran & The C. C. Riders at the long defunct “Bud & Swede’s” in Watseka, IL.
My mind’s eye flitted around erratically from thoughts about Elvis and his mess of a life to suddenly and disconnectedly jumping to the mish mosh havoc multiple sclerosis inflicts on a person. Yes, an odd assemblage of happenings, but a memory never dies: Memories become altered, sometimes reassembled, but generally hang around waiting for the firing of an obscure neuron to stimulate it to life.
The lyric “see what you have done” (from C. C. Rider) stuck in my mind. I could not shakefree of it. I began to think about how the vast majority of people over 40 have done a lot, yet how much was of substance? The maxim “Quantity does not equal quality” is spot-on.
Some wonderful opportunities slip by but most of us are still able to grab hold of at least a few great experiences from countless new encounters. The question becomes; who defines what is standard and normal versus uncommon and exceptional? That question indignantly whacked me on the back of my head a number of years ago when reading my ENT doctor’s written report regarding his findings. He had examined me to determine if my “dizziness” like condition might not be neurological. The report included the word “unremarkable.” What?! So, unremarkable is another word for expected? I was insulted although no insult was implied or intended. I suppose we all think we are outstanding but it is not good to be too “interesting” when it comes to our health. However, the use of that word – even as part of the medical terminology – is disconcerting.
Being troubled and almost immediately after the first few seconds of the Elvis ad, I impatiently changed stations and watched a snippet about the late Annette Funicello (who had MS) and the Mickey Mouse Club. hmmmmm Are we duped into believing we can change what is to be? Can we instantaneously jump from being run-of-the-mill to astonishingly outstanding? Or, would it just appear to be instantaneous to others?
I am convinced the Mouseketeers’ lives were the most marvelous any kid could imagine. At least those of us who watched them thought it. Conversely, a lot kids believe their lives are/were dull and going nowhere. Reviewing and assessing our lives seems to be compulsory as teenagers and again when we begin to cross into our “senior” years as a “mid-life crisis.”
Perhaps we should simply take comfort in what Willie Robertson on Duck Dynasty once said “The key is not to get discouraged in all the wrong turns you make.” And as Jase, Willie’s brother, said about life’s twists and turns, “All in all . . . awesome!“
Over the last few months I have too often heard a man with MS who is still working say “I am afraid to go on disability: I don’t know what I would do with myself.”
Interesting comment since the reasons for going on long term disability are broad and encompass cognitive and physical functioning but above all, safety. Attempting to use a footstool to reach the top shelf of a kitchen cabinet is generally unwise if not impossible. Our big desire seems to be to have “value.”
Boredom is definitely an issue to resolve and cannot be simply shoved aside, but so many of us are less multidimensional than we believe.
Reading a book (hard-copy) night be an unpleasant tactile experience due to heightened sensitivity and even the ability to grasp and hold a book. Focusing the eyes can get in the way while focusing the mind can be even more frustrating.
From a blog posting in 2009 “Jughead” said “. . . For me it [boredom] usually stems from not being able to do what I want, and though similar to a tantrum, this differs because it is more about disappointment. I can’t come up with what my niche should be, one I’ve been trying to figure it out since childhood.“
I can no longer use a hammer or a table saw. I am unable to think clearly enough to write (not handwriting but typing) anything comprehensive AND if I finally do, it takes hours if not days to complete.
The key is examining what you CAN do and re-routing your expectations. Have patience. Taking small steps can also provide immediate gratification. Try it rather than expecting to attain lofty goals only to fail and result in giving up.
The value of patience has become clearer to me now that I have multiple sclerosis and I have learned I must redirect rather than despair over loss.
I cringe at the concept of a need to be GIVEN empowerment since we are all born with the power. We — yes “we” — are the only ones who can use the power. Read Top 5 Words to Delete from Your Vocabulary in Jeff Moore’s blog “everydaypowerblog.com.”
[This was originally posted 4 November 2013 by me on DenverMensGroup.com.]
Publishing a blog is no guarantee it will be read and a probable fruitless endeavor. While providing a venue for the exploration and expression of thought, blogging is often an intimidating undertaking. This simple posting took several sittings and days to create and I continue to edit it.
Multiple sclerosis can cause cognitive complications with no limits that embarrassingly and unceremoniously stop a person in mid-thought. Like standing in a field of butterflies, much of the time I have a horde of thoughts haphazardly floating around in my head. As quickly as one is captured, it escapes.
When I begin processing a thought, another thought barges in, rudely shoving the prior thought out the door and beyond reach. It is excruciating and I have come to appreciate the unfulfilled determination of the frustrated Don Quixote.
Altruism aside, I blog as a result of a pesky belief that if I just write things down, it will put me on a therapeutic path to retain as much cognitive capability as possible: An organized and methodical documentation of soul searching akin to the ubiquitous “sorting things out.” An unscrambling.
One conventional therapy to battle the loss of mental capability is the use of Lumosity. “Lumosity is based on the science of neuroplasticity, the idea that the brain can change and reorganize itself given the right kinds of challenges,” said Erica Perng, Lumosity’s head of communications for an article in “The Guardian” by Elizabeth Day, dated 20 April 2013 and titled “Online Brain-training: Does it Really work?“
I use Lumosity . . . when I remember . . . but have found Wii Tennis, Bowling, and Golf to be more effective at trapping my interest. Lumosity exercises are too frustrating and irritating to be helpful. I get upset with it. However I must admit, as much as I despise Lumosity’s mathematics exercise, I do like and am motivated by its word creation exercise . (I was slow at math long before I was diagnosed with MS.)
Sudoku is not at all intriguing or enticing to me. Yet, it is another “therapy” for exercising the mind to rebuild connections and there are those who use and enjoy Sudoku’s challenge.
For years I have “intended” to begin Tai Chi but have yet to summon enough discipline to get beyond the introductory section on the Tai Chi DVD. With its slow movements, it seems to be a more MS-friendly exercise than Yoga since it can even be done sitting in a chair. Yoga’s physical contortions can be painful for a generally healthy individual of moderate physical ability. It is virtually impossible for a person with limited flexibility/mobility. Egad! Maintaining a position with spasticity?! So . . .
How do YOU handle this too often dismissed malady of the multiple sclerosis mind? (Say that fast three times!)
How do you manage the brain’s wrath and rebellion when it comes to your MS cognitive issues?