In the profit-driven, 24/7 news cycle of a world in which we live, it’s amazing the number of outrageous theories about multiple sclerosis one hears.
I believe that the internet has become the most powerful tool people living with MS have at our disposal. The access it allows us to previously hard to find research, historical data and others living with the disease around the globe is an informed patient’s dream. To paraphrase Newton’s Third Law of Motion, however: For every action there is an equal and opposite reaction...
From the very beginning of the Unspeakable Bits blog, I have written from the premise that information is the counter to fear. I believe that wholeheartedly, and while it is sometimes difficult to face ugly facts about living with multiple sclerosis, I’d rather look at them than hide from them.
One of the most difficult aspects of living with MS comes if we can no longer work due to our disease.
There are loads of resources out there to help us decide when to disclose (or not). The government especially wants to help us stay employed. But even with rehabilitation counseling, we may get to a place where we just cannot work any longer. Because society often seems to value what we do more than who we are, this point in one’s life can be particularly difficult...
The approaching holidays can be a bright and wonderful time of the year. It can also lead to some tough times for people living with MS. While friends and family gather to bask in the warmth of the season, we can sometimes feel “less-than.”
No one would want a gift from the damaged and discounted goods table; why, goes the faulty logic, would someone want us?
Have you ever run across the “Know-It-All”? You know, the guy or gal who has done, seen, tasted, smelled, tried, succeeded at (hardly ever failed – at anything), read, studied and/or experienced whatever topic might be at hand? And have you noticed that these KIAs (might as well give them a name, right?) have opinions about a subject that are almost always diametrically opposite yours on just about everything? It seems sometimes that these KIAs can only feel themselves to be right by making the rest of us feel like we are somehow wrong.
How about the MS KIA?
The Unspeakable Bits From a Life With MSI believe that most people with multiple sclerosis are really good people dealt a challenging hand by the fates and who are just trying to get through and help others along the way. Results of the most recent CCSVI study, however, have once again highlighted some rather nasty patient-on-patient treatment.
Over the years – and as social media interactions among people living with MS have increased – I have noticed some thoughtless, some insensitive and some downright rude behavior within the MS community… toward one another!
When we first started writing the “Unspeakable Bits” blog, I resolved not to candy-coat the difficult parts of living with multiple sclerosis. I’d always intended to open the conversation about end-of-life and MS. I decided to broach the subject now, in the wake of the recent passing of our fellow “MSketeer,” Annette Funicello.
Social media sites erupted with kind words and remembrances of the actress. Soon, however, confusion began to set in as Disney’s press release attributed her death to “complications from multiple sclerosis.” When a Canadian television video of her last days was broadcast as a remembrance, confusion became fear and concern.
The Unspeakable Bits; From a Life with MS
4/20 was long counterculture code for the use of marijuana. So on April 20, I put out a broad question about the medical use of marijuana (MMJ) for multiple sclerosis to the Life with MS Facebook page. I was surprised by the overwhelming response and support for the legal use of the substance.
After months (or even years) of questioning our symptoms, questioning medical professionals, questioning “Web – the Great and Powerful,” and questioning others with multiple sclerosis, we have reached the inevitable answer: we have MS.
Why then do so many people feel like they have the right to question us?
The Unspeakable Bits; From A Life With MS Earlier this month I brought up the subject of how difficult it can be for many of us living with this disease to find a doctor who specializes in multiple sclerosis.As hundreds of MS activists will descend on our nation’s capital to meet with Congress and push for funding to better help people living with MS, I’d like to take this opportunity to add a positive postscript to last month’s blog. I believe that it illustrates why we should bring up the difficult topics … someone just might listen and help.Although the metropolitan corridor of the Seattle area has a wealth of very well-qualified MS specialists, much of Washington state, like many areas in the country, suffers from a shortage of doctors who are specially trained to understand and treat MS. Such was the shortage of qualified docs in some rural areas that it was not uncommon for people to have to drive (or be driven) several hours in order to see their doctors.While those outside of the MS community may not see the additional layers of hardship this kind of distance to a doc would bring, we know all too well what it entails:
Long drives may require one (or several) days off work
Many of us cannot make such long drives alone
Finding a driver means someone else may have to leave work
Fatigue can require expensive hotel stays
With gas prices high, the financial burden only increases
And the list goes on…
One particular barrier has been Washington’s restrictive medical licensing laws that make it difficult for foreign-educated physicians to get their medical license, even if they have received post-medical school, specialized MS training at American institutions.
Seeing a need and the serendipitous resource of a well-respected university teaching hospital (which houses the Western MS Center) and many other respected MS Centers, the National MS Society began working with Washington’s legislative bodies to craft legislation to remedy the situation.
With the dogged determination of local staff, volunteer activists and a particular ally in a respected representative who also happens to be an MS nurse, three years of hard work and lobbying paid off for the 12,000 people living with MS in the state.
Working across party lines – patients, care partners, staff, volunteers, activists, doctors, legislators and government officials – takes time, planning and immense effort. Only with such efforts, however, can we address the difficult questions, hardships and concerns of the MS community.
At the federal level, there are serious questions of funding for research and regulation of drugs and medical devices that MS activists will take to Capitol Hill next week and I wish them the very best of luck.
If you feel like it’s time to speak of the unspeakable bits of a life to your legislators, if you have concerns with the way that your government sees our disease, if you want to do something that will help not only yourself but our greater MS community, I encourage you to do as I have done and become an MS activist.Because how else, really, is it going to get done?
Wishing you and your family the best of health.
The Unspeakable Bits; From A Life With MS
How can it be so? A year has passed since we resolved to speak the unspeakable. In that time we’ve had some pretty frank discussions about multiple sclerosis and sex, bladderand boweldysfunction, marijuana, divorceand more.
Unfortunately, MS gives us plenty more “unspeakables” to bring up, so we’ll begin 2013’s Unspeakable Bits with a topic that is a new experience – though one for which I had planned. It’s one that I now share with many others living with MS: not having access to a doctor with expertise in MS.
At the end of last year, my wife and I moved to a small town that is about an hour’s drive to the closest neurology clinic … but that clinic only operates on the 1st, 2nd and 4thMonday of each month, and then only from 9:30 a.m. to 1:00 p.m., and they handle primarily epilepsy cases. We’re several hours away from the nearest MS center (or “centre” as they spell it here in Ireland). I have gone from living in a city with a high concentration of qualified, caring MS specialists to (by choice and design, mind you) an area of the world that has more sheep than people living with MS (and more shepherds than MS docs).
Fewer doctors means fewer choices, which means it’s more difficult to find the “right” doctor for me. Although I titled this blog “Bad Docs, Wrong Docs & No Docs,” I must confess that there are very few really “bad” doctors out there. By bad, I mean inept, mean and unqualified to practice medicine. I may have had bad experiences, a bad rapport or just a bad feeling with or about one particular doctor. However, it’s so rare that someone is actually a bad doctor that I think we can (though I expect to see a few comments on exceptions that will prove the rule) move on to the next: Wrong Docs.
“Wrong” can be very subjective. If a doctor seeks to collaborate with a patient, one person might see that as not taking control of a situation. Conversely, another person may see a doctor who takes an authoritative “old-school” stance of dictating to a patient as overbearing and condescending. Switch up the patients and these two doctors might be the “right” doctor.
It is important to understand that our doctors, while experts in their field, work for us and we should have the final say in our health care. I often think of my healthcare team as a baseball team… a team of which I am ultimately the manager.
Finally, the situation in which I find myself: No Docs.
There are several areas of the country (and the world, I’m finding) that are sorely lacking in good quality MS services for people living with this disease. In the U.S., the National MS Society’s MS Navigator® program offers a pretty comprehensive list of service providers for most areas in the country. The problem is, of course, that people live all overthe country and MS doctors well … don’t.
For those living outside of the United States, the Multiple Sclerosis International Federation has a pretty good list of service organizations from around the world as well.
So, we’ll open the new year of Unspeakable Bits with a conversation about your MS doctors. Discuss…
Wishing you and your family the best of health.