Removing Barriers to Accessibility Requires Planning, Persistence
Lost in the delights of the library; 10 minutes over meter limit Yes, they chalk-marked the tires and I got a ticket. I was furious. Once again,…
Lost in the delights of the library; 10 minutes over meter limit Yes, they chalk-marked the tires and I got a ticket. I was furious. Once again,…
The three words are powerful. My mother speaks them into my spirit frequently. She tells me to “Just hold on.” My mother is a woman who has withstood many tragedies. Both my parents have. They’ve lost their children, cared for me as an ill child and they continue to…
Back in September I told you about Cheryl Hile. Cheryl is a young woman with MS whose goal is toĀ become the first person with MS to run in seven marathons on seven continents. In September she had just completed her first marathon,Ā in Cape Town,…
Here’s my Pick of the Week’s News, as published by Multiple Sclerosis News Today. Clinical Trial Supports Stem Cell Transplants to Treat RMS Patients with High Disease Activity Itās no secret to readers of this column and, indeed, to the wider MS community, that I am convinced…
Perhaps the most famous MS advocate today isnāt a patient, but the daughter of one. Author J.K. Rowling lost her mother to multiple sclerosis in 1990, something she describes as āan enormous shock.ā In order to help fight and defeat this disease, she donated Ā£10m to found…
You may not have heard this song, but I bet its lyrics will strike a chord. I cannot feel my body. I cannot feel my face. My legs are pins and needles and my mind is a disgrace. I see in double…
January 2017 has proven to be a bit of a cluster, if you know what I mean. Holiday recovery, out-of-town trips for work, budget cuts, extreme weather and, of course, the social and political “chaos climate” all conspired to make me itchy, twitchy and tense! This past Thursday, as…
There are many people with MS who miss out on easy access to care from multiple sclerosis specialists, and they often have few places to turn for trusted information, or to get their questions answered. There is a place where we can get both for free ā theĀ …
Recent weeks have been filled with enough political drama to last a lifetime.Ā Wherever I go virtually (and now, even in “real life”), ideological division has been amplified to the extreme. Except …Ā when I go to the multiple sclerosis online forum I co-administrate. Meet the people in my neighborhood The…
MS is an onerous disease. There are times when I feel as if I am in the midst of a tsunami. Everything comes crashing in and all I want is a safe haven, a level of calm. The tsunami consists of depression, physical symptoms and the destruction of peace.
Uh oh! My cat, T.J., is under my feet trying to nibble my ankles as I stumble toward the bathroom in the middle of the night. I know what’s about to happen. As I try not to step on T.J.’S tail, it’s already started. I’m going down. It…
The common cold is upon me as I sit here laboring to breathe, with water-soaked eyes and a rumbling cough. I am under attack, an enemy has infiltrated my multiple sclerosis-weakened immune system. The antagonists have found a warm home and they are fighting to stay. It is…
Here is my Pick of the Weekās News, as published by Multiple Sclerosis News Today. Sense of Smell Impaired in Half of Multiple Sclerosis Patients in Study For very many years I have known that my sense of smell has not been as good as that considered normal…
About two weeks ago I wrote about my roller-coaster ride being pretty smooth since my first round of Lemtrada infusions ended in early December. Well, the loops are now looping. Month two post-infusion began with a good lab report, but also with an appearance of the up-down fatigue monster.
One of my sisters called to let me know that CNN was doing live coverage of the Womenās March that was taking place in all 50 U.S. states, as well as many other countries. While we talked, one of the speakers came on and observed that the issues facing…
“Laughter is the best medicine.” We may never know where this quote originated, but it’s a good one. The benefits of a loud, robust belly laugh are many! According to many internet sites laughter has great short-term effects. When you laugh, it doesn’t just lift you mentally, it…
This is second in a 2-part series. You can findĀ Part 1 here.Ā Being proactive about your MS means staying up-to-date on current theories, treatments, products, and strategies. It’s safe to say that most people will turn to the internet at least a few times to look up…
Thereās a new kid in town by the name of LiveWiseMS. Partnering with the International Organization of MS Nurses (IOMSN), LiveWiseMS has already become a trusted resource for patients and care partners looking for answers about MS. The websiteās mission is…
Oral multiple sclerosis meds appear, more and more, to be the first choice of patients who are just beginning to receive an MS treatment. A recent report by the independent marketing research firmĀ Spherix Global Insights shows thatĀ oral disease-modifying therapies captured a significantly higher…
Have you ever had someone tell you “it could be worse?” They are making a valiant effort to comfort and console you. However, there is not much consolation in the words. They almost sound a bit insensitive. I have been told this several times. I think many people…
Here’s my Pick of the Week’s News as published by Multiple Sclerosis News Today. MS Patients with Spasticity Needed for Study of Extended-release Baclofen Capsules Now hereās a rare chance to get involved in a clinical trial ā as long as you have MS and experience some form…
Thereās one thing you need to know about my family ā weāre weird. We laugh at inopportune times. We can go entire days just speaking to one another in movie quotes. Sarcasm is a love language to my clan. And we can make just about anything ā and I…
Want to know what living with MS feels like? Take a ride on this bike. Those of us who have MS know that our disease has lots of symptoms. There are the legs that feel like they have 20-pound weights on them … balance that can have you…
After my recent insurance experience, which I share here, I never again will wonder why some people give up on claiming their medical benefits. I have received Botox treatment for spasticity of my quad and hamstring muscles. This is an FDA-approved use, but to get this treatment there has…
Nominations are being sought for individuals and groups for the U.K.ās MS Society Awards 2017. Organizers say the awards will recognize the stars of the MS community and their contributions during 2016. While not wishing to denigrate…
In August I sold my home of 18 years and downsized to a small one-bedroom rental “in town.” For weeks I tripped over boxes, packing paper, out-of-place furniture, the dog, the cat, the dog chasing the cat, size 11 tennis shoes and dirty socks. I shared my efforts to…
Serving as co-administrator for a large MS forum has shown me that, while we live in a world of easy access to information, we may not always be prepared to understand and interpret it. While Iām not a medical doctor, I do work in the healthcare field and have…
Grief can weaken our immune system, elevate our blood pressure, and affect our overall health. During a loss, especially one ofĀ the magnitude of a loved one, self-preservation is not always a top priority. For those of us with multiple sclerosis, the mental anguish that isĀ grief can exacerbate our already…
When the Americans with Disabilities Act was signed into law in 1990, there seemingly were as many opponents as there were proponents. All these years later, the standards and expectations of that landmark legislation have become second-nature in mainstream America. Concerns about costs and consequences were…
Many MS patients are in the hunt for multiple sclerosis clinical trials for which they can volunteer. But those trials are not always easy to find. On the other hand, researchers complain it also can be difficult to find trial subjects. I was lucky. Back in…
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