Thursday, December 1, 2016

Books ... the addiction of my choice:


You've Got Some Nerves, by Judy Lynn:



Multiple sclerosis is so weird. Sometimes I just put up with a strange sensation or painful problem because I do not know how to describe it to the doctor without sounding crazy.

I hope the problems will just go away, and sometimes they do. Maybe I am a little gun-shy from the year prior to my diagnosis, when each symptom I complained about just brought me a new antidepressant.

A couple of years ago, after suffering in silence for many months, I scheduled an appointment with a neurologist. Waiting in the exam room, symptom list in hand, I worried. My new sensation was causing problems, but I did not know how to describe it. The kind (and unusually personable, for a neurologist) doctor greeted me warmly. We covered the usual suspects — fatigue, paresthesia, foot drop. He asked if there was anything else.

“Well, sometimes I get a really weird sensation in my head,” I stammered. He asked questions: Was it painful? No, not really, just very uncomfortable. Where did I feel it? Sort of in my neck and the base of my skull. Could I describe it?  The words finally tumbled out of me, in an awkward rush of pent-up stress.

“This will sound weird, but it feels like a giant hand is grabbing my head and squeezing the back of it. Or like I’m in a pressurized room, and my head is being squished. My neck gets really tight and I get kind of dizzy and sometimes it’s like the floor or the walls tilt. If I’m standing I sort of lose my balance, and if I’m sitting it feels like my head jerks to one side, but I don’t know if it really does.”

Thankfully, the kind doctor did not call for a priest to perform an exorcism. He asked about neck spasms and felt along my shoulders, neck and skull. He gently reminded me that I have lesions in my cervical spine and explained that this was likely a type of vertigo caused by neck spasms and my damaged nervous system.

A prescription for Baclofen was sent to the pharmacy.

I have since sought additional ways to minimize this sensation, otherwise known as cervicogenic dizziness.

Good posture
  • Make sure any screen (computer, phone, TV) is at eye level
  • Get up and move around, don’t sit in one position too long
  • Shoulders down and back, sit up straight
  • Pilates lessons have helped with my posture and overall muscle spasms

Stretching

  • Take this over-enthusiastic stretcher’s advice. G-E-N-T-L-E neck stretches. Less is more!
  • A heat pack can loosen neck muscles
  • Ask a pro for some stretching tips
  • Yoga, under the guidance of an instructor, is useful. I hurt myself if I try to do more than cow-cat at home; Or corpse pose, I am super good at that one!

Professional support

  • Massage therapy is my most effective treatment. However, it is not covered by my insurance for chronic conditions. So…
  • Chiropractic care can be useful. Word of warning: If my neck spasms are too severe, then chiropractic makes it worse. Pre-treatment with something like Baclofen may help.
  • Physical therapists can teach proper stretching techniques
  • Occupational therapists ensure that daily work and living activities do not aggravate neck problems
  • Check with your employer, local Division of Rehabilitation, or National MS Society to request an ergonomic assessment and modifications to your work environment.

Vitamins, Minerals and Supplements – Oh my!

  • Ask a naturopath or nutritionist for dietary and supplement recommendations
  • The National MS Society also has some information on supplements for MS
  • Calcium and magnesium (together!) relieve muscle spasms. I use a powder that dissolves in water for quick absorption.
  • Potassium also works well and is easy to get from bananas, coconut, dark leafy greens, avocadoes, sweet potatoes and other yummy foods.
  • Curcumin supplements seem to help my MS overall, including this dizziness
This is just one of many MS symptoms. When you throw in the other demands of life, it is to be expected that one cannot maintain “best practices” at all times. My recent 10 days of travel made MS management quite challenging. Multiple airplanes, buses, heavy luggage, uncomfortable conference chairs, awkwardly placed presentation screens, and stiff hotel pillows all conspired to invite my cervicogenic dizziness out to play.  I took a little more Baclofen than usual. Thoughts of Botox bounced in my head as I lay in corpse pose on the hotel room floor. Elevators were favored over stairs, or — heaven forbid! — escalators. An unintentional sway or head-shift was just an opportunity to smile broadly at whoever I found myself looking at. Hopefully I passed as either super friendly or tipsy, or maybe both.


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.


In support of Multiple Sclerosis (MS) research:


Never give up!





Wednesday, November 30, 2016

I'm convinced!



The picture on the left was taken in 1870.
The picture on the right was taken in 1860.
I am now forced to conclude that Nicolas Cage and John Travolta are vampires.


No more stress? Is that even possible?




MSAA 
Multiple Sclerosis Association of America

November 28, 2016

By Penelope Conway

Stress is not a good combination with Multiple Sclerosis. I hear all the time how stress needs to be limited to keep from triggering an exacerbation, but how do you do that in a world full of “I want it now” people and “it can’t wait” situations?

There are hundreds of lists on the internet explaining what you can do to avoid stress, but listing things out and doing them are two different things. Then if you add MS into the mix of things, it seems an impossibility.

Maybe your day starts something like this…

You wake up in the morning to a busy day planned. You didn’t hear the alarm clock earlier so you are already being rushed to get your day started. It’s early, you’re exhausted and your body isn’t cooperating. You take a shower, and even though you did every cool down technique you know, your body is simply too weak to keep going at the fast pace you have set for yourself.

You take a moment to rest then push on to get dressed so you can get out the door to make up for missed time. All the while, playing through your head is a rundown of everything you must do today. You have lists created, app alarms set on your phone to remind you of your time constraints and post-it notes scattered everywhere.

You do your best to hold back your frustrations but before you have even left the house to begin the day, you are feeling overwhelmed and defeated.  Somehow MS just doesn’t fit into a busy day and somehow you always seem to forget that tiny little fact.

The unexpected happens much more often now that MS is a part of your world. You get tired faster, weak muscles limit your functionality, your vision messes with your ability to complete even the simplest of tasks, dizziness and vertigo trip you up, and your thinking gets all muddled in the process. It’s hard planning for the MS unexpected. I always say a life with multiple sclerosis is like a box of chocolates…you never know what you’re gonna get. (Thanks Forest Gump for the inspiration.)

I have discovered that stress makes you extremely tired and can cause MS to worsen, but it’s stressful to avoid stress so you end up stressed out anyway. It’s really not easy trying to avoid stress. Ugh…just thinking about it is stressing me out.

So how do you fit a life with MS into a stress free list found on the internet? Well, for me that’s an impossibility. It seems MS doesn’t like lists or plans. It kind of has a mind of its own and doesn’t seem to want me to know ahead of time what it has in store for me throughout the day.

When life become overwhelming, and many times even before it gets to that point, I find that I need to take a moment to step back from all my commitments, work, and obligations. I need to take a moment to pause and re-examine everything. Literally.

Is there anything I could change or remove from my day that would help ease the load? Do I really need to vacuum the house today, tomorrow or even next week? If I wait and take a shower before I go to bed rather than when I get up in the morning, will it help? Can I recruit someone to pick up a few things from the store for me so I don’t have to go? Will the world fall apart if the laundry isn’t finished?

You are more important than the chaos that surrounds you and way more important than the stress that it can cause. Work on changing your workload bit by bit, little by little, moment by moment. You won’t be able to quit everything (which I happen to think would be nice to do at times) and you won’t be able to stop the world from spinning out of control, but you can make a positive change in your own life.

Take time to slowly work your way out of those over-commitments by finding others willing to step in and help. You may need to juggle schedules around and say no to people you normally wouldn’t say no to, but in order to simplify your life and relieve the pressures weighting you down, you have to do it. It’s not an option.

Do what you can today and leave the rest for another day. Take one step closer to living stress free, and before you know it you will be enjoying your life….even with Multiple Sclerosis.

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS:


where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.

About MSAA:

As a national nonprofit organization, the Multiple Sclerosis Association of America is a leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a toll-free Helpline; award-winning publications including a magazine, The Motivator; website featuring educational videos and research updates; S.E.A.R.C.H.™ program to assist the MS community with learning about different treatment choices; a mobile phone app, My MS Manager™; a resource database, My MS Resource Locator; equipment distribution ranging from grab bars to wheelchairs; cooling accessories for heat-sensitive individuals; educational events and activities; MRI funding and insurance advocacy; and more. For additional information, please visit http://www.mymsaa.org or call (800) 532-7667.



In support of Multiple Sclerosis (MS) research:

Never give up!