WHO IS SUSIE WEBER?

It seems my life is always pointing me in some new direction. I tend to follow my heart and try to embrace and recognize new opportunities when they present themselves. Life has certainly provided me with obstacles along the way. My life changed forever when I was diagnosed with Multiple Sclerosis in 1987.

I used to say that I’ve worked very hard to never let my MS define me. How ironic is that? I realize now that that’s exactly what it’s done. It DOES define me – not by the negative aspects of the disease – but by the  positive way I tackle life. You don’t need to know that I have MS to recognize that I am very compassionate and have an extraordinary amount of personal drive. It would seem that MS has actually made me a better person.

My 12-year-old son is on the autism spectrum, my daughter has been struggling with ADHD since first grade and my oldest son became insulin dependent at age eight. Because of my experience with MS, I am better equipped than most to endure  these challenges and guide my children over their latest hurdles. In turn, they have become amazing people in and of themselves.

About 6 years ago, I decided to try exercising again. I wanted to see if my body would cooperate. I could barely walk a mile when I started, but have since run 7 half marathons. I am not a star, but find that I am a positive role model, especially when I influence others to be healthier in some small way.

Until now, only my closest friends and long-time associates are aware of my health challenges. I was afraid that learning about my disease might make my business associates and clients apprehensive. I am writing this blog to share with you what's  possible with MS, how I'm dealing with it on a daily basis and what I've learned from my MS peers 

I had the great opportunity to participate in the Leap of Fairth MS/PD expedition to Mt. Kilimanjaro in July 2011. I got me out there sharing the story of what's possible with MS. I am motivated to raise awareness for the disease and learn more from my MS peers everyday. MS has made me stronger in ways I cannot comprehend. 

 

CYBERCAST LINK FOR 
THE MS/PD KILIMANJARO
CLIMB (July 10 - 24, 2011)

I believe we are Team 2


PRINTS

Limited edition prints signed by Susie Weber are still available.

 

MUSIC check out the song

 

Entries in Multiple Sclerosis (1)

Monday
Jan142013

Be a better Multiple Sclerosis (MS) Patient

I've been thinking about how silly some of the basic neuological testing seems at routine doctor visits. The neuorologist had a battery of tests like touching your finger to your nose, watching you walk down the hallway than walking heal to toe. You might hop on one foot and then the other. It feels a lot like the old child's game, “Captain May I?” While you're out in the hallway they typically have you read the traditional eye chart by covering one eye and then the other. There are others. They seem mundane and unscientific. Yet every visit to the neuorologist includes this practice. I wonder if my doctor even makes notations about my performance. Seems nurses could easily handle this protocol when taking your vitals and charting your basic info. When the tests are done, my doctor might as well pat me on the head when he says “good job”. I don't think these test are always a good snapshot of your MS. Lots of times I am okay at my appointment, but had huge balance issues or lost my eye sight days before. Oh well, I guess that's why I am not the doctor.

I need to be a better patient. When we are done with the  I am always thinking “really? this is why my neurologist gets the big bucks?

So I've learned to write down questions to ask prior to the appointment, or at least think about what I want to accomplish on the drive to the clinic or in the waiting room. This helps a lot, but I don't always feel the answers are satisfactory. I don't think the doctors always appreciate how hard it can be to ask some of the personal questions that need to be asked. By the time I get to ask my questions our time is almost up considering how much time goes into the “pregame, captain may I” stuff.

I want my doctor to be more proactive. I want him to ask me if I am having this or that issue or follow up on what was concerning me last time.  I want him to explain things like what spasms are, what bladder/bowel disfunction is and help me identify what's MS and what's not. I want to know if there is something new on the horizon for treatment. What's the latest research saying and if any holist remedies seem to be working. I don't want him to assume I know. I want him to ask me what my biggest obtacles are everyday and then offer ways he can help. I want him to learn ways I have overcome aspects of my disease so he can share that knowledge with other patients. I want him to encourage me to get involved in advocating for MS (although I have done this for years I find it interesting that none of my doctors have ever asked). I want to understand (and ideally get a printout) why I am being prescribed medication and how they are supposed to work. I also want to know about possible side effects (I don't want to have to google the medication when I get home).

I transferred to my current neurologist a couple years ago with the hope of a better experience. I think it will be okay eventually, but I recently noticed that much of my MS history did not transfer. I don't think my doctor has a clue what I've been through since my diagnosis and how much progress I've made. Next time I will need to ask straight out and plan to bring some records that are clearly not in his system. I think some of my early information is so old that it may have been purged as clinics merge and are absorbed by new health care providers.

It would be nice if doctors could really get to know us better. How can they? They are expected to document and checkmark their thoughts throughout a huge, generic healthcare data base. I often sense that doctors are so busy cramming, scanning and entering data on-the-fly so they can get onto the next appointment that they don't really hear what their patients are saying. Digital records and be an asset and a curse. I want my doctor excelling at neurology not data entry. I also want my doctor to have enough time to meet with me that he doesn't cringe when I pull out my list of questions. 

So much about MS is not fixable, but we need to get more information about coping and living with aspects of the disease that plagues us. We need reassurance that our issues are indeed real and that we are going to be okay. There needs to be better dialogue – a better exchange of information from both patient and doctor and medical records. 

I figure my next appointment will be better. I am going to be high maintenance. I am going to bring up all my concerns and if we run out of time I plan to ask him to email me me the answers.