Hoping for the best

“Keep in mind it might become absolutely impossible to pull up your pantyhose while hanging onto a walker. Putting on your pants will be no easy feat either. While you can start out sitting down, a point will be reached where you must get up. We recommend you hope for the best while pulling, zippering, tucking and buckling. We also recommend that you stop wearing contact lenses as the dexterity in your fingers might become compromised enough that you can’t get those delicate disks out of your eyes. Now you have a nice day and the nurse will be right in to show you how to use your injectable.” 
 
Of course this conversation never happened, but wouldn’t it be helpful at the time of diagnosis to have the "Reality of the Situation Committee" stop in and offer up some insights into what your life with MS might be like?
 
I also believe the Committee should wander by at other significant events – perhaps your wedding – just to let you know your groom considers drinking coffee while reading the paper multi-tasking. Or your baby shower to give you 10 reasons why you will never sleep for the next 20 years (give or take, depending on how the teen years go). But no one wants to hear from the Committee on happy occasions and even the Committee, while possessing great insight, does not have a crystal ball. 
 
The reality of the situation, when you receive the diagnosis of MS, is different for everybody because of the very nature of the disease. But I imagine everyone who leaves their doctor’s office with the bad news has the “What now?” moment. My moment came on a beautiful October afternoon in 1999, sitting in my car with my husband. He met me in the parking lot after the doctor told me, “You, my dear, probably have MS,” like I had won a prize. We were terrified and had more questions than anyone could answer.
 
“Now what do we do?” I asked my husband. Stricken, he looked at his watch, announced he had to return to work. I suddenly realized I had to really hustle to pick up my baby and get home to meet my first grader getting off the bus. I cried all the way home, but it was my first lesson in how life does not stop for MS. As for the Committee, they were nowhere around.
 
It has taken me 14 years to fully realize that life does not stop for MS, nor should it. MS changes my life and the lives of those around me on a daily basis. I had no idea that October day how difficult some of the changes would be. But I have also learned that with the help of my long-time close friend, PJ, I am able to hang onto a walker and pull up pantyhose. Jeans are still a problem, but I am hoping for the best. Aren’t we all?
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Susan

Susan Skoney, Blogger

Susan Skoney was diagnosed in 1999. She lives in western New York with her husband Michael and daughter Hannah. She worked many years in public relations and advertising, and has just started writing about her MS in the last few years.

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    20 Comments

  • pete wood   Nov 15, 2013 9:40 AM
    M/S Chin up it is tuff but do able I was diagnosed in 1997 it takes & never give back it is a fight to get back what it takes be strong & stay poss.
  • Kerri   Nov 15, 2013 9:58 AM
    Interesting thoughts. Day by day, sometimes hour by hour, we adjust to what our individual collection of ms symptoms brings. No committee or individual can predict someone's future nor would any of us be ready to hear and absorb it while adjusting to a diagnosis. Your writing causes me to reflect on how people hear a diagnosis and how much information a newly diagnosed person can realistically handle hearing.
  • Nancy   Nov 15, 2013 10:06 AM
    Kerri - you hit the nail right on the head..... it makes one realize how much we take for granted.... especially when it starts to fade away...
  • Kim   Nov 15, 2013 10:21 AM
    I suppose there's no actual way for the committee to inform you of your MS diagnosis. My doctor just laid it out "you have MS, here's some brochures, here's a prescription for Avonex, some information on that and a prescription for a course of IV steroids, stop at the end of the hall to schedule that, call if you have any questions". Haha. questions? Try years of questions. I was diagnosed in 1998. I have my questions answered for the most part. Mainly I've figured out, as you say, how to live with this diagnosis and how to keep going living my life with my 2 children, 2 dogs, husband, house etc. As others have said. It's different for everyone. Wish there could be a handbook on what to do, but it is different for everyone, I have learned. But I guess the bottom line is learning to appreciate and live each moment of each day to the fullest.
  • northwesternviews  Nov 15, 2013 10:27 AM
    Yes I agree with what you have written; I believe that that one wit MS should Aim High and not give up on your dreams.
  • Sharon   Nov 15, 2013 11:07 AM
    Dx 1994...there are no committees ...hard,but must stay positive. Believe in yourself as then you learn strength. Life only goes forward. Acceptance is the hardest for me. But, I find that I must carry on, no matter what.
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    mud909  Nov 15, 2013 11:19 AM
    I found out recently (although put off dx for two years). I prepared myself knowing what was coming when the spinal tap and mri results came back. I reached out here and among my friends at home to handle the deluge of feelings that were sure to come. I was able to switch from denial mode to proactive solutions mode. Things don't seem so bleak with support. I start my injectables in a couple days and I'm cool with that. I am going to limp off to a short day of work and then have a dinner date. Life ain't over baby.
  • Tina   Nov 15, 2013 12:44 PM
    Maybe I am nieve I don't know but when I was diagnosed on 10/13/13 I was scared at first but now my thoughts are it is what it is!!! I am going to my first neurologist appointment on 11/25 don't really know what to expect!! I am just hoping to be able to walk normal again!!
  • Janet Passman   Nov 15, 2013 1:21 PM
    I have had MS for 48 years now. I walk with a cane and use my Rolator when I go shopping and know the store does not have shopping carts. I do use a walker at night when I wake up to go to the bathroom. I have been on Avonex since it came out. I am a firm believer in the drug. So far, so good!
  • Richard Diggs   Nov 15, 2013 3:39 PM
    I was diagnosed in 2000. Today I choose to celebrate the things I can do as opposed to mourning the things I can't. God bless
  • Anybeth   Nov 15, 2013 4:57 PM
    Might have been nice if the "Reality of the Situation Committee" had at least sent me a memo. Would've provided some balance against the "Cult of Denial" and the "If You Just Try This Remedy" sales force.

    I'm all for hope, but there can be a fine line between hope and denial. Can we find a way to tell some people that they don't need to change their lives because of an EF-1 tornado without telling others not to change their vacation plans and to disregard the Category 4 hurricane? The "make no major life changes" advice did me harm rather than good. I understand why it's there, but I wish it weren't applied indiscriminately. I wish someone would have told me that, if I couldn't make a dent in a project despite my best efforts, I could stop playing Sisyphus and go focus my energies elsewhere. Took me far too long to figure out that was ok and not indicative of personal failure.

    I remember 3-5 years ago, I read something in either the NMSS mag or Neurology Now about the possibility of a prognosis upon diagnosis (or dx + 6 months) of MS. It was about having charted the likely courses based on initial symptoms/progression. Are the newly diagnosed getting advice based on this? In my case, it would have been something like "We need to treat this immediately and aggressively. It's likely your disability score with increase rapidly and that you will be unable to work within 5 years. Investigate other options, should you need them." Yes, I fell in the most severe and uncommon category listed and I think I needed different advice than those in the less severe categories, say with vision symptoms a couple of lesions. We don't have a crystal ball, true... but that rock ain't onyx anymore. I hope we're using it.
  • Laura   Nov 15, 2013 5:49 PM
    When I was diagnosed I was in the ER with a blinding headache and I felt like i was sitting on a hot curling iron, they did the MRI and the doctor walked over with the nurse, when I saw the nurse with him I new I was screwed but I was confused because he had a huge grin on the his face, I didn't know if I had just won the lottery or I had a brain tumor and was about to drop dead, it was neither but I wish that he had started with you have MS but you are not going to drop dead from it.
    after a week of sitting on the couch in shock I new that nothing had really changed, I was still a new mum, I am a film producer and at the time of my diagnosis I was in production of my first film so I had to go back to work people were depending on me.

    That was 9 years ago, I am a single parent with MS and though some things have changed in my life, I think I am a better version of myself now with occasional breaks to deal with my MS
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    Victoria50  Nov 15, 2013 8:01 PM
    I was diagnosed in October, 2012 and feel like I'm still trying to figure it out. On good days I go and do what I can but always seem to pay for it the next 2 or more days. But I also remain hopeful our I would cry more than I do! Great post, thanks for sharing!
  • Pam   Nov 15, 2013 8:17 PM
    I appreciate this story. I am thankful that my children were grown by the time I was diagnosed with PPMS. Every morning is a challenge to get ready for work but once I am at my desk, it is all good. Thankful for my secretarial job of 30+ years that allows me to be the person that I am at my best. Those things I cannot do I miss very much. I will never be able to physically do with my grandchildren that I would love to do, they are just going to experience a different grandmother. My physical disabilities will never stop the love I have for them and for my family. For that I am grateful. I try not to think to much of how it will be. That brings an unbearable sadness which is not in the definition of who I am. I thank God every day for the wonderful life I have. This is a part of His plan and I accept it. My thoughts, prayers and words of encouragement to my brothers and sisters with MS that a cure is found! Thank you for letting me share.
  • Wendy   Nov 16, 2013 7:49 AM
    I was diagnosed in Dec of 2009. I also have RSD or CRPS. I am having a lot of trouble keeping up with my job duties. I feel like a failure and I don't know what to do. My job is very stressful, they have cut a lot of positions and put more and more pressure on us to do more work. In a time when I have two conditions that affect how my brain seems to work, this is just not going well. My neurologist doesn't seem to have enough time to talk about this, or she seems to think I am looking for a way to get out of working. My pain management doctor tells me he is proud of me for how long I have managed to keep this up. I am scared. I talk with my spouse about it and he is scared too, because I am the "breadwinner". I am hopeful that things don't get much worse. Just needed to get this off my chest.
  • Susanne   Nov 16, 2013 5:05 PM
    My dx was Jan'04. For me I was just initially glad that my vision would most likely return but it was honestly an A-Ha moment because it explained so many things in my past. I've been on Tysabri for awhile now and doing better now but not great. Unfortunately none of the other meds worked. I can read again, walk with my rollater, not lose complete control of my bladder, and use my right hand again. So things do get better and perspectives change. It's all good and we have knowledge to work with!
  • Roy A. Teel Jr.   Nov 16, 2013 5:29 PM
    Nice blog post Susan,

    MS does not come with a guide book or owners manual. Much like having children you learn as you go with advice along the way. I was fortunate to have an "old timer" neurologist who diagnosed me May 11, 1995 at the age of 30. He walked into my hospital room where I lay paralyzed on my right side. He took out the MRI prints and slapped them up on the X-RAY board looked me and my wife in the eye and said the following:

    "You see these white spots on your brain? You have Multiple Sclerosis there is no cure and based on the severity of your attack I give you two years to live. Don't bother running around looking for miracle cures there aren't any you will just waste time and money and live a life of disappointment."

    With that he walked out of the room and the nurse started an IV of corticosteroid's and that was that. Since I only had two years I went right into clinical trials. At the time I was diagnosed there only FDA approved treatment for MS was Betaseron. Over the course of the next twelve years I would be a human research subject using 8 drugs. four got FDA approval the others had devastating side affects and killed and injured people giving me thyroid cancer as well as liver and kidney damage.

    The point I want to make is that you have to be your own advocate. You have to know more about your MS then your doctor. You have to stay on top of the newest treatments and studies and be proactive in running your disease. I'm in my 18th year with MS. I'm now on disability due to my MS becoming relapsing progressive. I'm thankful that I took the time through the years leading up to my disability to plan for the inevitability of the disability. I had a great employer sponsored long term disability policy. I was a high level executive so I paid the max in social security tax so when I went out on disability I drew the maximum in SSD benefits. I did all of my advanced planning including setting up living trusts, advanced directives, DNR's, revocable power of attorney for my third wife of eight years. I took care of my funeral planning and made sure that I had life insurance in place to take care of my wife. (and YES you can get life insurance after being diagnosed with MS) when I'm gone.

    Now I have the opportunity to enjoy my life. Yes MS has taken things away from me but it has also given me something that very, very few people ever get in life, it gave me perspective. I am still ambulatory 18 years in I walk every day two miles a day with my wife and our dog. I write articles, novels, short stories and take each day as it comes. Yes MS has caused me a lot of problems but because I planned years in advance never believing I would ever need the insurance or that I would ever make a claim I was prepared for the unknown. Multiple Sclerosis is the unknown, my symptoms literally change moment to moment. But I embrace them as they come and move forward. The greatest gift that MS gave me was the opportunity to hope for the best and prepare for the worst. I can sleep at night knowing that while MS has taken my ability to work in my field it didn't take away my financial security and the only thing that trumps that is the love and support I receive from my wife everyday.

    To all of you with this devastating disease stay in the fight and plan, plan, plan as best you can. Because in the blink of an eye MS can take everything you have and if your not prepared for it the impact can make the MS the least of your worries.

    Peace,

    Dr. Roy A. Teel Jr.
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    A_J_  Nov 17, 2013 4:59 PM
    Such great comments. When I became more physically challenged, I learned who my real friends were. Having help getting in and out of a car, getting dressed in the ladies locker room after water arobics, whatever, people help often before I ask. I repay them with small acts of kindness, like a Starbbucks gift card, a light lunch/breakfast out. The hardest part was accepting and dealing with all the physical challenges. This was a very good blog. I, too, am on SS disability, for about 6 years now. My mother used to say 'the alternative stinks'...did not really understand what she meant, now I do.
  • TP   Nov 17, 2013 9:47 PM
    Back in June 2013, I began to feel numbness in my right torso. By the end of the summer it had started to move down my right thigh. I also experienced what felt like electrical pulses coming out of my feet. I had been tired beyond belief, painful headaches, and neck pain. Went to the ER on Labor Day and was advised to go see a neurologist. Previously I had been diagnosed with Lyme disease in 2002. At that time, left side of my body went completely numb. MRI showed lesions on C4 -C5...spinal tap was normal. This time MRI showed lesions in C4-C5-C6-C7 and spinal tap came back abnormal Lyme test negative. November 11, 2013 I was diagnosed with MS. I am an emotional wreck! It is very hard because I constantly am wondering what is going to happened to me physically. The Sedu-Medrol IV treatments made me feel terrible and my second spinal tap was horrible. Now I have been giving two option for disease management. Gilenya and a new drug Tecfidera. I read up on the effects of these drugs am they seem awful. I am so scared. This diagnosis consumes me every waking minute. Everybody says to you "your strong, everything is going to be ok" well I'm sorry because it sure doesn't feel like it. It is stressful just thinking about it.
  • murphy   Nov 18, 2013 6:37 PM
    I agree with Susan Skoney, kinowing the TRUE facts going in would sure be refreshing and lead to a whole lot less confusion to the ever popular question in the MS community, "Is this an MS thing or something else?"
    I still find myself wondering this over and over.