Tuesday, March 31, 2015

The Hardest Thing about Having MS

I was interviewed earlier today by a health marketing company. Don’t look for a magazine article about me, though. These folks are conducting research on primary progressive multiple sclerosis (PPMS) by speaking with patients. The marketing company paid me for my time with a $75 gift certificate from Amazon.com. I must remember to buy something fun with that money, not just put it in the pot and have it pay for my next order of printer ink.

The interviewer asked lots of questions, but the only one that stumped me was, “What would you say has been the hardest thing about having MS?” So many good choices – which one to pick? I fumbled and stumbled and didn’t give a very good answer. But after thinking about it for a while, I know what I should have said.

For me, the hardest thing about having MS is that my future has been stolen. I received my diagnosis four days after my thirty-eighth birthday. My life was pretty sweet at the time. I had an amazing wife, two beautiful children, a career on the upswing, all the man-toys I wanted, and so much more. Even with that success, I felt that my best days were still ahead of me. I no longer feel that way.

Quick disclaimer – I know this isn’t terminal cancer, ALS, or Alzheimer’s. Those diseases don’t only steal your future, they stomp all over it. But PPMS is no lightweight.

I always had big plans of where I wanted to be in five, ten, or twenty years. I wasn’t na├»ve. I understood that these plans would probably never play out exactly the way I imagined them, but my vision for the future was optimistic, and rightfully so. Chasing these dreams was a big part of what motivated me to get out of bed each day.

I still plan for the future, but only in terms of months, because I can’t imagine what life will be like years from now. How much longer will I function like I currently do? Will I always be able to live at home? Will I remain a contented person forever?  I can’t know. I mostly try not to think about it.

Being the glass-half-full kind of guy that I am, the fact that MS has stolen my future does have one benefit. I now live more in the present than I used to, one day at a time and all that jazz. This is a good thing.

Today is full of challenges, but I’m meeting them. It’s tomorrow that scares me.

What’s the hardest thing you’ve had to deal with because of MS (or some other challenge)? Do you feel MS (or anything else) has stolen your future?


Note: If you have PPMS and you would like to take part in this research, let me know.

12 comments:

  1. I have 2ndryPMS since forever but diagnosed 2012, April. I am 45.. I do not feel that MS has stolen my future or anything else as that would diminish my best treatment for the disease, s stellar attitude. Subject to change however, we shall see. The hardest thing to deal with... cutting a steak.

    JE

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    1. JE, it can be the little things, can't it? I remember when I stopped cutting my steaks. That was a sad day. But I'm glad your attitude remains positive. That is so important.

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  2. I can recall symptoms back 16 years and I've never remitted, only progressed, so I believe I am PP, even though that progression has been much slower than others are experiencing. I still feel I have a future and am doing whatever I can to be able to enjoy the present and plan ahead.

    My recent vision problems, which may or may not be MS-related, have been my biggest challenge. They came on suddenly in December, and I lost my ability to drive in 3 days. Within a month I had gotten that back but new problems have arisen and I can see that I might have to stop driving once again, within a year. I remain upbeat by concentrating on what I can do to deal with this, and by doing things with people I enjoy, including work, volunteering and friends.

    I do freak out from time to time but I don't like to stay there very long. Ditto feeling angry, scared, or grumpy. So I wallow around for a bit and then move out of it by thinking of what I "can" do and planning for something I enjoy. I know, I know, I'm disgustingly cheerful but I can't help it, thank goodness.

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    1. Daphne, I've been fortunate enough not to experience vision problems. I sympathize with those of you who have. Thinking what you can do is a great way to pull yourself out of a funk. Congratulations on being disgustingly cheerful!

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  3. I don't try to envision the future -- it's frightening; however, too often, I visit the past. Seeing all that's been stolen from my life makes me sad. What's the hardest thing about MS? For me, it's the daily struggle to overcome fatigue, which affects all my other symptoms.

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    1. Muffie, You make a good point. Looking back is no more reassuring than looking ahead. Best to stay in the moment. Fatigue is definitely an all-encompassing symptom, and a leading candidate for the worst thing about having MS in many MS patients.

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  4. I enjoy your blog because it always puts new thoughts in my mind. The hardest thing about my MS is the burden I have placed on my spouse.

    MS struck me after a stretch of good luck left me asking God to keep my good fortune going. Not a smart move on my part.

    I am not into history so I do not look on the past. I have too much on my plate now to think about the future. I try just to deal with the day at hand. Inability to type, pain, difficulty with transfers, spasms, thermoregulation problems, loss of my dominant hand....etc.

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    1. Anonymous, I'm glad you enjoy my blog. It's noble of you to list the burden you have placed on your spouse as the hardest thing about MS. Any of us with spouses can identify.

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  5. I, too, have PPMS dx: 10.09.06. We have a few other similar characteristics: I am male (45), am married to my high school sweetheart, we have a teenage son, dog, etc.. I am very familiar with MS because my mother had it when I was a child, she died when I was 12. PPMS is so much more severe it's very difficult to find another "progressive" with which to share the tale. That interview sounds interesting and I'm all for promoting awareness of us, the other MSers. By the way, my name is Brian.

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    1. Hello Brian! We do indeed have have much in common. And you are right, us primary progressive's are the black sheep of the MS family. 10 FDA approved treatments for relapsing and zero for primary progressive

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  6. It's about money, Mitch, not science. The MS dmd's earn BILLIONS, not millions, BILLIONS per year. Are you familiar with New Zealand's MIS416? It's in stage 2 trials for secondary progressive.
    You mentioned the gamut of med's for R/R and zero for PPMS. I was laughing when Gilenya came to market and the relapsing community was rejoicing about taking a pill versus giving yourself a shot or receiving an infusion. All the PPMSers I know would take a spinal tap each and every day if they could walk again. A little redness or welt from a shot is nothing, it's all about your perspective.

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    1. yes, the system is inherently flawed. Pharmaceutical companies have a fiduciary duty to maximize profits for their stockholders. Patients need effective and cost-effective treatments for diseases. Often times those two goals are in conflict not in harmony. Something's gotta change.

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