As a child, I literally had no idea what “living a hard” life entailed. My parents successfully sheltered my sister and I from the harsh realities of life. Fast-forward a few years, now thirteen adult years into multiple sclerosis, and I feel as if I’ve been slapped in the face by reality.
Relapsing-remitting MS is the most common form of the disease. Nearly 85% of people have that form. Most of the medications are for them. This means that people like myself with secondary progressive multiple sclerosis are left out in the dark. Those of us with more progressive forms of the disease have to literally wait our turn. Meanwhile, we continue to need more assistance dressing, eating, and driving for those of us who are still on the road.
A couple of weeks ago I was complaining about my husband having to cut my meat at dinner. Yesterday he not only cut it into pieces, but then had to proceed to feed it to me. That’s what I mean by progressive.
My primary complaint is that we hear more about drug therapy and research then we do about possible cures. I did hear someone say there is no money in cures. Frightening thought from my viewpoint!
As I see it I need to deal with frustration as it surfaces. That’s what I’m doing now. Thanks for being my sounding board.
[…] Picture credit http://www.mynewnormals.com […]
[…] Nicole’s great blog post titled Surface Frustration (https://mynewnormals.com/surface-frustration/) , she talks about her increasing physical needs and the lack of medication options for progressive […]
I am also “progressive.” Yeah, it’s frustrating that all the meds appear to be for RR MS. You notice progression in yourself and there isn’t a damn thing we can do about it. I just suck it up and push on as best I can.
Keep fighting Nic.
Sock, I will if you will!
You can also check out Dr. Terry Wahls page. She is an amazing story of self-recovery as well.
http://www.terrywahls.com
Kim, I know all about her!
Hi Nicole,
Please take a look at my business owner and friend V Capaldi’s story. I’ve sent you a link to one of her more recent videos but you can check out the previous ones to see how far she’s come. She had RR but was “upgraded” to SP at some point. At one point in time, V was blind, had no use of her hands and arms and was injecting daily. She has really made some remarkable changes and is now living (crossing fingers, knocking on wood) fairly symptom free.
http://www.youtube.com/watch?v=M4y8ETz6Jkg
I can’t imagine what it must be like to be in your position. I have worked with several MS clients over my years in personal training and rehab and I know you can pull yourselves up by the bootstraps and prevail. I’ll look forward to watching your forward progress and keep you in my thoughts.
Kim
Kim, thanks for the feedback. I wish you the best in your new dietary endeavors!!!
Nicole, Hi again from New Zealand. Still look forward to reading your posts every week and learning what medical help there is available out there. I have had MS 23yrs now and its still mostly hidden, but I find the fatigue hugely limiting. I hope a previous correspondent, Linda, can advise what the “energy medicine” is that she referred to?? Hugs. 🙂
Aly, Maybe she’ll see this.
Do you take vitamin D supplements? They are well known to increase energy, and as an added bonus for MS patients, vitamin D actually helps many symptoms and possibly even slows progression. I know this sounds like crazy bee sting therapy/magic pill of the day, but I’ve also been to a bunch of seminars in the past year given by different doctors. Every single one of them suggests high levels of Vitamin D supplements.
As for me, I would say I compliment my vitamin D with caffeine, but in the amount I drink, it is probably more accurate to say, “I compliment my caffeine with vitamin D…and screaming kids”
Will lived, that’s good to hear about the vitamin D and energy. I guess I’ll start taking them on again!
I’m Keith, 39 really but my 10 yr old says I’m less mature than him.There is a reason for this.
I’ve been dealing with MS since I was 6 yrs and 11mth. Yes that is a pure illuminated fact.
I didn’t tell my parents but instead I strove to travel(Biggles books) before I……..died.
I goes onto secondary school(12yoa) knowing I had to do really well to achieve my RAF intentions. Then I heard about t he 7 yr degree and I thought ” I could be deid by then”. Hmmm Hmm and omg.
I then learns from my mothers workmate about the Merchant Navy.”This could work” I thought still keeping the reality to myself.
I worked like dried duck. I studied Marine Engineering and struggled on to circumnavigate once. Yes onceeeee but the reason for this is love. I moves to the North Sea to be closer to her and managed to do this for 7 years.
I’m now married to a babe(seriously) with 3 adorable kids.
I live in the knowledge that I’m frankly remarkably lucky as I should be in a mess but I’m not!
http://multiple-sclerosis-research.blogspot.com is a good research blog for one stop browsing on current MS research, and they have had a few posts in the last couple of weeks on the neuro-protective qualities of Laquinimod. Have you heard anything of its use for progressive MS in the states? A week ago, they promoted a study on its use for slowing progressive MS. I know this puts me firmly in the masses trying to provide you hope without enough knowledge to be truly helpful.
The blog also has the advantage/disadvantage of being based in England, outside the U.S. and our FDA. Still, given the length of time it takes for new therapies to hit the market, I try to look anywhere for knowledge which might help. I wish I had more to offer in part out of selfishness as a cure or effective therapy for progressive MS may help me down the road.
Well lived, I always appreciate your input. keep it coming!
I too understand your frustrations! I was misdiagnosed for several years. my diagnosis was confirmed 2 years ago this month. I am working on my 3rd MS treatment trial. as the first two did not agree with me. Please Hang in there Nicole ! I am so glad I found your blog a few short months ago YOU have helped me so very much
I look forward to your new posts..
Pam.That means more than you know. Thanks for coming to the site!
Hi Nicole,
I was recently ‘upgraded’ to very early SPMS.
I am going to participate in this study. I am very hopeful and excited.
http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=8098
Faye
Faye, Let me know how it goes.
YES I HAVE HAD MS NOW FOR OVER 14 YEARS SINCE MARCH 1999! AND I CAN STILL WALK AND DRIVE WITH IT TOO!!! I AM STILL RELAPSING/REMITTING!!! AND THESE BLOOMING NEWSPAPERS WON’T EVEN LISTEN TO ME!
Clare, Don’t get yourself worked up. You are already beating the odds! Go take a spin for me!
Thanks, Nicole. I’m right there with you in the frustration field. My husband still has to cut my food, but I’m able to feed myself — for now. As progression occurs (I think of it as ‘decline,’ since progress has such a positive connotation) I lose a little more of my talents and skills. Don’t you wish there were a team of scientists, who thought not of financial gain, but in actually working towards a cure? I guess it’s a pipe dream…
Muff, I’m easily better in the mornings. I know wrote about this this week, but I that I don’t give much attention to cures. I just do not think it’s worth the effort or heartache. for the first time he had to feed me at a restaurant. It made a big difference that it was a multiple sclerosis function!!
wonderfully written,Nichole. Just picked myself off the kitchen floor–wheels are just around the corner. Thanks for sharing.
Diane, Please walk as long as you can!!!
as a caregiver, i often find myself explaining to excited, then confused, friends that the latest, greatest drug will not, in fact, be of any benefit to my husband (who also suffers from secondary progressive ms). i almost feel guilty popping their balloon….
Terri, No guilt allowed around these parts!
Hi Nicole,
Another great post — thank you so much for sharing your experience with us. Please consider taking advantage of energy medicine. It may be helpful to you as you navigate your healing journey – it has already been helpful to me!
Linda, Yes, I do take something and I also drink a lot of coffee. I’m not so sure how good coffee is though.
Yes, there is fustration, hand in hand with resentment. I also share your feelings of having my husband cut my food, help me dress, do “simple” tasks that I am no longer able to do. I also have SPMS, and the downward spiril is frightening. I’ve been on every treatment with absolutely NO results. There is def more money in keeping our symptoms at bay than there is in finding a cure. This is a sad state of affairs. I was diagnosed in 2001. I just turned 60 last week & you know what I have to look forward to? My neuro has told me for yrs that my MS symptoms should peak at abt age 65! Wow, I can’t wait!
KIM, By peak does he mean did worse?
yes he did! unbievelable isn’t it? 5 more yrs to go till I “peak” with my symptoms.
KIM, I guess in a way it’s good to know? I wish I would have been prepared for what I’m going through now. doesn’t make sense?
What there needs to be is more info & TRUTH for those newly diagnosed so that they are prepared for the worse & not blindsided by it. I knew what the worse senario could be when 1st diagnosed, but truthfully I never expected it too happen too me.
Kim, To be fair I don’t think anyone ever does. chronically ill or not.
Kim. doctors aren’t God. M.S. just can’t be predicted. We can be prepared, but also know that only God nows what the next moment holds.
Nicole, as someone with primary progressive MS I share your frustration. There is so much optimism in the neurological community about the number of treatments available to people with relapsing remitting MS (this optimism may or may not be well-founded, but that’s another issue). Our frustration is doubled when we hear prominent neurologists say things like, ” it’s a great time to have MS.” I know what they’re trying to convey. For people with relapsing remitting MS things are at least slightly better than they’ve ever been. But for those of us with progressive MS, there are no more treatments today than there were hundred years ago.
Mitchell, for some reason that comment brought me little solace.
I feel your pain, Nicole. I know I am blessed to have relapsing-remitting, and I never take that for granted. I wish there was more research for primary and secondary progressive. There is some going on, but it’s never EVER enough. In the meantime, let’s keep praying they find the cause of this MS monster so they can finally – FINALLY- find a cure.
Cathy, thanks for being honest and supportive. thanks for repeatedly visiting the site.
Right there with you. My parents did and still do the same for me. I often feel terrible, when as a child I longed for the day to show them my gratitude by doing things with and for them. Now at 40 they are still doing things for me!!!! My MS is still classified as RRMS, though I know it’s only for insurance purposes!!!
Kshanski, I’ve seen your father. he has spoken extensively to my husband. I know your parents would do anything for you. I can say for sure that your father doesn’t feel slighted.