London Calling: How I Learned to Stop Worrying and Love (the) Gigi!

I went to Europe. Really. I did. I never thought it would happen. I mean, with our enormous student loan debt we never have extra money for luxuries such as a vacation. But lucky me! I’m the granddaughter of Beatrice Goldstein Kaplan. She came to America in the 40s and left all of her wonderful family in London for us to play with.  And as a result we are in no short supply of fabulous British cousins always telling us about their comfie spare rooms and how nice we will look in them. But without tickets to get across the pond it didn’t even seem worth thinking twice about.  So when the opportunity came up to think twice, I realized that money wasn’t the only reason I resisted thinking twice.  No, the money (or lack there of) was a helpful way to avoid the other reason for not considering this vacation. That being the one that hides underneath every moment when living with an incurable, unpredictable, potentially progressive disease.

About 3 years ago, my 20+ year old MS started acting out beyond it’s normal behavioral issues. Symptoms heightened and I shortened. (And I’m only 5’2″- so I don’t have much to work with here!) Over these past years I’ve been challenged by constant dizziness, greater limitation in my ability to walk and worse of all, an inability to stand for lengths of time. Like- for example- long enough to cook dinner. But as all of us with MS do- I found new ways to cope. Not-to-say that any of it is easy. These changes are always emotional ones. But when all is said-and-done, I have found a way to live within my limits-de-jour. So long as my expectations of the day are low and I have the “bright-side” handy when I need to break it out, – I can deal.  Sorry I left the kitchen such a mess honey…you know….i have MS 😉

So when the possibility of venturing across the pond became a reality I went in to high-gear worry. I would have to come out of hiding and face the fact that I am now “it.”

Not long after our tickets were booked we started realizing that we have other close connections on the mainland. (that being Europe) Our lovely former neighbors moved to Berlin and our friend knew someone who has a great place to stay in Paris. Now how could we possibly make that voyage and not take advantage of these opportunities. But in the back of my head I’m thinking, If we don’t do it now we may not have the option when I’m less able. Oh wait. Not when; should I become less able. (Phew! Found that bit optimism in my back pocket!)

And though my adorable college professor husband doesn’t earn the big bucks (“even though we aint got money“) we do have summer vacations! So we reserved August for what we hoped would be an amazing trip.  And it was all that; for reasons planned and unplanned, expected and unexpected. And I learned a lot more than the detailed history of the Berlin-Wall falling or how something called a Shandy is a great way to experience an English Pub with an actual beer product in hand.

* * *

Tune in next time for the second episode in the series “London Calling or How I stopped worrying and love GiGi” when I will discuss my experience with MS, accessibility in Europe and my new love for GiGi – replete with photos evidence for all of the afore mentioned.!

(BTW: If you subscribe to this blog- you will be notified of when that happens. I’m thinking this weekend.. but who knows!)

July 4th 2009 was so significant to me- July 4 2012 we even more so!

MS~LOL: Multiple Sclerosis a Life Of Learning

For the past 20 years, the 4th of July has been all about dependence for me. While the nation celebrates its independence in the stifling heat of July, I’m inside. Like so many who live with Multiple Sclerosis– heat is my dictator, my oppressor, my King of England. And while the summer holds many days that are challenging, the irony of summer’s opening holiday leaving me reliant is a wound that never quite heals. I know that whatever the invitation is, chances are good that it won’t be an option for me. So I sit in my air-conditioned room searching for alternatives on this day of independence, working hard to accept the parameters of my dependence on the arm or the stick that supports me through life.

For the past few years I have found the emotional fortitude to watch my daughter in the town parade. Sitting on the chairs…

View original post 606 more words

Would Ubelieve it?

Have you ever heard of I hadn’t until it was recommended to by our resident graphic designer, Mark Miller of Aesthtica Studio fame. (He is one of us, btw!)  After setting up my first order, I was immediately contacted by “Ucommunity” who let me know that Uprinting  offers non-profits $250 worth of free printing and a 10% off there after. All we have to do is spread the word.

So, if you are a non-profit or play one on tv, check them out. We have to rally around those companies with a conscience!

an MSSoftServe sponsor~

MS SoftServe-Gosh I wish I had extra cash to donate…

If you would like to make a $25 contribution to MS SoftServe, but just don’t have the extra cash, you are in luck.  The Find a Cure Panel will do just that. FACP is a place for people who are living with MS and other diseases as well as those who care for them a chance to express their opinions and needs.

So, if you’re living with it or a caretaker of someone who is, check out this link for the Find a Cure Panel’s site to learn more. After you are assured about the anonymity and the value in providing your voice to this effort, go the extra 2 minutes to fill out the brief survey and help to make MS SoftServe available to all of us who need it!  $25 doesn’t make a little difference.. it makes a HUGE difference. So vote early and often! 😉

Oh, don’t forget to select your non-profit of preference (MS SoftServe) … you’ll have to scroll all the way down (MS SoftServe) the alphabetical chain (MS SoftServe) to Multiple Sclerosis and click on (MS SoftServe) that little circle next to your choice (MS SoftServe).

It’s that easy! 🙂

Thank you!

~Amy G.

MS You’re Never Gonna Win…

My daughter Madeline wrote and composed this song about me and our lives with MS.  I’m one lucky woman!

Can you believe what I feel right now? Why can’t I push the darkness down…
Trying so hard to let it go, but life- just aint that easy.
Working so hard to leave the stress, how did I get in this ugly mess.

Just never ever ever gonna let it go, but life just aint that easy~

MS, You’re never gonna win, Hold in there mom, I’ll be there to help you.
MS –You’re never gonna win, Hold in there mom, I’ll be there to help you.

So many scars all over your brain, why can’t your neurons work again?

Waiting for scientists to find a cure~.

MS, You’re never gonna win, Hold in there mom, I’ll be there to help you.
MS –You’re never gonna win, Hold in there mom, I’ll be there to help you.

I will stand by you, until the end, as the darkness fades away.
I’ll be there with you to say….

MS, You’re never gonna win, Hold in there mom, I’ll be there to help you.
MS –You’re never gonna win, Hold in there mom, I’ll be there to help you
MS, You’re never gonna win, Hold in there mom, I’ll be there to help you.

I’ll be there to love you, I’ll always be there for you.
We win!

Advocate Schmadvocate!

I’ve always said that it is a cruel joke to expect a person living with MS – the chronic incurable disease that changes over years, months, heck – even days – to be his/her own advocate. I mean c’mon! How are we supposed to by-pass the emotions that are in-and-of-themselves paralyzing, to educate ourselves about our version of this disease that is always changing? (Read more and tell me how you balance it! I need all the suggestions I can get.)

Oh, and while I have your attention:

Tell me, do enjoy reading these posts? Do you find my writing witty, engaging, annoying? If the first two adjectives are true, take a moment and subscribe to MSLOL. With this status will get a special email telling you that you are about to miss something; something that might make your day better. And here is the cool part. You probably won’t be receiving a note more than once a month. I’m not one of these every week bloggers… No, I spread myself a bit too thin for that. So if I’m posting, it’s important. (at least from my perspective!) And lucky you. You don’t even have to scroll to the end of that column on the left. The link is just under the little paragraph “about amy.” There, no lower. You see it? It’s under “Get my email” and it says subscribe to MSLOL. I know, that doesn’t make sense… but it will get you where you need to be.

Oh, and if you forgot what you were supposed to be doing… its reading and commenting on this little post on Health Central’s MS site!

Your welcome!


Way to give! (or how to donate $25 without taking out your wallet)

You know all about MS SoftServe, right??  If you’ve somehow gotten to my blog and haven’t heard, I bestow upon you a silly amount of links! (video, blog, the staging ground for the site in progress and the cause on facebook.)

Are you still with me? Do you feel informed? Good.

MS SoftServe is making some amazing progress with grants applied and (some) awarded, with a spring campaign in the planning , and fundraisers on the schedule. At the rate we are moving.. this site will be available for use before 2012 becomes 2013.

I know, I know, you are really behind this effort. You know it will make a difference for PWMS and those who love (or even like) us. But unfortunately for many of us, making a donation is just not in the budget. Well lucky you (us).  The Find a Cure Panel is your ticket to karma (and so early in the year!) All you need is a few extra minutes to fill out an anonymous survey and Find a Cure Panel will donate $25 to MS SoftServe in your name.  What is  FACP you ask? . Here is the short version: FACP empowers people to impact on research. Click this link  for details.

Once you’ve determined that this org is legit and you’re ready to sign on to furthering the understanding of MS for the researchers who are dedicated to finding  a cure (not to mention the healthy donation to MS Softserve!) send an email to and put MS SoftServe in the subject line to make sure the cause you care about is getting the proper props!

Then sit back and enjoy the rest of 2012 with your increased karma… making this information contribution a win/win situation!



Destination Unknown

While you are in the midst of pre-holiday scramble, take a moment to read my latest essay on Health Central’s MS site. My seasonally non-specific December post will not only give you a break from the stress of the holiday prep crazies, but it will also put your life in to a comparative perspective that may be comforting at the time of year when we all take stock. But that’s just my speculation. Go decide for yourself.  And return to your previously scheduled “holiday crazy” with a new perspective~

Destination Unknown

If you are reading this post, chances are good that you’ve been diagnosed with MS and have your very own diagnostic tale; a “Where were you when you heard about Kennedy, Lennon, Cobain” story. It’s often the first exchange when two people with MS meet.  “Diagnosed, 1988, only took one week after my first symptom,” or “Diagnosed last year after a decade of unexplained symptoms and dismissive doctors.” No matter how our stories differ, that day puts us on the same train; the one with no clear destination or announcements along the way to keep our bearings. (more)

Hey Blog! Guess what I’m doing today~

You’ll never guess blog, so I’ll just tell you. I’m going to talk all about you…that’s right, you! Ms. Twyman teaches writing to 5th graders at Bradford School. How do I know this you ask? Madeline is in the class, silly! Anyway I’m so excited because I will have a chance to tell all of the students how amazing you are!

They don’t know about blogging yet, but I think that after I tell them, some of the kids will want to start one of their own.  I don’t have to tell you about how cool it is to put words up on the Internet for people to read. You know first key.  But they haven’t done it yet. They’ll learn how exciting it is to posting your thoughts and feelings, your photographs, details of your vacation, your best anime drawing or your creative stories. You could even put a recipe up there…or maybe even a dream you want to talk about. The possibilities are endless.

You know how I love writing. It feels so good to talk about things that I’m feeling while living with MS.  I’ve had MS for over 23 years… and I have a lot to tell people who are just diagnosed. I have stories that will help them feel better. I can even make them laugh which is the best feeling ever. How do I know they laugh you ask? Because the write comments telling me so! But sometimes I write about things that aren’t MS. Sometimes I write about what an amazing daughter I have 😉 or even a poem.

Don’t worry blog, I won’t forget to remind them about safety on the Internet.  They all know a lot about safety already, but I’ll tell them about a few sites that are secure, that their parents can look at if they want to.

So, I’m not going to tell you everything. I want some of it to be a surprise! Just thought I’d keep you in the loop! If you feel your ears buzzing later, you’ll know why!  I’ll tell you how it goes!


Your parents can help you find safe spaces to blog. This is a link to one for classrooms and schools.

Turkey, check. Cranberry sauce, check. Medical marijuana… priceless

Join us tonight for MSLOL Radio’s new show! (we are now part of Multiple Sclerosis – Unplugged Radio along side Stu’s Views and MS News!) On tonight’s episode we will explore the afore mentioned topic. No, not your thanksgiving menu! We are talking about the priceless part!

It’s all about medical marijuana and how it’s an effective treatment for many of us living with MS. There will be some very special guests- including a doctor who prescribes it and a chef that will tell us how to cook this therapy in to some very tasty dishes!

So Join me and my co-host Deanna Kirkpatrick for what will be a very informative and entertaining evening.

Be sure to bring some pre-holiday tastings just in case you get the munchies! 😉

If your too busy in the kitchen to listen live, download the podcast for later…. but make sure you listen to it before the tryptophan sets in!

Here’s the link. Listen on-line or on the phone. At 8pm EST and 5pm PST.

The call in number is: (347) 215-9265. Press #1 if you want to say something or ask a Q.!