What’s Wrong With Me?

Lake Placid Olympic podium

Lake Placid Olympic podium

 I recently learned, after my Aunt let it slip, that my parents knew there was something “wrong” with me, when I was an infant. Even though my father was not a fan of doctors, they had me examined, hoping for an answer. Then I began falling, around age 3, tripping over my own feet, frequently spraining my ankles, and cutting my knees. Prompting my father to yell at me, “Stop being so clumsy.”

In kindergarten, the school nurse told my parents that I walked “funny,” because I was mimicking my mom’s polio limp. So, then my sister started yelling at me to, “Stop walking like mom.” Soon, other kids began picking on me, making fun of the way I walked, and no-one chose me for their team in gym class. Then as a teenager, I remember listening from my room, as my parents debated whether they should let the doctors perform back surgery, or force me to wear a cumbersome back brace. My father won of course, and nothing was done for my slight scoliosis.

In college, teachers and other students kept asking me, “What’s wrong with your ankle?” After numerous physician visits, still no real diagnosis. One doctor determined I had weak ankles, another said I had a bone chip in my ankle, and suggested I wear high top sneakers.

Although I had these symptoms all of my life, I didn’t find out what was “wrong” with me until I turned 46. At that point, I started my day by getting out of bed, taking a couple of steps and falling on my face. I kept looking to see what I had tripped on, until finally I realized, I had tripped over my own feet. Because of nerve damage, I didn’t feel my foot catching on the carpet. I didn’t know that I had foot drop. At the same time, stairs were becoming a real challenge. I couldn’t climb stairs that didn’t have a hand rail. My husband saw me on my hands and knees, trying to climb stairs, and insisted I see the doctor again.

After a neurologist ruled out MS, MD, Lyme disease, and spinal stenosis, I researched my symptoms online again and asked to be tested for CMT1A. The Athena diagnostics genetic test proved positive. I finally had a diagnosis. Charcot-Marie-Tooth (CMT), a degenerative neuromuscular disorder, robs people of normal function of their arms, legs, hands & feet. Rarely, like in my case, CMT can affect your voice and breathing as well. Although millions world-wide, 1 out of 2,500 have CMT, most have never heard of it.

Now, my friend, Amy, is participating in the Second Annual CYCLE 4 CMT, to raise funds for a treatment of CMT. Please support my friend Amy, who is always helping others, in her goal of raising funds to fight CMT.

Visit Amy’s page and donate here: https://www.firstgiving.com/fundraiser/amy-cherkosly-1/CYCLE4CMT

Donating through this website is simple, fast and totally secure.

I’m going to the event to support Amy and the other athletes. Here’s my fundraising page:

The CMTA is close to finding a medication to stop the progression of some types of CMT. For more information visit: www.cmtausa.org

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Block Island Spasms

National Hotel Block Island

National Hotel Block Island

We awoke at 4:45 to start our day at Block Island, RI. Tim, our bus driver, greets us with “I know you. Can I give you a hand lovely lady? Ready for a fun day at Block Island?” Jim gives me a quizzical look and says, “I voted for the Mets game, but I got overruled.” I responded with, “We’ve watched the Mets lose millions of time, we don’t need to see that again.”

The driver gives me a hand, while Jim is behind me, in case I needed a boost up that first high step into the bus.

All day Tim helped anyone, who needed help exiting the bus. I appreciated his help, since sometimes my husband, so excited about where we’re going, takes off running. Occasionally I remind him, “Don’t forget me.”

On the way home, Jim said, “That bus driver has a thing for you.” I laughed.“No, he just remembers me from the trip with my mom to the Berkshire Botanical Gardens.

Berkshire Botanical Gardens

Berkshire Botanical Gardens

How could he forget us, me with leg braces and cane, trying to help my mother with her “wheelie,” as she calls her walker.

After a fun day on Block Island, including a filling lunch of baked scrod with asparagus, at the Historical Hotel overlooking the ferries coming & going, the bus ride home proved difficult. Painful leg cramps and muscle spasms began shortly after we settled in. Jim moved to the open seat in front of me, giving me space, to stretch and massage my legs.

Fortunately, half way home we made a dinner stop, enabling me to walk around, so I could attempt to work out the kinks. Also, I was thankful the folks ahead of us were a little slow getting off the bus, so I could stomp my legs and feet to wake them up before I disembarked.

For many on the trip with us, although some much older than I, the little bit of walking and climbing the Ferry stairs did not slow them down, like my CMT legs did.

Even so, I will not stop traveling, nor will I avoid places with stairs. I will not stop walking, until I can no longer take another step. So, we need to find a drug to stop CMT leg cramps and muscle spasms. We need to find a drug to stop the progression for the millions of children, who have lost the normal function of their legs and arms. Many more people suffer from CMT than from MS, ALS and many other diseases that everyone knows about. That’s why CMT Awareness Month is so important, to help those, who have been misdiagnosed, or like myself, go undiagnosed for years wondering what’s wrong with them.

For more information about CMT visit: www.cmtausa.org

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Flying Porta-Potties

Today, I almost got killed by a flying Porta-Potty. Driving home from my mom’s on I-90 towards Albany, as I exited onto the ramp for 787 rounding the curve, I couldn’t believe my eyes, a flying pink Porta-Potty coming right for me.

pink porta-potty

The car ahead somehow managed to swerve around the portable toilet. While the milk truck directly in front of me nearly jack-knifed, and wound up stopping across 2 lanes of the highway; I managed to steer to the right, avoiding smashing into the side of the truck. Unfortunately, that was the same direction of the Porta-Potties flight, coming right for me.

Luckily it stopped inches before taking me out, and luckily no-one rear ended me or the milk truck, as we waited for the driver to rescue his escaped John.

Over the years, I have spent a lot of time worrying about a lot of things. Such as will we have enough food for our BBQ. And then we have enough leftovers for ten marching bands.

On our vacations in Aruba, I worry about becoming a beached whale again, as I struggle to emerge from the sea. Having CMT makes that step up onto the sand at the same time that the tide is pulling me backwards pretty tricky. But these past few years our Aruba friends have come to my rescue, and help my husband drag me safely ashore.

Sometimes I worry I may wind up in a wheel chair some day. And after seeing how difficult this is for my step-father, it concerns me quite a bit. So, I am determined to keep exercising to maintain whatever strength I have left.

Besides, throughout my life I have found that I’ve wasted way too much time worrying about a lot of things that never happen. Now it seems that what I should have been worrying about, is getting done in by a flying Porta-Potty.

Posted in Charcot-Marie-Tooth disease, CMT, flying Porta-Potty, Health CMT, neuromuscular disease, peripheral neuropathy, personal stories | Tagged , , , , , , , , , | Leave a comment

CMT Awareness Month Challenge

I took a break from writing this blog, but since September is CMT Awareness Month, I felt I needed to step up and contribute something. We’ve all seen the ALS Awareness Bucket Campaign and how ALS successfully raised over $109 million, well now comes the CMT Awareness Challenge. You are 10 times more likely to know someone with CMT than you do with ALS. I’ve been nominated for this challenge to write 3 things that I am grateful for relating to CMT, over the next 5 days.

I believe the point is to help people understand what it’s like to have CMT, and let them know where they can donate to find a treatment to stop the progression.

Balloon Festival Glens Falls, NY photo by Melinda Lang

Balloon Festival Glens Falls, NY photo by Melinda Lang

First a brief explanation of what CMT is. CMT, or Charcot-Marie-Tooth disease, a genetic progressive nerve disorder, robs those affected of the normal use of their arms, legs, hands and feet. Nerve damage leads to muscle loss, which leads to falling, difficulty walking, weakness, fatigue, hands that won’t work. Other signs and symptoms include: numbness and tingling in extremities, pain, hammer toes, flat feet or high arches, or foot deformities requiring surgery, scoliosis, AFO’s, leg braces, canes, walkers, wheel chairs.

There are many types of CMT with different manifestations. In rare instances, some may include phrenic nerve involvement that can lead to breathing difficulties. And symptoms vary widely even among families. For example, I know of a daughter who runs marathons, while her brother uses a wheel chair and needs a ventilator to breath.

I don’t want to scare anyone, I also know CMT’ers in their 60’s, who are managing quite well. However, I am having trouble breathing; that’s why I mention it.

So, the challenge 3 things I am grateful for relating to my CMT:

  1. I am grateful for my husband and best friend, who continues to love & support me after 
almost 31 years

  2. I am grateful for my 2 kitties, who keep me active chasing after them, and flexible by picking up their toys

  3. I am very grateful that I can still get back up after I fall.

What are you grateful for? Take the CMT Awareness Challenge! It’s your turn to share with your friends and family.

Anyone wishing to donate to find a treatment to stop the progression of CMT may visit here:

For more ideas and to get your FREE survivor guide visit here:

Posted in AFO, ALS, Awareness Month, Charcot-Marie-Tooth disease, CMT, CMT Awareness Month, CMTA, Fundraising, Health CMT, leg braces, neuromuscular disease, peripheral neuropathy, personal stories, phrenic nerve | Tagged , , , , , , , , , , , , , , , , , , , , , , | Leave a comment

Taking a Break

Sorry I have neglected posting here for a while. As sole caregiver for my mom and step-dad, I took a much needed break from CMT to help look into assisted living facilities for my step-father, in between visiting doctors, pharmacies and grocery shopping. We’re exploring ways to finance the $12,000 per month cost of assisted living, and trying to find out more about obtaining home health care, in the mean time.

St. Patrick's Day Dinner with mom & dad

St. Patrick’s Day Dinner with mom & dad

Eight months ago, my parents moved closer to me for better health care access, as their home is in the country and all their doctors and hospitals are at least a 45 minute drive. After months of enjoying having them closer and spending more time together, including weekly pool aerobics class in their heated pool, sadly they are moving back home this Thursday.

On the contrary, both my mom and my step-dad are excited about moving back to their home at New Skete Community, where they attend daily liturgies and mom is looking forward to tending her sanctuary gardens again. I however, worry about them living in such a remote, rural location, where it takes a 1/2 for am ambulance to arrive, 45 minutes to drive for groceries, and an hour drive for me.

So, I am not looking forward to the early morning drive on Thursday to bring my step-dad back toCambrige, while my mom helps the movers pack up what’s left to return to NewSkete. Over the last few weeks, Mom and I already unloaded a few vanfulls of their belongings and mom cleaned, while I trimmed perennials and raked the garden beds.

Emmaus House Garden Terrace

Emmaus House Garden Terrace

It was nice having them so close, but they will be happier in their own home for as long as they are able to manage it, with whatever help I can provide. Some days I feel like I need to go into assisted living.

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NEW ART INSTALLED at Art de Cure Gallery for CMT

Patricia Hoffmeister, Joanne Van Genderen and I took down the art work from the Starry Night show at the Christine A. Hook Gallery at CPO for Charcot-Marie-Tooth (CMT) neurodegnerative disorder, and hung the new art work for our next show,“MULTIPLICITY,” 
which runs from  JANUARY 10, 2014 through JUNE 13, 2014.

This Art de Cure gallery is
 located at 149 South Lake Avenue  in Albany NY at the Clinical Prosthetics + Orthotics (CPO) office.

Sale of the art work 
benefits the Charcot-Marie-Tooth Association (CMTA), with 60 % of proceeds going to the artists and 40 % to the charity.

Gallery and all events are open to the public during office hours Monday-Friday 9 am-5pm
. If you would like to display the art in your home, all pieces are currently for sale through June 13, 2014.

View more  artwork here: http://www.artdecure.org/art-de-cure-galleries/clinical-prosthetics-orthotics-cpo

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Art de Cure raises over $22,800 for the Charcot-Marie-Tooth Association.

                              by Melinda Lang, Rph Upstate NY CMT facilitator

Imagine walking into your doctor’s office and instead of facing blank walls, you are surrounded by a gallery of original art work to enjoy, while you wait. Art de Cure, a collaboration between art and medicine, provides such galleries in medical offices throughout the Capital region in New York, while raising money for charities.

On December 5th, 2013, the third Starry Night for CMT Art de Cure gallery reception and silent auction, which took place at Clinical Prosthetics + Orthotics (CPO, raised over $2, 800  for the Charcot-Marie-Tooth Association (CMTA), adding to the $20,000 previously raised (with matching funds from a board member of the CMTA). At this event, the gallery was dedicated in honor of talented artist, Christine A. Hook, who volunteered as gallery coordinator for a year before she passed away.

Jacky Watsky dedicates the Christine A. Hook gallery at CPO

Jacky Watsky dedicates the Christine A. Hook gallery at CPO

Jackie Watsky, president of Art de Cure presented a plaque, which will remain on display at the CPO gallery which states, “The Christine Hook gallery to benefit CMT. This ADC gallery at CPO is dedicated to helping people with Charcot-Marie-Tooth Disease and sharing Christine’s love of art.”

The mission of the CMTA, a 501(C)(3)nonprofit organization founded in 1983, is to generate the resources to find a cure, to create awareness, and to improve the quality of life for those affected by Charcot-Marie-Tooth (CMT) nerve disorder. CMT, which affects 1 out of every 2,500 people, damages peripheral nerves connecting the brain and spinal cord to muscles and sensory organs. This nerve damage, or neuropathy, leads to muscle weakness and wasting, in legs, feet, arms and hands. For more information visit www.cmtausa.org

Art de Cure depends on volunteers to establish and coordinate the galleries, hang the art work, plan the events, organize and maintain the financial paperwork and web site. Interested volunteers can contact Jackie Watsky, President of Art de Cure at  Jackie@artdecure.com

Medical practices interested in hosting an Art de Cure Gallery in their office and artists wishing to participate can contact Art de Cure at Jackie@artdecure.com.

Posted in art, Art de Cure, Charcot-Marie-Tooth disease, CMT, CMTA, fundraiser, Fundraising, Health CMT, neuromuscular disease, peripheral neuropathy | Tagged | Leave a comment

2013 in review

The WordPress.com stats helper monkeys prepared a 2013 annual report for this blog.

Here’s an excerpt:

A New York City subway train holds 1,200 people. This blog was viewed about 5,300 times in 2013. If it were a NYC subway train, it would take about 4 trips to carry that many people.

Click here to see the complete report.

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Disney Ticket Raffle for Charcot-Marie-Tooth disease!

disney tickets
In conjunction with the Starry Night benefit for CMT in Albany, NY, you can once again try your luck on our raffle for four one-day Park Hopper® tickets for use at the Magic Kingdom®, Epcot®, Disney’s Hollywood Studios™ and Disney’s Animal Kingdom® Park Florida. (valued at $496)

The tickets are valid during normal operating hours and are good through September 24, 2015.

The drawing will be held on December 20, 2013, just in time to make it a great Christmas gift, and the winning number will be posted at
 www.cmtausa.org/url/disneywinner  on December 21, 2013.

Ticket sales end December 20, 2013, so register and get yours now!

Also, don’t miss our Starry Night for CMT Art de Cure Silent Auction reception with complimentary food & wine tasting.
For more information visit here : www.cmtausa.org/url/starrynight
Starry Night flyer

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SAVE-THE-DATE-December-5, 2013-Starry-Night-For-CMT

New Art show installed at the Art de Cure gallery for CMT at CPO (Clinical Prosthetics+Orthotics) benefitting the Charcot-Marie-Tooth Association

SN postcard

NOW SHOWING:   “Gracelines”

DATES:  JUNE 14, 2013 – JANUARY 10, 2014

Starry Night for CMT Reception and Dedication of gallery in memoriam for Christine A. Hook on December 5, 2013  Thursday from 4-7 PM. Featuring Silent Auction of Original art work, jewelry, gift baskets, gift cards and complimentary light fare.


You can view some of the art work online at:

If you would like to display the art in your home, all pieces are currently for sale through January 10, 2014. Stop in to view the exhibit. Bring some new artwork home today.

Gallery and all events are open to the public during office hours Mon-Fri 8am-5pm.    The Art de Cure Gallery for CMT is located at CPO 149 South Lake Ave. Albany, NY.

Gallery coordinators Joanne Van Genderon and Melinda Lang

Starry Night Event website:

Art de Cure, a 501 (c) 3 formed in 2010, is a collaboration between art and medicine. Art de Cure is a unique concept which brings art to an audience not likely to explore art galleries. Galleries are housed in medical practices and the work of regional artists is on display. The host practice chooses the charity that will benefit and Art de Cure curates the shows.
The galleries are permanent with multiple shows and receptions scheduled each year. The Art de Cure Galleries are open to the public, and to the practice’s patients during regular office hours.
Be A Part of Art de Cure

Artists: If you would like your work to be considered for inclusion in the Art de Cure Gallery, for the CMTA please submit up to 6 digital images, an artist statement and bio to: Jackie@artdecure.org- See more at: http://www.artdecure.org/#sthash.AX0B5KZ7.dpuf

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