STAR bus available for those with disabilities

Where I live we are fortunate to have the STAR bus (Special Transit Available by Request), a Para-transit service for people with disabilities who are unable to use the regular bus. The STAR bus is generally smaller than a regular bus, provides door to door transportation to a given destination on an advance reservation basis and the fare is $2.50 each way.

First, to be eligible you need to fill out a simple application. The decisions are based on the American with Disabilities Act (ADA) regarding a person’s use of public transportation. Reservations are required for all STAR trips and may be made up to 14 days in advance, but no later than 5PM the day before your planned trip. If assistance is needed from the door it must be confirmed at time of reservation.

I had been driving my mom to various doctor appointments and to visit my step-father at a nearby nursing home. A friend recommended my mom try STAR before we went on vacation, and we hoped this would be a good option for whenever I was not available to drive her where she needs to go.

The first time she made arrangements, a STAR car showed up right on time and drove up our driveway. The driver got out and helped mom into the front seat, after placing her roll-later into the trunk. According to my mom, the woman driver was very pleasant chatting all the way to the nursing home. Return trip went just as well.

The second time she called STAR, a small bus showed up at the bottom of our driveway, just 10 minutes late. I helped mom down the driveway. Then the driver got out and assisted her into the back seat of the bus, as another rider already sat in the front. STAR service is a shared ride, meaning they may pick up and drop off other customers during your ride. Mom said they picked up another passenger, which took another 20 minutes. So, when she arrived my step-father was outside waiting for her wondering where she was, worried they would miss lunch.

While we were away on vacation, she reserved a trip to get a CT scan. Instead they drove her to her usual stop, the nursing home. Not sure how that happened. However, after enjoying a visit with my step-father, she talked with a nice young man on the return trip home and rescheduled the CT scan for after we returned from vacation.

Tonight, after dinner my mom mentioned she had called for the Star bus for tomorrow morning and asked them to come up the driveway. Our driveway is a bit of a hill, but STAR’s policy is to park in the road. I reminded mom that we talked this morning about not venturing out into the predicted snowstorm, and my concerns about falling on the thick ice at the end of our driveway.

I think she believes I worry too much, so she went ahead and booked the trip. After pointing out that either my husband or I would have to get up early to clear the snow from the driveway and the ice was too thick to chip away, she agreed to call back & cancel.

Still, we were awakened this morning honking horn. Just as I was throwing my robe on & trying to remember where I left my boots, so I could run out to tell the driver we had called to cancel, I heard her phone ring. She told them she had already called to cancel the ride and the boys took off.

So even with a few glitches we are lucky to have this service in our area.

For more information about STAR (Special Transit Available by Request) click the following link.  https://www.cdta.org/star-program#sthash.3fHJSJF2.dpuf

or check with your local bus company to see if they offer similar service.

3rd Annual CYCLE 4 CMT

My good friend, Amy, has convinced me to get back on a bike again, by joining her in participating in the 3rd annual CYCLE 4 CMT on August 28. Last year, my husband and I went to this event to support Amy, raise some money for CMT, and enjoy the after party.

This year, thanks to Amy’s encouragement, I will ride the shortest route, which is 6.5 miles. Even if I can only make it to the end of the road & back, I am determined to have fun on a bike again. I haven’t been riding in a while since my CMT symptoms: weak legs, loss of balance, leg cramps and numbness and tingling in my hands, have been worsening.

Last year, although we spent more than planned on the silent auction items, (I really thought someone would outbid us on a couple of items) my husband and I had a lot of fun at this event. It was great to see friends from the CMTA, who I met at CMTA conferences in Washington and Chicago, while I was facilitating the Upstate NY CMT group.

I am looking forward to seeing everyone again this year, and also the World-Renowned CMT Experts: Drs Michael Shy, Steven Scherer and Rup Tandan.

I cannot wait to enjoy the breathtaking views of Vermont’s Green Mountains and the Lake Champlain area, while fundraising for a treatment for CMT.

If you would like to support finding a treatment for CMT, you can make a donation on my fundraising page: http://www.firstgiving.com/fundraiser/melinda-lang/cycle4cmt1

All donations are secure and sent directly to the CMTA by FirstGiving, who will email you a printable record of your donation for tax refund. Thanks for your support!!

 

 

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Penn neurologists uncover new genetic cause of Charcot-Marie-Tooth Disease

Charcot-Marie-Tooth Disease (CMT) is a family of inherited disorders of the peripheral nervous system, affecting approximately one in 2,500 Americans. Its most common iteration, CMT1, comes in many forms, most of which have to date been linked to a small set of causative genes.

Source: Penn neurologists uncover new genetic cause of Charcot-Marie-Tooth Disease

What’s Wrong With Me?

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:
https://www.firstgiving.com/fundraiser/melinda-lang/CYCLE4CMT

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

Block Island Spasms

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

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

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.

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.

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

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:
https://www.cmtausa.org/index.php?option=com_jdonation&view=donation&Itemid=76&tid=2014_035

For more ideas and to get your FREE survivor guide visit here:
http://www.cmtausa.org/index.php

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

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

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.

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.

Day Break Jacqueline Ravida canvas wrap $500

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

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

                              by Melinda Lang, Rph Upstate NY CMT facilitator

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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

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.