Need You Support Today

Hello all,

Our Bill is scheduled for an introductory Hearing on Tuesday 6/13/17. Its a formal introduction where the committee will vote to include the Bill for consideration and later discussion with testimony. Its one of the first hurdles. So, we need our supporters to call or write the Committee members and ask for their support.

Its important to remember that you don’t have to live in Pennsylvania to write or call. We just want the committee members to hear from lots of people asking them to support the effort.

Below is a letter written by Kate Chalfin that we offer for you to send. If you’re able, copy and paste it into your email to the Committee members, and write in a sentence saying why you are writing. It matters. If you don’t have time to contact all, please focus on the Committee Chair: Lisa Baker and also send a thank you to Senator Scavello.

Thanks for your support

The emails are here followed by the contact request (sorry for those have to be done one by one):

lbaker@pasen.gov, marioscavello@pasen.gov

 

http://www.senatorbrooks.com/contact/, http://www.senatoraument.com/contact/, http://www.senatoraument.com/contact/, http://www.senatorscotthutchinson.com/contact-me/, http://www.senatormensch.com/contact-me/

 

Dear Senator Baker and HHS Committee Members:

 

Letter from Kate Chalfin of West Chester PA.

The other day I was listening to a podcast and heard a statement that struck home to me. The story was about a young man who suffered a spinal cord injury (SCI), and was just beginning to understand his changed body. The narrator of the story identified that “even the most basic version of survival was going to be completely exhausting.” To me that describes so accurately what life is like for individuals living with SCI. It helps describe why the communities of approximately 37,000 Pennsylvanians living with spinal cord injuries are so often overlooked. The struggle to stay healthy, to manage their bowel and bladder functions, to adjust to their new normal, and to maintain a job (if they are lucky enough to have one), means that there is often not much energy left to advocate for themselves.

But we are here to tell you that there is a real need to increase funding for more SCI research. Pennsylvania has a wealth of scientists and they are working on some very interesting research for SCI treatments. Thee science and the talent is here, but the lack of funding is limiting Pennsylvania’s potential to be a groundbreaking leader in this field. The potential benefits of a small amount of seed funding for SCI research not only include the obvious life improvement for the 37,000 Pennsylvanian SCI survivors, but a reduction in the cost of care, which is over $1 billion annually born by the state, and the attraction of medical device companies, pharmaceutical companies, and esteemed neurosurgeons to our state. This funding would show Pennsylvania’s world-renowned hospitals and research facilities that the Commonwealth supports their efforts.

But those are just the economic facts. The most important thing is the sense of hope that will be given back to those living with SCI. It would give hope to my 39-year-old husband who was injured seven years ago in a steeplechase racing accident and is paralyzed from the chest down. It would give hope to our fellow advocate David, who is the father of two young children, and would benefit from a greatly improved quality of life through even the small change of regaining use of his hands. And it would give Senator Scavello’s constituent, 16-year-old Alex hope, who sustained a spinal cord injury during birth and would be able to start to envision a day where he could live independently when he reaches adulthood. This is just a small handful of stories that reflects the lives of so many Pennsylvanian’s living with SCI across our state.

Please support us by voting to approve the Senate Bill 31 Spinal Cord Disability Research Grant Program, and add to the 12 existing State Research Investment programs across the US (most recent $6 million Research Fund in MN) so that we can help fund the science that will so greatly improve the quality of life of those living with SCI.

 

Sincerely, The PA Cure Advocacy Network: Kate & Jake Chalfin, Melissa and Alex Pitts (Nazareth), David Zacks (Erie), Leon Ford (Pittsburgh), Matthew Rodreick (from Radnor), Kenneth Ryno, Michael Pellicano (Carbondale), Ben Stear (Philadelphia).                                                                                           And: Dr. Angelo Lepore (Jefferson Hospital). Ron Siggs (VP of Development at Magee Rehab), Mark Chilutti (Assistant VP of Development at Magee). Dr. Michael Selzer (Temple University), Dr. Michel Lemay (Temple), Dr. George Smith (Temple), Dr. Young-Jin Son (Temple), Dr. Andrew Spence (Temple), Dr. Shuxin Li (Temple), Dr. Ralph Marino (Jefferson), Dr. Ted Taraschi (Jefferson), Dr. Karen Greenwald (Pitt) Dr. Therese Johnston (Jefferson), Dr. James Harrop (Jefferson)

Supported by: Unite 2 Fight Paralysis and Get Up Stand Up 2 Cure Paralysis.

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Are my knees cold?

“How do they look?” my husband Jake asked.  And all I can say is, “Absolutely ridiculous!”

We are staring at each other in the dressing room at Cabella’s as he models a new pair of bib snow pants.  We have just spent a comical and exhausting 5 minutes trying to pull the snow pants on over his legs and up his body while he is sitting in his wheelchair.  And now I’m just staring at him because these are not just any snow pants.  They are an unreasonably expensive pair of high tech camouflaged, thick down-filled snow pants that were designed for deer hunting in extreme winter conditions.  And it occurs to me that it’s funny we are in Cabella’s, let alone asking the staff for tips on deer hunting attire, when the closest either one of us has come to hunting deer is riding our horses past vacant tree stands in the woods. But Jake had a good theory.  What sport needs the warmest gear?  (Hint: Not a skier) Naturally Jake thought of the hunter, quietly sitting motionless for hours in the freezing cold, not generating any body heat from physical exertion, which is exactly what brought us here, to the Cabella’s dressing room for snow pants.  These are the ridiculous things you do when you suffer from paralysis.  When you can’t move your legs and generate your own heat these are lengths you have to go, just to stay warm on a 60 degree day. 

Jake’s mobility issues already keep us from all kinds of activities that we would love to do.  But I’m here to tell you that SCI (spinal cord injury) manifests itself in many other frustrating forms beyond mobility, especially when you are an avid outdoorsman.  One of the many things that paralysis robs one of is the ability to control body temperature.  Jake often finds himself staring out through a window on a gorgeous day, prevented from being outside because temperatures are not absolutely ideal.  Jake often jokes that he can spend all the time in the world outside as long as the temperature is between 75-78 degrees.

Typically, as is the case for Jake, individuals who suffer from SCI are unable to adjust their body temperature below the level of injury.  In Jake’s case, he has a C7 spinal cord injury, which means he has severely impaired or no sensation from his upper chest down. While the sensory receptors in the skin still work and are constantly sending messages about being too hot or too cold, those messages cannot reach the brain for interpretation and reaction.  Sometimes Jake will feel coldness and the agonizing inability to warm up, while other times, specific parts of his body will turn ice cold without him even realizing it.  As we prepare to sleep, a nightly question heard in our household from September to May is, “Are my knees cold?” And almost every night, the answer is yes, they feel like ice cubes!   I know that his knees are sending the messages loud and clear that they need help warming up, but those messages never reach his brain.  This means Jake’s lower body doesn’t shiver, produce goosebumps, or constrict the blood vessels to allow less blood flow in the outer capillaries, which reduces heat loss as the blood circulates to the inner core – all of these are ways a healthy body works to maintain a stable temperature.  It also goes without saying that a big contributor is lack of circulation due to his permanent sitting position.  All of these natural physiological processes are unavailable to Jake, putting him at risk for hypothermia and frost bite when we do decide to venture outside on a cold day, and just making him generally uncomfortable in a slightly cool restaurant or house.

So what do we do?  We buy flannel lined jeans and ridiculous and expensive high-tech down-filled snow pants to wear outdoors for when the temperature drops below 70.  At some risk of burning himself, Jake uses a heated blanket in bed to provide the heat his body can’t provide itself.  Jake drinks more hot tea per day than the Queen drinks in a week, all in an effort to stay warm.  And of course we always try to plan ahead and do our best to avoid being exposed to temperature extremes in the first place.  But one thing we can’t do is cheat, for example using heated socks or foot warmers (as much as we’d like to), as Jake’s body would also not be able to tell if they were getting too hot or burning him. 

Which brings me to the flip side of this dilemma. 

Two days after our fantastic wedding celebration with family and friends, Jake and I landed in Paris, super stoked to begin our honeymoon. We had a wonderful first day planned.  We would pick up our rental car, and take our time driving along the Normandy coast, stopping into little villages along the way to explore, eat and drink, ending our day at a bed and breakfast in Bayeux.  Besides the obvious romanticism of France, we chose it over a tropical island because it would be relatively cool enough for us to enjoy without worrying about Jake overheating.  Then, in the days leading up to our honeymoon, we read that France was suffering one of their worst heat waves in years – a heat wave in a country that generally doesn’t utilize air conditioning because it rarely gets that hot!!  But we stayed calm.  We stayed calm right up to the point where we found ourselves grinding to a halt in bumper-to-bumper traffic leaving the airport.  It turned out that the 100 degree weather wasn’t the end of the cruel joke.  Twenty minutes into our drive as we crept through an exhaust filled tunnel, we realized that our rental car’s air conditioning was broken! That’s when the relaxing honeymoon started to fall apart.  Eventually we did leave the congestion of Paris behind, but we had to skip our relaxing tour of the coastal towns.  When Jake begins to heat up it is only a matter of time until he feels like he is cooking from the inside out.  Once he passes a certain balance point his body is overwhelmed by heat and the situation can actually become very dangerous. We sped down the motorway windows down, pummeled by wind, Jake gulping water and bracing against the onset of heat stroke.  When we arrived at the non-air conditioned B&B, Jake stripped to his underwear and I covered him in cold wet towels.  By that point, his skin had turned red and patchy and he looked and felt exhausted. It took him the rest of the afternoon and evening to recover.  We were burned by paralysis again, this time quite literally.  (Editor’s note: We traded in our rental car the next day for one with functioning A/C and went on to have a fabulous honeymoon!)

So just as we can’t enjoy days below 70 degrees without proper planning, we also can’t enjoy the outdoors when the temperature climbs into the 80s or above. A hot day can be uncomfortable for a regular person, but for Jake it can be downright dangerous.  The same way Jake’s body cannot heat him up when he is cold, it also cannot cool him down when he gets hot.  A healthy body will respond to warm temperatures by perspiring, which draws heat out of the body in a liquid form that then evaporates off the skin, wicking away the heat.  At the same time the skins pores open wider and the capillaries in the skin dilate to fill the blood vessels distributing the heat of the body closer to the surface so the blood can cool before recirculating back to the inner core.  With a spinal cord injury, Jake cannot sweat below his level of injury, nor do the pores and capillaries receive the signal to dilate.  This causes the body to rapidly overheat which leads to symptoms such as nausea, headache, exhaustion, high blood pressure, and Autonomic Dysreflexia (which I’ll cover in another blog someday soon).  The real fear for people with SCI is that overheating, which can happen quite quickly, can lead to heatstroke, ultimately manifesting in damage to the kidneys, heart and brain, possibly even causing death.   

I’m sharing these stories to demonstrate that paralysis from SCI is not just about the inability to stand or walk or play soccer or go for a hike. Paralysis is not just an unlucky hand of cards dealt to a young man who is still healthy, happy, well-adjusted and doing great. Paralysis is about the secondary complications, the inability to control temperature or blood pressure, to go to the bathroom naturally, or to feel pain that could be a warning of a potential pressure sore. These problems can’t be fixed by walking across the room in an exoskeleton. That is why our advocacy group is rallying for increased funding for scientific medical research towards curative treatments for SCI survivors. The curative treatments we are advocating for are those that bring functional improvement, which includes recovery in the way of bladder, bowel, and sexual function, temperature control, sensation, standing and eventually walking. These functional improvements are the ones that will improve the quality and longevity of life for those living with paralysis.  This is why we will continue to advocate for funding to support the research being done right here in Pennsylvania.

I continue to share our story in the hope that it leads to a deeper understanding of the importance for curative treatments of SCI and belief in the reality that researchers are close to significant breakthroughs.  If you are moved by this blog, please support our bill by taking one (or all) of the following actions:

1) Call or email the Senate Health and Human Services Committee members  listed here and ask them to support SB 31 and bring it to a vote.  You can also call or email the House Health Committee members listed here and ask them to support HB 385 (the sister bill to SB 31) and bring it to a vote. These are the two committees where the bills are sitting, and without the support of these Senators and Representatives, our bill cannot move forward. 

2) Sign our petition (if you haven’t already) and

3) Possibly most importantly, SHARE this story with your friends.  In order to be successful, we need an extended network of supporters.

Thank you for your ongoing support.

Kate Chalfin

Perspective

February 2017

My wife hates hearing what I am about to say.  I’m not writing this to inspire anyone with a story of triumph and perseverance.  My goal is not to pump anyone up with words of wisdom or compassion gained from my life living with injury.  I am writing this to share the important but dark side of my life, the side that is generally too uncomfortable to talk about in social settings, but is much too serious to ignore.

There are two kinds of Spinal Cord Injuries (SCI).  The kind that kills you instantly and the kind that kills you slowly, stalking you every minute until after years of hunting it finally wears down the body until there is no resistance left.

About a month into my rehabilitation after having had my spinal cord injury, I developed a whole new understanding of perspective and what it means to be lucky.  Of course, I felt very unlucky that I broke my spine in the first place and became paralyzed.  But then I looked at my roommate and realized how lucky I was that at least I was not as bad off as him.  At least I had the functional use of my hands.  Or let’s say I didn’t, then all I would have to do is look two rooms down the hall and I could say at least I’m not on a ventilator.  That’s when I got real perspective, that’s when I realized there are so many different levels of hell in the world of SCI.

Today my health is stable and I am in good health relatively speaking for someone living with SCI.  I eat smart, manage my weight, exercise regularly, and maintain a job which is also good for my mental health.  However, as I write this blog today, I actually happen to be on a course of antibiotics to fight what is my 1st UTI of the year.  I’ll get better from this one but what really scares me is what will happen when inevitably my body becomes resistant to the antibiotics and I can no longer fight off these types of infections.  I could also name a dozen other acute health risks that are specific to people living with SCI. This is what I mean when I say SCI is a slow killer.  I survived flying head first into a fence post at 30 miles per hour but it’s the small secondary complications that will get me.

This is why my wife and I feel that living with SCI is not a viable option.  It’s not just about living a life robbed of able-bodied experiences.  This is a matter of life and death.  This is why it is so critical that research be funded to develop curative treatments that will restore not only the ability to walk but almost more importantly bowel, bladder, sexual function and a whole host of other central nervous system functions like sensation and temperature regulation.

In this day and age we have no excuses for the lack of progress in the medical treatment of SCI.  Lack of progress is our own fault.  If we can put a man on the moon and can cure AIDS, it tells me that we just need to pull together and work harder.  Time is NOT on my side, we need to develop a cure for SCI and we need to do it NOW!

Perspective is a funny business.  I am grateful for what I have but that does not mean I have to be satisfied.  I want more and I need more.  I want a cure for my wife, my family, the whole community of SCI survivors and myself.  You may not see us but we are out there fighting for survival every day.  Finding a cure will take a village and we need you to take action.

Jake Chalfin

Please take action by contacting Senator Lisa Baker and Senator Judith Schwank to ask them to support and move forward PA Senate Bill 31, Pennsylvania Spinal Cord Disability Research Act.  It takes less than 60 seconds and can make a world of difference.

State Sen. Baker Phone: 717-787-7428 and website

State Sen. Schwank Phone:(717) 787-8925 and Email: SenatorSchwank@pasenate.com

Thank you for your support.

Hot Shower

Rarely do I get to enjoy watching the Ellen DeGeneres Show, as I’m usually in the office that time of day.  But for some reason, I caught a few minutes of the show the day after the election.  As the show was taped prior to the election, Ellen could say nothing about the results as she had no idea who had won.  But she opened her show by saying that no matter who had won the election – a divisive one that had affected much of our country – to remember that in many ways, we are all the same.  She said, “I believe we can all come together because if you take away the labels, you realize we’re far more alike than we are different.” She followed that up with a few funny examples, for instance, that we all have that feeling of stepping out of the shower and realizing our towel is all the way across the bathroom, and end up tip-toeing across the bathroom trying not to get the floor wet. And we all share that automatic instinct of ducking your head as you drive into a parking garage, because you’re sure if you just duck your head, your car will fit under the clearance sign. (I know you’ve done it!)

It was a silly and funny analogy, but it got me to thinking about my husband’s injury.  My husband Jake has a C7 spinal cord injury, with a T2 functional level.  Others with a spinal cord injury (SCI) are familiar with that language, but for our able-bodied friends, that means Jake is paralyzed from the chest down.  When I met and started dating my husband, I, like many of you reading this blog, immediately thought with sadness of the things we wouldn’t be able to do – hiking through our National Parks, dancing together at our wedding, walking down the street holding hands, and all the other dreams that a young active couple has when they fall in love.  All of these restrictions relate to Jake’s inability to walk, stand up, or even sit up on his own.  But now, four years into our relationship, I realize there are so many other, more important, functions  that I wish I could give him back, all of which we would happily accept before the ability to stand up and walk.

How does that relate to Ellen, you’re wondering?   One day my husband was rolling into the shower and I just casually mentioned to him how good a hot shower must feel.  “Not really,” he said. “Since my injury, it doesn’t feel the same.  The hot water just feels like…. a buzzing white noise.” WHAT?! Here I am, thinking that after a rough day of life as a paraplegic, a nice hot shower would revive you.  Like Ellen’s shower story, I thought everyone must enjoy a hot shower.  We can all agree that we share that, right? Apparently not. I learned that day this situation was just another one of the curses that comes with paralysis.  My husband’s comments saddened me. It turns out, the loss of sensation takes away his body’s ability to feel that soothing hot water on his skin.  Geez, what was left to enjoy?  I later heard stories from other SCI survivors that their first showers after injury were actually extremely painful, almost unbearable. Their injuries had caused their brain to confuse their sensations into thinking the feeling of water was actually something painful.  As it turns out, SCI injuries get more frustrating the more you know about them.

Why am I sharing this story with you?  Because our advocacy group is rallying for increased funding for curative treatments for SCI survivors. (Survivors is a good word, because it reflects the battle that is everyday life post SCI injury.) The curative treatments we are advocating for are those that bring functional improvement to those with paralysis.  While functional improvement in the way of walking, hiking, and dancing may not be immediately around the corner, functional recovery in the way of bladder, bowel, and sexual function, sensation, and standing, IS around the corner.  And almost EVERY person with a spinal cord injury that you ask, wants these types of recovery first, above all else.  This is why we will continue to fight for funding to support the exciting research taking place right now!

Doesn’t everyone deserve to enjoy a hot shower, whether it’s standing up or in a chair? Please support our bill by 1) calling your PA Senator and Representative to say you support SB31 and 2) signing our petition.  You can find links to do both here.

Thank you for your ongoing support,

Kate Chalfin 

Drum Lesson

Hello all,

Happy New Year to all of you who continue to follow this blog and to the newcomers who’ve found your way here. I hope you come here knowing that I’ve got a new challenge for which we need your help. In a few days we’ll have a new Bill to fund Spinal Cord Injury Research in my original home state of Pennsylvania. Before I provide the details for you, let me share just a little bit of the why.

Yesterday while Gabe (my son) was working out as he so often does in our garage turned Rehab Gym, I caught a precious moment. For those of you new to this ongoing narrative, Gabe suffered a spinal cord injury about 8 1/2 years ago, which rendered him quadriplegic. To the surprise of many, sometimes even me, he has continued to pursue his passion as a musician. He leads, writes and sings in a band here in Mpls where they are currently recording their 4th album.

Yesterday while he was riding his FES (functional electrical stimulus…stationary bike with stim) bike, he was giving my 15 year old stepson, Jordan a drumming lesson. Since the gym doubles as a rehearsal space its cluttered up with musical gear, and one full drum kit. Jordan idolizes his older brother quite a bit, and like idolaters everywhere, he hopes to follow in his idol’s footsteps and form his own band one day.

Footsteps. Therein lies the joy and the sorrow, like so many things in life. Jordan was getting a lesson from listening to and keeping time with one of Gabe’s recorded tunes playing loudly over the gym speakers. And Gabe was directing him with his head, his mouth and his arms,, keeping his count and feel on time. There is no step in Gabe’s foot for Jordan to follow.

Gabe was never much of a drummer (keys were his thing) but years of writing songs from the bottom up with specialized software and seeing them take shape in his band has made up for much of that, not to mention being a passionate student of many kinds of music. It was a beautiful thing to watch Jordan keyed in on the cues coming from Gabe’s body while he struggled to keep his hands and feet on time and in pace. Yet it also reminds me of what my son could do with the use of his hands again, or a full diaphragm, or even his legs.

Please help us continue to move the dial on the research that is currently creeping in on the strategies to do just that. Like our Facebook page ‘PA for the Cure’, so you can get updates on our progress and sign our new petition here. Remember you do not have to be a PA resident to show support, so please share with all of your contacts.

Call or email Senator Scavello and ask him to make sure that we pass the PA Spinal Cord Disability Research Act, and to consider making it an ongoing allocation in the PA Budget. The email link is right under his picture on the homepage.

Thanks for your support

Matthew Rodreick