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February 10 Winter/Spring 2016 Newsletter of the Joseph Groh Foundation

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2016 Means Golf Mania!



If you like golf and if you like doing it for a good cause, then 2016 is your year. That is because the Joseph Groh foundation will host not one, not two, but three golf tournaments this year! Dates and times are listed below, so be sure to save the date now. Why are we doing this? Is it because we like to golf? No, but we are sure hoping you do!

In 2015 we were able to help 10 recipients, far more than in any other year. We are very gratified by that, but word about our foundation is spreading… And that is a two-edged sword. On the one hand, that means we have the opportunity to help more people than ever before – but on the other, it means we need to raise more money before we can make that happen. To give you an idea of how the word is spreading about our foundation, at present we have 1.5-2 years worth of qualified grant requests at our current level of funding! THAT is why we are expanding our golf tournament fundraising in 2016 – and we hope you will help us spread the word!

Golf Dates/Locations for 2016

Monday, May 2, 2016
Coyote Ridge Golf Club
Carrollton, Texas

Monday, August 29, 2016
Makray Memorial Golf Course
Barrington, Illinois

Minneapolis/St. Paul, Minnesota
Golf Course: TBA
Date: TBA

Inspiring Hope



On Sunday, January 31 Joe was invited to speak to a consolidation of the adult Sunday morning class groups at First United Methodist Church in McKinney. He and Sue presented a talk entitled Inspiring Hope to a group of over two hundred adults, after which they answered a few questions. In their talk, Joe and Sue shared with the audience some keys to overcoming the kinds of obstacles we are all likely to face in life, and how these obstacles lead them to start their foundation. Sales of Joe’s book along with a collection taken after the presentation resulted in over $2500 being donated to the foundation! The following Sunday, a member of the church followed up on this presentation with his youth group in a lesson entitled “Failure Is Always an Option.” As part of this presentation, the class was challenged to follow up on the lesson with action – which in this case took the form of spreading the word about the upcoming Dallas golf tournament fundraiser being held by the foundation. The picture above was the groups way of giving a thumbs up to the foundation. Our thanks goes out to Dick Whitlock and his class! Joe and Sue have given this talk previously to other churches, business groups and chambers of commerce. If you are interested in having them speak with your group, please see the foundation website for more information.

Adaptive Vans For Veterans and Servicemembers

During the process of funding a recent grant, the foundation became aware of a terrific benefit available to current servicemembers and veterans of the military who are disabled. The program is called The Automobile and Special Adaptive Equipment Grant Program. According to the US Department of Veterans Affairs website, “Servicemembers and veterans may be eligible for a one time payment of not more than $20,114.34 toward the purchase of an automobile or other conveyance if you have certain service-connected disabilities. The grant is paid directly to the seller of the automobile and the servicemember or veteran may only receive the automobile grant once in his/her lifetime.

Certain servicemembers and veterans may also be eligible for adaptive equipment. Adaptive equipment includes, but is not limited to, power steering, power brakes, power windows, power seats, and special equipment necessary to assist the eligible person into an out of the vehicle. VA may provide financial assistance in purchasing adaptive equipment more than once. This benefit is payable to either the seller or the veteran or servicemember.” The website also states that you must have prior VA approval before purchasing an automobile or adaptive equipment.

If you are an active servicemember or veteran who is disabled and needs an adaptive vehicle, be sure to check out the link below to see if you qualify for this benefit!

http://www.benefits.va.gov/compensation/claims-special-auto-allowance.asp

Featured on the Website

Recent Changes to the Foundation Website

When you look at the foundation website, you will notice quite a few changes including:
  • Homepage
    • Announcement of 2016 Golf Tournaments
  • News Page
    • Winter/Spring 2016 Newsletter
    • Archived News Articles and Newsletters
  • Links Page
    • Fire Safety for People with Disabilities – Under National Resources
    • Guide for Online College for the Disabled – Under National Resources
    • Assistive Technology News - Under National Resources
There are now 162 websites referenced on our links page, we invite you to explore all them in detail!

Latest News in the World of Spinal Cord Injuries

Christopher Reeve put the world of SCI on the map when he started his foundation with a goal of curing spinal cord injuries by funding innovative research. The following discussions provide an insight into where some of that research is leading.

Stem Cell Research

For some years now, there has been hope that stem cell research may lead to improvement in the symptoms of spinal cord injury. Stem cells used in the treatment of SCI may come from (among others) one’s own bone marrow or from umbilical cord tissue taken from healthy births. Scientific research conducted in animals has investigated the utility of stem cells in the repair of a spinal cord injury. These studies have shown that stem cells may contribute to spinal cord repair by replacing the nerve cells that have died as a result of the injury.They can also contribute by generating new supporting cells that will reform the insulating nerve sheath, acting as a bridge across the injury to stimulate the regrowth of damaged nerves. Stem cells look to protect cells at the injury site from further damage by suppressing spread of the injury and slowing the inflammation that occurs following such an injury. While stem cells cannot be used to treat spinal cord injuries now, the technique is promising and offers the hope of healing and improvement of the symptoms caused by such a devastating injury.

Epidural spinal cord stimulation

Recently, a state grant was awarded to researchers at the University of Minnesota to study epidural spinal cord stimulation. This therapy utilizes a device implanted along the spine that sends electrical impulses. Clinical trials and other states have shown that people were able to move previously paralyzed muscles after undergoing such therapy. A 2014 study funded in part by the Christopher Reeve foundation and National Institutes Of Health saw four young men achieve groundbreaking progress after being able to move their legs as a result of epidural electrical stimulation. The four participants had been unable to move their lower extremities as a result of a chronic, complete spinal cord injury. Beyond regaining voluntary movement, research participants displayed a myriad of improvements in their overall health including an increase in muscle mass and regulation of their body temperature and blood pressure. Additionally, all four men were able to bear weight independently.

The device works by delivering electricity to excite the nervous system. According to one of the Minnesota doctors, the amazing thing is that after you have implanted the device for a while, you still retain improvement of function when you turn it off. In 2015, the Joseph Groh foundation provided a Functional Electrical Stimulation bicycle to a grant recipient. This recipient has seen improvement in his upper body function following this type of extended therapy after his spinal cord injury. The foundation hopes to provide a video update of this individual during the upcoming golf tournaments. Stay tuned…

Linda Frederick – A Person You Should Know

The life of a caregiver’s relentless. The hours are 24/7/365, the pay is nonexistent and there are no benefits. Yet every day, millions of people across the world sign up for this job without so much as a whimper of complaint. In the world of the sick, injured and elderly, these are the true heroes! I have attached a letter from one such individual, a wife who serves as the primary caregiver for her husband, who at the age of fifty-three suffered a traumatic brain injury as the result of a bicycle accident. Here is her story in her own words.

Life as we knew it was a pretty awesome thing. We traveled at will, raised 3 healthy kids, and we had inherited our first couple of grandkids. Nothing out of the ordinary but a pleasing life. Jerry was the family athlete; he hiked, played tennis and racquetball, golfed every week, walked every day, and then on top of that rode his bicycle every week for 25miles with a group of his friends. He was big, strong and athletic.

I enjoyed my life of eater aerobics, walking, shopping, and tending to all my chores as a wife and mother, living the good life with the man I loved.

We had worked hard, saved our money for retirement and paid our kids way through college. We both worked and had a reliable steady income with a hopeful future ahead. That was in 2001.

By summer that year our oldest child died tragically, we took control of our grandchildren and the company we worked for nose dived following the attack on 911. To preserve the remainder of our pensions, Jerry retired that November and I followed in 2004, still clinging to the remnants of an ESOP gone south.

In 2007 I was diagnosed with stage 4 Ovarian Cancer, underwent a total and complete hysterectomy followed by 6 months of chemo. I was fighting the battle of my life and Jerry was my caregiver, seeing to everything I needed.

Just 4 months after my last chemo, he fell and hit his head while on a bicycle ride with friends. Jerry suffered a severe brain bleed and stroke. It changed our lives forever. The money we had worked so hard to save evaporated in the co-pay costs of millions of dollars of medical expenses and deductibles. Twenty-seven hospitalizations will do that in short order.

On top of that the economy tanked, and I could do nothing to get help financially from the refinance of my home loan or find a bank that would consider helping out. It was stressful and worrisome in every sense of the word. I had no formal training in nursing and had no idea how to even begin, so I sat down and thought about the pros and cons of our situation. Would it be better to place Jerry in a nursing home, or keep him at home? How could I manage all of it alone, especially when I was just recovering myself? What would the costs be and where would I find the extra help?

The days of leisurely baths and strolling alone down the aisle of my favorite stores were over. The tub had to go and a roll in shower brought in. My living room turned into a nursing center and hospital suite. Oxygen tanks, ventilators, wheelchairs, and the rest of the DME goods replaced my favorite pieces of furniture. I learned by the seat of my pants to change soiled diapers, cleaning and suctioning feeding tubes and replacing the trachea every month. Feeding, bathing, and every single function in life now sat squarely on my shoulders. On top of that I had total responsibility for all the household chores, seeing to meals, and being awake around the clock to check on the ventilator that kept this former athlete breathing. I saw it and I did it all while recovering from a difficult and life threatening illness. I don’t need all the old bells and whistles. I just need him in my life.

At first I was overwhelmed and afraid I would miss the mark. Then I got angry, why us, why now? What did we do wrong to deserve such punishment? Eventually this equated into an orchestrated decision to defy the odds. I simply decided I was going to win at this; I was going to love this man no matter what I had to do, through every crisis. I told myself I was not going to die and I was not going to let this disability destroy our lives. I told myself I could and would do it for both of us. And I would not let him die. It might require begging for help out there or doing without, but it would be done. Somehow.

I take him now, we go to restaurants for dinner on occasions, we go to the movies, we go to grocery stores, and we defy the looks. Have you ever seen a man in a wheelchair being pushed by a one armed wife who is dragging a grocery cart with the other hand? to shop? We get some mighty odd looks, and on a couple of occasions people offered to help. The one thing I still need is a wheelchair van, but that will come in time. For now, I lift and pivot and get him to the safety of the car.

Being a disabled person isn’t a cake walk by any means, and being a caregiver is just misunderstood. We work around the clock for no money. But we do it to restore a life, to make life meaningful, and to love someone regardless of the disability. That means no matter what the condition of the body is, his or mine. Life is meant for living.

The next time you see a caregiver and a disabled person, say hello and make them feel like they aren’t invisible. Let them bask in the sunshine and feel, even if for just a moment, the way of the old life – only in a different perspective. Live a full life no matter what.

A Day in the Life

This feature is a sometimes humorous, sometimes offbeat, and sometimes irreverent look at life as seen through the eyes of a severely disabled person. Management takes no responsibility for these ramblings.

Kleptomania

Whenever my wife and I go out to eat, we tend to like restaurants that have cocktail height tables and sufficient light to see the menu with. We like the former so my wife can sit next to me and help me eat without having to constantly stand and sit. We like the latter because we're getting old and I draw comfort from being able to see that it is my wife who is feeding me and not some stranger. Not every restaurant can accommodate these two desires however, so we try to put the odds on our side. We now carry a miniature flashlight with us wherever we go.

Most of the time we dine in restaurants that have white paper napkins, which my wife likes to lay over me the way a dental technician drapes a lead blanket prior to taking x-rays. Even in a dark restaurant, the white napkin is clearly visible so we generally remember to remove it before leaving the restaurant. If we don't however, it's light weight makes sure it blows away as soon as we get outside, thereby contributing to the ambience of the neighborhood. It's the dark, linen napkins that get us in trouble.

It started innocently enough. On one special occasion, my wife and I decided to visit a restaurant that was of a higher class than those we generally frequent. Instead of thin, white paper napkins, this establishment featured black linen napkins. After a few minutes, I asked Sue to cover me with my black blanket because they had the air conditioner turned down to the polar cap recovery setting. My fuzzy black, warm traveling companion is another aquiescence to age, although I'm sure the kink in my spinal cord also has something to do with that. The dark ambience coupled with the black linen napkins however provided the perfect backdrop to what was about to become a crime spree.

When we arrived home that evening we discovered the black linen napkin folded neatly on top of the black blanket which still covered me. We laughed at how we had so neatly made off with the restaurants property, and we jokingly referred to it as the great napkin caper. Until it happened again. At that point I began to worry a bit about our memories, especially after we arrived at home one evening with a white linen napkin. I even dreamed one night that we were refused service at one restaurant because we could not be "entrusted with restaurant property." I was not prepared however for what was to come next.

My wife and I have always celebrated our wedding anniversary with a visit to a local fine dining establishment. In the years BC, (before children) we would take turns choosing the favored restaurant, and during our years in Chicago we ended up dining at a number of the cities most well-known locales. The only disruption to that tradition came one summer a few years ago when my handicapped van decided to go topless, but that is a story for another day. For our most recent anniversary, we once again decided to visit one of Dallas's best-known restaurants, which shall remain nameless because of the crime committed there.

As expected, this restaurant featured dark, linen napkins, heavy, fine silverware and a near pitch black environment. We were in the midst of enjoying our entrée when my wife accidentally dropped my fork. She briefly looked for it on the floor, but being a fine establishment we thought it improper to search for it on our hands and knees. We figured the restaurant would find the utensil after we left, so she deftly removed a fork from a neighboring table after making sure no waiters were looking. We continued to enjoy our delicious dinner. At some point however I became chilled and wanted to be covered with a blanket. We continued through dessert and coffee and left the restaurant feeling warmly satiated from the fine food, wine and each other's company.

When we arrived home my wife took the blanket off me and we laughed once again as we discovered yet another napkin added to our collection. The feeling of mirth quickly evaporated however when we discovered the lost fork resting on the footplate of my wheelchair. I felt disturbed after the thought ran through my mind that we only needed a few more utensils to complete a set for home dining use. I visualized standing in front of a somber group at Thieves Anonymous saying, "my name is Joe and I am a kleptomaniac."

Since that time there have been no more such incidents, although it has been less than a week since our anniversary. I realize now that every recovery comes one day at a time and so I will wake up tomorrow, God willing, and pledge to try not to think again of what a matched set would look like!

S. C. I. World