Joe Groh SCI Fund - Joe's Updates

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2009-2010

February, 2010 - May, 2010 >

Updates are getting fewer and farther between, I will continue them however at least through the end of 2010. From a health standpoint, things have continued to go well. During late February or early March, we had a freak snowfall in the DFW area totaling about 12 inches. While that may not seem like much to our northern brethren, it's a lot down here! In fact, it was historic. We lost power for about a day and a half, and during that period I "duked it out" with an early bout of pneumonia. Neighbors helped us out with a portable generator and heater, and antibiotics kept my lung issues in check. I was more concerned about the survival of our 3 palm trees, each of which is about 30 feet tall. They made it, but needed some help from the "tree doc."

I stayed busy in the late winter and early spring working on the Joseph Groh foundation golf tournament. It was held on April 29, and we were blessed with good weather even if it was quite windy. We had a good turnout (62 golfers and 85 diners) and raised over $31,000 (gross) for the foundation. There was concern that Joe would not have his power wheelchair available on the day of the tournament. Both the display and an actuator failed in late February, (4 days out of warranty) and Joe worked with the local distributor to rectify. The distributor successfully lobbied the manufacturer, and the parts were covered. Otherwise, it would have cost several thousand dollars. It seems like every mechanical device sold today has the option of maintenance agreements and extended warranties, but not a $40,000 wheelchair!
Joe thinks that the practices of certain businesses in the medical field could benefit from looking at the HVAC industry. The chair was made operational however 5 days before the golf tournament. Now, the work of the foundation turns to finding persons needing funding, while expanding the reach of provided services. The golf outing was not without its casualties however. One of the golfers experienced a gall bladder attack on his return home, (he is okay) Joe's sister had a mild heart attack on her return home, (she is okay) and I ended up with my first pressure sore in a year. It is on my right elbow, and we are working with the doctor to heal it. Hopefully, we'll be able to get rid of it without infection by the Fourth of July. Planning for the 2011 golf outing has already started, hopefully without the added drama!

Summer will see the graduation of our youngest daughter from high school and our middle son from college. Life for us will enter a new phase when they head off for college and the workplace respectively. Once all the help leaves, it is not feasible to stay in this house with Joe being disabled. Toward that end, Sue and I are looking to downsize. We have begun conversations with a number of builders, and that project along with the foundation work and other personal projects will continue to compete for Joe's time. The next update will be provided around Labor Day. Meanwhile, stay safe and have a great summer!

November, 2009 - January, 2010 >

We hope everyone had a great holiday season, and that you are now fully immersed into the activities of the new year. From a health standpoint, things have been going very well. I had a lung infection, but we got on it early so it did not present any complications. During January, I had an appointment with the neurosurgeon who fused my vertebrae, because my neck had been hurting. He said the fusing was holding up well, and the pain was from normal "wear and tear." I jokingly told him that it had only been a year and a half, and asked if I was still good for a lifetime warranty? Such things are part of the new normal, you can't stop them, you can only hope to contain them.

The voice-activated computer software allowed me to conduct a full analysis of the insurance changes which took place through our COBRA plan in October. By the end of the year, we were able to find an alternate plan for Sue and the kids, which saved us a considerable amount of money. I remain on COBRA until later in 2010, when I will go on Medicare. I have been studying Medicare in order to become fully informed, so as to make the right decisions when the time comes. The software has proven invaluable in completing this task.

I also built a golf website and online auction website (via templates) using the software. The first-ever golf outing for the Joseph Groh Foundation will be held Thursday, April 29, 2010 at the Trophy Club Country Club in Trophy Club, Texas. We hope to see you there, for more information, please go to The Joseph Groh Foundation Website.

During January, Southlake Carroll Senior High School held a "Joe Groh Night." They had held a similar event in January of 2009, which benefited our family in the purchase of durable medical equipment not covered by insurance. This time, however, the beneficiary was our foundation. During halftime of the girls varsity game, the Dallas wheelchair Lady Mavericks performed an exhibition. During halftime of the boys varsity game, the Dallas wheelchair junior Mavericks performed an exhibition as well. Donations were collected and a silent auction completed the evenings activities. In all, over $2400 was raised for the foundation. Channel 5 in Dallas (NBC affiliate) was even there to capture the action, click here to view.

During January, I received a call from Baylor Rehabilitation Institute, where I rehabbed from my injury. They asked me to come down to visit a patient who had suffered a high spinal cord injury like mine, as a result of a motorcycle accident. Even at Baylor, they don't see that many cases of complete paralysis, and they felt this patient could benefit from our perspective. I hadn't been back in quite a while, not much had changed. The patient was about my age, and seeing what he was going through made me more convinced than ever other that starting the foundation was the right thing to do.

I will write my next update in May following the golf outing. We hope to see you there.

September - October, 2009 >

This year seems to be flying by, and the last two months have been among the busiest.

Right after Labor Day, I had surgery to have a Medtronic Baclofen pump internally installed. This pump is designed to inject small amounts of medicine (essentially muscle relaxers and anti-spastic agents) directly and continuously to the base of my spinal cord. The purpose of this pump is to dramatically reduce spasms, which emanate from messages sent by the brain through the nervous system, which are unable to reach their destination due to paralysis. I had been taking fairly large dosages orally, which over the long term can cause kidney damage. While we still have to fine tune the daily dosage released by the pump, my spasms have been reduced by about 95%. The change is most noticeable when I'm in a wheelchair, and in my ability to speak without working through a spasm.

Thanks to all of your generosity, Sue and I were able to complete our purchase of durable medical equipment. We purchased a shower chair, a custom manual wheelchair, a Hoyer lift, and a bed. Hopefully these items will serve us for many years, and we thank all of you for your assistance in making it happen.

Health wise, things remain positive. I caught a cold in October that tried its best to turn into pneumonia, but we were able to prevent that. We're getting pretty good at recognizing the onset of a variety of symptoms which can quickly degrade without early intervention.

Our planned trip to New Orleans went off without a hitch. We enjoyed plantation and city tours, the French quarter and beignet’s, some great food, and the World War II Museum. We even enjoyed an evening at Preservation Hall, fortified with some Hurricanes from Pat O'Brien's!

The website for the Joseph Groh Foundation is now live. I invite all of you to check it out at josephgrohfoundation.org. Please sign-up for the newsletter on the home page of the site, and be sure to check out the golf links tab. My personal goal is for the foundation to distribute $1 million in aid to those in need over the next 10 years.

I will write the next update at the end of December. Meanwhile, I hope everyone has a great Thanksgiving holiday. Tis the season to root for your favorite teams. (In my case, the Chicago Bears, Dallas Cowboys, ACU Wildcats and Southlake Carroll Lady Dragons Basketball)

June - August, 2009 >

I'm not sure where the time has gone, but I just realized I have not posted an update in several months. I guess that's a good sign, it means I've been keeping busy.

Our foundation is now a reality and we have been given 501(c)(3) status by the IRS. We are now working to develop our website, the address is the JosephGrohfoundation.org. Our mission is threefold: - We want our website to serve as a clearinghouse of information for those who have suffered spinal cord injuries. On this site users will be able to find information on everything from US government sites to research sites to state government assistance sites to information on rehabilitation facilities and much more. We are planning to have it operational in October. - We want to encourage the HVAC and construction industries to hire individuals with disabilities - We want to provide financial assistance to individuals employed in the HVAC and construction industry or their family members who have suffered a spinal cord injury or other life altering injuries were illnesses.

For those not familiar with a 501(c)(3) organization, it is a true charity endeavor as I cannot in any way benefit from the proceeds derived.

We have also begun working on the golf outing for 2010. Mark your calendars now for Thursday, April 29, 2010 for what will prove to be another fun day for HVAC "golfaholics" and their associates. The location for this event will be the beautiful Trophy Club Golf course in Trophy Club, Texas. For those not familiar with the area it is located about 5 miles due west of the DFW airport. We are expecting double the number of golfers from this past April and there will be ample food, drink, and opportunities to help us achieve our goal of "HVAC Helping the Handicapped."

Thanks to all of your generosity we are moving ahead with the purchase of durable medical equipment not provided by the insurance company. We are expecting to complete purchase of the final items needed by Labor Day.

On the health front, no news is still good news! So far, 2009 has been kind in that regard. I have not suffered any serious illnesses or infections, and at the moment I'm completely free of pressure ulcers. The only thing that has worsened is my spasticity, or in the language of the trade, my "tone". I recently underwent a day procedure to test the effect of having a medication called Baclofen injected directly into my spinal cord. Currently, I am taking medication orally for this purpose. The test was very successful and shortly after Labor Day I will have surgery to have a pump installed internally which will continuously feed the spinal cord with medication. If it proves to be anywhere nearly as effective as the test, things should improve considerably.

Life has not been all work and no play as we are planning our first family vacation in a number of years. We plan on spending a week in New Orleans soaking in the food, music and sites. This will only be the second overnight trip we will have attempted since the accident, so it will be a good learning experience in taking longer trips. We hope there are many more to come!

I will try to be more diligent in providing regular updates, we'll plan for another around the end of October. I hope everyone has had an enjoyable summer!

May 31, 2009 >

I received the voice-activated software the last week in May! After two days of training, I was feeling relatively proficient with Word, e-mail, and navigating the web. I still have a little ways to go to make formulas work in Excel, and I have not yet tried PowerPoint. It will be a powerful tool for me however, and it will go a long way towards making me productive once again. In fact, this update is being written through voice activation. Many thanks to all those who helped make this possible!

The month of May saw another major breakthrough on a different front. The pressure ulcer that has been dogging me since August of 2008 has now finally healed! We have learned the hard way to jump on any health issue right away in order to minimize its impact and inconvenience. They can arise almost without notice, so vigilance is the key.

We have received approval from the state of Texas regarding our filings for the Joseph S. Groh foundation. We expect the same from the IRS before the end of June. In the meantime, we have developed a business plan outline and will hold a meeting with board members to complete the planning process in the very near future.

Joe celebrated Christie's birthday with his family by having dinner at the House of Blues in downtown Dallas. Between his improved health and the power wheelchair, he is finding it much easier to attend public events.

Joe is currently in discussion with an organization whom he is familiar with in order to provide volunteer work. More details will be forthcoming next month, but between that and the foundation he should be able to keep plenty busy.

Next update will be at the end of June 2009.

April 30, 2009 >

April was a busy month. The voice activated software was ordered the first week in May and will be installed the last week in May. I guess that’s the end of my daily naps!

We made a lot of progress with the pressure ulcer and were able to discontinue use of the wound vac. Hopefully that means this pressure sore will be completely healed in about a month. I guess we can wait that long since we have had this pressure ulcer since August of 08!

The golf benefit was a tremendous amount of fun as well as a big success. In all, 32 golfers participated in this event and they were supported by seven fundraisers and118 donors (individual and corporate). In addition, 16 donors (individual and corporate) contributed to the silent auction. While the list of those deserving a big thank you is large, several people deserve a special mention. Those include John and Vicki LaPlant, Gary Oetker, Mike Hajduk, Art and Bonnie Maupin, Mark Tatum and Michael and Joan Trush. THANK YOU ALL! Stay tuned to this website for a posting of photos.

At the golf outing Joe announced the launch of the Joseph Groh Foundation. In addition to being an information resource, the foundation seeks to financially help those in the HVAC and construction industries whose lives have been affected by a life altering injury or illness. Planning for next years golf outing has already begun. Stay tuned to www.josephgrohfoundation.org.

Joe caught a cold while at the golf outing and it quickly morphed into a mild case of pneumonia. Like Sue says, you just can’t take him anywhere! He is over it now, however, and all is well.

March 23, 2009 >

From a health perspective, everything seems to be holding up fine.

Still awaiting final approval on the voice activated computer, expect something to happen soon.

Pressure ulcer is making progress, complete healing may still be another six weeks or so.

It’s not too late to sign up for the upcoming golf benefit. You can check out this event by clicking on the First Annual Golf Tournament section located at the top of this website.

The next update will be at the end of April.

February 28, 2009 >

From a health perspective, February was better than January because once again NOTHING HAPPENED. I could really get used to this.

Latest word on the voice-activated software is that we might expect it in another 60 days or so. We may explore other methods of procurement if the state does not reply soon.

We are working with a new clinic regarding the pressure ulcers and they have initiated a more aggressive strategy for treatment. I am hopeful that this issue will be completely cleared up by the end of April.

In the last few days we have begun mailing out information regarding the April 25th golf benefit. For more information go to joegrohscifund.org and click on 1st Annual Golf Benefit. That will take you to a website which describes both the event and how you can participate.

We received our permanent power wheelchair this month and it works very well. I decided on a chin activated control system and I can now turn circles on a dime!

The next update will be at the end of March.

January 25, 2009 >

From a health perspective, January was a good month because NOTHING HAPPENED.

The specifications for voice activated software are now being processed by DARS, the state agency with whom we are working. Now it just needs to be processed by Austin.

We are still fighting pressure ulcers, but now we are working with a new program that promises to be more aggressive. It’s too early at this point to see what the results are going to be.

We are planning a charity golf event for April 25th at Lake Texoma. We will be providing substantially more detail in the very near future.

Our insurance company has approved a power wheel chair, and we are currently discussing which methods of control we want to use. We expect it will be delivered before the end of February.

The next update will be at the end of February.

2008

December 23, 2008 >

The first half of December found Joe back in the hospital. After a week or so of running high temperatures, Joe went to the ER and was admitted into the ICU. The issues were pneumonia, an MRSA infection, and Sepsis, which is an infection in the blood stream. After a week in the ICU Joe was transferred to a regular room and spent a total of fifteen days in the hospital. He is home now, however, getting ready for the holiday season.

This caused us to get behind on our appointment with Assistive Technology from Baylor, but we are still working toward getting our hands on the voice activated computer system by March.

The healing process for Joe’s pressure ulcer continues. It will not be gone by Christmas, perhaps in another few weeks. It is amazing that you can develop one of these in just a couple of hours, but it may take six months to heal.

The van continues to work out well, and we are grateful for having it.

Joe and Sue are working on writing appeals to Joe’s insurance company for coverage of durable medical devices such as a Hoyer Lift. At present the insurance company has not agreed to fund any durable medical devices.

As a final note for the year our family wishes to express a sincere note of thanks for the support of friends and family who have helped us make it through the first six months of our new journey. Your support was crucial during the difficult times in 2008 and will continue to be in the future.

November 25, 2008 >

We finally received our van, and it was worth the wait! It came with another gift, that of lower gas prices. Good thing, because it’s not exactly stingy on fuel. We have posted a couple of pictures of the van under the photo section under friends and family.

We had a meeting with DARS where our work plan was accepted. Shortly after Thanksgiving, the Assistive Technology director from Baylor will be out to the house to write a specification for voice activated and environmental software. This should be submitted to Austin in December and we hope to have hardware and software by February.

Joe’s pressure ulcer continues to heal, perhaps by Christmas it will be gone. The best solution to these things is clearly prevention, which we are trying very hard at. Joe also continues to fight various infections but so far nothing serious

Sue and Joe recently attended the annual fundraising dinner for the Joey Wilkins Foundation. This is the organization that remodeled our bathroom and installed ramps to the house.

It looks like Joe will be accepted for Social Security Disability and ultimately for Medicare. The important aspect of this is acceptance for Medicare.

October 15, 2008 >

After working with wound care specialists at Baylor, Joe’s pressure ulcer appears to be doing better. It’s a slow process however and we have to take it day by day.

Recently Joe had a cat scan to evaluate ongoing issues associated with a urinary tract infection. Nothing specific was found and Joe will probably have an out patient procedure at Baylor to further diagnose.

The recent golf outing associated with the Southlake Lions Club proved to be a successful event!

The wheel chair van is now scheduled to be ready by October 19th. We continue to have access to a loaner van which helps out a great deal.

The recent golf outing associated with the Southlake Lions Club proved to be a successful event!

It looks like our meeting with DARS will occur sometime in the next month. We will hopefully find out the status of the voice recognition software.

It looks like our meeting with DARS will occur sometime in the next month. We will hopefully find out the status of the voice recognition software.

September 15, 2008 >

The pressure ulcer has gotten worse and Joe will be visiting one of the top doctors at Baylor Rehabilitation this week for consultation.

On Monday, September 22, the Lions Club of Southlake will be hosting their annual golf outing and proceeds from the sale of mulligans will benefit our SCI fund. Here’s hoping for a lot of needy golfers looking to legally improve their scores!

On Saturday, September 20, a benefit was held by Plano neighbors at the Empire Room in downtown Dallas. It turned out to be a wonderful evening and was attended by many long time Plano friends, new friends from Grapevine and Southlake, and work friends and associates from Lennox, Titus/Air Systems Components, PCI Industries, and Ridley Insurance. Both the view and food were terrific and there were many great items for attendees to bid on during the silent auction. A special thanks goes out to Mike and Karen Secor, Karen McGuffie and all those who worked so hard to put on this fun and successful event.

Discussions with DARS (Texas Department of Rehabilitative Services) were initiated and we now await their findings regarding funding of the voice activated computer system with environmental controls. We are presently working with DARS to speed this process along.

September 1, 2008 >

The pressure sore has not healed as expected and Joe has been restricted to more bed rest, much to his dislike. Thank goodness for the Olympics, conventions, and books on tape!

On Saturday evening September 20, family friends from Plano will be hosting a benefit which will be held at the Empire Room in downtown Dallas. The event runs from 7 to 11 pm and will feature cocktails, hors d’oeuvres, and a silent auction. Please RSVP by September 10th..

Modifications to the van are taking longer than expected but in the interim we have been provided with a loaner van. While not suitable for travel over great distances, the van has been a huge blessing, allowing us to get out on an as needed basis. We now expect to take possession of the modified van by the end of September.

Discussions with DARS (Texas Department of Rehabilitative Services) were initiated and we now await their findings regarding funding of the voice activated computer system with environmental controls. We are presently working with DARS to speed this process along.

August 16, 2008 >

The stay at Baylor Grapevine turned out to be longer than expected. Doctors were able to get a handle on the blood clot issue but there was a urinary tract infection that we didn’t know Joe had. It turned out to be a fairly serious infection and caused the stay to run to 8 days.

On August 9, Joe was able to return home for the second time since the accident. He was looking forward to getting into an established routine. It was not to be, however, as two days later we discovered evidence of pressure sores which can be a common problem among spinal cord patients. The presence of these required Joe to stay in bed around the clock but at least he is at home. Hopefully within the next week his pressure sores will be sufficiently under control so that Joe can get back into a wheel chair.

On Monday September 22, the Southlake Lion’s Club will host their annual golf outing and revenue from the mulligan purchases will be directed to Joe’s SCI Fund. Joe will be sending invitations to this golf outing in the near future. Last year, proceeds from mulligan purchases were directed to a police officer from Southlake who was injured in the line of duty.

Check out the pictures on Joe’s web site. You may be surprised to discover who all is there!

August 1, 2008 >

On Friday July 25th, Joe was released from Baylor Rehab Center and was able to go home for the first time since his accident. It was a momentous day.

During the first week at home, we worked on developing and implementing a daily schedule which would work for everyone’s situation. By the end of that week, we had gotten surprisingly efficient at handling a myriad of tasks associated with care for a quadriplegic.

That first week, Joe was able to follow up with most of those who have shown us support in a variety of ways.

Real Life Rehab began working with Joe on an in-home basis to help ease the transition from hospital to home living. They also taught us new and more effective ways of rehab for both physical and occupational therapy.

Joe’s taste buds were reawakened following six weeks of assault by the bland offering of hospital food.

We have been looking for a van/transportation but continue to encounter problems with the floor to ceiling height of the van relative to the height of the chair. With the help of friends in Plano, we were able to find a used van that should fit our needs. Following some modifications, we hope to take possession of the van in mid-August which should provide for a tremendous increase in mobility.

On Friday, August 1st, the physical therapist from Real Life Rehab noticed signs of blood clots in Joe’s legs. After conferring with doctors from the Baylor Rehabilitation Center, it was decided that Joe should go to the ER to have this checked out. Blood clots as well as a urinary tract infection were revealed and Joe was admitted to Baylor Hospital in Grapevine. A three to five day is expected where upon Joe will once again be released home.

July 23, 2008 >

Received new power wheelchair which was much better suited for driving control purposes. This chair will be the platform on which Joe’s’ custom chair will be based.

WFAA (channel 8 Dallas) ran a story based on Joe’s letter to the editor of the Grapevine Courier. Following that broadcast, the jogger who originally found Joe got into contact with us. CW33 (channel 9 Dallas) ran a story about neighbors helping neighbors which featured all the assistance provided by AMBUCS and the Joey Wilkins Foundation and our neighbors and friends.

AMBUCS agreed to provide ramps and a sidewalk in order to facilitate wheelchair access by Joe to our house.

That same week, the Joey Wilkins Foundation agreed to remodel the master bath in our house in order to make it wheelchair accessible. They also widened certain doorways to permit wheelchair travel throughout the house.

July 8, 2008 >

Transferred from Parkland Hospital to Baylor Institute for Rehabilitation
Spent four days on third floor recovering from infections and lung issues prior to being transferred to the fourth floor which is all spinal cord floor

Began rehabilitation which primarily consists of physical and occupational therapy, attending classes related to caring for spinal cord injuries

Received projected release date of July 18th

Began working with various wheelchair technologies for best fit

Introduced to a variety of adaptive technologies
Tested a voice activated computer software system by the name of Dragon. This software allows the user to type up to 165 words per minute by simply speaking to the computer. In the test case that I conducted there were no errors translating from voice command to the word document. In addition, Excel spreadsheets can also be developed utilizing the Dragon voice activated software.

Evaluated an environmental control package which interfaces with both the software and the wheelchair to turn on and off lights, control thermostat setpoint, access TV/radio/VCR and open and close doors.

Tested an automatic feeder system which allows the disabled person to feed themselves

Evaluated through actual use, a variety of daily use equipment such as shower chairs, lift systems and manual wheelchair platforms. These are all devices which we will be using in our home every day following our release.

Health Status

Began rehabilitation which primarily consists of physical and occupational therapy, attending classes related to caring for spinal cord injuries

Underwent additional surgery on July 8th which was performed successfully and without complication.

On July 10, the Occupational Therapist noticed some muscle contraction in both biceps. Following that the therapist began daily electrical stimulation of both these muscles.

My spirits are high and the outpouring of support continues at a high level, all of which help us to keep a positive attitude of our situation.