Settling in...

Friday, Jan 20,   Well, we have now been home for one week and things seem to be settling down a bit.   Quite often I use this Blob to thank people who have gone out of their way to help us, but this time I am going to talk only about Gary. I will still have thank you's to more angels at another date.   Gary is an amazing person. He has been so strong throughout this entire process. He continues to do as much as possible for himself while trying not to ask for help unless it is absolutely necessary. I am constantly impressed by his determination. Sometimes it will take him over an hour to get dressed, but he will not "bother" me and he will keep working at it until he gets it done. His pain level seems to be a little worse lately, but he doesn't complain and if I show him any sympathy he just shrugs his shoulders and says "That's the way it goes." He can now get in and out of the shower by himself and that is wonderful. He has always been such a clean person and 2 showers /week in the hospitals just wasn't working for him. Sometimes it takes almost 2 hours...but he is squeaky-clean!!!   Gary has his own room downstairs now and he spent lots of time organizing his clothes (on the shelves I hung in the closet!!! DYI Judi) so that he can be self-sufficient. Also he has alot of medical supplies so we have reorganized the bathroom across the hall from his bedroom.  All of his supplies are within his reach, so he can go solo. I actually liketo help him, but it makes him feel better to be independent. At times it is hard NOT to help, so I have to remind myself to stay out of his way and let him try things.   At Shepherd Center they told us that life would be "lower and slower". From our experience that is so true. "Slower" of course means everything does take longer- an adjustment for both of us. "Lower" means that alot of our house no longer is accessible to Gary. Much is out of reach, so we are making changes so he can reach things, WOW!!!! Who knew?   It is difficult for me to explain how much admiration I have for Gary's attitude. He continues to try and make the best of things. He is very patient when things aren't going his way. Believe me some of the things I have seen him struggle with have brought tears to my eyes as I watch....like taking almost 30 minutes to get his shoes on. He doesn't scream (or even swear) and throw the shoes like I would have, he just keeps working at it. Remembering how independent he always was I guess I shouldn't be surprised . However watching him struggle is hard. I have told many people that sometimes I think he is handling all this better than I am!!   I hope you all are well and that we will begin to see our friends soon,   Judi and Gary 

Home Sweet Home!!!!!

Sunday, January 15, 2012   WE ARE HOME!!!!!   After months of being away - Gainesville, Atlanta, Tampa - Gary was discharged from the VA hospital in Tampa....on Friday the 13th and sent home. Given my run of luck we didn't relax and feel really safe at home until THAT DATE was over. BUT we are here safe and sound and beginning to settle in. I can't explain Gary's joy at being in his own home. He is thrilled. We are making some modifications to the house as quickly as possible so that Gary can efficiently move around and accomplish Activities of Daily Life - ADL for short.   The list of Angels is GIGANTIC in this blob! We are so blessed to be surrounded by such wonderful people.   Our good friend Jay came over to help and will be laying a new bedroom floor for Gary on the first floor. While he was here Jay kept finding "little" thing to do to help us out, what a champ! Nate, Hali's significant other has been helping while we were away and had some of his "guys/friends" build a ramp, level out thresholds and enlarge doorways for the wheelchair. What a great job they did...we are ever so grateful to them all!     Anyway, I owe a HUMONGOUS thank you to Josh for putting on a fundraiser for Gary and me last Saturday evening. The dance was a terrific success. Words cannot express how wonderful it was to see so many friends willing to give of themselves to help us. Again it is hard to put into words how deeply we are touched. I was grateful to EVERYONE who showed up or sent donations, but a special thanks goes to: Josh for doing so much great work, getting the word out...and doing his usual blend of funky, interesting and talented publicity!! Sabrina who hasn't had a day off in months for taking the time to drive most of the way cross the state and share her love for and knowledge of dance with us. She is a very giving and special friend! Thanks to the GREAT DJs for donating their time - Earl and Bruce who both drove in from Jacksonville. I love dancing with both men! Their music was terrific!  Usually I don't get to dance much with Earl - because he is always busy with the music, but when I do he is so much fun...and Bruce and I have always have a great time! We have danced together for years and it feels like a new experience each time.Thank you both. I am also grateful to Chad for sharing his sound system and the great dances. And I forgot to mention that Chad came to our house TWICE! to install wireless internet - what a good friend. We are thankful that Sweetheart Swing organizers Sandy Chase and Phil Dorroll donated a free pass to that event, how thoughtful! we are grateful to the generous pros who donated private lessons to the raffle; Stephen White, Demery Strickland, Patti Jobst, Danielle Blouin and Sabrina Paxmann!! WOW!  And last but certainly not least Thank you to all the people who came and supported us. The event raised over $3000 for us, what a gift! We are still not totally sure what we will do - Gary has his eye on 2 different types of vehicles - a road chair (sort of like a manual ATV - if you can picture that) to cruise around the yard...or an exercise bike that cranks with hand pedals. Both options are possible and Gary is excited about both...so thank you to everyone who participated on our behalf. What a gift your friendship has been.   Anyway, as our life begins to return to a more normal pace we hope that we will be able to see all of our friends. Thank you all so much for hanging in there with us.   Judi and Gary

Happy New Year!!!

Happy New Year!

So sorry this is the first Blob entry in awhile. We have been quite busy ...as I am sure you all have been also.

We moved Gary to the Veteran's Hospital in Tampa right before Christmas Day. He seems to be doing well there and has basically told me to go home and leave him alone for awhile. (He means that in a good way.... He needs to concentrate on rehab and I have to catch up on stuff at home.)

Anyway, here is some great news: Gary came home for a visit and spent New Year's weekend at home - even though both of us were snoring and drooling well before midnight on New Year's Eve. It was wonderful to see him with the dogs. They all slept in bed with him his first night back!! We found that our home will accomodate his wheelchair without HUGE modifications. That was a relief to both of us. The VA will also help him financially so that is another bit of good news.

Gary is feeling better. He still has the neuropathic pain across his chest which will likely not go away because those nerves have been severely damaged. Most of the other medical complications are improving. New to the list of problems are leg spasms.  Apparently these are common with this type of injury, but they are unpredictable and can be powerful. The result of these are that sometimes he can't get his legs to go where he wants them to and sometimes they go on their own where he doesn't want them to.  (Kind of like me following Gary while dancing 2Step.)

Gary is becoming more independent at many activities. He is continuing to improve at dressing himself, showering and transferring himself in and out of his wheelchair. He wanted to try and get on the lawnmower when he was home, but the hardest part of our home is negotiating the yard and he couldn't get to the lawnmower. We will probably have to make some concrete paths around the entire place eventually.

In Gary's words the home visit was "bittersweet". He was so happy to be home, but it reminded him of what he is no longer able to do. Everywhere there are reminders of his active lifestyle. Consequently I will probably be selling the sailboat, windsurfing equipment and the kiteboarding CRAP...which I can't even look at without some cringing spasms of my own. Along those lines, Gary has asked me to take his dance shoes and boots to a dance this weekend. The dance is a fundraiser that Josh Angel and Sabrina Paxmann are so kindly hosting on Gary's behalf Saturday, January 7. Gary wants me to give his shoes away to anyone who wants them. I think most of them are size 9 - 10. I will be at the dance, but Gary will not.

Anyway, Happy New Year to you all.  Very selfishly I am hoping that 2012 will be a better one than 2011 for my loved ones and me!

Ongoing Treatment in Tampa

Dec 26

Well it is about time I finally wrote in this "Blob" as I mistakenly once typed it to Hali. With all of the confidence that kids these days think their parents know about texting, blogging, Facebook, etc. Hali actually thought that I really thought that was what it is called. So since then I have called this the Blob.

Anyway, I hope everyone is having a good holiday season. Gary and I have been so busy as I am sure you all are.

Here is what is going on now:

We packed up and left the Shepherd Center after several months of wonderful experiences there on Wednesday, Dec. 21 and drove to Tampa. The highlights of this trip were Gary getting in and out of the car with minimal help from me and me dismantling and "mantling?" the wheelchair to get it in and out of the car. I can't say it was smoothly done but we got to Tampa by ourselves!!! I have to say that I was much closer to a parking lot faceplant or meltdown than Gary was.

We checked into the Tampa VA on Thurs Dec 22 and Gary has been very pleased with the care he has gotten.

Eventually we should move into "self care" where he will stay outside of the hospital and I will be there with him. In the meantime, I have been able to stay with my good friends Danielle and Mike (and Brandi) in Tampa. Danielle and I had alot of good laughs...and a few good crys which was cathartic for me.

My dad and his wife Dorothy visited and were very pleased with how Gary looked and Gary was pleased with how my dad looked. Both men are getting stronger all the time (Dad having survived 3 different types of cancer at 89 was on his way to a Christmas cruise). 

Gary is becoming more independent and his spirits are still positive. Gary sent me home to spend time with the family...I hated to leave him but I know he is trying to watch out for my feelings and my stamina as well. Why else would he call me from the VA cafeteria (where he was having lunch with Santa Claus) to quote a statistic that spouses of paraplegics usually only stick it out for 2-3 years? (Wimpy, wimpy, wimpy.)

Then on Christmas Day Gary was visited by our good friends Randy and Susi. That was wonderful for him!

We believe that Gary will be at the VA for several months for continuing therapy and follow up. Alot of what they plan to do with him will take time to develop strength and skill. However it appears that I will be able to bring him home once in awhile for a visit. The rehab schedule seems to be quite aggressive. Alot of the patients in the Spinal Cord program are young military - recently wounded in combat and they are highly motivated. Gary's therapist challenged him to try to keep up with the young guys. As they were explaining to him the opportunities for sports competition one younger vet told Gary he would be eligible for the "Golden Games" HAHA!!

Ok, that's enough for now. Both Gary and I send our best wishes to you all,

Judi and Gary

Move to Tampa

Friday, December 16 Hello Friends I have been quite busy lately, so I am sorry that I have not updated this in awhile. We have been on quite a rollercoaster ride during early Dec. Gary and I moved into housing next door to the Shepherd Center. He has been attending daily rehab sessions and he has learned quite alot. Gary LOVES this because he has continual challenges. Therapists even come over to our apartment and give him tips and pointers on how to do things more efficiently. Gary is getting in and out of his wheelchair by himself, has learned to shower and dress himself and now can get into and out of the car. He is also still learning to play guitar. BUT the only song he knows is "Happy Birthday Dorothy"...which he has been practicing for 3 weeks now. Dorothy's birthday was December 8!  When he graduated from the inpatient program they gave him an award "Most Likely to Direct his own Care". He said "I don't know if that was an award or an insult." Next week he will be moving to Tampa VA hospital as an inpatient...we don't know much more about that yet. I am so grateful to Gary's brother Randy who came to stay with Gary while I went to see Hali graduate from UNF. What a joy that was. I am so proud of her! I don't know how she worked, put herself through school and helped Gary and I like she did!!! What a woman! We were all sad that Gary couldn't be there, but he very generously paid for the party. What a guy! Unfortunately my mom Doris has been in Hospice in Dallas for almost a year. Mom passed away yesterday. Miraculously I made it here in time to say good bye to her and tell her how wonderful she was as a mom. I am so grateful for that. I am also grateful to my brother, sis in law, and niece for taking such great care of my mom for years. We will all miss her and especially right now her Christmas cookies. Those of you who knew her know that she was just about the nicest person in the world. She will make such a great angel! This is probably my Merry Christmakwanzakah note to you all...so Happy Holidays.  Judi and Gary

Making progress :)

Thursday, Dec 1

A lot has happened since I last wrote in this Blog. I'll try to be brief as I know the Holiday season is approaching and folks get busier each day!

Gary is making good progress in his physical therapy. He has earned to transfer in and out of his wheelchair...into and out of bed, into and out of the shower and is working on the car and sofa. The more he does all of these activities the better he will get. Gary is continuing to want to do everything for himself to become more independent. His daily activities are quite exhausting because he tries really hard to do as much as he can.  Of course lots of repetitions will help to build his strength.

Gary's general health seems to be improving as his body copes with all of the changes. The nurses and staff are wonderful at the Shepherd Center and he is so grateful for all of the help he has received.

We finally know what our next step is...and it is exactly what Gary was hoping for. 

Dec 5 Gary will be discharged from the hospital and move next door to the Shepherd Center "Day Program". This means both Gary and I will be living in an apartment - on our own. He will go to rehab during the day at the Shepherd Center and continue to make strides toward independence. Who knows what I will do? I may blog myself silly.

At some point - probably in the category of several weeks later - he will move to a VA hospital in Tampa. Long story, but since he is an Air Force veteran the US govt will help with medical expenses. First he has to get admitted to a VA hospital so we will need to take that step sometime in the future. After that the plan would be to come home, but there are no time estimates yet.

Several of you have asked about Gary's spirits.

I think he is doing very well considering everything he is coping with right now. One of the many blessings at the Shepherd Center is that there are many people in different circumstances. Of course there are people who are in better shape than Gary- younger, lesser injuries, temporary damage. However probably the more significant impact is made by those who are in worse shape than Gary with much greater challenges. Part of the comntinuing therapy is discussions among patients and during this time they share their stories. Gary is always moved by these people such as a young man who cried because he could never have children, another man who wanted desperately to hang Christmas lights for his children but won't be home in time, a pastor who has been in traction for over 3 months and hoped to get the screws out of his head out last week but didn't. Not to mention the folks who are on ventilators, have no use of their arms, or can't speak because of the level of their injury. Gary feels he has alot to be thankful for...and I am thankful he is still around.

We both are thankful for our family and friends.

Here is a list of just a few of our recent angels:

Hali and Nate came to visit Gary in Atlanta during their Thanksgiving holiday. Gwen sent special music and arranged a photo of Stephanie Abrams to be sent from the Weather Channel - Gary thinks she is great!!! Beautiful plants from Hussein and Nargges, and flowers from the Bastardi family.

An inspirational CD and letter from Jim. Gift cards from Maria and Joe, my brother and his wife and Gayle. Yummy pies from Jan. I am sure I am forgetting so many thoughtful people.  Please know that it is just a lack of organization my part. Thank you to everyone who is helping us through this challenge!!

Sorry I guess this wasn't so brief. OOOPS!

Judi

More angels

My angels list is so long!!!

My father Bill, his wife Dorothy, my brother Bill and his wife Carol came to our house for a week. During this time they all acted like they were indentured servants. They did all the normal cooking and cleaning as well as painting furniture, washing windows, screens and cars, organizing paperwork and sheds, pruning, weeding....you name - it they did it!!! Hali and Bax chipped in and the only time anyone stopped working was to give me a bridal shower and celebrate my dad's 89th birthday!!! I am so grateful to them all for such love.

I'll list the "angel friends" later....

-Judi