Man's best friend

Thursday, Feb 8   As we settle into life back at home there are ups and downs. It is hard to summarize all of it. Gary is getting competently along inside the home. He continues to try to do everything possible for himself, but gets frustrated at how much time it takes. His general health seems Ok but there are lots of days he just doesn't feel well. His leg spasms are getting worse so we are hoping for more meds to help that out. Also a new apparatus arrived and was put together yesterday. It is called a standing frame and it has a hydraulic lift to raise Gary and hold him in a standing position. When used regularly it should help the leg spasms. These spasms are painful, not to mention disruptive. They are so strong that they can jerk Gary's body into precarious positions. We have heard stories of folks being thrown out of their wheelchairs - thankfully this has not happened to Gary (yet). Unfortunately we have not been able to get Gary outside very often. Our house is on bumpy, unlevel ground and the driveway is gravel. The wheelchair is not able to negotiate the terrain. We will eventually figure out some solutions to this but right now the only way to get him out is to drag him over the bumps....Bax is able to do this, but I am not strong enough. Our friends Randy and Susie visited and insisted he go all over the property. They took him as Gary would say "over Hell's half acre". It was great to see friends and they really helped Gary feel better!!! Bax has been terrific trying to do the yard maintenance, but NO ONE could follow in Gary's shoes as far as that goes. This is discourging to Gary and he keeps saying that we need to move because it is too much work.   Anyway I'll finish with a typical Gary story. When we discharged from the Tampa VA two very efficient nurse types came in with a computer to do the final interview. They asked Gary lots of questions carefuly noting each answer in their computer...Questions like "Do you know which medicines to take?" "Have you been warned how to prevent bedsores?" Then they get to "Who will be your primary caregiver?" He answers "My wife, Judi." Next question - "Is there someone else you can count on to help you in an emergency?" Gary says "Trevor"....and they question the spelling and carefully type in T-R-E-V-O-R. Nurse - "Who is Trevor?"  Gary - "My best friend" Nurses - "Where does Trevor live?" Gary - "He lives in the house with us". Nurses - "Can you get hold of him easily?" Gary - "Yes, I just call him." On they go with the rest of the questions....never realizing Trevor is the dog.   We do miss our friends and I hope that soon Gary will be ready to see them.    Thank you for caring, Judi and Gary 

Starting to renovate

Monday, January 30   I haven't written lately as there really hasn't been much new news. Actually there isn't much new today either so you can skip reading this.   Gary is continuing to try to adjust to his new life at home. Unfortunately he got sick after being home for about a week - I swear it wasn't my cooking. He claimed it was a really "weird" experience. He can't feel anything from the chest down so all the signs in the midsection that might accompany illness were not there; i.e. pain, cramping, etc. Although this may sound like a blessing it actually serves to mask any helpful hints to Gary or health care folks as to what is wrong. There are so many things about this paralysis that neither Gary nor I imagined which can be confusing and overwhelming.  After a visit to the VA in Gainesville and some antibiotics Gary is beginning to feel better. Whew.   Daily activities such as dressing and bathing still take up quite a bit of time but we managed to enjoy a new adventure...we went to the movies with my dad and his wife. It was fun for Gary to get out of the house and we even got there in time! Gary was so hapy he didn't run over or back into anyone in the darkened theater. We laughed our way through "One for the Money" and it was wonderful to see Gary laugh! (I love the Stephanie Plum novels on which this movie is based - probably because I can relate to her as she sort of incompetently and hilariously stumbles her way along.)   We are still quite preoccupied with modifications to the house to make things easier for Gary. One thing we don't have to worry about is the floor in his room. Our good friend Jay Tucker came out twice to our house and with his brother Will put new flooring down for us. They run a business doing this (and recently have added other handyman services to their repertoire). They did a wonderful job, so professional, competent and quick. These two unbelievable friends then would not let us pay them, no matter how hard I tried. "This is a gift" was all they would say. We are so blessed, and now Gary can freely wheel about, practicing his wheelies in his room - thank you Tucker Brothers!!!   I hope everyone who is reading this - both of you - are well and happy. Judi and Gary

Monday, January 30   I haven't written lately as there really hasn't been much new news. Actually there isn't much new today either so you can skip reading this.   Gary is continuing to try to adjust to his new life at home. Unfortunately he got sick after being home for about a week - I swear it wasn't my cooking. He claimed it was a really "weird" experience. He can't feel anything from the chest down so all the signs in the midsection that might accompany illness were not there; i.e. pain, cramping, etc. Although this may sound like a blessing it actually serves to mask any helpful hints to Gary or health care folks as to what is wrong. There are so many things about this paralysis that neither Gary nor I imagined which can be confusing and overwhelming.  After a visit to the VA in Gainesville and some antibiotics Gary is beginning to feel better. Whew.   Daily activities such as dressing and bathing still take up quite a bit of time but we managed to enjoy a new adventure...we went to the movies with my dad and his wife. It was fun for Gary to get out of the house and we even got there in time! Gary was so hapy he didn't run over or back into anyone in the darkened theater. We laughed our way through "One for the Money" and it was wonderful to see Gary laugh! (I love the Stephanie Plum novels on which this movie is based - probably because I can relate to her as she sort of incompetently and hilariously stumbles her way along.)   We are still quite preoccupied with modifications to the house to make things easier for Gary. One thing we don't have to worry about is the floor in his room. Our good friend Jay Tucker came out twice to our house and with his brother Will put new flooring down for us. They run a business doing this (and recently have added other handyman services to their repertoire). They did a wonderful job, so professional, competent and quick. These two unbelievable friends then would not let us pay them, no matter how hard I tried. "This is a gift" was all they would say. We are so blessed, and now Gary can freely wheel about, practicing his wheelies in his room - thank you Tucker Brothers!!!   I hope everyone who is reading this - both of you - are well and happy. Judi and Gary

Starting to renovate

Monday, January 30   I haven't written lately as there really hasn't been much new news. Actually there isn't much new today either so you can skip reading this.   Gary is continuing to try to adjust to his new life at home. Unfortunately he got sick after being home for about a week - I swear it wasn't my cooking. He claimed it was a really "weird" experience. He can't feel anything from the chest down so all the signs in the midsection that might accompany illness were not there; i.e. pain, cramping, etc. Although this may sound like a blessing it actually serves to mask any helpful hints to Gary or health care folks as to what is wrong. There are so many things about this paralysis that neither Gary nor I imagined which can be confusing and overwhelming.  After a visit to the VA in Gainesville and some antibiotics Gary is beginning to feel better. Whew.   Daily activities such as dressing and bathing still take up quite a bit of time but we managed to enjoy a new adventure...we went to the movies with my dad and his wife. It was fun for Gary to get out of the house and we even got there in time! Gary was so hapy he didn't run over or back into anyone in the darkened theater. We laughed our way through "One for the Money" and it was wonderful to see Gary laugh! (I love the Stephanie Plum novels on which this movie is based - probably because I can relate to her as she sort of incompetently and hilariously stumbles her way along.)   We are still quite preoccupied with modifications to the house to make things easier for Gary. One thing we don't have to worry about is the floor in his room. Our good friend Jay Tucker came out twice to our house and with his brother Will put new flooring down for us. They run a business doing this (and recently have added other handyman services to their repertoire). They did a wonderful job, so professional, competent and quick. These two unbelievable friends then would not let us pay them, no matter how hard I tried. "This is a gift" was all they would say. We are so blessed, and now Gary can freely wheel about, practicing his wheelies in his room - thank you Tucker Brothers!!!   I hope everyone who is reading this - both of you - are well and happy. Judi and Gary

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!