8/16/19
I thought it might be interesting for those of you following this to know what a typical day at Shepherd involves. This morning I awoke around 7:30. My aide came in a short while later and performed my morning catheterization. My occupational therapist arrived at 8, and together we worked for 90 minutes on transferring me from the bed to the shower, taking a shower using a shower wheelchair, transferring back to the bed, drying and then dressing myself, and then transferring once more to my wheelchair. Sounds simple, but it ain't easy, although it is noticeably easier than it was a week ago. At 10 I met my recreational therapist and she took me and one of my neighbors down to the gym with more weightlifting equipment. She put me on a device that had me pushing and pulling on handlebars of sorts which moved my legs and feet in a cycling motion. This is is supposed to build endurance and improve muscle tone and blood flow of the legs. Did this for 20 minutes, and then over to another machine that allowed me to work on strengthening my back and arm muscles. I still notice some lightheadedness with exertion, but it still feels good to break a sweat again. Free from 11 to 1 for lunch, tidying up my room, listening to some music on the sweet Denon sound system sent to me by my Vinyl Club buddies (thanks Rodney, Will, Jimmy, Reid and Bob), and catheterizing myself. Typically I would have a session with physical therapy in the afternoon, but today a group of 4 patients along with our PT and OT will self propelled down Peachtree Avenue to a grocery store in order to shop for items for a cookout we're having tomorrow afternoon. Wheeling back in 90 degrees going mostly uphill left me exhausted. Most of the structured activities are over by 3 or so, leaving time for rest or even a nap.
Getting used to being int the wheelchair for longer periods is encouraged, and the longest I've been in mine thus far is 13 hours. When in the chair we need to do a weight shift every 30 minutes in order to take pressure off of the skin overlying the ischial tuberosities, or "sit bones". This involves either leaning from side to side or forward for a minute. Speaking of wheelchairs, I was fitted for the wheelchair I'll receive when I'm discharged from Shepherd. You would be surprised at the number of options one faces when selecting a chair. First there's the style, then the brand, next the type of wheels, rims, breaks, and so on. Getting a titanium frame is an options, but insurance won't pay for that, so it's mostly aluminum. The upgraded wheels can have carbon fiber spokes in wild colors, and the color of the frame and highlights also present an overabundance of choices. Shockingly, the price of such a wheelchair without insurance is 5-6 thousand dollars, and an electric wheelchair can be as much as 45-50K! That's what happens when a device gets medicalized and insurance companies get involved.
But I digress. My bowels have regulated nicely, and I am now on a bowel program which uses rectal stimulation to induce the rectum to evacuate regularly. Ask me offline if you really want to know more about this, but I suspect that the omission of further details would be the preference of the majority of the audience. My pain is well controlled, I'm sleeping well, and generally eat with relish. The grieving for what I've lost continues, but I recognize that there is still so much to live for, and that life still holds nearly endless possibilities. It's up to me to seize them, which I plan to do just as soon as I get through all seven seasons of Game of Thrones.
Comments (37)
Robert, Your typical day sounds exhausting---particularly the uphill trip back from the grocery store under your own power in 90 degree heat. I am glad that things seem to be going reasonably well for you. And yes, the grieving for what you've lost is going to continue for a while, but it's good to see that you are able to recognize the possibilities. You're still in my thoughts and prayers.
Thank you for painting us a picture of what your recovery is like. It’ll make it easier for us to understand once we get to see you again! I hope you picked a really snazzy color for your spokes😁
Really Proud of you Rob! Keep up the vigilance! Hope you have a great cookout! Best, John Mitchell
You are amazing and I so appreciate your attitude and grit. We all miss you (especially our mutual patients) but I hope you make sure you take all the time YOU need to heal before coming back to help others. Take care. Susan Modesitt
I love your seizing of possibilities. Going uphill in the Atlanta heat makes me tired just reading about it. Keep seizing the day! Continued prayers. Sharon Spalding
Rob, you continue to amaze with your determination and sense of humor. My prayers for more successes than setbacks and more smiles than grimance. I send love, joy and strength to you and to Nancy.
Thanks for sharing your new "world" with us - most of us have little or no experience with the obstacles you're so courageously facing. You're truly an inspiration to everyone who knows you and we all appreciate your candor and strength in facing this major change in your life. The positive, can-do attitude you've embraced, sprinkled with the disappointments you encounter, show us what an amazing man you are. Keep sharing - it helps those of us who follow your posts realize just how precious life is.
What a day! I’m exhausted just reading about it. With your spirit and gift for meeting challenges, you will do this much faster and better than most. I’m not at all surprised by the cost of the wheelchair. A month ago the PA I’ve been seeing regarding my fractured femur, ordered a small ultrasound machine made by biovenitus that I use on three areas of my leg for 20 minutes a day. Cost -are you ready - is $4950 ! I’m a bit skeptical if it even will do what it’s supposed to do -speed healing. Nice to know you’re getting about so well in a wheelchair and can even get out of doors. Blessings to you and Nancy.
Hi Rob, I have been thinking about you a lot since I heard about your accident. It is good to hear that you have kept your wit and positive outlook. A sense of humor and perspective will go along way. The amount of support you have gotten from friends and colleagues is incredible. I will continue to send positive thoughts your way. Pat Buchanan
It was good to hear from you. Think of you often. My nephew suffered a spinal injury at the age of 23 and I know it is not an easy journey but I know your determination will keep you moving forward.
Good to hear about the continued progress. On wheelchair propulsion there is no need for electricity if you have fire extinguishers available. Brainiac Science Abuse covered that topic 10 years ago. The Brainiac show can be considered a demented British version of Mythbusters. https://www.youtube.com/watch?v=TuRIOjGrPcc
Rob I have reached out to a couple para athlete friends. I hope you will be hearing from them soon and that you will not object to my having initiated these contacts.
Rob, it's good to get these updates from you. I continue to be impressed and inspired by the positive outlook, humor, and grit that you show in learning to live with new challenges and realities. Positive thoughts and prayers are constantly coming at you!
No wonder you have lost weight with all that work! I am glad that you are starting to reap the benefits. The cookout sounds fun! I hope you get to enjoy some fresh Georgia peaches too! Your determination and ability to focus on what is important in life is inspirational. Hugs to you both!
You're amazing! Thanks for keeping us updated on your progress. It's going to be a whole new world for you. One that I'm sure you'll tackle with enthusiasm, determination, and a sense of humour
Rob, thanks so much for posting this...it sounds exhausting! But I love it that you're getting out and about although 90 degrees is absolutely brutal...but what a workout! I do have one question...do you skip breakfast? You know how important that is :) Anyway, it sounds like you are making wonderful progress. Please continue to keep us updated. I think of you so very often.
You continue to be our star - though I bet that there are times when you feel more like a red dwarf. I read your posts with great interest and cheer you on from up here in the Blue Ridge. Big, etheric hugs coming your way. - Virginia
They don't call that section of Peachtree Street "Heartbreak Hill" for nuthin'.
Wow! You sound great and like you’re making a crazy amount of progress! Thank you so much for sharing your day. I’m still thinking about you and cheering you on all the time - lots of love to you and Nancy both!!!
It is so inspiring to see how you persevere through it all. Also the humor is uplifting and so happy that is remains with you. I continue to pray for success around every corner . We so look forward to seeing you.
Rob- Thank you for sharing with us what your day is like. We all think of you so often and wonder what you might be doing at the moment. IT's really helpful to understand it all and it certainly is grueling . Your experiences put so many things in perspective, you know? I continue to be amazed with the grace in which you are handling this. I Suspect that you don't realize the the degree to which we are all in awe of you- you are having a huge impact on your community and those who love you. It's really huge. I look forward to your next post. Mnm
Hey, Rob. Thanks for sharing what a day in your life is like. Your daily accomplishments are truly impressive. I am so glad you are in a place that is equipped with the best people, equipment and resources to help you thrive and move forward, nurturing your emotional needs and physical strength. Sending healing thoughts and hugs.
Wow...you do more in a day than most of us! Each day will come with its challenges but it's great to read how you are facing each challenge with such courage and positivity. Keep up the good work!
Hello, Dr. Kyler, thank you for the informative update , I always knew you were a cool person , the way you handled your challenges amaze me. Thinking of you and hoping everyday gets better and thank you again for being an inspiration! Deb
You are amazing. Thanks for sharing a typical day. I think about you and Nancy all the time! Sending good thoughts to you in ATL.
It's wonderful to read of your progress! As I learned with my grandson's cancer diagnosis at the tender young age of eight, we cannot always know the reasons for the devastating events that occur in our lives. Parker has taught me to believe and search for the reasons. In doing this, amazing opportunities have opened up that would not normally have been ours to seize. Keep searching for yours as I know you will...
Hi Rob, Thanks for the update. I think of you and Nancy often as I know what hard work you face daily. It seems strange to walk about Chautauqua and not run into either of you. It sounds like you are progressing well. Glad to hear you had an outing and have ordered your chair. Exhausting as it must be, it sounds like you are hitting that point of exponential learning and all will start to fall into place. Best wishes, Tina
Amazing! Your updates are greatly appreciated.
Thanks for letting us know many details of how your progress is going! I’ve been wondering what it’s like at the Shepherd Center for you. So glad to hear your pain is more controlled & stuff is working out well again. It sounds like you’ve been making great strides at getting mobile again and being active. Really looking forward to seeing you before too long!
Thanks for the update, Rob. We are all looking forward to seeing you back in Staunton!
Dr. Kyler, I keep forgetting to mention https://universaldesign.org/about. It is a non profit run by our niece and her husband. Love seeing you getting back to activity. Scott loves outdoor activity. Roll on, Sharon
I think your last couple of sentences ring so true. Going through a life changing situation can be a heavy burden but we can either dwell on it and wallow or we can say " I shall make the most of this and be an encouragement to others who are less fortunate than me, because I have the faith and strength to get through this". Thinking of you and your family often, and continue to pray that God gives you all the guidance that you need. You are such an inspiration. Look forward to seeing you back at AMC. God Bless. Brian and Penny
I love this!! Thanks for sharing it and your spirit with us! Keep it up, it’s so worth it!
Your ending left both George and I laughing out loud! You may have lost the use of your legs, but you have not lost your dry, witty sense of humor. :-)
Rob, You are awesome! Buckley and I continue to love reading your honest comments that have that Rob edge to them we know and love. Look forward to seeing you back in the Queen City when that time comes! Cheering you on day by day, Virginia and Buckley
Think of you often. You took excellent care of my mom when going through her treatments and I always loved your great bedside manner. She was saddened to hear about your accident and also asks frequently if i’ve heard how you are doing. You are an inspiration and we love hearing about the truths that go along with your recovery. Keep working hard! Sarah Murphy,RN Augusta Health
Hi Dr. Kyler! What a great praise report. Stay encouraged! Sometimes a setback is a setup is a for something greater. I know you will seize it! Jessie W.