My son, Patrick will have been injured one year on March 17th. His injury is considered incomplete T-11. He has had many hurdles since the injury -- surgery for HO, neuro problems (he's epiletic), UTIs -- you name it, he's had it! He also has a stage 4 pressure sore and will have a "muscle flap" on February 10th. He is at Magee Rehab again -- seems like most of the past year has either been in the hospital, rehab or a nursing facility. He's only been home for a short time.
The Drs at Magee Rehab are encouraged with sensations Patrick is having. He can feel cold, has sensations down to his knees. He can move his feet about an inch in all directions.
Physical Therapy says as soon as he is medically cleared from the surgery, they will start getting him onto the standing frame to start building his tolerance. They have also said he is a definite candidate for locomotor training. His Dr says it could have "a profound impact" on him.
Patrick says that he "will be walking by the end of the year".
As Mom, I am so hopefully and excited for the possibilities, but at the same time I am trying to temper it a little. I am so afraid that if he can't get the results he wants, he will hit bottom again!
Is there a reasonable expectation that he could obtain a significant recovery??? Or do we need to brace for what disappointment will bring????
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Sensations and Movement -- Good news!?!?!?!?
- By GailP
- Posted January 30, 2009 at 9:43 am · 8 replies
- In Family, parents and caregivers
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- By graybeard
- Posted January 30, 2009 at 8:05 pm
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Wow....a lot to sort through. The sensations and movements are very encouraging. The Locomat will be a very huge help with muscle memory. He has a very steep climb ahead, with pitfalls, and certainly some highlights as well. I really wish I could offer something concrete to help, but as you and your son are well aware, each injury is different. At T-11 inc... I feel ok saying that he should be able to stand, and perhaps take steps with braces and either walker or crutches. He will need LOTS of upper body strength. But this is what I was told..For every week that your muscles dont move, it will take 3 weeks to recover. That is if the nerves reawaken of course. So, better to look furhter down the road and then measure your success. He needs to stay determined, dont let the bad days drag down the good days. It is tough, and I pray he gets every bit of his recovery, as I pray that we all do.
PS---Damn shame on the surgery, that had to be a rough one to get through....glad he has rehab lined up. Take care.....
- By GailP
- Posted January 31, 2009 at 8:26 am
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Greybeard ~ Thanks so much for the information, support and encouragement. Patrick has been through so much!
I'm so glad he is back at Magee -- it's definitely the right place for him. I'm encouraged by his attitude and determination. If anyone can succeed, he will.
My husband (not Patrick's father) and I both have MS, so we understand a lot of the neurological aspects that Patrick is dealing with. It's also hard for us, as we're in Michigan and he is in Pennsylvania. His father is there with him and giving him support. We've made several trips out there, which is difficult for us, as we have to drive and use hand controls.
The complications he's had have been real setbacks for hims, but he's come through every time. He had been transferred from Magee to Meadow Springs (a nursing rehabilitation facility) until his Muscle Flap surgery, due to insurance issues. That place was HORRIBLE!!! They totally neglected him and didn't even do his ROMs. He lost 30 pounds there in a month. When Magee found out, they transferred him back there and that's where we stand today. Oh, when he came back to Magee, he had C.Diff, so he's had that to deal with, along with a UTI that had him in Intensive care!!!
I will continue to encourage Patrick to reach for the stars -- to do his absolute best to try to get back as much as he can.
I appreciate your encouragement.
- By mary508
- Posted January 31, 2009 at 8:34 am
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This does sound encouraging but you are correct to be wary of where your and your son's minds take you. We are not as fortunate as you. My son's injury in C6/7 complete, almost 2 years out (he is now 21), and he does not have any sensation or movement below his injury. But we did meet people in rehab with incomplete injuries and some movement and sensation and as I think you are realizing it can be a mixed blessing. I had this exact conversation with the Mom of a friend from rehab who was incomplete and entered rehab at the same time as my son. By the time we left rehab, my son had come to terms with what his function was going to be and has progressed nicely both physically and emotionally. His friend unfortunately had been focusing only on walking because of the movement she had. She went home depressed because she had convinced herself that she was going to walk home. Because her focus was to walk again she felt she had failed. If her focus had been to just develop any function she could then her outlook would have been different. She left rehab with the ability to walk short distances with a walker and she was able to put her own chair into her car and support herself on the car to walk around and get in. To her, all she knew was that she wasn't walking as she had planned. To my son...he would give anything to have that limited function. In my opinion and from my experiences with my son and others, I think the moral of the story is that the key to survival and emotional well being is to work to develop any function that you can, and your son has a great opportunity to do that, and appreciate what you get back for what it is, not what it isn't. Always know that someone else would give anything for the function you have. We as moms play a huge part in helping our kids realize that. We have to keep reminding them to appreciate what they have and try not to focus on what they don't have. When they get out in the community they will encounter people with much less function and they will hear over and over again....I would give anything to have what you have.
Now..will our sons walk again....I am sure of it. But I want them to live their lives happily and productively and focus on school, friends, getting the girl, etc while they keep their bodies strong and ready for what is to come. My son goes back to Shepherd regularly for therapy and works out a local gym for people in wheelchairs. We are scheduled for Beyond Therapy in May. He will use the Lokomat because he has no function but your son should take full advantage of the locomotor training, the FES bike, Parastep, stander, Geiger, etc any way you can. Our bodies are amazing. I don't why it would be such a stretch to believe that signals can be rerouted around the injury if someone is motivated enough to work on that every day. With my son's injury he is not as motivated to spend time on that every day. With your son's function that should be motivation enough!! Our best to you and your son. Keep us informed on his progress. It's very exciting.
Mary
- By janders199
- Posted January 31, 2009 at 10:37 am
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This is great news. Thanks for sharing. Keep the faith. Give him high expectations, and we will improve, and yes, walking again is a great goal for him. Don't tell him other wise or it will become a self-fullfilling prophecy. Encourage him.
Best,
Jim
- By GailP
- Posted January 31, 2009 at 11:15 am
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I so appreciate all the support you have given me! I am so excited for Patrick and the possibilities ahead of him. I encourage him to work as hard as he can! I pray that we get good results!!
His surgery is February 10th. As soon as he's healed from that, things can begin!!!
- By graybeard
- Posted January 31, 2009 at 1:02 pm
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Mary508---that was one excellant post. Thank you for taking the time to write that! The young lady you describe, that is exactly how I function. I dont use the chair at work, but if I need to go shopping or into a crowd, I use the chair. Much safer. At my age, I try each day to see whats better, but also to get the day's work done, and not dwell on the 'what ifs'... LIfe dont wait for ya, ya gotta live it! J-199...absolutely thank God for what we have. I forget to more than I want to admit, but He hasnt forgotten me... Gail, Patrick has a tough stretch after surgery, as those wounds take a great while to heal..protein, ROM, and when possible exercise the legs. Encourage him to keep trying to move anything...the body will respond to repeated efforts...please tell him to NEVER give up! Take care..
- By DianaJ
- Posted February 7, 2009 at 4:38 am
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Good luck with the upcoming surgery and with your new opportunities in Rehab! As one with a fifteen year old, incomplete injury, I can say time and effort put in now are your best bets for the greatest potential recovery. It will be easy to get tired or discouraged and miss the often subtle changes that can take place during recovery. Keep a journal and note gains made in weeks and months, if not noted in days. This will help you see progress IS being made, and whether this is physical or emotional progress, or both, I am sure you all have room for some happiness and growth in the coming years! Hang in there and let us know how you all do!
Diana
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