[LyF]

Since my boyfriend has moved from inpatient to outpatient the therapy is slowly tapering off where it used to be intense. Before, he had a purpose and motivation to exercise and work out with hope of strengthening his body and increasing his abilities. With the decrease in therapy and subsequent improvement, i fear he is hitting the point of realization that his injury will not permit him to improve balance and function any more. he is having a bit of a hard time and it is killing me to watch him suffer and to watch his legs get rapidly thinner and thinner. What can he do to keep going and really feel a sense of accomplishment, improvement, or at least wellbeing. how do we keep going on?? Does anyone know of any really good programs, preferably intense therapy places that won't give up on you and will always strive for improvement?

true agony is watching the one who means the world to you suffer and not being able to do anything about it

[Doug]

I know that this must be the biggest trial you and your boyfriend have ever been faced with. When you read about anyone’s first year or two in a chair everyone goes through difficult times and I want you to know for a fact that things do get better with time. His balance will improve greatly with practice and the muscles he can control will keep getting stronger. Being a para he will be able to do so many things still it will amaze you.

I recommend watching videos of other paras in action for motivation. Just seeing with his own eyes that there are so many things that can be and have been done by high-level paras should help motivate him. When I first got hurt I thought I would never really be able to do much as a C-5-6 quad until I saw it with my own eyes.

There is hope and you can do something about it. Just you being there for him is huge and helps more then you may know. Everything comes with time and practice….trial and error. I wish you two the best in your endeavors and know that you are not alone and there are so many good people on this site that can help you with this transition. My mail box is always open if you need anything.

Best wishes,

Doug

[Yasko]

Doug is totally right on with videos and magazines for motivation purposes! I remember myself laying in my hospital bed for 7 months strait, discouraged and in pain. Than someone gave me magazine in which I read about Para climber who has climbed on his first peak, and that itself gave me so much motivation and power to succeed, which is beyond explanation. Let him watch Murderball ( trailer )
Good luck and best wishes to both of you.

[Bob C]

It is hard to respond knowing so little about the situation. Age, location, previous lifestyle and other factors all relate. It sounds like he is involved with some kind of rehab facility and they should know of support groups and other activities to help him start reintegrating into the community. As a t4 para, he should have a great deal of potential, but things , including acceptance of the new status, take time. If you can share a bit more of the picture, we may be able to be a bit more specific and helpful.

[twisted_ophelia]

Does the rehab program offer any sort of recreational activity program ie. rugby, tennis, etc.,? Get him involved in sports and recreation. Like Yasko said, he saw the para climber in a magazine and got motivated. A lot of people with new SCIs will not realize at first how much they can still do. Get him into a pool and swimming. That works wonders. Or try to find a handcycle. The outpatient program may have a few. Wheelchair basketball even. Or therapeutic horseback riding. Tons of stuff for him. I've got an extreme sports blog you can show him http://mimimachine.blogspot.com and I fully believe that anybody can get out there and still do most of what they did before their injuries. I'm sure once he sees others in his exact shoes doing fun stuff, it will motivate him to get back into the swing of life.

The first year after injury, especially the first 6 months, are always the toughest and it can seem like life is over but it's not.

[LyF]

He is 22 and was working for a moving company. He was helping hoist a piece of furniture down from a second floor deck. the deck railing gave away and he fell about 15 feet. He was at Spaulding Rehab hospital in Boston for the first 3 months. they have a great inpatient program where he was very motivated and spent 3-5 hours a day doing intense therapy. now in outpatient he is only getting an hour and a half of therapy maybe twice a week. and often the therapy consists of sticking him on a hand bike and walking away. they do have access sports once a week there but it mostly just consists of either canoeing or hand bicycling. he hasn't really had the option of swimming, tennis, rugby, or any real team sports which would probably be really good for him. he is also supposed to use a standing frame once a day which isnt happening in his outpatient program and he doesnt own any of his own equipment yet. he is really interested in this e-stimulation rowing machine, but they haven't let him do that yet. i think swimming would be cool too, but i dont know where to go for that. his legs are atrophying really fast and i wish they would let him use an fes bike more often to maintain some of his leg muscle. oh and he also used to play softball before the accident. another upsetting thing is that it doesnt seem like his friends have been around much for him since the accident

sorry this is kinda jumbled..

[wheeliebear75]

It's more like "What can't we do?". There are those who have gone sky diving, scuba diving, there are all sorts of sports & activities that can still be done. Mostly it will depend on what sort of things he liked doing before he got hurt. And it is like night & day the difference from that 1st year to what/how things are like a couple years later.

[edlee]

Since he was hurt at work, I have to assume he is eligable for worker's comp,,, they will usually pay for just about anything you can get a doctor to say ( in writing) that he needs. Ask his doctor to prescribe additional training or at least recommend it in writing,, then present that to his insurance company case manager,,, that's what they are for.

A gym membership,, if you have one close by,, preferably one with a swimming pool, might be a good idea. They will usually be happy to give you a few day passes to see if the equipment is usable for him and if he likes the place. Many of the machines have the seats attached and transfering and balance would be an issue,, but a few use removable seats, where a wheelchair can move right in. I also had a lot of luck with one particular recumbant bicycle that had levers for the arms in addition to the pedals. I simply lashed my feet to the pedals with some straps, then used the levers. Got a good aerobic workout, plus my legs were moved in a peddling motion. I kept most of my leg mass for the first four years,, until a new back pain, this winter put a stop to it. They lose bulk quickly when not kept in motion.

Motivation,, this early in his new life,, well, it's hard to find. I'm probably not the one to ask,, it seems I,ve lost mine lately,,, but then,, he is forty years younger and hopefully more easily motivated than me.

Good luck to you both
ed

[LyF]

thank you everyone for your responses

if you get your legs moving again, can your legs regain some of that bulk again?

LyF

[twisted_ophelia]

LyF, on Jul 28 2009, 09:26 PM, said:

thank you everyone for your responses

if you get your legs moving again, can your legs regain some of that bulk again?

LyF

Yes, definitely. I think if they were severely atrophied and have been so for many years, it may be difficult (or impossible, who knows) and I have heard it is harder for men to keep up leg muscle mass than for women. But muscle mass can absolutely be regained.

[Heather1984]

We all have been in the same place you are. My injury was a little over a year ago and I'm still getting used to it. The best thing you can do for him is be there. It is going to be really hard for a little while, but I promise it will get better. Don't let him give up. He will get better balance with time.I have been riding horses since I was real young. I still ride now (had to get a special saddle made) it has helped with my balance. I have gotten a lot better since I have started riding again. It is also a good workout that's fun. I hope things start to get better.

[Bob C]

He can have a productive, enjoyable life. As others have said, this is a relatively recent injury. It takes time to sort out the imcplications of the injury regarding the future. Workers Comp and the possibility of law suits can be a deterrant to agressively dealing with matters. There is sometimes a reluctance to put one's "best face" forward if there is a belief that his disability will be seen less severe by lawyers, jurors, bureaucrats, and others who may eventually be involved.

Right now, you are focused on body image, but in the long term, you will learn that it is the person and his functional abilities that support successful coping. It sounds like he is able to care for himself. Has he considered driving? That can hasten and heighten independence dramatically.

As for friends, I found that most of my old friends were uncomfortable with my disability and quickly stopped coming around. When you find new ones who only know you with the SCI, they are more likely to stick by for the long haul. But you have to get out to meet new people. Do what is comfortable..bars, sporting events, church, and he will find new friends