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Archive for January, 2012

Hi Again!

OK, sometimes I get on my “soap box” about certian topics, and driving is one of them. The next post will be another – standing frames!

Because of my own particular situation of having a son that was 18 at the time of his injury, driving was one of the things he wanted to figure out ASAP. Also, because Darren had been very independent prior to his injury, his personality did not change after the fact. So we had to start thinking about a vehicle and driving as soon as he was able to handle it from a strength standpoint.

Again, this is my own experience, and I know a lot of people with SCI don’t have the financial resources to do what we did. I understand that. We were able to purchase an accessible vehicle, and that made a huge difference. Darren was so anxious to get out and about, and he was so tired of asking for rides here and there, I knew he would do so much more if he could drive on his own.

While a van was not the vehicle of choice for a hip 19 year old, Darren realized it offered the most for his situation. From the beginning to now, there have been a few phases of Darren’s driving:

At first, he drove from his power chair (which he used all of the time) with an easy lock mechanism to lock into place. When he started using his manual wheelchair more often, he actually transferred from his manual chair into the power chair and drove from that. Then we purchased a 6 way power base driver seat, which moves back and forth, up and down and swivels side to side. He transfers into that, and drives from the driver’s seat. He finds it very comfortable, especially for the long drives he takes (more on that in a future blog, possibly!).

All of this points to what driving has afforded Darren – more independence. Of course, I still worry about him driving too late at night, in bad weather conditions, or in areas he’s unfamiliar with. But all parents worry about those things; we just worry more when there are extenuating circumstances like an SCI. I don’t mean to say I don’t.

It all takes SO much time – driving lessons, prescriptions for the correct adaptable equipment, ordering a vehicle, learning to drive it, etc. Sometimes people get so frustrated with the process, that they never take on the challenge of starting to drive. I encourage all of you to seek help in fund raising to help purchase a vehicle, to take the initiative with Vocational Rehab programs, to figure out all that it takes to help someone with an SCI drive again. It is well worth the effort and can provide so much independence and freedom to all those involved.

Let me know if you have any questions and maybe I can provide some insights to help you!  

Cynthia

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Hi Everyone,

Caregiving is one of the most important aspects after a loved one sustains a spinal cord injury. There is no way around it, and there seem to be as many solutions as there are people and families who need to address this area.

As with most of my writings, I write from my own experience and those I have spoken to. What works for me and our family is not the only way; it just has worked (or in some cases – not worked!) for us.

And there are differences between taking care of quads and paras, differences between taking care of young children, older children, spouses, parents, siblings, etc.

One thing I believe in strongly, though, is to get outside help. I know of many, many families who don’t do this, and it seems to work out. Sometimes finances dictate the decisions, and I totally respect that. But in the long term, the best scenario is that the relationship between the person with the injury and the caregiver can return to the parent/child, spouse, sibling, etc. without all of the caregiving responsibiities getting in the way. Again, this is my personal opinion, and fortunately we have found wonderful, excellent caregivers to help. I know a lot of people who don’t have these options. But if you can, I strongly suggest getting outside help.

As a parent of a now 25 year old with a C5 SCI, it was a huge step for me not to do his daily care. I asked: who could do it better? Who would take care of him like I do? Who really knows what to do? We did find someone who has been with Darren for quite some time. Now I am his Mom again, and we are both handling the whole issue of care much better. He has his freedom, his privacy, his independence. While this is not new for us, it is something I felt important enough to write about.

I would welcome other opinions and thoughts, as I know there are many different situations out there. While I do not consider myself OLD by any stretch  of the imagination, it is a fact that I am getting older and will not be around forever. Darren needs to do as much as he can on his own, and being responsible for his own care is one big step towards his long term independence.

Thanks for reading! Cynthia

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One of our Push to Walk trainers shared this link with me. It looks pretty interesting, so I thought I’d pass it along. Check it out!

http://laughingatmynightmare.tumblr.com/

The blog’s author says he’s going to tell it like it is to have spinal muscular atrophy, so it is in line with my “keepin’ it real” theme. Let me know what you think!

Cynthia

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Hi Everyone,

I hope all of you have enjoyed your holidays and time with family and friends celebrating, relaxing – doing whatever you do that you enjoy! I wish all of you a healthy and happy 2012!

So of course this is the time of year we all make New Year’s Resolutions, right?? Besides my “private” resolutions (I have several!), my goals for Push to Walk all involve WRITING! As you can guess, keeping up with this blog is at the top of the list! My intent is to write blog entries on Mondays, Wednesdays and Fridays each week. Now I’ve said it – I have to stick to it!

Last year I started this blog when I was training for the NJ Marathon. I had a very clear idea of thinking about, writing about, and running for clients. I think that’s what kept me writing – a vision and overall goal. I am not training for any marathons this year (good and bad!), so I have been struggling with what to write about. Despite my lack of blog entries, I do “think” about what to write a LOT!

An idea I have for a theme is “Keepin’ It Real.” Of course, I want my writing to focus on spinal cord injuries. I have Google alerts set up to show me a lot of different stories that are out there on the internet. As with any other topic, some are well written but others merely skim the surface of what I really want to know about a person, a story or a situation. I guess part of good writing is leaving the reader with the desire to learn more. But an overall theme I see repeatedly are all the “good” things that happen when a person sustains a spinal cord injury. Naturally, we all want to see the positives and know that a person and his or her family are doing well. But so many times, the real story of a spinal cord injury is not told. Unless you’re living with a spinal cord injury, or have a loved one with an SCI, you don’t know all the complications, challenges and difficulties. Of course you don’t; I never did before my son’s injury, either. But now, I’d like to share information I’ve learned, and this blog is one way to do it. Not that everything will be depressing or negative, but “real.”

So if you have any info you’d like to share with me as I start this new journey of mine, please let me know! I’d love some input. In the meantime, check out another blog I just discovered. I think this guy is also going to “keep it real” ’cause he’s living with a spinal cord injury himself:

http://tuesdaytalkwithalex.wordpress.com/

Until next time,

Cynthia

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