4 replies to this topic

[Alice222]

Hi,

I am new to this site but have been researching the uk's answer to project walk. I have been married for seven years, my husband has always described his condition as "like" spina bifida. The doctors didn't know why his walking had deteriorated putting him in a wheelchair. It took about eighteen years before an MRI confirm that his spine had opened but unusually it closed again lower down. Within the long Latin name for his condition is the word "donut". Boney spurs have grown through the hole putting pressure on his sc. From my research on the web I would say his level is l2 incomplete. Today I found various you tube videos on project walk and standing start. I was just wondering if anyone had tried standing start and if anyone with spina bifida had?

I feel like I am in a bit of a delicate position as I know he was unaware of these rehab organizations until I showed him the videos, I don't want to get his expectations built too high but yet I think a person must need a lot of drive to put in the work needed to get the results they show. He walks (swings his legs) with aid of crutches. He does have some muscle tone. I just don't know enough about his condition regarding if their programme would help. He suffers quite a lot of shoulder pain due to an old collar bone fracture and the stress of his whole body weight on his shoulders so I would imagine if he could gain a bit more strength in his legs that would help his shoulders.

Thanks

Alice

[Tinbasher]

I don't know much about Standing Start but am guessing your husbands condition is akin to one of us older injuries. Others may know better but I don't think that sort of intensive physio has quite the same effect of long unused muscles.

It may be time to consider the use of a wheelchair if his shoulders are giving out.

Tin

[Alice222]

Tinbar,

Thank you for your reply. T does use a wheelchair when we are out and about but uses crutches to get in from the car and around the house. He has also got a hand bike which opened our lives up no end as we can walk the dogs together almost anywhere. At the moment we are going to do some leg exercises at home and see if it helps loosen the muscles. I wouldn't say that his muscles are particularly unused as he can walk upstairs. Holding on to the rails. We were just wondering that if he has some mobility, would it be better to make a concerted effort to develop what he has and see where we get. We heard from standing start this a.m. Via email and think the next thing to do would be to go and have a look see and determine if they could help. We don't live too far from Cambridge. I think we are just worried that it isn't all just good marketing.

Alice

[cas]

I spent a week at standing start. It isn't a quick fix, it's hard work very involved active physio. But I found it very helpful in particular for core strengthening exercises.

[pjcstoke]

Go and have look at what they do and talk to the trainers there to see if it can work for your husband