In the UK there are barely any facilities offering long-term targeted therapy for people with a SCI. We started looking elsewhere and stumbled upon a little known centre called Zentrum der Rehabilitation, located in Pforzheim, Germany. After getting in touch, we were invited over to assess Irrum’s recovery potential and to see what they offer. So impressed were we by their can-do attitude that we embarked on a fundraising campaign, and eventually we raised enough money to allow Irrum to spend three months there. She made big progress. In this post, Irrum talks about our time at the centre.
We visited the centre in October 2015 for an assessment. My first impression was that this is a place where they didn’t have limitations. They believed in progress for SCI patients, irrespective of how much of your spinal cord is injured, how severe is the damage or the length of time since the injury. But they are pragmatic at the same time and didn’t promise miracles: They firmly believe that progress is possible, but only with hard work, grinding 6 hours per day, 5 days a week, for a minimum of 12 consecutive weeks.
We did some basic exercises to assess my movement and strength. They were impressed by my range of motion and said that I may be able to stand up and take a few steps with a rollator after 12 weeks. This seemed pretty optimistic, but at the same time it was a far cry from Stoke Mandeville Hospital (and probably most other hospitals around the world) where they continuously peddle the line that ‘You will never walk again.’ Here is a centre with different ideas.
Of course I had been doing hours of therapy since my SCI, but often it had been at home while Adam and I juggled being new parents, and I ‘adjusted’ to being a paraplegic mum. For the first time I saw hope, real hope. These people, who are experienced physiotherapists by trade, had seen with their own eyes what is possible with enough hard work and repetition. They were enthused by my capabilities and potential; in contrast, my consultant back home barely batted an eyelid.
My 12-week stay
The therapy was different to anything I had seen or read about. First of all, the exercises were really innovative even though they just used basic household equipment such as ladders, stools and broom poles! It sounds odd but frankly all the exercises were brilliant! Pretty much all were done in standing or a high sitting position using a plinth, with a couple of therapists supporting your knees. They are experts at using these simple techniques. The idea of each excersise was to strengthen the core muscles and make you use what you had, and then hopefully increase and activate other muscles.
But the best part was the technique they use for walking with a rollator. The therapist sat behind me on a rolling stool and supported my knees and hips while helping me to make each step. It is so simple but really cool! At the start, I needed significant help from the therapist to move the legs forward, although there was decent lift in the right leg from the outset. Near the end I could make the step with the right leg independently, and the left leg had at least learnt how to initiate the step.
My therapist taught Adam how to walk with me in this way, and this has proven invaluable while continuing my therapy back home. It is so simple, without the need for fancy equipment – it is inexcusable really that so few therapists know of it. Some patients may need two therapists to do it (because of weight, height or more neurological deficiency), but certainly low-level injuries can walk with assistance.
Overall the therapy here impressed me immensely. The therapists are dedicated, encouraging and, perhaps most importantly of all, they believe in the methods. Many people in the SCI world will say that these type of centres give false hope. I totally disagree. I’ve seen the results for myself. Although I did not achieve my initial goal of being able to stand up and take a few steps independently, I did make huge progress towards those goals while learning many valuable techniques that I can practice at home. For these reasons, I doff my hat to the therapy offered at this centre.
Living at the Centre
The Zentrum der Rehabilitation provides accommodation and food on site in addition to the therapy. This was incredibly useful as with everything taken care of the patient is able to concentrate on the therapy. However, this comes at a steep cost, one which I believe to be overpriced and badly managed. The accomadation is mixture of one and two bedroom flats some of which are very new and comfortable and others which are tiny and not as nice. The price you pay is the same for both types and the management decide where each patient and their families will live. We were moved 3 times during our stay at a moment’s notice for no apparent reason other than bad organisation. With a 20-month-old this was incredibly disruptive and unsettling. The manager, who was tasked with liaising with patients and their families in these matters, was very uncooperative, unfriendly and outright rude.
The food provided was very hit and miss. Breakfast was inconsistent and varied from just stale bread rolls to really nice bread, eggs and fruit.
Lunch was the main meal cooked by the in-house chef and was healthy and varied, but the portion sizes were a bit small!!! Dinner was mostly just leftovers, which is fine except for the fact that the charge for lunch and dinner is equal. Often we did not eat dinner and instead decided to buy something from the supermarket and eat in our flat, but we still had to pay for dinner on every night of our stay as the invoice must be paid in full before you arrive. The same applies for weekends. In summary, the food was very expensive for what is offered, but without a kitchen there was no real alternative.
The topic of expense leads me to mention how the cost of therapy is calculated. For my therapy I required two therapists for 6 hours per day, thus costing me 12 hours per day in total. At the outset I was made of aware of this cost so I was prepared to pay it. However, the issue is that the second therapist was usually a student or even a school kid on work experience, but I still paid the same rate for both therapists. We found this in particular to be very disingenuous.
The Zentrum der Rehabilitation couples together fantastic intensive therapy and therapists with the right attitude. All SCI patients we met made progress of sorts, even those who had no signs of improvements for years. To make real functional progress, however, usually requires more than 3 months. And spending that much time here would be taxing due to problems with management.