With a little help from his friends - Eirik's story

WALKING THE CAMINO WITH PARKINSON’S.

This spring in April – May I walked my third Camino, the Via de la Plata from Sevilla, and I promised Johnny Walker to tell him how it was.

I don’t know how many among the pilgrims walking to Santiago suffer from handicaps or serious diseases, and how that affects them. Maybe that was more common in the middle age than today. Myself, I have Parkinson’s disease, trying ever harder to cripple me since I got it 17 years ago, involving me in an increasing struggle to control my own life. And then I got something called GBS 4 years ago.

When I left the hospital July 2005, it was with a wheel chair. The doctors had told me that my nerve cells, destroyed by the rare Guillain-Barre Syndrome (GBS) would repair themselves, but it might take a year. Further, they could not in any case guarantee my recovery because of Parkinson, there was little or no experience with the combination.

There and then, I estimated that I had about 15% strength. I could not eat on my own, somebody had to feed me, I could not lift the toothbrush to my mouth, I could not raise from a chair or bed, I needed assistance at the toilet, and a row of other problems. I could not walk properly. I had no balance, if someone came closer to me than half a meter, I was sure I was going to fall.

I got home from the hospital with a comprehensive training program, the doctors having said that recovery could take an additional year or two after the repair of the nerve cells. But I suffered “muscular atrophy”; if muscles get the idea that there is no use for them, they start disappearing. So there was not much left to train. And bodybuilding at the age of 61 is in any case difficult.

I needed strong motivation to train 26 hours a week, starting each day before 0700. Then in the spring of 2006, Norwegian Television showed three programs from the Camino. That was tempting, and at a party, when I still needed assistance to get up, I told about my decision to walk the French Route early spring 2007. They excused me by probably having too much to drink. However, I had a year for training, planning and preparations. I soon fixed the starting date to April 28th 2007 from St.Jean, I planned to walk the French Route to Santiago de Compostela.

First thing I realized was that I needed a companion. Mainly for minor things, which most people don’t understand can be a problem. Like coordinating my fingers for tasks like doing up my shoelaces, or picking up something, like coins. Or for support if crossing a stream or passing through rough terrain. Friends and family were very helpful, but as they had their jobs to attend, they could only be away for a short time. I therefore used five of them, changing “crew” in Logrono, Burgos, Leon and Ponferrada.

For a Parkinson’s patient, control of your two legs is a major issue, for a Camino walker, good legs are essential. It is not easy to combine those two, but a lot of daily walk training over long time makes a remarkable difference. Still you frequently risk getting stiff legs and using much more energy than other people, also by reduced length of step. I struggled a lot with this on the French Route, and I was especially anxious for the mountains after Ponferrada, with Alto Pradela at 930m and O’Cebreiro (photo) at 1300m. But following several days with stiff legs and strenuous walks, and some experiments with the medication (eight times a day), the stiffness was as “blown away”. After Ponferrada it felt like I was “flying” and able to walk any distance. As for Parkinson, I almost forgot his presence. I remained “flying” the rest of the way to Santiago, where I enjoyed my own triumph and the incredible atmosphere of the city for a couple of days.

September 2008, following the same recipe, we set course for Porto, the Portuguese Route. I felt that Parkinson’s was demanding more of me. Especially I struggled with speaking, and also a little more with the balance, a fundamental skill. But it was very successful, and in fact I walked it twice, with three days in between. “Again” the receptionist in Ponte de Lima burst out when she saw me again after two weeks (I don’t know why she remembered me).

The success with two Caminos gave me the spirit to try the presumably biggest challenge, the Via de la Plata. I spent some effort trying to find out what to expect, and if I had a chance to make it. I studied the guide books and contacted the Confraternity, who handed my questions over to Johnny Walker. I got quick and relevant answers, and I was very encouraged, and promised him this report afterwards. So I stepped up my training and went ahead with the planning, also based upon five companions, changing in Caceres, Salamancha, Benavente and Ourense. We also put in amply time in the beginning, to enjoy the rich archeological and cultural treasures on our way.
We started from Sevilla April 3rd, turned west at Granja de Moreruela, (photo – Rio Esla on this section) walked in solitude the “southern route” between A Gudina and Ourense, and ended up in Santiago de Compostela May 27th.

Another personal victory to celebrate. Not only for making it, but for the remarkable effect it had on my Parkinson’s. The stiffness, which had given me trouble on the French Route, was almost non-existent. And even better, on the Via de la Plata, the effect of my medication was stretched two hours a day, which is a significant improvement, and makes my life quality considerably better. Some of this effect still remains, as I am careful to keep up training.

After this, one should think that my Parkinson’s problem is “solved”. But it is not. Even if you are able to keep it at arm’s length for a while, it comes a little stronger each year. I want to walk a new Camino in April 2010, but ought to find a way to improved control, especially for balance and speech. I’m working with it. And it is so much more fun when you can talk to people. Yourself.

If my experience can be of any help to anyone else I’m glad and anyone who wishes can write to me at eirik.naess@mail.com