I took part in “Walking the talk for Dementia”, on the Camino de Santiago, in May 2023. It was, for me personally, quite simply a miracle because the Camino was something that I always dreamed of doing, but shortly after my diagnosis, I could only walk with the aid of a walking frame and the doctors advised me to get my house ready for a wheelchair, because that was the next step and the natural progression for the way my life was going. The Camino never left my mind and although I could perhaps have done it in a wheelchair, to me that was not good enough, I wanted and I had to walk it. Because I have such a wonderful medical team, I was reduced from nineteen different medications to six different medications, I got rid of my walking frame and began to walk with the use of a walking stick, so instead of getting worse I felt my condition was improving.
All the while, I kept wondering: Could the Camino be possible? How would I do it? Who would I go with? But the one thing I never gave up on was the dream of doing it and, sure enough, a call came to me from Fernando Peres, to know would I be interested in walking the Camino with him and a group of people. I said, “you know that I walk with the aid of a walking stick?” and he said to me, and I quote “if you want to do it we will make it happen together”. I cried and I didn’t question how we were going to manage it, but here was the opportunity that I wanted, being offered to me. I wasn’t going to let it go! I went to Spain and found that the Camino journey is almost impossible to explain. For me, it affected me, mentally, physically and spiritually, in ways that I could never have imagined. I found that inner part of me that I thought I had already found.
Please let me explain: After my diagnosis, I became an advocate, an author, a motivational speaker, a storyteller sharing stories about my life. I found that I could engage with people, young and old, academics and scholars and others alike, from the most highly intelligent people who spent years dealing with dementia to people who had such misconceptions about dementia. While I was on the Camino, however, I went deeper into myself, deeper into who I was, and found strengths that I never thought possible. Sometimes, this was when there were a group of us together, sometimes when there might be just two of us together and a lot of the time when I was alone, by myself - alone with Kevin. I found I was forgiving myself for the way I was feeling at times. I found a type of love that I never knew existed and I found that I needed to feel that self-love. All too often, we bury our feelings, we try to stop crying, we try to stop feeling the way we do. But for me, that’s not the way to do it. We need to feel those feelings and to acknowledge them, and we need to reassure ourselves that it’s ok to feel the way that we do.
There were so many times when I could look around and just appreciate where I was, whether it was just for a moment or for longer. I can honestly say that I could have never expected in my wildest dreams to feel the way that I felt and to share what I shared, with some of the most wonderful people who have ever walked this planet. I think back to before I went on the Camino and I look at my life today. It took me weeks to try to get back to normal, to get back to my normal life, but I have come to realise that this is my new life and this is my “new normal”. These are my new feelings and they are taking a lot of getting used to! I am no longer as hard on myself as I used to be. I no longer consider my Lewy Body Dementia as a disease, I consider it a gift, because without it I probably would never have done the Camino and I certainly would not have met the people I met on that glorious week in Spain.
There were so many wonderful moments, so many brilliant things that happened, but for me, the standout day was when I was having a chat with a member of the group and I was able to share things that were so personal to me, things that I would never tell anybody, things that I thought that would never be shared, but I shared them and that person understood and was able to give me advice. That is just one amazing example of the trust and love that I found on the Camino, that amazing power of being able to completely trust another person - someone who I hardly knew before going on that trip. That’s the power of the Camino. I hope, from this personal message, that you can just get a glimpse and a feel of what it was like for me on this journey-of-a-lifetime, something that I could have only imagined a few years ago. Dreams do come true. For those of you who have dementia or are caring for a loved one, don’t ever give up on a dream!