Sharing some sad news

I saw one of my special English friends at Centrepoint today. She was commenting about my silence in keeping my blog up to date, especially whilst in Australia. Of course she has now realized the reason for this. I told her it was time I wrote on my blog what has been really going on in our lives these past 3 months. What I need to write will be helped a little by what Roger has written recently to our friends. Here is what he has had to say:


"Gaynor and I need to tell you something about Roger and we thought it best to tell you this way. The reason will become clear soon.

When Gaynor and I went to Australia to catch up with family and friends in 5 cities in 4 states we did not anticipate the difficulty of the time “home”. On 5 August I visited my GP for a check up and to talk about my problem fingers on the left hand. The Dr. suspected Motor Neuron Disease and sent me off to a Neurologist and he in turn set me off for special tests including an MRI. To cut a long story I have Amyotrophic Lateral Sclerosis.

Amyotrophic lateral sclerosis (ALS), often referred to as "Lou Gehrig's Disease," is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed. (courtesy ALS Assoc. website http://www.alsa.org/als/what.cfm).

Naturally this came as a great shock to us and as we have so many good friends (like you) who get concerned or upset when we personally tell them. We then in turn upset ourselves again. So purely for selfish reasons we have decided to stop telling people individually (hence this group email) and to let the news spread of its own accord. ALS is a very unusual disease, it affects about 2 people in every 100,000 and the usual survival rate is 2-5 years.

So we have to say that our time in Europe will not be as long as we anticipated. Roger’s symptoms are a minor nuisance at this stage and it is not preventing us from doing things, although we tire easily at present and that skews our emotions. Roger still rides his bike, shops, works, hikes, cleans and typed this email!

Enough said, we still plan to participate in Centrepoint (you can’t get rid of us that easily!) so we are volunteering as usual and I will be hanging around the library if needed. Feel free to talk to us as you usually do and if you have any information about ALS because you are one of those rare people who have heard about this, don’t hesitate to tell Roger (preferably not Gaynor) - more information is good.

Sorry to have to be bearers of not such good news. I have faith in a loving God who knows me better than I do. He did not send this disease to me; I know I got it because I live in a broken imperfect world that isn’t quite the paradise that God created. Why people get ALS specifically is unknown. For my part I intend to live life to the full so whether it is 2 or 5 or 10 years to go, there are still going to be lots of parties!!"

We are still processing all that has been going on these past 3 months and coming to terms with the impact this is going to have on our lives in the near future and the future. We have felt emotions never felt before and have shed so many tears we know we have kept the angels in heaven working hard.

We are happy to be back in our lovely little home in Schopfheim and will make the most of each day that we spend here. It is winter here already, but our home is cosy and warm and we love the haven it provides us as we go out each day and come home to such comfort.

I have so much to blog about and will try and continue to blog regularly. Thank you for your patience with me in this regard. We can feel the love of our family and many friends surrounding us during these days.