Monday, 22 September 2014

The Beginning Of The End

Over the last three weeks I have noticed a marked decrease in my arm strength. This is happening in both arms at about an equal pace. Up until now my left arm has given me more trouble than the right. Now it seems pretty evenly distributed, with my left arm being weaker and my right arm suffering more pain as it tries to take up the load. It is essentially a repeat of what happened to my legs.

If things go the same way as my legs did, I am now most likely at the beginning of the "rapid decline" stage, where I see the progression take off more aggressively than it has over the last year or so. This first indication of arm trouble was actually this time last year, when I began to notice a general aching in my left arm. It weakened over the fall until it was first measurable at the ALS clinic early this year. From then the decline has only been slight. Now it is more, and my right arm is joining in the fun.

Of course yesterday this was all the more noticeable than other days. I was exhausted from a busy week, with people over or going out every night from Monday onwards. There was the wedding reception on Friday, usually a day when I am home alone and happy for it. There was the wedding on Saturday, a day with a great many activities and responsibilities. Even Sunday had its chores and requirements. By Sunday night I could barely move.

This has already meant more changes for me. For example I can no longer consistently get into my bed from the wheelchair. Sometimes I can make it all the way up to the rotation point. Other times I get half-way and give up, using the wheelchair wheel as a resting point before completing the trip. Then there are the times when I simply cannot get up to get across the gap no matter how hard I try. Then I simply lift myself onto the wheelchair wheel and fall sideways, trusting in God and the fates that my chair won't move and I will be able to pull myself into bed.

There is a new sling on the way for my recently installed lift system. This will make a difference as it is designed to help me make the semi-standing position needed to rotate onto my bed. This is simply one of the things that I will need to make life easier. It will likely be spending more time in my power wheelchair as my arms are becoming too tired for long haul pushing. I will also need more help at home from family, friends and home care.

My life of independence ended when home care workers started coming in a while back. I will become more and more needful of their help as this process continues. While my progression has seemed slow for a year, I think that is about to change. It is the nature of this illness to take all it can, and then take some more. This is starting to look more and more like the beginning of the end.


  1. Words fail me. They do not fail you. You still have a strong voice

  2. My dearest Richard My heart aches for you , this illness is the devil in disguise. Is there anything I can do to help you? I love you