Dear friends....
I remain utterly overwhelmed by the kindness and thoughtfulness being sent my way this week... Each post on here moves me and the videos bring joy! I will watch each one and respond, it will take me a while...
Linda asked me to write and tell how MND (ALS) has affected me.... Wow, where do I start.... And I don't want to send you away depressed!
I noticed that walking was taking more effort on the first day of 2017. I don't mean it made me tired.... I mean that transferring weight from one foot to the other literally took more effort. I couldn't explain it. But I was concerned enough to start a regime of walks to improve my fitness. After a couple of months I noticed that I wasn't tap dancing so well, I couldn't do hopping steps any more... It was all to do with lifting the heels.... By the middle of May I was suspecting that perhaps this was something neurological. I joined a gym. Then in September I caught the most troublesome foot at the top of the backdoor steps and fell, resulting in a visit to A&E.... The doctor there recommended nerve conduction tests. Suspicions taking a more solid shape.... And returning to dancing after the summer break, I could not dance at all. It's as if the world starts to turn very slowly but quite relentlessly upside down. No doubt in my mind that I had a serious neurological illness. I wrote a song around the musings I was having about it... "Sitting in the Hallway".. I was feeling very low, unwilling to share my worst fears. I wrote several songs over a few weeks, including Troubadour.... Some remain unrecorded in my songwriting book. Dark place. The future had to be seriously rethought as I was, at that time, taking responsibility for a disabled relative... I knew I couldn't continue to do that, and started taking steps toward other arrangements. You stop making plans beyond what you think is reasonable.... That remains at a hopeful two months.... because the progression just keeps going, and anything beyond a couple of months, in my case, is unguessable, as to how I will be.... in terms of mobility and strength. By mid November my internet searches had found what I was pretty sure was the answer... MND. The mental burden of being highly suspicious but not yet diagnosed is quite something. Determined to stay cheerful and not succumb to depression.... I had series of mantras.... "Still, small voice of calm" was an early one.... Line from a favourite hymn. I'm not religious, by the way. But that helped. As I became more certain and resigned to a bad diagnosis, I adopted "Que sera sera".... A philosophical "what will be, will be..." New year was hell, because by then we knew that the nerve conduction tests had revealed a suspicion of MND... But a few days later we learned that it wasn't clear cut, and I'd have to be tested again in a few weeks. But already, I needed a hand to get up the few steps to the stage at the November convention of the GFS in Blackpool. And I chose to sit to play, because of unsteadiness. That was the last time I played on stage. So no more dancing, no more performing to the Formby folks in Blackpool.... This what MND does... It takes your pleasures one by one, and takes your life piece by piece. "One of the most unpleasant illnesses known to medical science...." Diagnosis beginning of April this year. It did not come out of a clear blue sky and that has made it easier for us to face. I am lucky that it has affected my legs first... I try not to think about what I can't do... But I can't now leave the house alone as I'm quite unsteady... Housework all very difficult... I can't get upstairs without the stairlift.... (Provided by the MNDA) And there's the knowledge that it will continue to progress to affect my arms, hands, body, breathing, talking and swallow. It doesn't make good reading, I'm sorry... but knowing that this is a terminal illness has had this effect on me... I'm determined not to be miserable, because a day spent in misery is a day wasted.... And I have to be strong for my husband and children, as they are being strong for me. My head is in a better place now that I can see the enemy I'm up against, as it were! Of course, in many ways it's worse for the family. It always is. Friends are being wonderful... They are there for us, in all sorts of ways... I could write pages about that. That people care is hugely uplifting.... And I can't describe how much you, Seasonistas, have lifted me this week! Like walking on air! Each little sign of the thoughtfulness that has gone into these words and posts has cranked me up a little higher!
I've long been a believer in counting my blessings... And I have so many to be counting now. The most wonderful, loving husband anyone could wish for, my rock for 50 years since we met.... Fantastic kids and caring friends... And I'm so relieved that I did not get this terrible disease when I was younger, as so many do....
My favourite George Formby song is this one, that sums it up perfectly... Count Your Blessings and Smile!