Yesterday, my husband and I took our three beautiful granddaughters out for lunch. The oldest (twins) have recently turned 16 and the youngest soon to turn 12.
There have been some changes in their lives over the past few months and with NCEA and just living the life of a teenager, we haven’t seen that much of them. It is a natural part of life, that the twins should prefer to spend time with their friends in the weekends. We miss having them but are trying to be sensitive to their needs and not put pressure on them to visit. We are learning to adjust as the three girls enter new phases in their lives and as we too age and realise that things are likely to change for us too, over the next few years.
It has made me think about how life is something that evolves and changes over time. The person that I was on the day I received my diagnosis, is a different person to the person I was the day before. I can’t say that I was blissfully unaware that the specialist would declare ‘I have to say you do have Parkinson’s’. I had always said that if anyone in the family of the four of us siblings was to get Parkies it would be me. I have no idea why, but I had been saying that for years. Therefore, when I received the diagnosis, I wasn’t as surprised as some may have been. When given the diagnosis, I asked if there were any doubt to which he responded ‘No doubt whatsoever’ and there I was, a person with Parkinson’s. Like my parents before me, I now had to learn to live with the diagnosis.
Now almost five years in and things are slowly changing. I get more tired now than I used to, but that could just be getting older, or it could be that the anesthetic from my operation is still somewhere lurking in my body. Alternatively, it could be progression of my condition. I have phoned the Parkinson’s Nurse and left a voicemail message, but it’s been three weeks and I have not heard back from her. I am wanting to discuss whether my Parkies has decided to progress all of a sudden or whether it is the anesthetic derailing me. It is concerning that she has not returned my call. I feel at times I need to touch base and check whether any other medications might be needed or whether existing medications should be increased. I feel it is important to have contact with the Neurologist, however, most of the time he is assisted by a register or other more junior doctor.
Another change is that my feet are starting to hurt and move into funny positions. I am to see a podiatrist this week, but not sure what they can do for me. It seems every time I accept that a change in my ability to function in some areas is reduced then another issue arises to cause me pain and/or discomfort. The issue is that I also have arthritis pretty bad and it could be that the arthritis is causing the foot pain, but it could be a Parkinson’s trait that we may not have realised.
It is hard to say how long I will remain in a stage that is manageable with medications. But it also does not serve me well to look too far into the future. I prefer very much to live in the here and now. I do find that my memory is not as good as it used to be, nothing big but when my husband or anyone tells me anything or shows me how to do something, it probably takes me longer to get to grips with it and it can take several attempts to get it right. This may not be directly related to my Parkinson’s, but it may just be that I am a 64 year old woman and it is not unexpected to have such issues.
I have started to feel old. The challenges of getting over my operation and the need to rest for periods over the day to get through feels like I am becoming ‘elderly’ and I suppose that I am. I am at a stage with all that has been happening to my poor body that I have to let go of some of the things I might have expected to be able to do.
Some of the things that I and my husband have agreed I would be best not to try to do are:
- Climbing up on the raised garden to prune or weed.
- Riding my e-bike – It has now been sold.
- Walking for too long at the moment, as I recover from my operation. Doing any form of walking or standing for too long makes my back hurt. However, I need to push through the pain a certain amount to get my back stronger.
- Just doing anything that involves the risk of falling over or falling off something is not an acceptable risk. However, avoiding all risk is pretty near impossible. I would have to sit in a chair in my lounge, not moving or doing anything to be deemed to be safe. However, sitting too long is not recommended either.
Life, after all is one of constant changes and adjustments as we age. To realise that we are getting to a point where our body may object to doing things that maybe even five years ago would have been possible. To become the ‘elders’ in the family as we lose the previous generation, sparks the realisation that we now hold that title and that space within the family.
Regardless of whether we have Parkinson’s or – like myself – a cocktail of different maladies even seemingly small events in our health can have lasting consequences.
All we can do is to give ourselves the best chance of longevity by eating well and healthily and taking care of our ageing bodies.
My journey with Parkinsons 