So we had another appointment with the neurologist at the end of November. I must admit I wasn’t expecting anything untoward. Just the usual follow up appointment with the standard ‘how are you doing?’ questions. As far as I could see hubby hadn’t deteriorated. I should know better by now. She did her usual tests, movement of hands, finger tapping, walking: all very standard. Did I show you the scan results? Er yes. Right. She taps on her computer. Ok I am going to send you for a DatScan to confirm if you have Parkinsons and I will see you in six months when we should have the results. She stands and opens the door. Ok then we are dismissed.
Have you ever had a situation when someone has said something and it has taken you a few minutes to digest it but events have moved on and its too late to go ‘excuse me what did you say?’ The end of that appointment was certainly one. Surely I had misheard the consultant. I didn’t say anything to my husband as I am well aware he doesn’t always pick the important things up. Selective hearing and all that. All of a sudden he looks at me and asks ‘did she say to confirm I had Parkinsons?’
Ok then I hadn’t misheard but what exactly does that mean? Can it possibly be something else? Did I misunderstand her in the consultation previously. I grab my trusty folder and look back through the letters and no there it is in black and white. Confirmation of a Parkinsons diagnosis. To say I was confused was …..well obvious. I had a load more questions. Was she changing her mind? Was it something else? Had we been making plans for an incorrect diagnosis. I wanted to scream.
Don’t get me wrong. We want the correct diagnosis but please stop putting me in the position when I am going round in circles with more questions. Don’t drop that bombshell without explaining it. Me being the stress head is going to hate this uncertainty. We want to be making plans not just sitting about aging; I would say like a fine wine but that is never going to be the case its more likely to be a smelly cheese. The letter for the appointment comes through. Great I have an end date in my head. Something to work towards which is my way of coping.
A few weeks on Hubby gets a call offering a cancellation appointment for a scan the following day. He looks at me. If you want to take it we will make it work. Not sure how I can juggle my work as it was the day before the office closed for the year but I will make it happen. He starts asking questions and then says no I think I will wait until after Christmas. He comes off the phone and says that as he turned that down he will be put to the bottom of the list. How can you call someone mid afternoon and offer an appointment the following day; which she explained would require us being there all day and then be off when we say no its not possible?
I guess she was telling the truth. The appointment we had has been pushed back and there is no scan in sight. I can’t even begin to get wound up about it. If I dwell on it I will get upset. The system is broken. You need to drop everything when they tell you to or be prepared to wait indefinitely. People don’t have jobs or commitments obviously. Yes I am eye rolling as I type. I just can’t help myself. Am I going to let it stop us? No. The one appointment we have been waiting for regarding another health issue has come through after a year of waiting and that is the one we are focused on. That is the one we need to move our plans forward.
Once we have had the scan and we are at the follow up appointment the consultant is going to be in for a shock as I have questions. Things that people have told me we should have been offered or at least advised about. What is the saying, forewarned is forearmed? This carer is ready for battle. E x