Today I went to see the specialist Parkinson’s Nurse that works with my Neurologist. I had requested to see her, as I had been noticing a number of things that made me think that I have progressed – or is it regressed – with my Parkinson’s.
We talked about swallowing problems, excess saliva and the ease at which I can have fluid, even a small amount go down the wrong way and make me cough. I don’t just cough a little bit, I cough and cough and cough till sometimes I think I am going to be sick. Also, without very good bladder control there is the risk that leakage – sometimes of epic proportions – can be the cherry on the top of a significant coughing session. Not great if you happen to be out and about, it can be a bit of a risky business! I also have trouble swallowing dry things like bread and have to take care and concentrate when eating them. A drink can help wash food down, but this cannot necessarily be provided every time I eat or drink. She has said that she will refer to the Speech Language Therapy Community team to discuss all these matters.
We talked about how at times I find that my legs feel heavy and achy and I find it more difficult to walk. She suggested that this might be a result of my medications being off and perhaps if I had missed some of my medications or not had them at the correct time, that the therapeutic effect was reduced. If it is not happening all the time, she suggested that I ensure that I take my medications at the right time and in the right dose.
We then spoke about my experience when I was getting ready to go snorkeling in Rarotonga. That as my husband was trying to help me with my flippers I overbalanced and – even though we were in shallow water – how I basically panicked. As someone who sees themselves as predominantly a logical, sensible person, this was quite out of character. The nurse stated that anxiety is often a symptom of Parkinson’s and that medication can be provided to assist with anxiety. However, she asked if my anxiety made it difficult for me to cope and get through the week without getting anxious and basically ruining my life. I advised that there had been only a few more higher-level anxious moments, but that it was not something I continually felt of being anxious all the time. She then went on to describe me as “an anxious person” and I responded that I didn’t think that I was an anxious person as such but have had some anxious moments and scenarios. I admit I was rather taken aback by that statement as I had never seen myself as an anxious person as such. We agreed that at this stage with only occasional anxiety events, it was not indicated that I needed to be medicated in any way for anxiety.
She carried out a few basic tests like foot tapping etc and found that I did reasonably well. She said that she still saw me as a “slow burner” and that my condition was not progressing rapidly by any means. In fact, she said that she still doesn’t see any outward sign that I have Parkinson’s. That was probably the best thing she could have said.
I left the appointment feeling better and somewhat reassured that I am not progressing too rapidly at the moment.
My next appointment with her will be in 12 months’ time.
Hopefully, I will still be reasonably able when that rolls around.
My journey with Parkinsons 