I am buzzing! No I have not overdosed on energy drinks. The smell of those make me feel sick. We had our first appointment with our Parkinson’s nurse this morning. I can’t explain the feeling. Its like we finally have someone in our corner. Not just a clinic to attend. Not being a statistic. There is an actual person who we can talk to. I really didn’t expect to feel this relieved.
Over the last … few years I suppose I seem to have become accustomed to appointments leaving me feeling flat, demoralised and alone. You get asked questions. Pushed for tests. Results that seem to never reach us. The consultants nod, make notes and say ‘I see’ but nothing really seems to happen. Occasionally you might leave with a plan of action but there is no guarantee it gets seen through to the end. I guess we can try this is the best you seem to hear.
Don’t get me wrong. Some appointments you walk out of and feel you have made a little headway. The upcoming tests might give you some answers. Rule out certain things. They may open doors to a different avenue but then you are back to sitting about waiting for the next move in this game play. Then before you know it a year has passed and the process starts again.
You need a referral to see a Parkinson nurse and we had to ask for ours. It does seem that the initial referral was sent to the wrong nurse covering a neighbouring area. Eye roll and sigh. Anyway we got there. She asked questions and actually listened. Had a sense of humour too which was really refreshing.
She started a course of action that puts us on the first step in time for our first appointment with the actual parkinson consultant later in the year. Yes we are starting medication. That then gives that consultant an indication as to if he is receptive to the drugs. At that point she can make the decision as to if the dosage needs increasing.
Instead of the ‘you need to join these groups’, she was honest about not just signing up to any group but finding the one that works best for us. I’m not sure what she was implying when she suggested the one that meets once a month in a pub. She is not wrong though, tea and cake is not our thing. That comment alone made me feel seen as a person, not just a statistic.
The conversation flowed easily. She offered suggestions. Asked about what help we had been getting. I admitted we don’t qualify for assistance or aid due to my job. Then she asked if we had applied for a discount on our council tax. She held her hands up and said it may happen it may not, it depends on the council. Well it can’t hurt to try so that was my first job when we got home: after putting the kettle on, naturally.
The tablets will be ready for hubby to start once the current steroid course is over. Don’t want to mix them as that may make him buzz way more than is healthy. Trust me nobody needs that. She has told us what to expect by way of side effects and the most effective way to take them as to get the best results. For once I feel like we are going into this slightly prepared.
However the nicest thing was she asked me my name. For once I wasn’t just ‘the wife’ or the carer. Its silly how something so basic can make such a difference. I was also a person in the appointment today. That meant more that I can explain. E x