This afternoon I was reading a post on a Facebook page for people with Parkinson’s and those who care about them. In that post they asked the question “what information did you receive from your doctor the day you were diagnosed with Parkinson’s disease?”
That is a very good question to ask and I am sitting here now thinking about what my Neurologist told me. He and his registrar got me to do several actions, like tapping each foot as quickly as possible, touching each finger to finger on each hand and a lot of things I don’t remember. Then at the end of it all they said, “I have to say, you do have Parkinson’s!” To which I replied “Is there any doubt?” to which they replied “None whatsoever!” And just like that the bottom dropped out of my world and my husband’s too!
The question posed by the person who posted was a good one and all I really remember him telling me is the following:
- Yes, I did have Parkinson’s.
- He would immediately put me on medication to manage the symptoms.
- He would see me annually.
- I would have a Neurology Nurse that I could call for advice.
- They recommended the Mediterranean Diet. I have never really got into it.
- Can’t remember anything else.
Things I don’t think they said:
- They didn’t tell me about the local MS & Parkinson’s society and what they might be able to do for me.
- They didn’t say how long I might be able to live with this interloper into my life. But then again, as everyone is an individual how would they know?
- I don’t remember them telling me to do exercise to help with my physical functioning.
- They didn’t give me any pamphlets or trusted websites I could look at to get more information about Parkinson’s.
- I don’t remember them going into a great deal of detail about what Parkinson’s is and how it can affect people and how long a person can live with it.
Perhaps he did give me more information, but I was at least partially in shock, having had my fears confirmed and that I had the same condition that both my parents had! Hence I have been known to refer to it as “the family curse”. I was glad I had my husband with me, as I don’t think I would have absorbed much at all if I was on my own.
Writing this post, I tried hard to remember all the things that happened and all the things he told me on that fateful day. I admit, I don’t recall a lot of information coming my way, apart from the diagnosis. For me, it is vitally important at any appointment that is important either about my Parkinson’s or other health issues, that I have my husband with me. He is my support but he is also my memory. He is like the external hard drive we bought for my computer. It is a place to store information that you don’t want to lose. He does that for me! If, after an important meeting I can’t precisely recall what I was told or what I had to do, I could tap into the information stored in his brain. His brain being a normal functioning brain, he can store the information I need and most of the time, he is pretty much on the button. He can usually relay to me anything that I didn’t quite get and that is so helpful. I try to take him to as many appointments as I can, so that I don’t have to rely on my memory. The worst thing is going to an appointment, coming home and him asking me what the specialist said and then I can’t remember!!
So, in thinking back to the moment of diagnosis:
- What can you remember of what was said on the day?
- What advice did they give you?
- Did they tell you about any community support services?
- Did you take anyone with you?
My recommendation for any appointment regarding your Parkinson’s is to take someone with you if you can. Even regular GP appointments it may be a good habit to get into of taking someone with you. An extra pair of ears and an intact brain can be handy at these things. Also, if you can’t have someone with you take a small notebook and a pen and write things down when you are in the appointment, that are important for you to remember. In fact, before you go to any medical appointment, use your notebook to write down questions or concerns prior so that you ensure you get all the information you need from your GP or Neurologist or any other health practitioner.
It is one of the most difficult things many of us have ever had to face, but making sure we have good support and make community connections that will be of value to you is so important.
If, like me, you can’t remember absolutely everything about the moment you received the diagnosis, it is not surprising. I think when you get that sort of information, you shut a certain amount of it out, because it is too hard, too stressful to allow you to absorb it all at once.
The moment of diagnosis is stressful.
Stress is not good for a Parkies person.
Stress makes it difficult to take in information and remember it.
But, sometimes all you can do is manage it as best you can.
My journey with Parkinsons 