I have a friend who has had some significant symptoms recently, with sharp pains in her head and at times she can’t get out of bed for days. She has been to her GP and is awaiting a scan to try to determine what is happening for her. She is waiting to see a Neurologist and there is apparently a 16 week waiting time.
My concern is that the mere fact that a referral has been made to a Neurologist would seem to me to indicate something significant may be happening to her health. I would have thought that therefore her place on the waitlist would be reasonably high? It really is a scary thing to have such a long wait for answers to what is happening to her health.
I am very thankful that when I spoke to my GP – despite some reluctance on his part – when I insisted I wanted to be referred to a Neurologist this was actioned and I saw him quite quickly. While not the best news in the world when he pronounced that I had Parkinson’s, I feel it is always better to have a diagnosis so that you can then seek appropriate supports. This includes a number of things including medications.
I do feel that more GP’s should have education sessions with someone like a specialist Neurologist as from my experience their knowledge of Parkinson’s can be sketchy at best. Given the prevalence of the condition in our society today, it would be a great idea if GP’s had opportunities to learn more about PD so that they can better support those of us affected.
When I was sitting with my previous GP and asking him to refer to the Neurologist, he commented that he had been watching me and had not seen any tremors. As I told him, ‘they are not there all the time’ and really had to insist that he refer me. I recall my first visit after my diagnosis when I went to see that same GP and told him I had been put on medication. He replied with a rather surprised, ‘isn’t it a bit early?’ I of course advised him that studies have shown that the sooner we are able to be put on appropriate medication, the better. Sometimes it seems that we are educating our GP’s rather than them advising us what we need.
The best information I have found has been through a FB Peer Group that I am a member of and a Peer Group meeting once a month where we meet in person. With several of us in a room together, as we get more and more comfortable with each other, we can give each other hints and tips on what works for others. I would equate it to going to a mother’s group when my children were little. Of course all of our children were individuals, but sharing strategies that worked with each child gave the opportunity to explore what might work for ours. There is nothing quite like a group of people with a shared experience to help and support each other.
There are some good Blogs out there too that are good to check out. Here are two that I like.
‘The Perky Parkie’ https://www.perkyparkie.com or
‘Bobble headed Nanna’ https://bobbleheadnanna.wordpress.com
I would also recommend checking the Michael J Fox Foundation website for lots of useful information and personal stories. https://www.michaeljfox.org/
There is a wealth of information out there and I would encourage you to find a source that works for you.
My journey with Parkinsons 