Feb. 19/2015Once you have your diagnosis, the next step is to research the disease.
Like so many others, this meant hours upon hours online....searching the disease, the symptoms, the latest research, and most likely, a chat room or forum with other, real life Parkies.
We have all heard the warnings of being online with crazies, identity thieves, and creepers. But if you are lucky enough to get into a good group, it can provide a wealth of hands-on knowledge, comfort of kinship, and people with whom you realize, get it.....there are others out there who just really, get it.
The first group I joined was, Patients Like Me. I literally have no idea how I stumbled upon it, but at the time, it was irreplaceable. The site itself consists of gathering information of members to aid in research and development to a wide range of diseases. Diabetes, Fibromyalgia, Depression, and Parkinson's Disease, to name just a few.
The power of Patients Like Me, lay in the gathering of information which gives members charts and lists to monitor their symptoms and medications. They can bring these to their doctors to help in tracking progress. The greatest component of the site, hands down, is the Forum. You can go into the specific forum of your disease, and voila.....there are post after posts of topics related to your disease. Behind these posts, are people who have shared questions and opinions, and return again, and again, and form a group of familiar characters with which you will develop an inexplicable bond.
The forum lends itself as an outlet to rant about your symptoms, share information on coping with your symptoms, and real people who have experienced what your journey is about to present to you. For example, because Parkinson's is a progressive disease, the long term affects are always on your mind. In the Patients Like Me forum, I came to learn and understand that Deep Brain Stimulation (DBS), is an option. I met others who had gone through the surgery, and freely discussed the pitfalls, and success', and even took pictures or videos with which they freely shared.
Patients Like Me, provided a forum and group of like individuals that I could bond with on a journey that no one else I knew, personally, was going through. After 1 1/2 yrs on that site, I had gained trust in members and saw the very few that would come into the forum with bad intentions.
From there, I joined, Parkinson's Online Chat. Set up in chat room style through Facebook, it is essentially another place where experienced information is shared, and comradery, apparent. It's members number 5000 plus. But, there are always the regulars ready to share and inspire. There will always be a few that sign in with intentions of selling "snake oil" so to speak, or just to show their stupidity, but the regular members are quick to notice and block them. It becomes quite easy to spot someone who really has no interest or understanding of Parkinson's. Now these are very far and few between, but unfortunately, do exist.
I encourage everyone to find a group online specific to their needs. For example, I found that the group I joined had patients and caregivers to PWP (People With "Parkinson's). And being a very difficult road for the Caregivers, saw a need for them to have their own space to speak freely. I mean, really....we, PWP, aren't always the easiest people to care for. Hard to believe,....I know. So, with that concern, my own wonderful partner in life, and my designated caregiver, set up his own site, Caregivers for Parkinson's.
These sites, when one has not experienced them fully,may seem somewhat flaky, I'm sure. But with my hand to my heart, I swear, it is one of the greatest of all supports you will encounter. I jokingly say, they are open 24/7, and truly they are. It is not uncommon in someone with Parkinson's to experience unsettled sleeping patterns. Can't sleep? A specific new symptom has arisen? Feeling down? Sign in, and you will find immediate support. You will make some contacts for life...people whom you may eventually even refer to as a friend.
So, I guess I wrote this to try to impress upon you, what an incredible sense of support you can receive from these groups. Spend time in a group, sit back and watch, and when you are ready to get your feet wet, just jump on in! Ask, question, and learn. I can not imagine life without this source at my finger tips. Me....who still considers herself, Technically Challenged, consider my favourite Forum and Chat Room, as one of the most important aspects of my health care (next to my doctors, of course).
Now, speaking of the computer, being Technically Challenged, a side note......my next appointment with my Movement Disorder Specialist is via Teleconference....like is that crazy, or what?!
