Thank you so much! I am very humbled to know that so many people have stopped by to read my blog, comment and share your story. I have been writing more lately and plan to blog at least once a week.
I’m also humbled at all the people that follow me on twitter (and I follow back), engage with me, message me, listen to me, share with me, retweet content, ask for advice, share advice and care about Alzheimer’s disease.
I do have a day job (nothing to do with Alzheimer’s) and I spend several hours a night reading, learning, listening and sharing what I learn and experience. (I pre-schedule most of my tweets – I’m really not on Twitter all day and night) 🙂 I don’t do this for money, I have a career for my income! I do this out of love and respect for my Mom. I also assist my father with caregiving. For fun, I bowl, play volleyball, travel and spend time with family and friends.
My Mom is in the late stages of Alzheimer’s! She was diagnosed four years ago! I moved back to Michigan two years ago to help my Dad with caregiving. I continue to live with them today and help! I have a great job, work virtually, choose to live with my parents and help with caregiving.
I try to respond to everyone that follows me, mentions me, messages me, comments, retweets, etc. I take pride in the fact that I do respond to everyone (I may have missed a few, but I’m not perfect) – Most organizations/individuals do not even respond (they only self promote themselves with one-way communication or don’t communicate at all)!
It’s hard to believe that my blog has had thousands of views. I would have never thought anyone would have read what I have been writing. I have been using my blog and Twitter handle @ALZandDementa as social/virtual therapy for dealing with my Mom having Alzheimer’s. This is my support group! You are part of it and have made a huge difference in my life. THANK YOU! I have made so many wonderful connections online. I have had the opportunity to meet some of my online connections in real life and by phone.
My new website is up and running at http://www.ALZandDementia.com. I’m still working on adding some features to finish building it out. I hope you will join me there and continue to read, comment and share your story.
Please follow me on Twitter at @ALZandDementia; I have tweeted nearly 6,000 tweets, I’m following around 1,500 and have around 1,200 followers. I have heard from so many followers via Direct Message that do not want to reply publicly, showing support! I also get a handful that think that I’m too direct or don’t agree! I have had 1,000s of interactions with followers on Twitter.
You can connect with me on Twitter at https://twitter.com/ALZandDementia
My blog/tweets are sometimes very direct, showing my disappointment in advocacy, awareness, social media, government funding for research, etc. I am a very direct communicator and speak my mind. I have passion for Alzheimer’s and my Mom’s life depends on my passion and advocacy. I know that the odds of anything happening in her lifetime, is not realistic. I will fight hard for this cause and will not sugarcoat my feelings or disappointments. Also, when my Mom has a bad day, the stress level may drive me to be more direct and pointed with my comments/posts/etc. I sometimes go on rants, but that’s my passion for the end goal that we all have (a cure and/or treatment for Alzheimer’s)! I say what many want to say, but don’t! I’m sorry if that has come off the wrong way to some.
If you work in an organization and support Alzheimer’s; I would hope that you have the same passion that I have. You may not communicate as direct as me, but you need to have passion. You need to raise awareness and continue to educate others around this disease.
When reading my tweets, please do not read tone into them. I’m writing my thoughts in 140 characters or less. Also, 99% of my tweets are educational, informative, raising awareness, advocacy and positive. I will post some that are not! If your Mom was dying with this disease, you would have similar passion. Some of my Tweets towards the National Alzheimer’s Association and other organizations are educational (trying to share best practices with social media, mobile, etc.) and to motivate them to use social media. They may appear as negative/attacks; this has never my intention. My intention was and will be to raise awareness.
Thanks for taking the time to read this!