Why I Do What I Do

From the moment I was diagnosed with Alzheimer’s Disease, I was stigmatized. You’ve probably read about the number of ways I was stigmatized, but the one that stung the worst was when a close family member told my sister they thought I was faking my disease to get attention. Yes it stung, but after being diagnosed 4 times by 4 different Neurologists, I didn’t worry about it anymore. It still stings a little bit but that’s ok, they don’t speak to me anymore.

Yes I’ve progressed a bit but not to the point where I need 24/7 assistance. In my mind, I’m a long way from that. I owe it to keeping busy, using Music Therapy as a mood Stabilizer and living an active lifestyle with Maureen. We also spend our time traveling around the country and beyond Spreading Dementia / Alzheimer’s Awareness from the perspective of the Care Partner and Person Living with Dementia.

You see, we’re not homebodies. We like to go places. If you follow us on Social Media you’ll see where we’ve been in such a very short time. We travel quite quite a bit for leisure and for speaking engagements. wherever we go, I take photos, not just to take them but for memories. I know I’m going to get to the point where my memories will start to fade, both from age and Alzheimer’s so I am preparing for that. I am going through my photos and placing them in albums. I may not be able to remember (without assistance) where the photo was taken but, as Maureen always, “you may not remember being there but you will remember the feeling it gave you.” That part has already started so I’m glad I started creating my albums.

I also mentioned how music stabilizes me. Pardon me if you’ve heard me say this before or read it before but music is AWESOME. Use this for an example … think of a song you used to know very well, maybe something from your early teens or prior. If you think about it, you may not be able to recall the words but the melody may come to you in bits and pieces. Now, go to iTunes or Google Prime Music and put the name of the artist (if you remember) or a part of the title or whatever you can remember. Once you find it and listen to it, let me know how it made you feel. Furthermore, let me know how much of the lyrics you remember. I have downloaded songs from the 60’s and 70’s and amazingly, I remember 85% to 90% of the lyrics. Thank goodness for my long-term memory bank. The joy that comes flowing through your mind is euphoric. Even if you don’t have a Dementia-Related Illness, try this. I think you’ll be glad you did.

The thing is this … those of us who I know who are Living with a Dementia-Related Illness are doing pretty well. Yes, we’ve all slipped a bit, we’re not as sharp as we once were but we manage. Our Care Partners help fill in the blanks but they also are there for the frustration, the melt downs, the anger. For us, we may forget those incidents by the next day … they don’t and that is difficult to manage. I don’t know one person who, is reminded of what happened or remembered on their own, doesn’t feel like crap. Trust me, we all wish it was always a bed of roses but when those thorns come out, it really has a huge affect.

Then there are the Hallucinations . Trust me, they are NOT fun. I can’t speak for everyone else but for me they are menacing. Maureen assists me in getting rid of them (we yell / curse at them until they disappear.) Hey whatever works.

So, as I may have said before, “Living with Alzheimer’s” is no picnic and it affects people in different ways. We all have to fight it in whatever way works best for us. When it’s not hitting us over the head, WE LIVE!!! WE LAUGH!!! WE DISCOVER NEW TALENTS and HOBBIES!!! As long as we remain “DEMENTIA STRONG” and not allow our disease to define us, we’re going to be OK for a little longer!

Until Next Time

#DementiaStrong #AlzheimersDisease #DementiaRelatedIllnesses #AlzheimersAwareness #ThePowerofMusic