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
Peace,
B

#DementiaStrong #AlzheimersDisease #DementiaRelatedIllnesses #AlzheimersAwareness #ThePowerofMusic

13 thoughts on “Why I Do What I Do

  1. I sat with the below gentleman and his wife in Tallahassee at our dinner event. Actually, most of the folks at my table were couples and one of them were living with the Alzheimer’s disease.

    Sent from my iPhone

    >

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  2. Hi Brian. In 2005 at age 47 I was diagnosed with EOAD -Early Onset Alzheimer’s Disease. A few months later a 2nd neurologist changed my diagnosis to MCI mild cognitive impairment. I also use music, especially when I am in the “fog”. It helps me to relax & stay calm until the fog has lifted.

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  3. Thank you for your perspective on this topic. To be stigmatized for a disease you can’t control is so unfair. Your perspective helps me greatly to relate to my mother. Thanks again! 🙂

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  4. Brian, you are spot on. Music helps me as well and brings me joy often when I am very frustrated. I can remember songs from my teen years pretty well. So far I have not yet faced the stigma of Early Onset Alzheimer’s but I do think some people don’t believe me, regardless of what my neurologists say.

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    1. I know the feeling Kelly. Regardless of popular belief, we are the ones that know how we feel. We are the ones that know what we feel before anyone else. I know Neurologists play an important role for some but very, very few don’t know about Dementia-Related Illnesses, so the guess. It’s sad.
      Just keep busy, don’t stop challenging yourself, keep pushing. Take care of you! B

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  5. How do you deal with the isolation?? I can no longer drive and all my friends and family still work. That’s the challenge with people who are single and have no “significant” other in their lives. I can’t afford to Uber anywhere and there is no public transportation and I’ve tried other avenues and those fell through too. I sit at home and cry most days. I still am a very social person and that loss is affecting me drastically. I’ve brought up this problem at my local Alzheimer’s Support group that meets monthly, and has discussed with the staff at the local Alzheimer’s Association office. Everyone I meet or know is a “couple”. Once or twice a month friends will call and take me out with them to someplace fun. Or shopping. But it’s rare. I could use some form of routine and to feel useful. I’d love to volunteer somewhere but have no way to get there. I’m alone and feel trapped in my home which I know is the worst for the disease. I am sure I am not the first person with Early Onset Alzheimer’s in my age group who is facing this challenge.

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    1. Robin, I wish I could tell you what to do to not be lonely but it varies for each person.
      For me, I rely on my music. I write, I Advocate, I play brain games.
      Sometimes you have to reach out to friends to see what they are doing. They may have the assumption you can’t go anywhere or want to go anywhere. You can use this as an opportunity to let me then your desire to do things. I would hope they would understand.
      You can also look online for support groups. Also look for the Area Agency on Aging in your area. They do a lot.
      May I ask where you live? I may have some options for you.
      Please let me know.
      Take Care, Breathe and get back with me.
      You can email me at alzupclose@gmail.com.

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      1. Thanks for your suggestions. I have music playing ALL the time and it helps with the loneliness (Fleetwood Mac from the 70’s is on my Alexa right now). I do have my monthly Support Group. I actually worked hard with the Alz Association office here (Reva Revill) and got the only Early Onset Support Group in this area started. I had hoped it would springboard into more of a true support system (I have a cousin with MS in Ohio and hers is great that way as well an old neighbor that has a Parkinson Support group and they are like an AA group for each other and it’s awesome). Unfortunately, most of the people in the group are married and it’s not evolved into anything more than meet once a month (and I missed it one month because I couldn’t arrange transportation). My friends and old co-workers work non-stop and are married and have families that they take care of and don’t live near me (I had to sell my house and now live away from old neighbors). I don’t have any older family (retired) local. I’ve spoken to the Elder Affairs office, and just about every agency they’ve referred me to and all I’m too rural (Bradenton off St Rt 64 near Lakewood Ranch) for any of their support services or transportation options. I’d really hoped to strike up a weekly spin off group from the Alz Support group (do outings together, attend events, take classes, lunch, meet at each other’s homes, etc. etc) but that just hasn’t happened. I was very active with the Alz Association (went to the Florida Rally to Tally several times, attended the National Conference in DC two years ago, did Walks, etc etc., but now that I can’t drive or travel alone, it’s restricted all of that. I do go on vacations with family once or twice a year and I do see friends once a month, but I need a reason to get out of bed in the morning on a regular basis. I’m not saying I’m suicidal, but I truly know and understand the depression that gets people to that level of desperation now. I’ve spoken to Reva and the Alz office here a LOT and even put her in touch with the Director at the Parkinson Center here (they have an AWESOME center and an amazing support system that deals with issues such as transportation, etc.). I am trying but so far, nothing happens and I go day after day, reaching out to people but everyone in my age group is working and very busy so that’s just the way it is. But it helps to “talk” about it so thanks for that. I truly appreciate knowing there is a person out there who understands. That’s why I do look forward to my monthly support group meetings. I truly do. I try and read the blogs and other websites (someone from my support group did one) but it depresses me more than lifts me up. I read about people being able to contribute and do things, being able to “live” while they still can, and it all involves being able to “go” somewhere. Just today I thought how I’d love to make some cute valentines gifts to take to my support group meeting, give to a friend who took me out last weekend, etc., but I can’t get to the craft store to get supplies. In a way, each time I can’t do something due to transportation, it is a smack of reality in my face that I have this disease. It’s hard to keeping living “in spite of it”, when it’s the disease that is preventing me from doing so. Oh well, thanks for the outlet here. I do appreciate it. Truly.

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    2. Robin
      Our city has an “RSVP” program, where they give free rides to volunteers that need one to and from their place of service. My former employer, a museum, has volunteers that regularly use this service. Check and see if your town, city, county, or state has something along those lines. This is not my website, but if you enter your zip code here it may lead you to transportation and other services:

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