Dreams, Delusions: Time For A Reality Check

View of the Grand Prismatic Spring, Yellowstone National Park. Photo by Mark D. Timmons, 2018

Living well with dementia is a phrase I remind myself every day. It’s a phrase that has different definitions depending on who you ask. By that, I mean that living well with dementia is a very personal, very individualized set of choices and decisions to each PLWD (Person Living with Dementia). What I do in my life to live well with dementia is in some way unique to how someone else lives well. Granted, there are some basic, general tenets to living well with dementia that we all share, and for those not familliar with the concept I highly recommend checking out the resources on the website of the Dementia Action Alliance www.daanow.org in addition to watching the DAA and PBS produced documentary, Revolutionizing Dementia Care, which you can access from the DAA site.

For me, living well with dementia means to continue to have dreams, set goals, and work towards making them a reality. I have written before about the ways that my symptoms have necessitated revising my dreams and goals for opening my own business. Never willing to give up, or give in, but being honest and open-minded enough with myself to recognize when a plan needs to be tweaked to adapt to my condition. I have many ideas for business ventures that would be successful, only a few of which I have shared on this blog.

But are these really dreams and goals, or are they delusions of a mind demented? How can I tell the difference?

Stonehenge, stock photo, photographer unknown

I recognized early in this process that as an entrepreneur with dementia, it would be a tough hill to climb alone. People question the business planning ability, people question the leadership ability, people question the sustainability of a business created by an individual with cognitive issues. But I have always felt I had what it takes. And i insured my belief in myself and my ideas by deciding to include others in my entrepreneurial process. Yet to date, it hasn’t been enough to bring these dreams to fruition.

My health situation continues to be fluid. The type of dementia I have is still to be determined. I head to Boston in less than two weeks to meet with a team of experts. Meanwhile I notice changes. I’m not writing as much as I used to, partly because it is harder to keep my mind focused. Case in point, this blog post: I have been ruminating about it for days, and, finally determined to write it out, it has taken me a few hours to write what I even recently could get out in 30 minutes. More days spent on the couch, not even getting out of the sweatpants I slept in. But I am not depressed. I just feel more….disconnected, I guess might be a good word.

So that brings me back (the long way, I guess) to the main point of this blog post. Are my dreams and goals drifting to other side of reality, succumbing to dementia? I honestly don’t know. All I know is I don’t want to give up. Dreams become goals, and goals require a plan to get from Point A to Point Z. I used to know what each point along the way was to make my dreams come true, to reach the goals. Now those in-between points are hazy, out of focus, and I don’t know what to do next. With the way things are, I’m not sure how many more years I’ll be able to continue living here in Maine, which puts another layer of cloudiness on my “business plans”.

But entrepreneurship is not my only dream. I want to travel. I am grateful to have had the opportunity to roadtrip across the country on a few occasions, and to have been able to photograph and document those trips to preserve. But there are other places I want to experience, other lands I want to see, and I can’t help but wonder if it is an unrealistic expectation at this point, if ‘that ship has already set sail’ (pun intended.), since driving is on its way out for me in the future, and getting lost when I’m on my own is a real and current thing.

Kolob Canyons, part of Zion National Park, Utah. Photo by Mark D. Timmons, 2018

I guess a lot of it boils down to where I decide to expend my mental energies. PLWD will understand, and others may understand, but to live well with dementia requires a lot of effort on my behalf, and I’ll be honest, it is tiring sometimes. Mentally and cognitively tiring. And maybe the amount of ‘cognitive reserve’ I have in the tank is lessening, if that is even a thing. Sorry, it’s a hard feeling to describe in words, lol.

So let me repeat, lest this post be read in the wrong context and tone: I am not depressed. I intend to continue to live well with dementia, I am just questioning now how to further tweak my definition of the phrase. There is some regret that I haven’t accomplished certain things, achieved certain goals, but that regret wouldn’t be there if I wasn’t trying to make something happen. For me, that kind of regret is better than regretting not having attempted something at all. Does that make sense? It’s ok if it doesn’t, it makes sense to me, lol. I tried to make this post as clear and organized as I could, but I feel like I am rambling now, so I’m going to look for some cool pictures to add before I post it.

Mulholland Light, from Lubec Narrows. Photo by Mark D. Timmons, 2018

Thank you always for following, reading and sharing my blog. I love looking at the stats and seeing how many people read my ramblings, and from how many different countries my blog has been read in ( 4 so far: U.S., Aruba, Canada, and the U.K. 🙂 ). And I love reading your comments, encouragements and suggestions.

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Eulogy to Dad

1 November 1939 – 25 December 2018

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My father was a simple man. This may shock some people to hear, sound incredulous to others, but then again, not everyone knew him like I did. He was a simple man, who happened to be part of a complicated family. When I was little, it was easy to see him as a simple man; he was simply, my dad, my hero. As I grew older, and, so I thought, “smarter”, I made him out to be more complicated. Now, as I grow older still, instead of getting smarter, I am getting wiser, and once again see my father for who he really was: a simple man.

He taught me so much of what it means to be man, to be a father, to be a leader. We all know he was a man of not many words, but therein lies the beauty of what made him such a remarkable man. He didn’t need to speak, I just needed to watch. I watched, and I learned.

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He taught me how to be competitive. Now, too much of anything is seldom a good thing, but a certain amount of competitiveness helps us fight for our beliefs, our truths, our goals, and for anything that is important to us. When I think about my Dad’s competitiveness, I remember times when I was young. I guess he had already lit the competitive fire in me at this point. We were playing a board game, I think it was called Othello. After a long back and forth battle, I finally had him in a position that would give me victory. As I placed my piece, I think I said something tauntingly like, “Huh! What are you going to do now?” Ever the competitor, my dad flipped the board, scattering the pieces everywhere and said, “oops. I guess we’re going to have to call this a draw.” Yes, he was a competitive opponent.

Both me and my brother Paul played basketball in a YMCA church league as kids and teenagers. To this day, my father is the only spectator I know to get into an argument with the referee during a game; the only spectator to cause a technical foul to be called on the team he was supporting. Fortunately for me, this was at Paul’s game, not mine. Soon after, I think it was decided it would be best if he didn’t attend as many games.

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But this competitiveness also served as an ally to his kids. He turned this competitiveness born out of athletics into a steadfast dedication to his children, and to my Jan, my stepmom. He defended our safety, our honor, and our reputations without a second thought. He gave of his time, his money, and his love, without a second thought.

When I first moved out of my mom’s home, and was living on my own, in another state, and found myself without food, Dad and Jan would show up with a trunkful. When I was lonely, and just wanted someone to talk with about nothing in particular, I could always pick up the phone and talk sports with Dad.
I’m really going to miss that.

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I smile inside how when I think about how those conversations would go. The conversation prompts would go something like this.
A.) How have you been?
B.) Did you see the game last night?
C.)What do you think about…. (fill in the blank)
And we’d talk a little about politics, maybe some other kind of current event, and he’d finally get around to asking…. Is everything all right? And I’d say, “Well, Dad, I’m having a tough time right now with something,” and he’d say, “hang on, let me get Jan, she’s better at talking than me.”

But that was Dad. He never gave himself enough credit. In later years, I would notice him apologizing for not being a great conversationalist before we’d hang up. I always felt better after talking to him, but he always felt like he wasn’t any good at talking. I assured him, “No Dad, you’re fine.” I didn’t need Dad to tell me all the answers, just to inspire me to search and fight for the truth, to find the answers. And he did that.

My father was not a perfect man, none of us are. But he never tried to hide his imperfections. Ours wasn’t always the perfect father-son relationship either. Like many life lessons I learned from him, I too try to never hide from my own mistakes or imperfections. There was a period of time we spent several months not speaking. But when our relationship was later healed, it was then that I realized it was I that had needed time to grow wiser, and he gave me that time.It was then that I realized he wasn’t really a complicated man at all.
He loved his family.
He loved his country.
He loved this world.
He loved his Boston sports teams.
What can be less complicated than that?

He was proud to wear the uniform of the United States Army National Guard, proud to be an early member of the 215th Army Band. Even after his retirement from the Band, he would stand at the front of the crowd every year at the Quincy Christmas Parade, like a child, eagerly awaiting the passing of “his band” and was proud of the fact that the 215th lead that parade every year.

He was proud of his brothers and the accomplishments, sacrifices, and contributions they made to the world. Though the Timmons family is a complicated one, over the years he often made attempts to look past those complications and even tried to be the peacekeeper at times. His methods may not have always been successful, but I guarantee you his heart was in the right place.

When I was younger, and allegedly “smarter,” I often said I was not going to follow in my father’s footsteps. I stand here today, a proud and wiser man, proud that I in many ways did follow his examples.

Like my father before me, I love my family fiercely, and would sacrifice my last breath for any of them.
Like my father before me, I love my country and my world, and feel the pain that he felt at the state of the world.
Like my father before me, Boston sports runs through my veins.

I am proud that my father taught me to be competitive but compassionate, to be proud, but humble, to lead by example not words, to admit mistakes, to look for the best in people. These are the qualities that made up that simple man I call “Dad.” Losing him creates a void I can never fill, an empty pair of shoes that will never fit me, though I must continue to try to do just that.

I love you Dad. And I’ll always, always miss you.

Rest in Peace

SSGT Paul Francis Timmons, Sr. U.S. Army National Guard, Retired

215th Army Band

Ramblings of a Demented Mind….

Phew. The hoilday season is upon us once again. Before I forget, I hope everyone who reads my blog has a safe, happy, and loving holiday time. I know they can be tough for some of us, but when the difficult times creep into our minds, try to offset it with a happy memory, or reach out to someone for a hug or other form of support. Whatever you need to get through it, I promise you there is someone in your life willing to be there for you.

I wish I had more to talk about when it comes to my Haven business. To be honest, there has been no progress toward making the business a reality. Why? I ask myself. Well, many obstacles have been put in my path. Things I need to maneuver through, as I get through this thing called life. Not all negative things, just…a lot. I suppose that comes naturally with the holidays, whether or not dementia is involved. But of course, I then throw dementia into the mix…. I can tell you I have everything I need to make my first batch of mead. I just need to wait for a day when I’m feeling more confident of my cognition to set it all up and get it fermenting. The first batch will just be a standard, mid-sweet honey wine, just to get used to the process. But I already have my second batch planned, after seeing a video on you tube. It will be a candy cane mead, perfect for next year’s holiday (if I get it fermented and racked soon enough.).

So yes, besides the busy season we are in, and the hurdles I face related to dementia, some new logistical concerns have crept into play. I’ll save them for discussion at another time.

I’m going to discuss the latest news on my health now. If I’m repeating myself in any way, please accept my apologies, and more important, be patient with me. Part of my reason for keeping this blog is to portray life with dementia. Right now, while I feel cognitively better to write than I have in a little bit, I’m still compromised, still not at “my best,” and part of that may come through in repeating things that have already been said. The confusion definitely came through a few minutes ago in an online conversation I was just having with a friend. But it’s important for me to continue to try to expresss myself, to stay communicative. Doing my best here. 🙂

So, a couple of months back I spent a day in the hospital for two important tests: a sleep deprived EEG (thanks Tricia!), and a dreaded lumbar puncture, AKA spinal tap. A month later, I was back in my neurologist’s office to review the results.

The EEG was improved slightly from the previous one. Apparently the seizure medication is making a difference, so it was decided to increase the dosage by 50%. My guess is that another EEG will be scheduled in the future to compare. The decrease in seizure activity (seizures that are only detectable on the EEG – it doesn’t ever look or feel like I’m having any seizures)has not made a difference in my cognitive function, though. The spinal tap showed “just enough” “slightly off” , but the neurologist admits to being stumped, and calls me a mystery and an enigma. There is no doubt I have dementia, she just does not understand what disease process is at work. The MRI shows a significant amount of vascular disease, with evidence of strokes, but other tests don’t give any reason for vascular disease.

So consideration now is being given to the 15% of dementia occurences that are considered “rare.” Not Alzheimers, not vascular dementia, not Lewy Body, not frontal-temporal. Dementias with names I can’t pronounce or remember, sorry. To follow up on this, I am now scheduled to be seen in Boston, at the Brigham and Women’s Hospital. First, by a Dr. Skylar-Scott, and later, by a Dr. Daffner. I am told they are highly regraded as experts in the fields of cognitive neurology. Dr. Daffner also teaches neurology at Harvard, and was my neurologist’s professor. He is part of a lot of clinical studies, and the hope is that with him I will be able to have access to cutting edge information. This appointment has been scheduled for late January.

I wanted to write some more, but I just don’t have it in me tonight. I have a meeting tomorrow with an organization I am excited to be part of. The Dementia Action Alliance. I wanted to talk about them and all the work they are doing to promote Living Well with Dementia. I wanted to describe how I am going to be contributing to their mission, but that will have to be saved for a future post. For now, please check put their website https://daanow.org. There website has a LOT of information and resources for anyone wanting to learn more about dementia.

Next time I write, hopefully I’ll be in a better cognitive state. Thanks for sticking with me through my ramblings, and as always, Keep Smiling.

It’s not an easy journey to be on, but when I see people reading my blog, it at least makes the journey seem less lonely.

 

Mark

 

Call for PLwD Arts/Crafts Entries 2019 Dementia Arts Fest — Truthful Loving Kindness

 

I am sharing this from a fellow dementia blogger, Truthful Loving Kindness. I’m thinking about entering with my photography…

But I also hope you check out Tru’s blog.

Thanks,

Mark

Get your motivator charged for camera, other Arts, and other Crafts , my friends …

via Call for PLwD Arts/Crafts Entries 2019 Dementia Arts Fest — Truthful Loving Kindness

Some Heavy Thoughts….

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Most of my mind these days has been focused on my health. For the time being, my current neurologist has suspended the “Alzheimer’s Type” description from my diagnosis, as she continues to test and search for a diagnosis that “fits” better with my dementia. As I write this, I am currently waiting for results of a long day of testing that was done earlier in the week. A sleep deprived EEG in the morning, followed by a spinal tap in the afternoon, is hopefully going to give us more data to work with. While at first, hearing that it could be something other than Alzheimer’s made me want to celebrate, my enthusiasm was quickly squashed when it was explained that some of the remaining possible causes for the dementia being considered are still not reversible, and some actually have a poorer prognosis than Alzheimer’s. So, bottom line is,…. who knows…..

A short while ago, I read that a Milbridge (a town no too far from my own East Machias) resident and essayist, Sue Hubbell, died, at the age of 83. The article explained that she suffered from dementia, and had decided to go out “on her own terms.”

https://bangordailynews.com/2018/10/20/arts-culture/sue-hubbell-milbridge-essayist-known-for-writing-about-beekeeping-dies-at-83/?utm_medium=Social&utm_source=Facebook&fbclid=IwAR1mFqoQmULMnV607hjhsIcYLpdkGtcebxxaXW15yOoXHiridnoonvDzpb8#Echobox=1540063283

It saddens me to read about another death from this horrible disease, but I do not judge Ms. Hubbell for wanting to take back control of her life. I live with a hope and conviction that a cure will be found in my lifetime, and one of the reasons I write and talk openly about my own struggles and dreams is so that others can be inspired to hope. I want others with dementia to not give up on their dreams, to find the things in life that can be accomplished, to find a peace that dementia cannot take.  I hope Ms. Hubbell has found her peace at last.

It is not easy to live with this disease. I am only 50. I know what it feels like to fight this disease at my age. and what it takes to feel like I accomplish something positive every day. I cannot even pretend to know what it must be like for someone much older than me to have to fight the same battles. Not only do is it hard to fight the fight for ourselves some days, it’s also hard when we can see the impact our decline has on those around us. Self guilt becomes a very real thing, just one more foe we have to confront.

Another reason it has been a while since my last blog post, is that in some ways my own cognitive abilities have “slipped” a little bit more. Remembering things (like blogging) has become a little bit harder, as has staying on top of finances and other skills the doctors collectively call ‘executive functions.’ I get more confused with matters of time and place – by that I mean I get confused as to when and where I am. Longer term memories are a problem too. The time I lived in Arizona, and my trip across the country when I moved,  now pretty much only exist in my photos and journals.

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None of this is in my control, so I do my best to be “ok” with my reality. For the time being, I am compensating. I feel I write more effectively than I used to. I take more pictures than I used to. I am happy about those developments. Abby, my daughter, recently showed me how to use the phone app Spotify, and now I listen to more music than I used to; and when I listen to music it helps my cognitive function. So for me, the fight is all about compensating and adjusting, and finding something else to make me happy. This is how I fight the disease that I cannot control.

In preparation for the sleep deprived EEG I had earlier this week, I was required to stay awake 24 hours before the test, the only exception being a “nap” allowed between the hours of 9 PM and midnight. Oh yeah, and I had to accomplish this without the aid of caffeine or alcohol. The hours were happily passed going through and scanning old photos with my best friend and big sister by choice, Tricia. She and her husband Alix made the LONG drive to be with me and support me during this difficult couple of days. I can’t say enough about how much their friendship and love means to me. I hope that everyone has a friend like Tricia is to me. It was so much fun going through the photos she brought, and hearing her stories about them. And she has known me for so long that she helps me remember some of the stories behind some of my own pictures.

So… writing, photos, close relationships…these are some of the things that dementia has helped me bring into focus; these are what I choose to use my energy on; these are what bring me peace and happiness, as the life around me tries to break through with the chaos and confusion of dementia.

I write so that others might understand me a little more, and understand the process of living with dementia a little more. Yet, each time I write, I also realize I am writing because at that moment, I need to remind myself the same things I am explaining to the readers.

Thank you for reading my blog. Just knowing there are people out there who read my ramblings is encouragement that goes beyond words. My wish is always to encourage and spread awareness, so feel free to comment, like, share and spread!

Until next time… Keep on Smiling, Keep on Fighting, Keep on Living

 

RIP Suzanne Hubbell, January 28, 1935 – October 13, 2018

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Turn Into the Wind, Don’t Sail Against It

20180721-_DSC6078First of all, I wanted to once again thank Lura Jackson for her recent interview and article in The Quoddy Tides, which went in depth about my illness, how I cope, and what I want to still accomplish in life, both personally and in business with Abby, my daughter. The article can be read at their website, by following this link:

http://quoddytides.com/fighting-dementia-by-creating-a-haven8-10-2018.html

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I have struggled for a few weeks now with my health, but I am slowly feeling stronger each day. Strong enough to write again, and provide a little more detail and excitement about our current plans for Haven!

If you read the Tides article, you’ll know we’ve evolved the business concept to make use of the 20 acres of property I already live on/own. We’ve decided to make Haven a back-to-nature, minimalistic, endeavor, and create a space that takes you away from the everyday, and embraces sustainable living and artistic expression. Inspired by J.R.R. Tolkien and his visions of Middle Earth, Haven will consist of ‘hobbit hole’ type lodging small, intimate nooks unplugged from the world where one can go to rest, recharge, meditate, and create. We will build these in the back acreage, intermingled with the beauty and peaceful serenity of nature. Access to the holes will be through trails to be carved out. So, someone staying at Haven will need to prepared to “hike in” a little bit to their abode. As part of a second phase of the lodging development we hope to also have tree house style accommodations.

A common area will be central to the living quarters. This is where restrooms, a business office, and the cafe/dining hall will be situated. Many of our menu offerings will be inspired by Lord of the Rings, but as always, will have a unique twist that will make the experience one of a kind.

A performance stage will be installed, from which many activities can be conducted. Open mic events, small movie viewings, special events, and even weddings can take place on the stage.

To further emphasize that last point, let also announce that I am now a legally ordained minister! I do not take this lightly by any means, as I have had an interest and respect of all faiths for my entire life. I will now be able to conduct ceremonies in most faiths and traditions. It pleases me to be able to celebrate and show respect to the faith of your choice, because, really, we belong to the same universe no matter what you believe. Haven can be a place where you formalize your marriage or union, in the beauty of Maine, possibly under the stars if that is what you’re looking for! I look forward to being part of planning special moments for couples!

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Near the stage, we envision an outdoor kitchen setup and bar. I’d love to see a stone oven there, where we could make pizzas to order and other yummy dishes! The bar service has evolved into something simpler, yet more exciting for us. Rather than a full beer, wine and liquor bar, haven is going to ficus on the following: traditional beer, hopefully to be crafted by Lubec’s very own Gale White, from Lubec Brewing Company! We still plan on reviving the Jacobs Ale that my first wife’s German  family sold in Boston back before Prohibition. New to the business model, is the idea of making mead, a fermented honey beverage that was popular thousands of years ago with pirates, viking, (and the societies of middle earth), and is slowly starting to make a comeback in today’s craft brewing world. Haven, in fact, is already preparing to make its first batch! Our mead will be offered in a variety of styles and flavors, on site by the pint and to go in bottles. If you’ve never had mead before, boy are you in for a treat!

The gallery will be a part of this operation as well. But until then, my photos are available for viewing and/or purchasing at my home on request, and a few are available at the Eastland Motel. I would like to set up something somehweher in town, maybe on the Machias dike some weekend, we’ll see.

More to follow, including details about upcoming crowdfund events, a mead club, and other fun stuff designed to get you as excited as Abby and I are about the turn of events. Much of what happens with my health is out of my control, but I CAN control how I respond. This latest turn is a good example of that. It took me a little bit of time to regroup after last month’s medical tests, but what has emerged from that is a better plan with a stronger chance of success and lesser risk. You can’t waste energy or time on what you lose, on what you can’t do, on what you can’t control. Focus your energies on the positive, on the things in your life you can influence.

Thank you for reading, and please continue to read, follow, comment and share!

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Changes are Part of the Life Cycle

Another important blog post. Than you for reading, commenting, and sharing…

20180607-_DSC5756One characteristic of a successful entrepreneur is the ability to make changes as needs and opportunities arise. No business or business plan is immune to changes, and you must not only have the ability to change, you must also have the willingness to change. Many businesses have started, and been successful for a short period of time, only to wind up failing in the end because the owner fails to recognize or adapt to changes. These changes can take many forms: demographic changes, changes in economic trends, sociological changes, ….. the list can go on. Although we are still in the planning stages, Haven also is changing due to another, more internal factor.

If you follow me on facebook, you may have just read that recent medical tests revealed more shocking information about my fight with dementia and early onset Alzheimer’s Disease. I don’t want to rehash the entire facebook post, but to summarize it, I appear to be having “micro seizures” and “mini strokes,” neither of which I ever realized were occurring.

I recently was talking with one of my business mentors, and she reminded me of the benefits of starting small, and in my case, simplifying the start-up operations. So, Abby and I took a step (ok, more like 5 steps) backwards, and brainstormed how we could achieve the dream in a more simplified way.

We have come up with a way to make this happen. And see, this is why as an entrepreneur it is so important to keep an open mind when it comes to change. The newly morphed version of Haven has us more excited than before! I can describe its impact, but to go into “full reveal mode” is something I can’t do just yet. The idea is so exciting and unique we feel we need to get further along before a full reveal can happen. Armed with new ideas, and renewed vigor, Haven will impact the hospitality, music and arts, tourism, travel, homesteading and sustainability industries. It will compliment and enhance initiatives already in motion in the region, and will do so in a way that is unique. By design, it will be built up in a couple of different stages, each stage expanding the business and building on the popularity and success of the prior stage, which will make it a more affordable venture. The basic elements that backbone the concept of Haven will remain the same: the ideas of good food, good drink, good entertainment, and a place to sleep. And the Gallery will still be a part of the overall concept.

It sounds more complicated, but part of the excitement for us is that is actually less complicated than the last incarnation of Haven!  It truly gives a new spin on the “less is more” saying. We have new kinds of bureaucratic red tape and permits to wade through, because, well, this is the kind of world we live in, but we will get there.

Are you curious? Do I have your attention? Please keep following us, keep sharing, and tell your friends and families about us. We still need everyone’s support, love, prayers, well-wishes, and positive thoughts.

Until next time, keep smiling. And learn about dementia, and early onset alzheimer’s. It’s not a natural part of aging. More research needs to be done (and is being done) by the experts, but everyone can afford to learn a little more and help erase the many stigmas that surround it. I am an open book when it comes to how the disease affects me, so if you have any questions, please ask!

“I will be Alzheimer’s first survivor.”

“Alzheimer’s has a hold on me, but it will not destroy me.”

“I will not go quietly into the night.” I will never give up on my goals and dreams.

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