and yet . . . HERE WE ARE!

#AlzheimersDisease, #VascularDementia, #Type2Diabetes, as well as other ailments, is not exactly how I envisioned my older years. Yet, HERE I AM, BUT NOT GIVING UP! So many other Diseases now have cures, ways to slow progressions, and have ways to assist individuals to live a good life. However, WE DON’T have those things so HERE WE ARE, STILL WAITING PATIENTLY . . . VERY PATIENTLY.

For those of us who are Living with a Dementia-Related Illness, we’re not just standing by and letting time slip away. We raise awareness, talk to the newly diagnosed to give them some hope as to what the future looks like for them. We also assist others who are further on with their disease, many now living in a Care Community. Sadly, most are forgotten and that adds to their progression. Then there are the lucky individuals who have consistent visits from their family and friends. This helps to keeps their hopes, strength and clarity strong.

I remember seeing my parents (Mother with Alzheimer’s, Father with Vascular Dementia, just slipping away, day by day. I sure didn’t expect to receive my Alzheimer’s Diagnosis in OCT, 2014 and then attend my Mother’s Funeral in January, 2015. That was a very hard time, but, I knew I had to push on.

I knew I had to do something to call attention to, not just Alzheimer’s Disease, but also ALL Dementia-Related Illnesses. That is what led me to become a Dementia / Alzheimer’s International Advocate. I do this in honor of my Mother not only to keep her memory alive inside of me but to honor her life for being one of the the strongest individuals I knew.

Our Advocacy efforts during COVID-19 took away our face-to-face speaking opportunities but we were, however, thanks to technology, able to Advocate by utilizing ZOOM, Go To Meeting, and other online platforms. It wasn’t the same as being there in person but our messages were still delivered.

It will take something stronger than COVID-19 to stop us from Advocating. We will be taking the stage once again (virtually) to continue telling our stories, our accomplishments as well as our difficulties.

Just so you know, June is “ALZHEIMER’S and BRAIN AWARENESS MONTH.” You will probably be asked to post something purple on your timeline to assist us to make others aware. I hope I (WE) can count on YOU to post something PURPLE!

Until Next Time,
PEACE!
B

Yes, we are open and honest about the lives we live each day. We are not afraid to talk about the GOOD, the BAD and the UGLY. We don’t want anyone walking away from one of our presentations and just hear about the good. The BAD has to be shared so that everyone will walk away with a complete understanding.

We are fast approaching the month of June. June just happens to be To raise awareness of these cruel diseases, I would appreciate it if my friends could post put this on your page for today.Hold your finger anywhere on the message to copy and paste to your Timeline.💛

DEMENTIA MARCHES ON!

Dementia knows no age.
It equally takes the memories of man, woman and even children.
It cruelly attacks our most recent, precious memories, leaving us with our long-term memories, which allows us to remember what was but not yesterday or today.
It can stop our brain from functioning at a moments notice like a pitch black curtain descending in our heads, causing us to lose our words and complete thoughts in mid conversation with no way to retrieve them, leaving us standing there with a blank expression.
No matter what we do to try to stop it, DEMENTIA MARCHES ON!

~B

I’m not writing this to depress you or to make you feel sorry for those of us that are living with a Dementia-Related Illness, I’m just trying to help you understand what we experience, sometimes for a minute, an hour, a day or days. To put it bluntly, IT SUCKS!!!

What I do ask you is to not feel sorry for us. I ask that you to interact with us just like you would anyone else.
But wait . . . that’s not all!

Dementia not only affects memory. There are also side effects that come along with our Disease. Some, but not all are anger, emotional roller coasters, hallucinations, depression, anxiety, difficulties with visual and spatial abilities, problem solving, difficulties handling complex tasks, difficulties with planning and organizing, and later on, difficulties in completing every day tasks and more issues as we progress.
To make matters worse, according to #AARP, some scientists say there is compelling evidence that the negative effects of the COVID virus could last even longer, possibly creating a surge of cases of dementia and cognitive decline years down the road.

I could go on and on but, I don’t want to and I think you get the point.

When 2021 was approaching, I realized that I was entering my 7th year of my Alzheimer’s journey and my 3rd year of my most recent diagnosis of Vascular Dementia. Has that stopped me from #LIVINGWELL? The answer to that question is NO! If anything, it pushed me forward to do things I might not have done before.

In 2019, I moved . . . again, but this time staying in FL. I moved to Largo to join my Life Partner / Care Partner Maureen Rulison. She has been a blessing in disguise, (she says she is not in disguise) organizing all my medications, vitamins, setting me up with my new physicians and basically helped organize my life.
Adding to my list of addresses, we just recently moved to, what we hope to be, our forever home. (the U.S. Postal Service just breathed a sigh of relief! hahahah) We talked a lot about living on the water. With Maureen’s determination and the stars aligning, we were lucky to find what we were wishing for. Our backyard is Tampa Bay (the body of water, not the area) and the dolphins and birds greet us with a good morning every day. It’s surreal to live in a beautiful location and this location and all that it offers does help with my anxiety.

I’m saying this here and now, unless we win the lottery, we are NOT moving again.

I feel like I have jumped around a lot with this post, but I know I haven’t written a new BLOG post in quite a while so I had some catching up to do. My New Orleans friend of hundreds of years, Giorgio, texted me the other day with this message . . .
“Good Morning my friend . . . I’m noticing there’s only 5 days left in January. When are you going to make your January post?”

Well Giorgio, here ya go my friend. Thanks for the heads up and not allowing me to get lazy. I need that push every now and then.

I would also like to thank all those who follow me and send your encouraging words. It really means a lot.

If I could leave you with words of encouragement . . .
“If you are LIVING with a Dementia-Related Illness, don’t give up!
If you know someone who is LIVING with a Dementia-Related Illness, drop them a line. It may be just what they need .
If you can’t decide whether or not to keep in contact with someone who is LIVING with a Dementia-Related Illness, the answer is ALWAYS, YES!

PEACE,
Brian


AGEISM Strikes Again!!!

“I chose to write this blog post today because of the positive revision of the Older American’s Act, originally written in 1965. I also chose to write today for I am having a very good “brain day”. Those kinds of days have been few and far between lately so I must take advantage of when my brain says, “Hey, use me while you can. I’m good to go!”  ~B

Have you ever heard of “Early-Onset” Breast Cancer? “Early-Stage” Heart Disease? “Early-Development COVID-19”?

I ask these questions because the Diseases I mentioned above have no age limit. You can develop Cancer before age 1. You can be born with Heart Disease. You can develop so many things in your teen years.

If you developed any of the Diseases above, no matter your age, you would be treated the same, meaning a 3-year-old will be treated the same as a 45-year-old. Same illness, just a different age group.
Do you think Jonas Salk, after developing the shot for polio said, “This is only for individuals over the age of 45!” NO! It was designed to help ANYONE at ANY AGE!

Enter Alzheimer’s Disease and Other Dementia-Related Illnesses, some of the most complex, misunderstood, stigmatized Diseases in the world.  Can you recall any legislation brought before Congress that had to be voted upon based on the age of any American Citizen for any known disease?

Thanks to Mr. Google, I found the following:

  • Alois Alzheimer noted the unique symptoms in 1906. 1906: Alzheimer’s Disease is first described by Dr. Alois Alzheimer in his patient known only as Auguste D. The patient experienced memory loss, paranoia, and psychological changes.
  • Jonas Salk (1914–1995) became a national hero when he put to rest the fear of the dreaded disease with his POLIO vaccine, approved in 1955. Although it was the first polio vaccine, it was not to be the last; Albert Bruce Sabin (1906–1993) introduced an oral vaccine in the United States in the 1960s that replaced Salk’s. (no age requirement)
  • Congress passed the Older Americans Act (OAA) in 1965 in response to concern by policymakers about a lack of community social services for older persons. The original legislation established authority for grants to states for community planning and social services, research and development projects, and personnel training in the field of aging. The law also established the Administration on Aging (AoA) to administer the newly created grant programs and to serve as the federal focal point on matters concerning older persons. (over the age of 65)
  • The Children’s Health Act of 2000 (Pub. L. 106–310, 114 Stat.1101, enacted October 17, 2000), signed by President Clinton on October 17, 2000, was brought into law to conduct a study focusing on children from before conception to 21 years of age.
  • HIV AIDS – There is no cure for HIV, but there is treatment. Without HIV treatment, your immune system can become weak and you can become sick with life-threatening illnesses. This is the most serious stage of HIV infection, called AIDS. Anyone can be infected with HIV, no matter:  Your age, Your sex, Your race or ethnicity, Who you have sex with.

Look, I didn’t ask to have Alzheimer’s Disease, Vascular Dementia, Heart Disease, Type 2 Diabetes, and who knows what I’ll get later on, but I sure as hell know that standing around crying about it sure won’t change anything. I also know there are many individuals (including some of my very close friends) who are worse off than me.

The Disease that we live with, day in and day out, a disease that robs us of our memories from yesterday and last week, a Disease that has no cure and no way to slow the progression (YET), SUCKS! Thank goodness we still have most of our memories from years ago.
What also SUCKS is that we sort of know what our end will look like. We have seen our Loved Ones go before us and at times, I wish, like the majority of folks, I wouldn’t want to know how it all ends. You just don’t want to know some things.

I know a cure or the stop of the progression of Alzheimer’s Disease and other Dementia-Related Illnesses could happen tomorrow, next week, next year or the next decade. It will happen.
Thank goodness, the reauthorization of the Older Americans Act now includes individuals under the age of 65.  All I ask is, that we continue to have the same access to programs and policies that are open to everyone else, regardless of our age.

That’s all I have for now . . .
Until Next Time,
PEACE

 

 

Lions, Tigers, Bears & Covid-19…OH MY!

Hey, have you heard about that COVID-19 thingy? It’s EVERYWHERE in the world, well, almost everywhere. Antarctica is the only continent with no confirmed cases of  #Covid19. The impacts of Covid19 are now being felt at the North Pole for planned aerial surveys and resupply flights have been canceled.

What does this have to do with Dementia Strong? NOTHING, nothing at all . . . or does it?

On any given day, those of us who are Living with a Dementia-Related Illness usually spend a lot of time inside. Sure, we go walking to get exercise, we go to the grocery stores with our loved ones, we go to #Starbucks, we may even take an occasional trip to the Grocery Store if we feel like it, as long as we dress in our Hazmat Suits. But there’s a huge difference between being inside because we feel more secure and less anxious and being “MADE” to stay inside for we don’t know who has or who hasn’t been exposed to someone with the virus.

We can no longer go to our favorite restaurant to have our favorite meal because you can no longer go inside. You can get it to go, but it’s just not the same when you realized you’re eating your favorite meal from a styrofoam container.

Visiting with your friends and family means using #ZOOM or #FaceTime or #Skype or #HouseParty or any other ways we can make video calls. Yes, it’s nice to be able to see their faces, hear them laugh, and find out what’s been going on with them, but the physicality is not there. You can send a virtual hug, but it doesn’t have the same effect when you can’t hug them. You can’t even visit them in a hospital unless you’re wearing a mask and gloves. It’s the little things that are missed the most, especially when we are ordered to follow the rules.

I know I mentioned earlier about going to the grocery. Maureen and I still go about once a week and yes, we follow the arrows on the floor at Publix telling us which way to go, and yes we wear our masks, and yes we bring our wipes and wipe down the baskets, even though we see the employees wiping them down before we do, and yes we follow Social Distancing, but yet, when we get back into the car, we start wiping everywhere. Talk about anxiousness setting in.

Maureen tells me “you know, you don’t have to go. I can do this by myself.” I realize she can but when it’s the only time during that particular day that I can get out of the house, I jump at the chance. I then started to wonder, does she say that because she may want to get out of the house by herself? We are together 24/7. Surprisingly, no one has been harmed during our “Corona Vacation”!

I must say, whether it’s been a day, 6 months or 10+years you have shared your life with someone, when you spend 24/7 with that person(s) for weeks and weeks, you learn A LOT about them. Some things you just don’t want to know. You can become closer and then distant, all in a 5 minute period.

Throw Dementia into the mix, well, that brings it to a whole different level.

I’m not trying to single “US” out but, the law should have stated, “practice social distancing and treat everyone like they have a Dementia-Related Illness” then they would have surely stayed away from one another.

No, I’m not looking for pity, it’s just a fact. Friends don’t usually call unless they are Dementia Friends or are related to Dementia Friends in one way or another.
They don’t visit, because, you know, they may catch it, even though we are NOT CONTAGIOUS!
They’re afraid to speak to us for . . .
– we may not understand what they are saying, or
– we may not be able to respond to the questions they ask, or . . .

Anyways . . . continue your #SocialDistancing, wipe down anything BEFORE you touch it and then wipe your hands AFTER you touch it, wear a MASK, and just be kind to EVERYONE. It’s a very unusual time for ALL OF US so just remember, although you’re wearing a mask out in public, your eyes can still show that you’re smiling!

Y’all Take Care,
Until Next Time . . . PEACE!

Brian