In like a Lion, Out like a Lamb

SPRING HAS SPRUNG HERE!!!!!!

I cannot believe it. It is 73 degrees as I type this here in Anderson, SC. Earlier this week it was breezy and in the 50's. In just a few days it will be back to those temps before it warms again next weekend. I cannot wait until the temps stay stable. I'm ready to get back in the saddle for the Ride To Remember 2019. 

This year the old adage for March, "In like a Lion, Out like a Lamb" has been right on target as far as the weather is concerned. And for the dementia, I can say the same thing.

I mentioned in an earlier blog that I have now been put out of work on permanent disability. Frankly it stinks. I still wanted to work and tried my best to find a way, but by the first of this month is was becoming apparent that I was having trouble doing even the simplest things at work. Dementia was roaring at me, "I've got you now. I'll squash you like a bug." Truthfully I felt that it was faithfully carrying out its mission at the time. My job as an Analyst created a lot of stress and high pressure. I tried to find alternatives to my duties that I could do and still be a viable worker.

In the end my doctor and my bosses both agreed that the time had come.

Fast forward to now. I've been out of work for 2 weeks. My wife says I'm a different man. She says I am able to be more focused and a bit sharper. I will admit that I do feel a bit better too. I'm still a little bit bummed about not working now, but my focus has now turned into protecting what I have left of a brain and body. 

I'm like that lamb in the picture, I know the Lion is still there, but kinda chilling at the moment. I feel like I can lay my head down and rest for a minute, even if I'm still connected to the Lion. I know that connection will always be there unless a cure if found, but it isn't raging, trying to tear me down.

I'm also going to use this time to talk to others about my disease. Opportunities are opening up for me to do as such i.e. Alzheimers Coffee Talk Greenville, Alzheimers State House Day, Congressional Staff/Military Advisors, Local/National Company Annual Meetings just for April.

I know God still has a plan in all of this, and I just hope I can make him proud in what I do.

For now I will keep pushing on through this disease. 

For those of you reading this, please consider making a donation by following the link above. I really want a cure to be found soon so that I can have many, many more years to spend with my wife and friends. 

Until next time, #AlzSux, #EndAlz

 

The Circle of Life - Living and Working with Dementia

The Circle of Life

Well, sometimes it all come around. Styles go out. Styles come back in. Genre's get a revival then fizzle out again as something new comes along.
And then there are jobs that come and go. Mine came and went this week.

The Backstory
4 years ago on my birthday i received a job offer letter in the mail after my interview process, which i quickly accepted. I had worked at TTI the previous year as a temp worker under Phillips Staffing. In my position I interacted on a daily basis with the accounts receivable department. After leaving to try my hand at running my own business, I was hired on in the AR department.


Fast forward to my birthday this year. I'm sitting at the doctors office while she fills out the paperwork to put me on disability because of the Hydrocephalus and Dementia. I could no longer fulfill my duties and the paperwork was completed to start the process of putting me out on "continuous" disability, with the words "lifetime" and "permanent" being interspersed.
We always knew the day would come, but you keep hoping that it is still quite a ways down the road.
Now it is the reality that is staring us in the face.

What do I do with myself now?
This is going to feel kinda weird being out on disability. I still want to be able to do, but my ability to drive has become severely limited. I'm not able to do as much around the house either. Yesterday we went and bought me a used walker for the times when my balance is really bad from the Hydrocephalus. Next week I have an appointment with Social Security to file for SSDI.
It was only 4 years ago that I had gone back to work to be off of SSDI after 21 years. Like that rock song says, "Now here we go again!"

Think Positive
I know God brings things to us when the time is right and I'm trusting that he will bring an exciting new chapter into my life next. A cure would be the best thing, but i'll accept whatever he does give me. I try not to be scared or stressing out and so far i'm doing pretty good at it. There were a lot of tears at work yesterday as I stopped in my department to say goodbye. I'm not going to think of myself as a failure. I kept plowing full steam ahead until I finally could not do it anymore. Even our CFO left a note that he wanted to see me before i left. He thanked me for all i had done and it made me feel good and appreciated. That is a great way to go out!

Here We Go!
Now for what comes next, I don't know. But I'm ready for whatever comes my way. I do hope that the next "circle" lasts a bit longer as 3 years were really quick.

Question for commentors?
Have you witnessed a family member or a friend go through a time when they had to quit working due to their health?
What advice would you give to someone going through this, or to someone watching their loved one/friend go through this? 

So until the next update, just remember #AlzSux #HydroWarrior4Ever #KeepFighting

If you would like to support me and help us find a cure, please visit my Alzheimer's Association Ride To Remember fundraising page and make a donation of any amount. Every bit helps! 

Please Click HERE to Support My Ride To Remember

Thank you for your support!!

There Is Sanity In Cycling!

I love my road bike, and that is a good thing. My wife said I had better love it as I was going to have to live with it for a long time. Well, 3 years later we're still in love. (oh, me and Sheri are too!) 

That is what has gotten me to this point. If my friend at the time had not talked me into trying to ride again I would have missed out on the greatest camaraderie in the world; cycling. 

I was blessed to get to ride in The Ride To Remember last year and I'm excited to say that I'm registered again this year to ride with the Ryobi Cyclepaths.

Last year I was blessed to make so many new friends and I can't wait to see you all again. But I also can't thank the people who do this ride as volunteers for all that they do for us riders. I've never felt so well taken care of and loved than I have those 3 days.

Here is the nice thing. It didn't stop there. I met an incredible lady named Jamie Guay. She heads up a connections group that is comprised of people like me and their spouses/caregivers and we have a regular activity every month, as well as special programs as they become available. She even started a new group on Tuesdays so that I could come. The other group meets on Thursdays and Sheri is running the store so she can't take me. 

I don't drive very much any more. Just around town and not that often.

That is what makes the cycling so special to me. As you start to lose the ability to do the things you've always enjoyed, it can make you feel more isolated and frustrated. I used to go to Greenville and ride on the Swamp Rabbit Trail most Saturdays. Now that is not a possibility. I haven't really found anyone in Anderson to ride with so it keeps me limited. But I'm not going to let that keep me from riding and preparing for RTR 2019. 

I have subscribed to an app called Ride with GPS. $5.99 a month and it will track what I do and how long it took me. It also allows anyone to follow along with where I'm at on the bike. That way if something happens and I don't return, it is easy to locate me.

The biggest thing I know (sounds funny coming from a dementia patient) is that when i'm on my bike pedaling down the road, that is my glory moment. I can revel in the triumphs of the steep hills, the "faster than that dang dog" moments and the smell of the surroundings, except for the farms. For these minutes and or hours I can forget about my condition.

People don't realize that the disease affects more than just the mind. It affects how much you can continue to work, which affects how much you bring home to pay the bills, which affects your quality of life, which affects relationships that are strained because of this disease already.

My wife is my rock, my fortress, my shield. She puts up with a lot yet she worries about me a lot too. Even to the point that she is going to see about being my SAG vehicle for the ride this year. You see, i'm a lot slower than most, averaging about 14 mph, so I tend to get left out on the course by myself. This way I can have someone dedicated to me full time without taking a resource away from the other riders. Kimberly Best and her hubby were really great to keep an eye out for me, even letting me ride with them when I needed it and for that I'm very much grateful. 

So if you pass by me anywhere from Fountain Inn to Mt. Pleasant, throw up your hand and wave and I'll gladly wave back to you. I loved riding with you all last year and I know we're going to have a blast again this year.

And hopefully my sanity gets a boost too! 

If you would like to support me and help us find a cure, please visit my fundraising page and make a donation of any amount. Every bit helps! 

Please Click HERE to Support My Ride To Remember

Thank you for your support!!

I Missed My Plane

I missed my plane

I have been watching a new TV series called Manifest, which is on NBC stations every Monday night at 10 pm. (no, I have no affiliation with any network station or company – this is not a promo).

The main theme of the show is people were on a flight into the United States from the Caribbean and they experience some strong turbulence mid-flight. The cockpit announces that the problem did not show up on radar and therefore they were unprepared for it.

Then they land in the United States, but it’s been 5 ½ years since they disappeared from radar. Only thing is, no one has aged or changed a bit from the time that they left the airport.

One small boy has a terminal illness where no cure is known, but when they land, a treatment is discovered that would not have been available at the time he was on the plane.

I wish I had been on that plane. 5 ½ years from now maybe there will be survivors from Alzheimer’s, Dementia and Hydrocephalus, that latter 2 of which I battle with no cure for either one.

I’m learning new ways to cope with these diseases, but I also keep in the back of my mind the problem that looms ahead if no cure is found. This isn’t a future that I’m happy about.

The main thing I want is my friends, what extremely few I have, to be closer now than ever, and to include me, not exclude me.

I want to continue to ride. I want people who will help me train along the way so that I can do better than last time.

I want to find a way to work on my bucket list. No money and the knowledge that I will have to use up my vacation time every year now while I am out of work because of bedrest and lumbar punctures leaves me with a dim vision at best of this.

I know my wife didn’t sign up for this, but I watch her each day as she helps me without hesitation. I am so proud of her. I don’t want her to have to go through this either.

So when you see someone trying to raise funds, please give. The amount doesn’t have to be that much if we have that many who will give.

So, until I catch my next flight …. #EndAlz #AlzSux #HydroWarrior4Ever

Early Onset Dementia - Part Deux - After the LOOK

OK, so the shock of what you just did or didn't understand wears off. You realize that "Yep, I'm off my rocker again!"

This frustrates me so, then I wind up laughing at it, and often times my wife just rolls her eyes and chuckles. I love my wife so much. She is being my rock through this, keeping me full of hope that a cure will still be found yet. That woman is firmly built on her relationship with God and it shows in all she does.

As I start on this journey I wonder what is the next part that we will face? How soon? What do I need to be doing to prepare myself and my family? As we get older many of us start to think about what we need to do for "end of life" preparations/documentations. At 57 I thought I still had quite a few years before I need to worry about this. NOW, Well ..... the dawning of that time is upon me. Why now you ask? Don't you feel that you still have plenty of life ahead of you? Well YES! Are you saying you're feeling yourself take a turn downhill? Well NO! But for a document to be taken as valid, it has to be done while a person can show they are in their right mind. NOT THEIR LEFT!?! (just kidding).

I downloaded a free copy of some forms that you can fill out yourself, just as what to do medically, i.e. DNR and such. Now that was a wake up call! What do i want to do? How much of a lingering burden do I want to be? Truthfully, I'm not sure yet. So it sits on the computer until I can make a more informed decision.

Next thing I have to deal with .... at what point do I turn over the duties that I now do myself, such as bill paying, social media for our stores FB page, emails, federal/state forms to be filed and so forth. I won't lie. I can be a handful. Just ask my wife. That along with her having to keep the shop going can be quite a task.

AND, I still work. I am an Analyst in the Finance Department for a Fortune 500 company, the largest consumer power tools provider in the world. Yes, I'm a bit of a brainiac, which i'm not so sure is a plus or not. Sometimes this makes it harder on me. I worry that I'm "too aware" of what all is happening to me and around me. I love what I do. Having to problem solve what others have done weeks or months ago on both our side and theirs, then put it together for management to use and/or make a decision based on is exciting, thrilling sometimes.

Finally, I do spend quite a bit of my time watching TV, having fun analyzing what is going on that couldn't be happening in real life. I used to love to go to horror movies to do the same. This is one way that I find my kicks. I also like to do Sudoku, but I am finding that I'm unable to complete many of the harder puzzles found at the back of the magazine.

In the meantime, I will keep on trying to do many of the things I still enjoy. I love music and concerts, antique shopping, and bowling, though with the Hyrdrocephalus that has been cut way back.

So for those of you out there reading this that think you or someone you love may be in the beginning of "old timers" go get a physician and/or neurologist to test you. Start now. There are medicines that are a BIG help. I am on Namenda and I can tell that it is doing a great job to help me. There are other therapies, clinics and drugs out there to make this journey a WHOLE LOT easier on you and yours too. You just have to take that first step.
And Remember, #AlzSux #EndAlz

Let Me Explain The Title

Greetings and Welcome to my Blog.
I'm going to try to do something different. Most people think that anyone who has Dementia/Alzheimer's is incapable of conversation and normal thoughts.
WELL,
I'm not sure about the normal thought process, as I don't think I've been normal for years. 💀 On June 26th I received my 2 diagnoses as a result of tests by my Neurologist. Hearing those words, Dementia and Hydrocephalus sent me and my wife into a tailspin. Both are diseases that you cannot defeat (YET! - They are working on a cure as we speak).
That was a wake-up call for me and my wife. I've spent a lot of years in the "One Day I Mean to" and what ever the task was that I had on my mind. That leads me to the title. While I deal with the d'meant'ia and the other health issues, I am going to work on a bucket list of what I would like to accomplish while I still know what I am trying to accomplish.
Plus I will share a lot of my thoughts along the way of the craziness of this disease and the aftermath that it causes.
If you are battling Early Onset Dementia and would like to talk about your day to day activities, please feel free to comment on here, I would love to read about them.
May God bless us all as we walk down this path together.