Moving my blog to https://alzguyblog.wordpress.com/

Hi! Moving the blog to Wordpress, it's a better platform. See you there.

Today, 12/7/2015

Another day I had a hard time getting outta bed. Foggy all day and when I did get up, the twins had me off and running. They were real busy today.
They finally took a nap, and so did I!
That's all I have today.

Leaving Home

The house is on the market.
I'm pretty sure that we'll get an offer soon, other properties around here are being scooped up, rehabbed, and sold as condos.
Every trash day now we've been filling up the sidewalk with stuff we should've thrown out years ago.
Refreshing.
Patty and I have been looking into small houses in nice lower South Shore towns or good mobile homes in good parks. Donny and Celeste are figuring out what they're gonna do.
Big changes.

My brain dictates my posts.

I've been kinda tired, my meds and depression do that to me. Some days I can't even get outa bed, and because of this I've been having some difficulty posting. I've started a post and stopped, then started it again, then stopped. Blaa.
Obviously I'm posting now, thanks to Brian Dolan for kicking my butt about it.
Nice to know that people care 😊.






I can still play guitar. We went to the open mic at Tinkers Son tonight with two of our nephews, played a few tunes, had some beer, saw people we love and stayed out late! Dirty stay-out-all-nighters!


So now it's time to say goodnight. Goodnight, sleep tight.

Nana went home Thursday night.

She died in her own home, her daughters and grandson Michael were around her, singing and loving her.






So how DO you say goodbye?
 






'Well, I'm gonna get out of bed every morning... breathe in and out all day long. Then, after a while I won't have to remind myself to get out of bed every morning and breathe in and out... and, then after a while, I won't have to think about how I had it great and perfect for a while.'
- Sleepless in Seattle






So we go on.
We figure out what we do next. We get back into our own things and responsibilities and the other people that love us and need us.
And when you can, you remember your times together.






















http://www.lydonchapelforfunerals.com/notices/Virginia-White

12:30am November Sixth

Wide awake.
Laying on the sofa, listening to nana's ventilator through the floor. Patty's asleep, Donny and his family are at his in-law's, Colin is working, and I'm alone. Another Alzheimer's sleepless night.


Patty's sisters are all here, loving on nana, waiting. My nephew, Michael, arrived this afternoon from Memphis. He was nana's first grandchild and has a very special bond with her. Glad he's here.


Saying goodbye.


My father died when I was seventeen. He had a cancerous tumor in his brain and didn't wakeup after the surgery. I understand the pain of loosing a parent. It changed my life.


Even knowing that we are ALL gonna die, and that death is part of life, we still are... afraid of it. I'M afraid of it. My neurologist told me straight, I've got less than ten years. Ten years.


So what is there to do? I will love my wife like I'm gonna die tomorrow.
I'm gonna love my family like I'm gonna die tomorrow.
I'm gonna love my grandsons like I'm gonna die tomorrow.


I'm gonna love... like I am going to die tomorrow.


I don't know if anybody reads my posts. Not sure if I care, either. I just find this helpful to me. It's like screaming into the wind.

This week Nana comes home to die.

We've moved some of her furniture down to the basement so we can get the new hospital bed into the dinning room.


We've cleaned and prepared for her last few days with us. We'll be caring for her at home until she leaves us. It won't be long, she's ready. Hopefully her oldest daughter will get here before she leaves us.


I've had a great relationship with Virginia over all these years. She and Clayton bought this two family house so we could all look after each other. My sons loved having Nana and Grampy as part of their lives, they had a wonderful relationship.


I miss Clayton, and I'm gonna miss Virginia something awful.

53 and counting and the up's and downs of life.

Last night we went to Tinkers Son Tavern again, this time to celebrate my upcoming fifty-third birthday. Lots of great friends and family showed up, and we ate, drank, and enjoyed people that we love.


It was open mic night so Patty, Dave and I played a set. My friend Scotty asked me to play with him during his set, and my silly sons dragged me up for another (drunken) set 🎸. What a great time we had!
I don't think I had to buy my own beer all night.




So Patty's mum is not doing well. She's been in Milton Hospital for about a week and we know we'll be saying goodbye to Virginia very soon. She's eighty-eightish and has been ready to go home to be with her husband Clayton again.




It's a funny thing, hoping that someone you love will die soon.

Blue Hills with Grandpa Bill and the twins

Celeste's father Bill is a good friend. I'm blessed to have inlaws that are normal, decent, loving people.
Bill came over yesterday and he and I took our grandsons for a hike in the Blue Hills.

  

Toasty Jam at Tinker's Son

A few nights ago we went to Tinkers Son in Norwell. We've been going there for a while but just recently started playing at the open mic. What a great time we had! Brought my Gretsch style Jay Turser hollow body, and it sang! Patty played the chords on Jackson's sweet guitar and sang her heart out while I played around the feel.




For a while now I haven't been able to remember chords, modes, and progressions, things that I used to teach when I had students. I haven't really played guitar for quite a while either, had no desire to.
It's very easy to get depressed when you have a terminal illness and you have the eye opening realization that your days are numbered. But that's true for all of us! No one gets out alive:


'Live life, live life like you're gonna die
 Because you're gonna
 I hate to be the bearer of bad news
 But you're gonna die
Maybe not today or even next year
 But before you know it you'll be saying
 "Is this all there was?
 What was all the fuss? Why did I bother?" '


-William Shatner


So I don't want to be depressed. I've never been depressed guy. Not my thing.


I am so enjoying playing again, I know that it's good for my brain and my mood. And now I'm not thinking about modes and scales, just feeling, deciding what tension I want to feel, what story I want to tell.



When we finished our set the owner, Brian, who was watching and gave us a round of our drinks. Nice man, great place.


- D

At the park.

I took the Twins down to the playground yesterday. It was so very cold, we didn't last very long! Normally we'd hit the Clam Box for lunch, but it was just so cold that we ran home!

When the parents are working, and they both work alot, I'm generally the primary caregiver, unless I'm having a bad day. I love being with the boys and we do have fun!

Having things to do helps me.

I try to keep busy, and the little creatures keep me very busy! Eating, running, yelling at papa, jumping, climbing on papa, changing diapers, eating more, wrecking my house, bouncing, hugging, baths, more running...

Very busy.

If I didn't have them I think that I would be quite morose. Bummed out.

Another Long Night

Again a sleepless night. I was on the couch wide awake, when my Colin came home around three. He sat with me and we talked for a while. Finally slept in the wee hours of the morning and had some weird vivid dreams.


Side effects of the drug I'm on, Aricept (Donepezil), include: Nausea, vomiting, diarrhea, lost of appetite, dizziness, drowsiness, weakness, TROUBLE SLEEPING, shakiness, foot cramps, depression, etc.
I have more than half of them.


This afternoon I put the twins in the doublewide stroller, and we walked down the beach to the park. We love the park! It was cold so we didn't stay very long, but it was nice and they fell asleep five minutes' after we left.


It's a little after eight, and I need some sleep.


Goodnight.

I'm a 52 year old man from Boston. I've worked since I was 14, and my last job was Senior Integrator for Konica Minolta, a copier/printer company. I was there for 16 years. I've been married to my wife for almost 30 years, 2 sons, a daughter-in-love, and twin grandsons. This spring, after several weird incidents, I was diagnosed with Early Onset Dementia, most likely Alzheimers. I'm gonna try to document my journey through dementia on this blog. Maybe it can be a help to others going through the same thing. Please forgive me if I post something twice, sometimes I forget. - don

'To sleep: perchance to dream: ay, there's the rub'

Could not sleep well last night, so today was a wash. It's evening now, still in my pajamas, 6:42pm and it's dark as pitch. Here comes Winter.
I do like winter sometimes. I enjoy shoveling the driveway, stairs and sidewalk. Keeps me busy and helps me feel like I'm still... I don't know, purposeful, maybe.

Younger-Onset Alzheimer's & Dementia


Alzheimer's is not just a disease of old age. Younger-onset (also known as early-onset) Alzheimer's affects people younger than age 65. Nearly 4 percent of the more than 5 million Americans with Alzheimer's have younger-onset.



Who gets younger-onset Alzheimer's?


Many people with younger-onset are in their 40s and 50s. They have families, careers or are even caregivers themselves. In the United States, it is estimated that more than 200,000 people have younger-onset.

Diagnosing younger-onset Alzheimer's:


If you have younger-onset Alzheimer's, you are not alone. The Alzheimer's Association can provide information, support and referrals.
Learn more:
Find your local chapter


Getting an accurate diagnosis of younger-onset Alzheimer's can be a frustrating process. Symptoms may be incorrectly attributed to stress or there may be conflicting diagnoses from different health care professionals. People who have younger-onset Alzheimer's may be in any stage of dementia – early, middle or late stage. The disease affects each person differently and symptoms will vary.
•Have a comprehensive medical evaluation with a doctor who specializes in Alzheimer's disease. Getting a diagnosis involves a medical exam and possibly cognitive tests, a neurological exam and/or brain imaging.

•Write down symptoms of memory loss or other cognitive difficulties.

•Keep in mind that there is no one test that confirms Alzheimer's disease. A diagnosis is only made after a comprehensive medical evaluation.

Learn more:
Steps to Diagnosis

Causes of Early Onset Including Genetics


Doctors don't know why most cases of early onset Alzheimer's appear at such a young age. But in a few hundred families worldwide, scientists have pinpointed several rare genes that directly cause Alzheimer's. People who inherit these rare genes tend to develop symptoms in their 30s, 40s and 50s. When Alzheimer's disease is caused by deterministic genes, it is called "familial Alzheimer's disease," and many family members in multiple generations are affected.

Feet.

One of the side effects of my medication, Donepazil, is wicked cramping in my foot. Not very pleasant.


 

Sometimes I'm in this place. I'll go several days without a shower and Patty makes me take one. The day's flow together and I don't realize that it's been three days.

How to coax the Alzheimer's patient to shower, Change Clothes, and maybe brush their teeth. … http://t.co/UemWA35LB2 http://t.co/7MUI7BPOFy

The Seven Stages Of Alzheimer's

The Stages of Alz. My doctor said I'm stage 2, but Patty thinks I'm 3 or 4, based upon my behaviors. Whatevah.


https://m.facebook.com/l.php?u=https%3A%2F%2Ft.co%2FTJq4lVJRkq&h=qAQG6J_0k&enc=AZNgM9tBNlk7iCGG2p7txxP3iS43w8CWBnO2iv4FrvEYBVxRkl05i_eTuQxfoENbvcQ&s=1

Good Day, Nice Evening

Nashoba Valley Winery and The Twins

 Love this place, brought The Twins yesterday! Nice getting out with the boys on such a lovely fall day. They ate apples right off the ground, climbed trees, laughed, and ran all over the hills. I had a nice Grappa at the tasting, and a Sothern Comfort style whiskey infused with maple syrup called Northern Comfort. (I shouldn't be drinking that much, but couldn't help it! So good.)
In the evening we went to the open mic at Tinker's Son in Norwell and played a few songs, which is GOOD for my brain!

I know this is humdrum stuff, but I'm new to blogging.

Blaa

Not a great day, angry today without reason for it. This happens often now. I'm not mad at anybody, just mad, and on top of that we took Patty's 88 year old mum to the hospital.
Talk with you tomorrow.


    

Today 10/4/15

 Yesterday I decided to create this blog. Not sure why, exactly. Just shouting into the wind, I guess.  

 As I started to write this, my William was climbing on my back as he and Donald were watching an episode of 'Shawn the Sheep' in Papa's room. They are the sunshine in my life, they help me focus and give me a purpose. Having a purpose and things to do means I'm still a productive part of my family.

 I had to stop working in the beginning of this year. I had been a 'Senior Digital Specialist' with Konica Minolta for 16 years. Liked the job, my coworkers, and my customers. The last couple of years, though, I had trouble diagnosing issues, and had to get other techs involved. The last straw was a larger machine that I saw needed a circuit board, motors, and a firmware flash. Ordered what I needed went back to fix it, couldn't figure out how to put in back together. Had to have another tech come help me get it done.

 After that I went to my superiors and shortly after left my job and went on disability.
 
 The medication that I'm on is called Aricept or Donepezil, 5mg twice a day. My wife Patty can immediately tell when I forget to take it as I get very foggy and can't complete a full thought, sometimes to the point of stuttering. I also daily take B12 by mouth and in a monthly shot and also a few other supplements.

 As and interesting aside, Patty has noticed that I get VERY hazy and in a funk when there is a full moon. I was so very hazy and couldn't sleep well  at all during the Blood Moon, up all that night. We found out that alz customers get weirder during a full moon.

 Ok it's late
Goodnight

Maybe a way to express myself as i succumb to early onset alzheimer's disease.

Maybe a way to express myself as i succumb to early onset alzheimer's disease.