Another holiday season is rolling around and I'm so thankful to be here on planet earth. The minutia in my life, I left back in New York City. I'm very sick, but I don't care. I'm living life and doing great. I'm happy about what I have in life right now, no longer mourning what I lost. Life flows and you can be a moving river or a stagnant algae filled pond, where life and air is sucked out and your choked to death. 7 days a week starts out with a chuckle, as I can never organize getting out the door smoothly. Sometimes I have to turn around 3 times to get my Alice bag. My good friend Alice in NYC taught me to carry a small bag of veggies to Sbux every day. This Alice bag is partially diluted, but it usually has carrots, pea pods, broccoli and string beans.
Every morning I have to find my backpack from the day before. Then it's like heaven. My 5 minute bike ride to Starbucks where I have my stump of the day. My Sbux buddy stumps me every day. Hard to tell if he's purposely fucking with me or happenstance. A bit of both. I'm thankful he keeps me on my toes. He asked me yesterday if the NY Jets won the day before. No, they got killed. Who did they play? Don't remember, have no idea. I laughed. Welcome to Howard's world. My buddy gets me every day.
Probably the thing I miss about NYC is the relationships I had with people. Challenging each other intellectually. FTD was just a weakness to exploit and rip me a new asshole. Try to get anything past Alice or Stephen Athineous. You'll get your head handed to you. Had to be on your toes 24 hours a day. These were also exceptional people who with there actions and the way they lived there life did nothing but make this planet a better place to live in.
Lately I've been off a bit because Starbucks has gone into Christmas mode. What that means is they changed all the seating around to accommodate there retail sales. Each morning I walk in not sure where to sit. Sort of like playing musical chairs with a blind person. Right now I'm in my FTD power chair. Uncomfortable, take no shit and just get your fucking work done chair.
Funny, to me FTD is all about luck, routine and adapting to change. A sense of humor helps.
Luck in where and how fast the FTD progression is. My heart goes out to patient and caregiver alike where of all progressions. No one has a moratorium on pain in FTD world. Doesn't matter how much time I have left. What matters is the quality of life. Howard's world consists of making a better quality of life for me and those in my world. My antidepressant is fighting FTD symptoms which is no longer a battle, but just a part of me. Was on the phone with an FTD'er at 6am this morning and told the person I had to hang up and get out the door or I may never leave the apartment. There was immediate recognition and I was out the door.
I live in the land of the diminishing mind. I'm rewired and dealing with it. It does get rough and confusing when my mind get muddled and the wires cross. I say and do things that come from a person with a sick mind. Instead of faltering, I stick to my routine and don't deviate. Won't get stuck in the quicksand of my brain and dragged away by FTD's number one enemy. That pesky parasite we call depression is out there, but I'm not buying into it. I'm not fragile and will not falter.
Getting set in a routine is extremely difficult, but what happens when that routine needs to change. Have been struggling to get my book going. Just can't seem to get it fit in. Tried to slam book writing into my routine, but that hasn't worked. Routine change has to be consistent and gradual. My morning is Starbucks, but I'm gradually shifting the rest of the day and afternoon. It is working. Fooled myself into thinking I would have more afternoon energy since I've lost 40 pounds, but that's a fools dream. I have FTD and need to rest a bit around noon. I'm now writing more and more for my book. Have eased off the pressure on myself and it's starting to flow.
The Yin - Sat next to an 89 yr. old WWII vet. He served in San Francisco protecting the Bay area from Japanese invasion. I was a veteran of the Israeli army and there's usually a camaraderie amongst vets. He ordered food to go and we chatted. Richard outlived his wife and kids. It was sad, but he kept pushing at living life leaving his Assisted Living, driving and going to restaurants. When his togo food came I grabbed the bag and walked him out to his car with it. We talked at his car and he mentioned he might not remember me next time we meet, so I should forgive him. He didn't realize we were on the same team of diminishing brain cells. When I went back in to "Uncle Sals" I received accolades from many at the bar for helping him. Was sort of shocked, thanked them but said it doesn't bare well for our society that we're so devoid of manners. We should naturally be helping our elders and be criticizing those who aren't getting off there lazy asses with the little effort it takes. Took me about 20 seconds to go from hero to asshole. Ask me if I give a shit?
The Yang - Was at Costco and was loading my car with my few items and saying goodbye to a senior citizen woman who I befriended in the store and happened to be in the car next to me. Next thing a nasty, vile elderly lady in her mid-eighties told me to move my car with the nastiest tone. I don't even remember returning my FTD gesture to her with equal passion. As I opened the car door I turned to face an extremely hostile, 6'2"+ twenty something year old. Of course it escalated….. The chapter is called Vile Lady in my book. I was conflicted to post the Vile Lady incident here on my blog. Of course it ended like all my FTD altercations with end being no one hurt, but a better insight of FTD revealed. This really showed me how apathy has entered my life. There are so many wonderful and horrible pieces to my FTD puzzle. Hopefully my book will give a better understanding of FTD and help those with any type of dementia, live a better quality life.
Actually pretty excited about my book which is cruising along. I've never taken a righting course, so hopefully I'm heading in the write direction. In "I'm Aware That I'm Not Aware" you will meet some of the best people humanity has to offer, as well as the lowest scum on the planet earth.
I've no publisher, nor editor. Laughing here. A good friend in NYC might be able to help. Any ideas or help from out there would be welcome. email@example.com
This just like when I first started my blog. Me and the keyboard, love it. Grassroots baby. When I finish it, it will be published. I'll do it if need be. Have decided to buy a copy myself so I know at least one will be sold. This will not be a tragic or depressing book. This book will be about how to live life with dementia. Everyone deserves a happy, purposeful in there life for whatever time we have left.
One of my main motivations is to make money so I can see my kids more often. I will see my kids for winter break in December. That's twice in 2 years. I really would like to see them more than once a year. Instead of complaining I'm doing what I can to try and make that happen.
***** Need help*****AFTD was kind enough to send me 1,000's of my emails to them in the last couple of years on a flash drive. This is my daily and nightly records of life with FTD. Problem is I can't figure out how to open a new Outlook account to access them. I've a Mac and there in Microsoft language. If anyone has Microsoft Outlook experience and can help me install and open the emails, it would be deeply appreciated. I've spent hours and hours unsuccessfully trying to accomplish this. It's probably as easy as me missing to check off one box. firstname.lastname@example.org
It's taken me many years to learn how to handle holiday situations and I've certain strategies which now work.
Whenever I go somewhere I need a "quiet escape room". Before you leave for your holiday trip, arrange a room for you or your loved one can go to, to take a break. Better than leaving in the middle of Turkey dinner. Usually an hour or two is all I can take of all the noise, smiles, overstimulation and holiday cheer before I start unraveling. I start heading towards a negative place with inappropriate remarks and behaviors that I'm unaware of coming out. Rather than force whoever I went with to leave and be a total party pooper, I always make sure there's a quiet room I can escape to and lay down for however long it takes. I used to meditate, but that stopped some time ago. People know I have FTD and it's never a problem finding a safe room. I'm happy to be around friends and it doesn't matter if I miss the meal, event or whatever. I might fall asleep or just lay there quietly.
If you have FTD and can no longer cook or do everything you used to do it's okay. Do not beat yourself up or try desperately to do something you can't successfully do. Accept you can't do what you used to do and find something else to do. We all want to feel useful and a part of something. Whether it's walking the dog or taking the dishes off the table, there will be a way to contribute. We have a tendency to beat ourselves up. It's the disease, not us. Be useful and don't mourn about what you can't do, find something you can do.
Carry FTD Awareness cards which you can print off the AFTD website for free.