Tuesday, November 19, 2013

FTD Holiday Survival Guide

* I run a private FTD Patient Support Group on Facebook. It is open to those with a firm FTD diagnosis. The support group is a place where those with FTD can gather in a positive environment and realize there not alone. It's also a source of accurate information which is rare in the quick changing world of FTD. The director of AFTD, Sharon Denny is a permanent guest member. AFTD has been kind enough to open up there medical board to answer member questions. Please email me at howardglickftd@gmail.com to join.
Howard

Walrus Alert - Left NYC weighing 246 pounds. Now at 206 pounds. When I left NYC I was busting out of my size 38 Levis, but refused to buy 40's. Would rather walk naked than buy 40's. Now I just bought 34's at Costco. Am now on the last hole on my belt. Hey, good news is when I die they won't have to slice my death suit open in the back for me to fit into it. Should fit just fine. Whew, at least won't have to die uneasy.
                           
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. 

There's yin and yang with FTD.
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. howardjglick@gmail.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. howardjglick@gmail.com



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.


I used to just run off if possible or make make some peoples lives miserable. No more, now I head to the quiet escape room and maybe I have some time left to hang out and really enjoy myself. No matter where I go now, there's always an escape plan. I do much better at planned events. 

As far as helping cooking and preparing. If I know in advance, I can work on preparing something, but even that has it's challenges. At Thanksgiving I was asked to bring ice and dinner rolls. Instead I offered to make salad. I was told to make salad for just 8-10 people. I made it for at least 30+. It blew my budget and I wound up giving much of it away. Next year I'll bring the ice. I just have to give up things I used to do and change my way of life to coexist both with FTD and the world around me. 

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.

When you have a progressive disease like  FTD, things are going to keep changing. Expect the unexpected from yourself. I am lowering the expectations of myself and letting people know to expect less of me. That's extremely difficult  constantly giving up cooking, driving, helping with kids etc. for those of us aware with FTD. If we don't give in and screw up, we usually don't care and that frustrates and makes angry the people around us. If your a caregiver, you need to realize if you get one good hour at a holiday situation, that's a good thing. Take and appreciate that. Don't dwell over years past. Enjoy the moment and wreck your normal brain over what no one can control.

Traveling with FTD for me is easy now. My Mantra NAFW - Not a Fucking Word has saved me many a time. I no longer say a word at airport security, hotels etc. After 120 flights a year and over a million miles, I'm on cruise control when I travel. It's extremely easy to get out of control with FTD. One wrong question and we're in someones face. Airports and hotels are perfect places for nonsensical questions that get a normal person crazy, never mind an FTD'er. My advice to caregivers. Drill NAFW into your loved ones head long before they travel. NAFW means ignore everything and just comply, now matter how stupid the person is in front of you.

Carry FTD Awareness cards which you can print off the AFTD website for free.

Just try and enjoy the holidays for what they are now and don't push yourself, caregiver or patient to make it like past years. A couple of great hours is better than despair. Make the best of every moment.

Have a wonderful Thanksgiving everyone.


Thank you to those that have sent me letters, gift cards, Starbucks, cash etc. They are deeply appreciated. For those that want to help there is a yellow donation button on top of the page or my address below with gift cards, cash. Got my kids tickets to visit me but could use some help so I can do things with them while there here:

Howard Glick
7791 East Osborn Rd. apt. 170E
Scottsdale, AZ 85251

Howard



8 comments:

  1. Wonderful advice Howard!!! So excited that you are finding time to work on your book. I am pretty certain you will sell WAY more than just the one copy. I can say for sure my Mom and I both will buy a copy, so rest your mind knowing you will have a minimum of 3 sales! lol If we had the money, my Mom and I would fly you here for Thanksgiving. I hope you have a great holiday and know we will be thinking of you! Heather

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    1. Hi Heather,
      Thanks. Have started, but I really don't have the book writing jets on yet.
      Have a wonderful Thanksgiving.

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  2. Thanks Howard. As a Caregiver, the "escape plan", NOW makes perfect sense.
    Your no nonsense approach is fresh. And welcome. We need tips to make it through the Holidays. Makes it much easier for our Children, Grandchildren, And My "FTDer".
    Blessings. And our Thanks to you for Blogging. During this Giving Thanks Holiday.

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    1. Glad it helped. Have a wonderful Thanksgiving.
      Howard

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  3. Howard, you have already sold another book. To me! I will be patient and wait for it to be born. But I will be at the front of the line to purchase it. I love the way you write. Thank you for all of your help during the changes my family is going through. You are an angel.

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    1. Very sweet of you. Glad my working is helping your family.
      Howard

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  4. Thanks Howard! An escape/quiet room is exactly what my Mom needs. I am planning that now for the holidays as we have a large extended family. And sign me up for your book. I started journaling in hopes to writing a book someday but your candidness and realistic approach will sell far more!

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    1. Hey Ashley,
      Make a deal with you. You buy a copy of mine and I'll buy one of yours :-)
      H

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