I'm feeling great. In fact I feel the best I have in years. No, not having sex. Arrived at Starbucks around 5:45am fully rested after about 3-4 hours of sleep. That sleep estimate is conservative. Insomnia and all dementia's go hand and hand. Studies have proven that. Have tried all the meds, sleeps aids, melatonin, warm milk and even turkey fat. Like everything else with FTD. Ignore it and keep on going.
Change of routine and I feel like a new man. I'm a relentlessy driven asshole who will push himself to the edge of recklessness. Have always been this way. Probably why I've always been successful in business. Though driven, I've alway been wise enough to pull back when necessary. That's until now. FTD has put up an indiscernible wall. Now I'm not sure when I've reached the level of necessary pullback. This insidious invisible disease has me grasping at straws as to when I need to slow down or stop. I no longer have the reasoning or judgement to safely judge when enough's enough.
I'm alone with FTD. I have no caregiver. Don't want one. What I have is wise and caring people around me. Sharon Denny, the director of AFTD has been an indispensable friend the last couple of years. Sharon has taken the brunt of my FTD rants throughout the last couple of years. It's a miracle she hasn't abandoned ship. There is no way without Sharon's help I could've made it this far. She was writing to me that she could tell I was getting scattered by my emails. I took notice. A buddy of mine at Starbucks also told me I should slow down. Lastly a friend of mine from NY Glenn said something. I immediately implemented change and recovered quickly. I've friends and people I trust. Enough where someone will help keep me on the path.
I'm really doing great now. Feel like I've had a vacation. The move and settling in is now done. Did what I had to do dealing with the world, FTD and myself. I'm alone here but each morning I wake up in paradise and it's going to be a great day and guess what, it is.
I'm in the land of diminishing skills and there's always things falling through the cracks. Sometimes I say screw it and those things come back to screw me. One skill set I've lost in the last year is the ability to take care of my own finances. It's gone. This is something I'm going to have to get help with. I don't have a handle on anything. Not a clue. All I know is I've reversed my retroeconomic situation of NYC. Still, I'm on SSD and there's not much wiggle room. I've spoken to friends who've told me what I have isn't much and to be careful.
Somebody offered me frequent flyer tickets for my kids, but forgot who it was. I put a paragraph out in a post a few weeks ago for some help, but got embarrassed and took it down. One of the reasons I left NY was I hate, absolutely hate asking for help. I check my bank account no less than 20 times per day, not sure what's going in or out. Not able to gage whether I'm okay or not. All I can do is be prudent, spend little and try not to drive myself crazy.
It's almost a year since I've seen my kids. Last week I was on the phone with a woman and her kids were in the background. She had to get off to make them dinner or something. When she hung up there was a profound emptiness is my stomach. I miss my kids talking, laughing and being obnoxious. Been a year. Once a year, seeing your children is tough. Sometimes it jumps from a week to weeks to a month when I call my kids. The weird apathy thing. Have been better since in Arizona. When they pop into my mind I force myself to call immediately, even if I don't feel like it. Guess I'm sometimes distant on the phone. They know I love them in my own special way.
Have been wanting to book them tickets for a while now, but can't get it together. Scared to spend the money. Meanwhile the prices keep going up steadily. Finally I pulled the plug and just booked them in a panic. Actually sat in Starbucks with my hand in the air with my index finger raised. I must've had the page with the tickets open at least 30+ times the last few weeks. Finally my Statue of Liberty pose ended with my finger coming down on the return button. I'm happy I did, but it was a chunk. A couple of you out there have helped me and I'm forever grateful. One person sent me a $100 Outback gift certificate for a housewarming gift, but I'm saving it for my kids to come in for winter break.
Whether I'm okay or not, I've no idea. I've no safety net in life. No fallback plan. No Power of Attorney. No nobody. All I can do is keep on keeping on. When I first moved here I was eating at the Chop Shop and had salad almost every day. Those days are over. Now it's about twice a week.
I'm feeling healthier and have lost 31 pounds since leaving New York. Am successfully fighting the FTD Carb crazy weight gain issue. Eat the same thing for lunch 5 days a week. A can of whole beets. 69 cents and healthy.
Wiped out the supermarket yesterday. Of course I went to the checkout counter with the pretty blond. I started unloaded when a guy replaced her. Disappointed, but I'll get over it. Then he disappeared. I saw blondie standing in the next isle. I asked if she or the guy were coming back. She said the light was off and I needed to go to another register. What fucking light? She pointed. I was about to walk out with the cans left on the conveyer belt, but was hungry and needed my one can fix beet lunch. Reloaded, moved, NAFW (not a fucking word, my mantra) and paid the man. Not sure what happened. Guess I got distracted. Never had lunch. Not sure what happened. Not a big deal. Haven't had a home cooked meal in a long while. Not complaining, just thinking out loud. Was hoping to make it to NYC for Thanksgiving, but that won't happen. Guess what, I wake up in Paradise every fucking day with a smile on my face. Fuck you FTD.
Dinner was great. Went to my new quiet hangout Stax and had the $3 happy hour wings. Met Dopey there. She disclosed this and one other were her favorite happy hour places. The other was a full dinner for $20. Didn't tell her it that was out of my league. Dopey asked me if I drank. I was sipping my diet coke. Told her I never drink and drive. In Arizona, I'm always driving so I don't drink anymore. The Police are legends for not fooling around and DUI would finish my life off.
Dopey told me it was okay to drink during the day. The police never pull people over during the day. It was around 5:30pm. She was drinking. Scottsdale PD only pulled people over after 9pm, Dopey expounded. Think she wanted me to drink with her. I wasn't impressed. Told her I never drink that early anyway. Truth is I haven't had a drink in way over a month. Since there's no food but beets at home, makes no sense to have alcohol at home. Can't drink on an empty stomach :-) A few minutes later Dopey was having another drink. She disclosed she wasn't driving. Her license was pulled for DUI. Dopey
"Howard's Brain" is on hold for a little while. Lost my balance and fell in NYC right before the move. Can't hold the camera or even a glass of water. Typing hurts like hell. Still doing a bit on the tripod, but not satisfied. Really don't know when I'll see a doc. Been trying. Just not happening. FTD
Howard
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. Letters with FTD questions are fine:
Howard Glick
7791 East Osborn Rd. apt. 170E
Scottsdale, AZ 85251
Living med free and doctor free in Arizona
* 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
SO glad you booked tickets to be able to see your kids!!!! I saw the post where you asked for specific help to be able to see your kids. Glad to hear you took it down, thought I was losing my mind, I've been reading alllllllll these past posts trying to find where you listed what help you needed. LOL My poor Mom, Susan, she has FTD, so you've probably really thrown her for a loop, lol. Can't do that stuff Howard, I thought I was crazy! So, I have been holding on to a little money, cause I wanted to send it for when your kids came, but couldn't find the post for what kinds of cards you wanted. So can you either repost, or just let me know, please and thank you. Keep up the good work Howard, you are a real inspiration to SO many!
ReplyDeleteHi Heather,
DeleteDidn't hear anything from anyone. Last year people close to 10 people offered to help and I got tickets. It hurts. Took it down. This is the hardest part for me with FTD. I hate begging more than losing my fucking mind.
Howard, why dont you have a POA yet? Get one asap! Make it a Durable POA - but if you wait to late then it wont be legally binding. Make one of those kids POA .. even better make them both POA, Dont forget Health Care Proxy too. Trust me on this one it makes life so much easier for everyone and you can be in control of who does what and what they can and cant do. By the way, I love your blog and read it faithfully!!
ReplyDeleteThanks Angela,
DeleteI do have a medical proxy. My kids are to young to be POA. Have had 3 POA's. Didn't work out. Fired all 3. You want the job? POA with me is a temp position. No pay and lasts and average 3 months with much stress.
Howard
finding the right POA is important. I wish you all the best in finding one, sooner rather than later. Hope your enjoying that warm weather cause its starting to get cold here back in NY. Im jealous!!
DeleteHi Angela,
DeleteI'm on POA break now. Not looking and don't have anyone. Mid 80's, dry with every day filled with sunshine. It's a rough life Charlie Brown :-)
Thanks,
Howard
I too am glad you "pulled the trigger" and bought the tickets so that your kids could visit you in sunny Arizona.
ReplyDeleteJust thinking, you're such an inspiration to all of us FTD'rs and you hate to ask for donations, (as do we all); how about if all 102,345 readers of your blog sent you $1.00 (or even $.50) you could be in good shape for many months to come. Maybe it's just my FTD talking, but I'd be interested in seeing if anyone else sees any merit to this thought
RCW
that is a great idea--why cant we do the dollar a person thing?
DeleteHoward,
ReplyDeleteI think Ron has an awesome idea. You truly are an inspiration to many. I say let's raise the donation to $2 from each person. I'm in and ready to send!
Kathy :)
Ron and Kathy,
DeleteIt's a great idea. My friend had me try it already and it failed miserably. Seems like it was to much work for people to do. i deeply appreciate the thoughts. Thanks so much.
Howard