Monday, June 11, 2012

I'm Aware I Need Awareness Cards

(Forbes FTD series patient profile at the end of article) 
Brandt Henderson

Was with my friend Steve at Costco yesterday and he asked me to give him some of those FTD awareness cards. This was a bit of a shock, but not surprising. FTD awareness cards or “Get out of Trouble Free” cards are available for both patients and people who are in the company of FTD’ers. I’ve always prided myself on carrying the cards and not using them.


In fact, I’ve only handed one out once. That was at Staples after berating a cashier for giving me what seemed to be a foot long receipt for a rebate on a ream of paper. The $2 rebate which made a $5 ream of paper $3, was not instantly given at the register. You needed to mail the receipt to corporate with all sorts of information and spend a 45-cent in doing so. Of course they bank on people not sending in for the rebate. I FTD’ed the cashier. Under normal circumstances I would’ve told her to take the ream and Staple it to their “Office Products” butt. Instead I reamed her out about the deceptive rebate advertising, the waste of paper with the foot long receipt, as well as the envelope being sent by me to get the rebate and all they paper being used to send me the $2 check back.

She was upset, so first the first time ever I reached in my wallet and pulled out one of my FTD “get out of trouble free” cards. She looked at it, rolled her eyes and slid it back to me.

Of course the Staples marketing sleaze bags won the battle. I never mailed in the receipt for the rebate. I’m sure they count on that. They will lose the war. I now ignore their advertised specials and shop at Office Depot, or any other office supply store and am no longer be a loyal Staples customer.

I’ve had a few doozies lately. Someone cut in front of me with a car. In most cities the car would’ve stopped, but this is NY so they sped up to make sure I wouldn’t walk in front of it. I had an instant aggressive reaction and spit at the car. This is something I never would’ve done in the past. It’s outside my nature.  Of course as FTD luck would have it, the drivers’ side window was open and the driver got nailed in the face. It just sort of happened. Turned out it was a woman and she was shocked.  Didn’t even faze me. Later it hit me and I was in a bit of shock to say the least. I rarely left the apartment for the next few days.

Seems I’m slowly becoming more “in your face” reactionary aggressive.

Though these incidents worry me, they’re not the norm. I was at a restaurant with a friend Friday night. I told the young waitress how beautiful her moon face was and asked if she was Native American. She told me she was Indian from Honduras.  She told me she was light skinned which was unusual for Honduras. They were mostly very dark. Ah, ha. I found my opening and went into an FTD rant. I told her that since she was light skinned her great, great, great, great grandmother was probably a beautiful Indian woman, who was raped in a village that was pillaged by Christopher Columbus’s New World plunderers. She was now a mutt with a beautiful mixture. We all laughed, had a good time with a free round of wine and beer.

Anyway, these things happen and I start thinking about the future and possibly chemicals or medicines to calm the aggression. The thought of going on those meds so I can be a happy, flatlined zombie smiling douchebag rattles me.  It’s always nice to have a good friend around like Sheila who tells me I need to stay the way I am. It’s easy to listen to the pill pushers.

I’d rather keep the edge and be the apathetic FTD asshole that lovingly raids and breaks up caregiver pity parties by offering to play a violin, while letting them know at least there not slowly dying of FTD. 

As someone with FTD, I demand nothing less than caregivers make the most of life when their FTD’er is gone. That’s their obligation to the one they love, because he or she wants that for them with all their heart and soul. Nothing less is acceptable. I have the same attitude with functioning FTD’ers that they need to live l life as well as they can with purpose and happiness for as long as they can.

(New Forbes FTD series patient profile article) 
Brandt Henderson


Wednesday, June 6, 2012

FTD and Apathy

(Forbes FTD series patient profile at the end of article) 
Joanne Douglas

Well I’m back at McBucks ‘181’. I was contacted by some of the other dissidents and we agreed to have ‘reunion Tuesdays’. I missed the staff of McBucks and the cast of characters that hangs out there. It’ll be nice to see everyone for a couple of hours before my support group, ‘Memory Club”.

It’s always talked about how people suffering from FTD are apathetic or non-caring because of brain damaged sustained. It’s true and is one of the symptoms I’m constantly fighting. It’s organic, so I don’t know how long and how successful I’ll be fighting to care.

Alzheimer’s and FTD patients suffer that same eerie feeling of normalcy; yet knowing we’re off.  If you’re familiar with peoples in FTD world, you constantly hear us say, “we’re fine and nothings wrong ”. We know our thought process is off, but can’t tell exactly what because we feel fine. When you have a cold you feel the symptoms. Running nose, fever, sneezing and a cough.

With Alzheimer’s, patients realize there’s something wrong with there memory. With FTD, many of us realize our thought process is awry and behavior is off. Take that and combine it with apathy and you couldn’t find a better combination on any Chinese menu. What it means is we do what we feel like doing, say what we want and couldn’t care less about the ramifications. Each person with FTD is a totally different case. Some get aggressive or violent. Others just say or do irrational or goofy things. Medications are usually necessary sooner or later to help manage the symptoms and try and maintain a sense of baance. All of us are stuck in this weird parallel universe. There’s nothing like being aware you’re out of control, yet helpless to do anything about it. Most aren't even aware at all that there's anything wrong, but some of us are aware that we're not aware.

Our thinking is off and we become apathetic. What a combination. How do I handle being apathetic? I bust my butt, like with everything else. Sometimes I’m successful and sometimes I’m not. It would be very easy to talk about myself and not think about or care for anyone else. If you ask anyone who knows me, they would tell at times it’s all about Howard.

Even though the world now revolves only around me; I do have a need to be a part of it. There are people I love and I don’t want to be more isolated than I am or hurt them. While in a conversation I really need to put a lot of energy in making sure it goes both ways. I now fight myself in every conversation to ask about the other person and to have the conversation go to both ways. Even if I'm engaged in a conversation of little or no interest to me, I still fight and make it a habit of forcing myself to care.

I actually do care, but have to force myself to care and show it. Each time I send an email of text, I force myself to go over it before I send it to make sure I ask about the other person or answer that person’s questions. When I’m with someone I know, I’m acutely aware and constantly reminding myself to ask about them. The longer the conversation, the more apt I am to start losing interest in them or the conversation. It’s exhausting trying to keep engaged.

When in a conversation with someone I don’t know or aren’t interested in, I can blow them off in a heartbeat and couldn’t care less. Rudeness or inappropriate remarks are sometimes realized later if at all.

I’m Seattle bound June 16th-22nd for my daughters HS graduation. Haven’t seen my kids for a while and can’t wait.  I deeply appreciate the generosity of my good friend Tamara and my mother that is enabling me to go on this trip.

While in Seattle I will have some free time so if there’s anyone out there that knows me from my blog and would like to get together for coffee or a bite, let me know. It would be fun.

(Forbes FTD series patient profile article) 

Friday, June 1, 2012

Help has Arrived & Forbes FTD Professor Interview

(New Forbes FTD series patient profile at the end of article) 
Joanne Douglas

Many people have asked me about my long term planning. It seems that’s coming together. Recently I’ve reconnected with an old friend who I haven’t had contact with since the 80’s. Glenn, together with Marc is helping me pulling everything together such as wills, power or attorney, trusts etc. There are so many things I can’t grasp. I can trust Glenn and Marc. 

Trust means so much to someone with FTD. 

You literally put your life in someone else’s hands. A couple of years ago I stupidly let a questionable relative into my life when I was diagnosed with FTD. I was warned by people that knew this individual. He turned my life into a nightmare. I later found out he has a horrible criminal history and what he did to me, he’s been arrested for multiple times in the past. There’s no lower scum in life than someone that takes advantage of someone disabled. The NYC police have taken this seriously enough to get involved. Subpoenaed information now backs up my version of what occurred.
Updates: Starbuck’s and Blimping out
Blimping out:
I want to thank everyone for all their concern and helpful comments on my “walrus-ing” issues. Much of many of my issues are due to decline in my executive functions, meaning I can’t put things together to make decisions. Yes, even basic decisions such as meals become confusing, stifling events. One person currently living in Istanbul, Turkey researched and directed me to an organization here in NYC that helps people that can’t properly shop and cook meals due to illness. I want to thank that global caregiver and hopefully one day we will share some Turkish coffee.
The, “God’s Love We Deliver” charity has been a dream to deal with. As with anything these days there’s a myriad of paperwork and interview process. I downloaded the 4 sets of forms that needed to be filled out. Social Worker, Doctor, HIPPA, and personal info. Riverstone “Memory Club” Milagros and Carmen helped me with the paperwork. I phone interviewed yesterday with Bernadine from GLWD and on Monday they start delivery. I actually spoke with Bernadine about 4-5 times in the last couple of days, driving her crazy as only an FTD’er can. She took it all in stride and was extremely nice and helpful. In this era of cold, unhelpful social services she was an absolute delight. GLWE will be supplying me with lunch and dinner Monday – Friday with deliveries on Monday and Wednesday. The only caveat being on need to be home for delivery, which is between 8:30am and 4:30pm. I’m still not sure why the whole universe isn’t wrapped around me, but I’m extremely grateful for the help.
I’m hoping this charitable service will enable me to be more productive with my time and that additional time can be used to help others. It’s impossible to describe how difficult life is when you spend so much valuable time in confusion because you can’t decide how or what to eat.
The Universe is looking out for me because ‘God’s Love We Deliver’ is starting 2 weeks before my Food Stamps get cancelled. There was no way I could get through and respond to the 26-page document they sent me. NYC Dept. of Health and Welfare requested everything but my used toe nail clippings. On top of that I need a 2 hour hearing to determine whether I can be recertified for 73 cents a day or $19 a month.
Starbucks: Since I wrote my Starbucks blog and a many of the regulars scattered from McBucks ‘181’ a few things have happened. There has been another article in Forbes about Starbucks changing its philosophy as well as much talk on social media.

Last week I was in Starbucks ‘145’ and I saw someone eating the most pathetic looking breakfast in the world. A couple of eggs on a small plain round white plate with flat bacon across the top. Next to it was plastic utensils wrapped in clear plastic. It looked so institutional. I took a picture of this and mentioned to the person that this was just about the most unappetizing meal I’ve ever seen. Starbucks had joined the lower ranks of fast food. The man told me he had a fast food background and there’s a huge difference between Starbucks and fast food. He was passionate in making the pathetic meal in front of him seem identical to food served at the Waldorf Astoria. I was trying to read this well tailored, kempt man. Was he delusional or just insane? We continued to talk and I kept having the feeling I knew this guy. He confirmed that I did know him having previously spoken to him at McBucks 181. He worked for the Starbucks corporation. That’s all I had to hear and I asked if I could join him after I had already sat down across from him. He put a paper napkin over the meal, realizing he wouldn’t be eating soon. I didn’t think about how rude I was till later, so if you’re reading this Damien, I apologize. Turned out Damien worked for the Starbucks corporation and was there district manager. We spoke for over a half our about Starbucks and FTD. He was already versed on FTD from a previous ‘181’ conversation. Impossible to sit across from me for more than 5 minutes and not get FTD educated. I told him about my Starbuck’s blog article and how many felt Starbucks was going down the tubes. Damien noted my concerns and told me he was going to pass them up to his boss and someone up the line might call. (and the check’s in the mail)

Sure enough last night, his supervisor did call me and we had a very nice conversation. She asked what changes I thought could be made at McBucks ‘181’ without a whole scale renovation. I spoke and she was attentive without getting defensive or regurgitating the corporate line. I also told her how important Starbucks was to me, enabling me to live a purposeful life, with FTD. I educated her about FTD and the “Howard’s Brain” film project. All and all, it was refreshing to see a corporation such as Starbucks have wonderful representatives and that were actually listening to customers.

It was just announced that a new small family owned cafĂ©, ‘Buunni Coffee’ will be opening one block from my building. I’m looking forward to having another place to go. I love Starbucks ‘145’, but it’s a subway schlep.

(New Forbes FTD series patient profile article) 
Joanne Douglas

Forbes- FTD Patient Series When Words Fail -a professor-to-lose-her-power-of-speech/