Routine Change Starbucks

I’ve prided myself in being able to adapt to routine change with FTD. In NYC, change of routine is commonplace and it’s sink or swim. Well I’m drowning.

A few weeks ago I had the wonderful experience of being invited to the AFTD Conference in Atlanta. It was the first year that patients were invited. There were about 12 patients there and it was good to spend a couple of days in the company of fellow FTD’ers. There were also many other people there who I’ve had contact with before including members of the FTD Support Forum and the other various groups. It was a couple of days of laughing, crying, learning and networking.

In the cruel, lonely world of FTD, I applaud the efforts of AFTD to once again reach out directly to patients and show why they are the leading FTD organization in the world. Most of us had never had contact with another patient and it was a relief to see none of us had two heads or were there in a straight jacket and handcuffs. The patients were a solid group who were struggling to extend their life in a dignified manner. Patients of 3 types of FTD were represented. Of course we shared war stories that would leave any jaw dropping. Inappropriate behavior that’s not the type to get into real trouble with, but enough to have us as social outcasts by ending our careers and alienating many of our relationships with family and friends. 


All of us face a very uncertain, certain future.

With my airport travel mantra intact (NAFW), I successfully navigated the TSA. They did confiscate the razor from my grandfather type butterfly razor. I had to stop the TSA agent and show her how to release the blade, so she didn’t slice her finger open. My traveling companion got upset because they didn’t even look at it a few weeks earlier and here they were confiscating it. I kept repeating my mantra and had to calm her down. What a paradox.

Returning to NY had its difficulties. I returned to find my Starbucks closed for renovations. The Starbucks is a 5-minute walk from my apartment and now I had to find new haunts for a few days. I did the run around for a few days and just couldn’t write. I went downtown and around town. I only have a few hours of functioning fully a day to write. I also suffer through waves of exhaustion, which leads me to be less in control of my behavior. Going downtown and being exhausted and out of control is not only difficult, but also dangerous.

For a few days I accomplished nothing. One day I didn’t even make it out of bed. Just unmotivated with no interest in doing anything. For me routine is crucial. Whether I sleep 2 hours or 4 hours I’m eating breakfast at 5:20am and on my way to Starbucks at approximately 6:30am. I get the majority of my important writing done by 9:30am and head home between 10:30 and 1pm. I then meditate or pass out for a couple of hours and round 2 generally starts between 5-6pm for a few hours. This is my routine 6-7 days a week interrupted by domestification Saturday morning.

Finally they opened my Starbucks 181.  I was excited till I walked thought the door. They removed the larger tables and put in smaller tables. They added more tables so there are virtually inches between tables. The tables are lined up in a row and not staggered so conversations with others are impossible. They also removed all the seats along the wall and put in one long (plank) wooden bench with no back. My Starbucks went from a community café to a cross between a McDonalds type fast food and a hospital or institutional coffee shop. The shop was changed to accommodate the profitable fast take out coffee. 


I renamed the store McBucks 181.

As I sat uncomfortably I was breathing in construction fumes. I told one of the barristers who told me her lungs hurt from breathing the air. I asked about opening the door, but that was against health code. I approached the manager who is a wonderful guy and he told me they were doing the construction at night so the store could remain open during the day. I left early with an incredible headache and nauseous from the fumes. I was enraged that they would keep the store open under those conditions. I wanted to call various NYC agencies and complain, but this was my second home and it wasn’t the staff’s fault. They were “following orders”.  If I had Starbucks stock, now would be time to sell.

I spent a nebulous few days trying to find a new home or get some work done, but was hopelessly lost and in a bad cycle. This was now affecting my whole being. My FTD che was interrupted and I was a mess. Positive attitude, mindset or meditating wasn’t helping. I wasn’t sleeping and my diet went to hell. No question about it, things were getting out of control with no relief in sight.

I spent another few days mulling around accomplishing nothing and then decided to return to McBucks 181 with a positive attitude to try and find comfort, accept the changes and get back to work. I went back and sat on one of the new chairs instead of the hard plank. I was determined to find my home again. It was crowded and noisy. There is barely anything in the store to absorb sound and my FTD hearing senses were reacting like chalk on a blackboard. Now a new noise added to hostile environment. Blaring music. I purposely sit on one side of 181 because they have the music playing loudly on the other side. The staff is behind the counter so they turn up the music on the other side to hear it. Now music was blasting on the other side where I resided. I was acoustically assaulted. I looked for the customer who was rudely blasting their laptop or other devise. The person responsible was about to be FTD’d. What I found was a 2^nd new large McBucks speaker blaring. I left in a state of disarray.  I’ve no idea what to do and what lies ahead in my future. I’m totally lost.

Yesterday, I only left my apartment because I knew a friend would be checking on me and making sure I was okay and got out. Otherwise I wouldn’t have moved. She did call and I told her I was lost and didn’t know what to do or where to go. She suggested I try the Starbucks on 145^th Street. It was 10 minutes by subway.

Guess what. Nirvana. I’m here at my new morning home, Starbucks 145. It’s wide open with spacious seating and acoustically friendly. The manager here Marlene, used to work at McBucks 181 and is a wonderful person. We just talked for a few minutes. They also have other 181 staff here.  I’m writing a blog for the first time in weeks and feel like I’ve found a new home. It’s 2 ½ miles from my apt, so on nice days I’ll walk. Thank God there’s life after McBucks 181. 

First 2 articles of a Forbes series on FTD and Patients.

Inside The Mind Of Frontotemporal Degeneration: A Patient's Story May 09, 2012

The Other Side of Frontotemporal Degeneration: Inside A Deteriorating Brain May 09, 2012

Howard