Wednesday, September 26, 2012
The Double Edge Sword of FTD
Trying to negotiate life with a broken mind isn't easy. Yesterday I was sitting across from a friend who commented she couldn't see anything different between the way I'm now to the way I was last year. That's the double edge sword of FTD.
If you sit across from me and have a beer or a coffee you'll never realize that your talking to a person with a severe neurological disease. I was thinking of wearing a sign on my chest that says, "FTD Here" but realized people would ask me if I deliver flowers.
The FTD double edge sword applies to patients and caregivers. Some patients can be aware there is something wrong with there brain and life and no one else gets it. Caregivers can say there's something wrong with my loved one and all the caregivers friends might think the caregiver is crazy and the real FTD'er is fine. Of course it gets more complicated because most FTD patients aren't aware there's anything is wrong with them. There are two reasons this might happen. One is that FTD effects them organically and there not aware there's anything wrong with them. Doesn't matter what behavior they exhibit. There unaware that there's anything wrong with them no matter how bizarre there behavior. In the beginning stages it's common for a FTD patient to be in a doctors office and have the doctor convinced there's nothing wrong with them while the caregiver wants to pull there hair out. Caregivers, if you have any comments about your loved one being unaware a comment below would be appreciated. Then there are the less common cases like me. Patients with FTD that, "are aware that we're unaware" whats going on with us. We know and have accepted that we have FTD, but are forever baffled by our behavior, thinking disruptions etc. We know we're slowly losing our minds and go through an incredible struggle to be aware and control what we're doing and keep our lives together.
Physically, I feel the same same as I did last year with the addition of 40 pounds. What's more difficult this year over last? Absolutely nothing unless I really think about it. That's what I told my friend Sheila. Yes, my behavioral incidents seemed to have picked up a bit, but even though it can get a bit ugly there have been no major incidents. Sheila asked if I handed needed to hand out my awareness cards when things happen. The truth is I've only handed out one awareness card and that was over a year ago. Someone told me my behavior issues more resemble that of a "grumpy old man". Great, I'd rather be an FTD'er than Ebenezer Scrooge.
It's become very difficult for me to follow up on things and keep track of projects, paperwork etc. I used to be extremely organized and now it is impossible to multitask or get through just basic day to day tasks. One year ago ago it was easy to toggle between my blog, filming and the various online support groups I belong to. Now, it is hard for me to do anything for more that a minute without being distracted. Settling in on writing this blog is taking extreme self control and discipline to keep my mind from wandering off. It's now 8:01am and by 9:30am I will be home exhausted for the day. Today is also God's Love We Deliver, delivery day. GLWD has made a big difference in my life. I can't tell you how much there charity food deliveries have made my life easier. They are true saviors and if someone is looking for a charity to donate to AFTD and GLWD are on the top of my list.
Thinking things through and planning things out are so difficult. Amazing how even while writing this I find myself somewhere else after a sentence of two.
Last week was a tough week for me. Having my lawyer put the ice on the case was difficult. I'm lucky to have concerned people around me to help me put together a plan together. it just gets so difficult because there are so many ideas bing floated.
I'm doing fine with a roof over my head and food on my table.
This will be a short, not to detailed blog. Last week was a rough week and there was a lot of concern out there. I want everyone to know I'm weathering the storm and forging forward.
I want to thank everyone for your support out there. Your letters, kind words, and love you've shown me help me immensely.
FTD Wanderer of NYC