Saturday, August 10, 2013

Rocking on in Colorado

Sitting here overlooking the Colorado Rockies life is wonderful. Last night Brenda, her husband and friends were all jamming. Brenda now has the number one hit in the valley. Months ago when Brenda sent me a letter requesting she join the FTD Support Group I did my usual vetting process. Yep, I'm an asshole and since it's a life to death membership I make sure everyone is a legitimate FTD'er. At least as much as I can since the even the medical community uses a weegi board to sometimes decide a diagnosis. Had one person want to join to bloodlet everyone as a possible means to a cure. Okee dokee.

Brenda seemed like the real deal and had as firm as diagnosis as possible without me seeing autopsy results. I found Brenda's artwork online in a gallery. It was amazing. I was shocked to learn that she only started painting a year ago. We spoke yesterday about the FTD art program that they had at UCSF. Many with FTD gain artistic expression as they lose executive functions. 

Been nice spending some days with Brenda, her husband Chris and the 15 year old twins. Like all FTD families, they've been through there hell and gearing up for the future. What an incredible loving and understanding family they are. They all know what's going on and what there facing and making the most of it. Positive attitude and keep chugging along. They moved about a month ago from Chicago to a massive beautiful house in the rockies. Guess I'm sort of on the run to. Big cities and FTD don't mix.

This trip is really making me miss my 2 children, Myles 15 and Chelsea 19. It's a deep void in me now. I'll be much closer in Arizona, so I'm planning on seeing them a lot more.

When you have a rare disease like FTD, it's so comforting meeting others that are going through what you are. It was definitively a comfort to Brenda, me and the rest of the family. Brenda's husband Chris and there daughter found many behavioral similarities that we share. There's always common bonds between FTD'ers. We've been talking for days. Guess I've a bit of experience so I usually have a few helpful suggestions.

Like just about every FTD'er, there's stories behind stories. Brenda went to a neurologist to get a second opinion on her FTD diagnosis. The neurologist never heard of FTD. I'm never ceased to be amazed on the lack of awareness of FTD by people that should know. Brenda got some good recommendations from our Denver FTD'ers of an experienced FTD neurologist in Denver. I'll also be getting her information on the UCSF program.

Massive fireplace

Being an organized FTD'er. I ordered an air mattress for my new Arizona apartment. Checked on it last night to see if it would get there on time. Due to arrive at my NYC apartment Monday. LOL. Have to love it when a plan comes together.

So nice not to hear honking horns, car alarms, ambulances and police cars. So quiet here. Miss my friends.

Will be picked up by some FTD'ers in a couple of hours and off I go to Denver. Can't wait to meet this group that I've been in contact with and so close for so long.


* BTW - The blank SD Cards for the camera I lost. Well, after searching my bags 5-10 times. Ripping them apart, I found them. Another FTD'er success story.

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