Late Night and Parish Life

It’s 1:39a. I’m playing games on both my PC and my iPad.

Tomorrow I am hoping (praying) that I can attend our parish healing Mass.

I can’t sleep. I’ve had 3 sessions of dystonia (seizure-like, muscle spasms), and everything points to my past of being unable to go outside my home.

So, I take the drugs and play games wondering if I should just stay up all night or try to get some sleep.

It’s been 4 years since I’ve walked into my parish. They serve me regardless of whether I cross their threshold, nor afford to tithe. Which boggles my mind.

They bring me communion (Eucharist) when I allow it. Socially I am shriveling up. I have a hard time letting people in. A harder time leaving my home. My fortress.

I’ve asked my daughter, Beth, to take me. I’ve invited a dear friend to come with. My Eucharistic Ministers will be there.

I need the fragrance of incense and bees wax. I need the balm of sunlight through the stained glass windows. I need to light a candle for those I love. I need to touch a pew. I need the healing oil Fr. Bob will anoint me with on forehead and palms. I need the forgiveness.

Most of all, I need the hope that a healing Mass provides. To heal, to maintain or to have a happy death with my family around me.

Papa, I’m trying with all my strength to be present tomorrow.

It’s me. Vicki

Do Not Ask Me To Remember

When we saw it, Vicki and I each wanted to share this message with you. It captures this time in Vicki’s life so clearly.

Do not ask me to remember

Sims, Design, and FTD

I am a diehard The Sims FreePlay gamer. I work hard on it every day because (1) I enjoy it, and (2) It forces me to think sequentially, which is the hardest part of my disease (Frontotemporal Dementia – FTD). And I am proud of the work I have done.

I’ve begun posting photos of my life in SFP on Facebook. I apologize if I am adding to the FB clutter.

But, I am proud of the work I am doing, even if it’s age 16 appropriate. And so I will continue to share the designs & architecture I’ve accomplished.

I don’t know how to spare you from these posts anymore. Thank you all for the positive feedback, Jim Coyle and Marcia Sorenson Sullivan.

It’s hard, some days, being my new Vicki. Thank you for understanding.

Here are a few of my SFP photos:

Thanksgiving

After Thanksgiving dinner. A US pastime.

Final Rehearsal

Final Rehearsal before Christmas!

Christmas House 3013

Christmas House 2013!

New Years Eve at the Haunted Mansion

New Years Eve at the Haunted Mansion

Finally!!

Finally!!

Dementia + Drug Treatments: Complicated at Best

Jim Coyle


I fired up the laptop to write a post about a report our friend John Sandblom shared with Vicki about higher mortality risks with antipsychotic drugs often used with older dementia patients (U.S. Food & Drug Administration’s Public Health Advisory: Deaths with Antipsychotics in Elderly Patients with Behavioral Disturbances; later confirmed in Europe). But my post took on a life of its own.

As I’ve watched Vicki’s doctors try different medicines and combinations of drugs to help alleviate the most extreme symptoms of her dementia, it’s pretty clear that her docs are doing a lot of “let’s try this and see what happens.” I’m sure a lot of our doctors do this to some extent. But most of the time we’re not in situations as significant as dementia and other neurological diseases.

The typical primary care physician or general practitioner rarely encounters Frontotemporal Dementia (FTD) or related types of dementia, so their ability to recognize, diagnose, and treat dementia’s symptoms may be limited. Alzheimer’s Disease is the most common type of dementia, but by many estimates other types of dementia account for about 40% of diagnosed dementia cases. And although research is starting to show promise, there isn’t a way to prevent or cure dementia, or in most cases even slow it’s progression.

Early diagnosis can help significantly in managing the quality of life for the patient through drug therapy, but most of the time early onset dementia is fairly advanced by the time it’s diagnosed.

As I’ve read about FTD, seen Vicki change over the past 4 years, and met and chatted with many other persons diagnosed with the disease, I’ve learned that this disease presents itself differently in different people. FTD is terminal, and there are identified stages almost every patient goes through. But unlike the stages of Alzheimer’s Disease which usually progress in a predictable sequence, the stages of FTD occur in different order in different patients.

With so many factors involved in FTD and other dementias, it’s a daunting task for health care providers, patients, and their families to recognize and live with these diseases – and everyone involved is affected. Vicki and I, along with others we know, try to learn as much as we can about the disease, pay attention to changes caused by the disease and changes caused by medications, and try to live each day as best we can.

I pray more. I hope for good days for Vicki, knowing that a “good” day for her now is a lot different than 2, 3 or 4 years ago. And I’m so grateful for our friendship as I walk with Vicki on her journey as best I can.

Thank you, Papa.
Jim 

 

Caught Up In The Meat loaf

For 4 years I have won the battle with FTD (Frontotemporal Dementia) and, all things considered, including all the potential threats, I’ve had a good four years.

But lately, Papa, I am afraid. Not like when I had spiders coming out of the ceiling light, or thought so. Not like ‘how will I live now that I am fired?’. No. It’s something new. Something ‘different’.

My friend came over last night. It was a great day, and even better with her here. I know we had something pass in conversation that was exciting to us both. We even continued on the phone later. And today, it’s all gone.

I was hungry all morning, but I didn’t want to use up the meat loaf my friend brought over (so delish!). And so I stayed in bed, entertaining my new, persistent migraines but unable to get up and just eat something. A piece of toast, a slice of cheese. But I was confused, caught up in the meat loaf.

My daughter & I were going to see our friend, Troy, in a play at Central Michigan University tonight. I was totally up and revved to go. Yesterday. Today I was weeping, practically begging my daughter to not come over. But Bep came by, bringing some groceries. And when I met her in the kitchen, starving, I looked at my stove. There was some kind of cabbage concoction with the meat loaf. The meat loaf! MY meat loaf!

CameraAwesomePhoto

I looked at my daughter, who was puzzled when I broke into tears. “I don’t remember making this.” It was still warm. The aroma heavy in the air.

This isn’t the first time. But it’s gotten me fearful. Not of dying, but how quickly things could turn, and I disconnect. Altogether.

Papa? It’s me, or what’s left of me, Vicki

Vicki’s Medical Expenses

As you can tell from the increased time between her posts here, Vicki's FTD is taking a toll.

Vicki had hoped to participate in clinical research studies to help understand more about Frontotemporal Disease for the benefit of others who may be affected now or in the future. But to participate, there were preliminary testing, evaluation and travel expenses not covered by her medical insurance. These tests are expensive and her financial resources are limited. Even though it's now unlikely she'll be participating in clinical studies, her medical expenses are still high.

I invite you to join me in helping Vicki with her ongoing medical expenses. If you're able to make even a small donation, it is so appreciated!

This is a private activity, so donations aren't tax deductible. But each of us can make a real difference. To donate online, just click on the button below.

Thank you. Jim Coyle









Vicki in Faith Magazine

Vicki's story is one of faith, humor and love in the midst of suffering, and is featured as the Cover Story of the November 2010 issue of Faith Magazine. If you haven't already read it, I hope you'll read the story online and learn more about Vicki as she shows us how to live, no matter what our situation is.

Jim Coyle

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