Tuesday, November 27, 2012

Some Progress...

But still some questions.

After forgetting to call Dad yesterday, I spent this morning at the transplant clinic and had major truckloads to check in at the store so it was around noon today that I called. Of course he was just getting back from his neurologist appointment. Oh well! At least it was fresh on his mind. Here's what he had to say:

He likes Dr. Tseng. She is in the same group as Dr. Chen and took over a number of her patients. She also knows Dr. Marder, who worked in the same group. Dr. Tseng is frank, open and easy to understand and listens to what he has to say. He opened the conversation by mentioning the number of obituaries he reads where the death is listed as due to the complications of Parkinson's and he wanted to know what he had to look forward to as the disease develops. She said the deaths are in very advanced cases where breathing and swallowing become impossible and hat he is a long ways away from that stage of the disease.

Her main point to him are that she has two kinds of Parkinson's patients. Most are like Dad, with tremors that are manageable and that the disease can maintain that stage for a long time. The others are the advanced patients who require significant care. At Dad's level, there is very little to do other than medicate to control tremors. The best therapy is exercise and his 'dance' classes are the best thing he could be doing. The suggestion is that he has a good age/Parkinson's ratio. I suggested that it sounded like PKD. You know you have the disease. The doctors treat the symptoms. Other than that there is little to do but watch and monitor. Dad agreed. He seemed to like Dr Tseng and trusts what she tells him.

I don't know whether he asked if his recent neck stiffness is related to Parkinson's. My guess is probably not if it didn't bother him last night or this morning. (He didn't mention it Sunday.)

That sums up what I learned today. Mary can probably use this and pry more information out of him. His next appointment with Dr. Tseng is in six months, which right now seems a forever away.

Sunday, November 18, 2012

Parkinson's related?

It occurred to me that the rigid neck might be connected to Parkinson's. Could be; here's what I found online:

 Rigidity is stiffness and resistance to limb movement caused by increased muscle tone, an excessive and continuous contraction of muscles.[1] In parkinsonism the rigidity can be uniform (lead-pipe rigidity) or ratchety (cogwheel rigidity).[1][2][11][12] The combination of tremor and increased tone is considered to be at the origin of cogwheel rigidity.[13] Rigidity may be associated with joint pain; such pain being a frequent initial manifestation of the disease.[1] In early stages of Parkinson's disease, rigidity is often asymmetrical and it tends to affect the neck and shoulder muscles prior to the muscles of the face and extremities.[14] With the progression of the disease, rigidity typically affects the whole body and reduces the ability to move.

This is Wiki, of course, but tracks with other stuff I read. I'm just wondering if Dad's docs are all coordinated. Does Wiggins have all the info about Parkinson's from his neuro doctor, etc? Anyone know? 

Friday, November 16, 2012


When I was in Dallas, Daddy was having a real problem with pain in his neck (yes, insert joke here.) He said he'd "slept on it wrong" and it was so painful he was having trouble driving because he couldn't turn his head. It had subsided somewhat by the time I left, but when I talked to him this morning he said it was excruciating yesterday, to the point that he canceled his PrimeTimers outing and went to see Dr. Wiggins. The doc says there's nothing apparently wrong it except the neck muscles were clenched tight, almost like a fixed spasm. He took some Xrays and gave Dad some hydrocodone (which Dad had already tried to no avail) and some muscle relaxers. Daddy said it was better today. He should get the Xray back this afternoon, but the doctor seems to think it's just all that tension-causing stress (and grief.)  We'll see. He said he'd call back when he heard the results.
I guess that straight-backed posture takes its toll.

Tuesday, November 13, 2012

A Philosophical Problem

Mary was in town over the weekend. D Magazine flew her down to write an article on Mexican Food in Dallas. So she and Nancy went on an epic Tex-Mex binge, stuffing themselves, Dad and eventually the whole family with unreasonable numbers of tacos and cheese enchiladas.

Finally, late Saturday evening we gathered at Dad's apartment to start to go through Mom's clothing and jewelry. Being the only guy, I walked in blind. Mary and Helen have been going through Mom's stuff since they were old enough to walk. Lucky for me Mom did not have happy memories both of going through her Mother's effects and going through Dad's Mother's effects acting as Dad's agent. She told us of how unhappy these experiences were for her and her main wish was for us to go through this process amicably. She also insisted that Susan be given voice at the table.

We were lucky enough to have had a practice run at his. When they moved to New York thirty years ago, we had to split up things from their house in Dallas as they certainly wouldn't fit into their New York apartment. Still, I was not looking forward to the day of reckoning.

I turned on the light in the dining area and walked around the table to take a seat when I glanced at the sideboard and there it was. A largish blue fabric bag containing a black box. It was the box containing Mother's ashes.

It was not surprising to see it there. I knew that Helen had picked it up and had heard something that made me think that it was at Dad's apartment. We hadn't talked about the ashes much. Mother had donated her body to UT Southwest Medical School and we had been led to believe it would be sometime before we would be receiving it. The call that it was ready had caught us by surprise.

But there it was.

Only I didn't see a box, I saw Mother.

When computers can't make sense of the data, they crash and that's just what I did. I totally lost it.

Everyone put their arms around me as I sobbed. Someone put the box on the table in front of me. I untied it and looked at the box. I tried to open it, but it was sealed well. "You don't want to open it," said Susan. I knew she was thinking about Walter throwing Donnie's ashes into the wind, and put the box back in the bag, and started to calm down.

Then we all sat down and went to work divvying up the jewelry under the watchful eye of  Mother, watching over us from her box on the sideboard.

Monday, November 5, 2012

All Saints Day, 2012

All Saints Day, All Hallows Eve, Halloween, Dios de los Muertos.What a complicated day, with its roots in Aztec, Roman, Celtic and Byzantine cultures.

Growing up in a more protestant Episcopal Church in Atlanta and Dallas, I don't have memories of special celebrations, (protestant theology took a dim view of adoration) but have participated in special services since I joined the choir some twenty years ago.

For many years, the choir performed a Requiem between services. Then for several years the choir entered silently from behind the altar and stood in silence at the altar rail while the priests read the names of those parish members who had died during the previous year. Following the necrology, with organ and orchestral accompaniment, we processed in a complex pattern around and though the congregation singing all the while.
Now the choir waits outside with the rest of the procession while the priests read the list of the names of the dead. The service is still high ritual,with incense and orchestra. Movements of Faure's Requiem are performed at appropriate points during the service.

During the years I have participated in the service I have frequently heard names of people I knew, some better than others. Some were surprises. Obviously this year was going to be different.

I began thinking about the service a number of weeks ago when the choir began rehearsing the Requiem. I totally lost it during the first run-through of the Paridisum, where choirs of angels welcome the dearly departed into the holy city. I also lost it when I thought of Dad standing alone with his peeps in the 'Old Widower's Pew.' One Sunday I mentioned this to Susan and suggested that she might go and stand with Dad during the reading of the names and the service and she readily agreed. But I didn't really know if it would matter much to Dad and I never mentioned it to anyone other than Susan.

Thinking about this very obvious trigger caused me to write the blog post "Triggers" a couple of weeks ago.

Last week Susan and I had dinner with Dad and she asked him if he wanted someone to go to church with him on All Saints and he said, "No, I'll be ushering. November is our month and it will be our first Sunday, so I'll be busy with that." And that was that.

I slipped into the back row during the reading before the early service today and my ears perked up when they started with the 't's. "Thompson...Polly Jerauld Paxton Waddington...." There it was! I almost missed it. But where were the tears? Where was my emotional buzz? I missed the pain, the emotional release. I missed that last visceral connection with Mother. Now it was just stark emptiness. I got and rejoined the choir for the triumphal procession.

I came down from the choir loft from after the first service. There was Dad, getting the service leaflets ready to hand out. We spoke for a moment then I headed out for a much needed cup of coffee. As the choir was lining up, I searched out Dad in the narthex and found him handing out leaflets and greeting parishioners. I watched him for a minute. He was in his element as he would move from person to person, greeting each person like he'd known them all his life, sharing a smile, exchanging a confidence, asking after a spouse or a friend, shaking a hand or a hand to the shoulder. Like a good politician. I stopped him  and asked if he was going in for the necrology. He started to say he was planning to, but he saw someone arrive to whom he hadn't spoken and off he went.

I heard the priests begin and I went inside to hear the reading a second time. Maybe he would join me. After a brief invocation, the reading starts with Abraham, through Isaiah to Mary, John, Peter, Francis, Thomas Becket, Martin Luther, Thomas Cramner and on to Martin Bonhoffer, Mother Theresa and finally to the names from the parish. As some point Dad and another usher came in through the rear door and stood for a minute. I thought maybe they were going to listen, but they waited and helped someone find a seat and when I looked again, Dad was gone, and when I looked again, they both were gone. Then Mother's name came  again, and went.

The music was glorious and ethereal. Once in rehearsal James Diaz was asked why we always used the Faure Requiem and not something else. "Because people love it and ask for it. People remember it and come back to this service because of it." It helps them remember.
In Paradisum deducant angeli;                 God's holy angels lead you to paradise;
in tuo adventu suscipiant te martyres,       may saints in their glory receive you at your
                                                              journey's end,
et perducant te incivitatem sanctam          guiding your footsteps into the holy city.
Jerusalem, Jerusalem, Jerusalem.            Jerusalem, Jerusalem, Jerusalem.
Chorus angelorum te suscipiat,                Choirs of angels sing you to your rest,
et cum Lazaro quondam paupere             and with Lazarus raised to eternal life,
aeternam habeas requiem.                       may you for evermore rest in peace.

Gabriel Faure Requiem: 'In Paradisum'
(Click to listen)

Thursday, November 1, 2012

Dreams and ashes

Some days are harder than others. Dave talked about triggers but they seem more like IEDs because I never see them coming. Today is a hard day because of last night's dreams: I've been thinking about ashes since Helen told me about picking them up. I don't want them to be stored at SMAA for some reason. I want them within reach. Totally irrational, but Helen and I talked about this and I think we share the emotion. Anyway, I suspect that because of the word, I dreamed about Ashes (the dog) last night, a complicated jumble like most dreams but leaving me with a strong deja vu today about finding Ashes in the back of the Hillman during the Easter egg hunt that year. What a funny name for a dog.