Monday, March 26, 2012

My Mother's Vineyard

My brothers and I have been cleaning out my parent's house in Edgartown the last few weeks and I came across this letter that my mother wrote to "Sean", a student, as part of a local MV school project. I think it's a nice way to show you how much my mother loved Martha's Vineyard, and gives you a little history of the island as well. Photos courtesy of

Dear Sean,
My husband Ed and I live on Martha's Vineyard, the largest island in New England, which lies seven miles off the mainland coast. The island was formed by glacial action 10,000 years ago. It is 9 miles wide and 23 miles long and there are 124.6 miles of tidal shoreline. Captain Bartholomew Gosnold landed his British ship here in 1602 and named the island after his daughter Martha and the many grapevines he saw ashore.

Ed and I retired here in 1992. Our house is in Edgartown, established in 1642 by English settlers only 22 years after the Pilgrims landed in Plymouth. Our town is the seat of Dukes County in the state of Massachusetts.

The settlers found the Wampanoag tribe here when they arrived and established friendly relations with them. The Wampanoags are the same tribe as the one which celebrated the first Thanksgiving with the Pilgrims. Native American camps have been discovered on the Vineyard that are carbon dated to about 2270 B.C. More than 300 Wampanoag still live on our island and some continue the fishing and agricultural traditions of the tribe.

Aquinnah is where most of the Wampanoag live on the island. The Wampanoags taught the early settlers how to capture whales, bring them ashore and boil out whale oil. Later, with larger vessels, captains of ships from Edgartown caught whales in the North Atlantic. In 1778, during the Revolutionary War, the British came to the Vineyard and burned many of these ships. Whaling did not recover until the early 1820's.

Whaling brought prosperity to Edgartown and many of the houses, especially the large ones along the waterfront, were built by wealthy ship captains. The first African American whaling captain from Martha's Vineyard, Captain William A. Martin, was born in Edgartown in 1830.

The Civil War nearly brought an end to whaling from the Vineyard. Ships were sunk or confined to port so no money could be made. After the war some Vineyarders still fished for whales but their ships sailed from other ports and whaling was mostly in the Pacific Ocean.

The major source of income to the Vineyard today is tourism, though fishing and agriculture still play a part. The year-round population is about 15,000, about 3500 of which are in Edgartown. The summer population swells to 75,000 and even reaches 100,000 on the Fourth of July. The tourist season is mainly from May through September.

Our favorite times of the year are the quieter ones. All of our immediate neighbors are summer residents so we feel the Island belongs to us then. We are aware, however, that many of the nice things we enjoy – movie theaters, well-supplied grocery stores, good restaurants, and even our hospital and other services – might not exist but for our summer visitors.

The first reason many people come to the Vineyard is to swim, surf, or fish on our many beautiful beaches. Other water sports are popular, especially sailing, paragliding, kayaking, and motor-boating. Bike riding is popular on our many miles of on road and off road bike trails.

Forty-nine designated conservation areas contain trails for hiking, picnicking, and enjoying nature. Our island is a primary flyway for migratory birds so birdwatchers are frequent visitors. We have many songbirds, shorebirds, and seabirds. Several kinds of hawks and herons can be seen. We look forward to the arrival of ospreys each spring. It is a huge bird, once endangered, it is still a rarity. Wild turkeys and guinea fowl roam the island and occasionally traffic must stop to let them pass.

I enjoy gardening so I am especially interested in the many wild plants here. The trees are mainly pitch pine and oak. We have wild strawberries, blueberries, raspberries (black and red), cranberries, and grapes. Bayberry, winter berry, and American holly grow wild all over the island. Where I live, less than 1/2 mile from the water, the soil is mostly sand. The weather is milder in winter and cooler in summer than the mainland because we are surrounded by water. My favorites of the hundreds of wildflowers here are the Mayflower (trailing arbutus) which is our state flower and the pink lady slipper.

Some of the other wildlife we see are deer, skunks, rabbits, squirrels, and in the winter, seals. Occasionally, a dead whale washes ashore, usually because a passing ship has killed it or a fish net has tangled it – very sad.

Approximately 20% of the island's population is involved with horses: boarding them, teaching riding, or owning them for their own use. There is one large sheep farm and several smaller ones. Some cattle are raised here also.

We travel to the mainland on a car ferry like this one about every other month to visit our children and grandchildren who live in the suburbs of Boston, the capital of Massachusetts. The ferry is the main transportation to the island. We are always happy to come home again to our beautiful island.

Good luck to you and your classmates – it's a great project.

Friday, March 16, 2012

Final Diagnosis: FTLD-U

Frontotemporal Lobar Degeneration with Ubiquitin-Positive Inclusions (FTLD-U). Lewy Body Disease, Braak & Braak Stage 3/6, consistent with idiopathic Parkinson's Disease. Cerebral Amyloid Angiopathy, Focal, Moderate (Vonsattel Grade 2 of 4). Atheroslerotic Vascular Disease, Moderate.

Comment: The neuropathologic post-mortem examination revealed cortical atrophy and the presence of ubiquitin-positive, TDP-43 positive inclusions which form the histologic features of FLTD-U. They are also present in superficial layers of the parahippocampal gyrus, which shows moderate to severe neuronal loss and gliosis, as well as superficial vacuolation (1, 2). Immunohistochemistry for ubiquitin and TDP-43 reveals numerous cytoplasmic (crescentic) inclusions as well as positive neurites and granular positivity of neuropil. The frequency, character and distribution of ubiquitin and TDP-43 positive inclusions are consistent with changes seen in frontotemporal lobar degeneration with ubiquitinated inclusions (FTLD-U) (3). Within the hippocampal formation, there is pyramidal neuron loss with reactive gliosis, somewhat out of proportion to the tangle pathology. Interestingly, it has been suggested that hippocampal sclerosis is commonly associated with the inclusions that characterize FTLD-U (3). In addition there are Lewy bodies and Lewy neurites involving brainstem, pons and medulla, but not involving cortical regions. This distribution of Lewy body disease is that of stage 3 of 6 according to Braak and colleagues.

It's hard to believe it's been almost three years since my dad, Ed Ambrose, passed away. It doesn't seem that long – and yet it seems like forever. So much has changed in those three years yet their house seems to have been frozen in time. My brothers and I have been spending time clearing out their Vineyard home (which is why I haven't posted in awhile) in anticipation of it's sale. Bob and I remarked the other day that it's been very much like an archeological dig. Much of these never-before-seen artifacts have been buried in corners of the attic, basement, or garage.

My father died after a long and winding road littered with lewy bodies and cortical atrophies. He was correctly diagnosed by the first doctor we met at Brigham & Womens Hospital – before there was an acronym for the disease. We spent many more years trying to disprove the many doctors and test scans, trying different remedies, medications, and procedures – including putting a shunt in the back of my father's skull to drain his excess brain fluid.

Dementia is the long, sad goodbye. It gives you time to get used to the idea that this person you love is leaving you. It doesn't make it easier when they finally do, but it gives you months and years of grieving prior to their death, very different than the grieving one does when someone dies suddenly and you're not prepared (at least for me). It's not easier, or harder, than the more sudden and painful death my mother experienced from cancer. Just different. In the end, the very end, it was actually very similar. Both their bodies betrayed them, leaving them breathless.

Dementia has a strange way of sneaking up on you too. How do you distinguish whether one's behavior is due to the subtleties of growing older or that of a terminal illness? With my father's type of dementia, it wasn't forgetfulness that we noticed first. It was a personality change. My father fell on the ice in his front yard and decided he wanted to move. To Hawaii. And if my mother, Nancy, didn't agree, he would go without her and she would be the one leaving him.

It took a family intervention, and a three-month trip for both of them to Hawaii, before my dad realized "something" was wrong. He came back from Hawaii a different man. He was less optimistic and more reserved. He slept a lot more. And he started talking less too, whether it was a fear of saying the wrong thing or just the fact that he couldn't find the right word, or possibly put all his words together in a way that made sense. He became the more silent partner in the marriage. No more retelling the same old stories, over and over again. Though I used to roll my eyes when he started on one of those stories, I began to wish he could tell them to me one more time.

In the later years of my dad's illness, my mother kept a diary of my dad's daily (mostly evening) activities. I found many of these after she died, and they are incredibly sad to read. She originally did this at my request, not only to prove she wasn't crazy, but to give me a reprieve from hearing these soap operas on a daily basis. These episodes were truly depressing, even just listening to them. I actually think it kept her sane, knowing that if it were on paper, she could prove to others she wasn't over-reacting, and that she was right, after all.

My mother and I believed my father was sick when no one else did, mostly because we saw him more often than anyone else. We wanted to believe that he was fine, and to be optimistic that he could be cured with a pill, but we were not the optimists in the family.

My father's ancestors are known to be long-lived, so he always thought he would live to be 100. Actually, my dad was quite healthy, and if it weren't for complications due to dementia, he might have reached that goal. He still has two aunts living in Norway, nearing 100, Aunt Pauline and Clara. And here's a photo of my dad visiting one of his Norwegian aunts, Gina Cunningham, who lived to be 108 years old in a nursing home outside San Francisco.

The memory tests my father took in the neurologist's office, while my mother and I watched, were also emotionally painful to watch. I remember thinking they were so tough that I would have trouble taking them. The doctor would ask a simple question that my father should know, but often didn't. I can still, to this day, see him look to me, with questions in his eyes, as if I could telepathically send him the answer. I had never felt so needed by him. At least not until he entered the various nursing homes, or his multiple trips to the geriatric psych ward.

Just the other day my brother Bob found an old phone in my parent's basement and plugged it in. It is the kind with the answering machine built-in (which I still like to use, actually). On it was a recording from 1996 of the three of us talking about my dad's Apple computer. Bob was advising my dad and me about adding RAM to my dad's computer. So there was my dad's voice, speaking about computers for three minutes, at a time when he was still normal.

I was determined to have a correct diagnosis of his dementia and had wanted to get a brain autopsy after his death. With my family's permission, we donated my father's brain to Mass General for research, after which they sent us these autopsy results, part of which I've shared here. I know that my father would have approved of this, as he favored knowledge above everything else in life. I hope in some small little way that my father has helped find a cure for this insidious disease.


Saturday, March 3, 2012

Photo of the Day: Sibling Rivalry?

I don't know the story behind this photo, but I do love it. I would have guessed my parents weren't at home since the babysitter is in the picture, but I'm almost sure my father is behind the camera. Although I look like I just punched my brother Bill, I think that would've gotten more reaction than smiles and apparent boredom from Bob – although he's always been the calm one in the family. I do like how tough and sassy I look though, in my little, pink dress.