Droneversation

15:09:51		T-Mobile	Welcome DEBORAH MCGEE ...
15:09:51		T-Mobile	Connecting to server. Please wait...
15:09:51		T-Mobile	Connected to psfchat01.centerpartners.com
15:09:51		T-Mobile	Initial Question/Comment: Verification
15:10:10		T-Mobile	Nancy S has joined this session!
15:10:10		T-Mobile	Connected with Nancy S
15:10:10		T-Mobile	Welcome to T-Mobile. My name is Nancy S, how may I assist you?
15:10:21		Nancy S	To better assist you, please ensure that you are not communicating with us through both the chat and the phone line. Thank you.
15:10:21		Nancy S	I will be happy to assist you with your chat today
15:10:25		You	my order seems to be incomplete
15:10:56		You	so the suggested we chat
15:11:10		Nancy S	Thank you how may I help you today Deborah
15:11:11		You	the = they
15:11:27		You	I ordered two batteries
15:11:43		You	gave billing and shipping and cred card info
15:11:47		You	hit submit
15:12:10		Nancy S	I can help you with that Deborah
15:12:24		You	thank you nancy s
15:12:41		Nancy S	Thank you it will be about 2 to 3 minutes while I get your order approved
15:12:52		You	what was the problem
15:13:31		Nancy S	Thank you for waiting your order has been submitted and will ship out this afternoon
15:13:44		You	again
15:13:51		Nancy S	Thank you very much for choosing T-Mobile!
15:13:54		You	what was the problem
15:13:56		You	????
15:14:26		You	hello?
15:14:31		Nancy S	It had to go to the verification team for approval.
15:14:35		You	why
15:15:21		Nancy S	to protect our customer from identity theft
15:15:43		You	how does this chat protect customers from id theft
15:16:06		You	if a thief was placing the order online
15:16:19		You	they would be directed to chat, too
15:16:34		You	and you would say hi, glad to help
15:16:44		You	and the order would be processed
15:16:51		Nancy S	Verifying your information
15:16:58		You	how
15:17:01		Nancy S	Yes
15:17:14		You	how does this chat verify?
15:18:11		Nancy S	We do stop order from going though and refer customer to the store if they can not be verify
15:18:26		You	but what did you ask me that verified me?
15:19:41		Nancy S	the verification is able to take your information you put on an order and verify that way sometime they will have us call you and ask question only you would have the answer to.
15:20:04		You	hmmmm but no one has called me
15:20:23		You	oh well
15:20:31		Nancy S	no they do not need to talk to you this time.
15:20:34		You	thank you for processing my order
15:20:39		You	i gathered that
15:20:54		You	have a lovely afternoon nancy s
15:21:01		Nancy S	Thank you very much for choosing T-Mobile!

Marathons

I added the race video to the sidebar. What a day that was.

And what a day today was. Barack Obama was inaugurated today, our 44th president, the first African American president in our country's history. He took his oath on the Lincoln bible, not used since 1861.

I was moved like I haven't been ever before. The new First Lady looked stunning, the children were adorable.

There was an excitement and joy evident in the tens of thousands of people who braved the cold to be in DC.

We in the ALS community are hopeful that our new president will loosen some of the restrictions on stem cell research. I want so much for a cure to be discovered while I am still alive, while I am still able to live.

I don't hope to ever run another marathon--hanging on while we wait for a cure is marathon enough.

Breathing

I stopped taking Advair at the beginning of the year because (a) my prescription had run out and I'd forgotten to refill it and (b) I'd been taking it since early last year (Feb? March?) and I felt it was time for a break.

I've had some congestion since I stopped, but believe that is largely attributable to the ever present sinus malady I've "enjoyed" since before Christmas. Maybe longer.

Apart from that, I've had no ill effects. In fact, I have regained that sense of elation that taking a deep, deep breath gives me, that I first enjoyed (no quotes) after I quit smoking back in 2000.

I'm breathing deeply often, and hope (expect) to do so for a very very VERY long time.

Inhale....exhale. Deeply: INhale, exhale....ahhhhhhh.

Science

I want some stem cells injected directly into my brain.

Stem Cells may repair damage from stoke and restore movement~ Scottish Study

A Scottish Neurologist, Dr Keith Muir, is leading a study to assess the potential of stem cells to repair the damage caused by strokes. This highlights the progress being made using stem cells to repair neurons/nerves ~ in the case of stroke to try and restore movement and mental abilities.

While controversial, as foetal stem cells are used, science in this area is leaping forward in the UK.

This can only be good in terms of finding treatments in other neurological diseases like Motor Neuron Disease. Another corner of the world to watch with interest..

Stem cell stroke therapy assessed

By Pallab Ghosh BBC News science correspondent

A Glasgow team is to launch a major trial to assess whether stem cells can be used to treat stroke patients, the BBC has learned.

They hope it will put the UK at the forefront of developing stem cell therapy for incurable disease.

Cells made from a human foetus will be injected into patients' brains.

It is hoped the cells will regenerate areas damaged by stroke, and increase patients' movements and mental abilities.

However, the idea has in the past been described by anti-abortion groups as a "sick proposal".

The trial, due to start in the middle of this year, will initially involve four groups of three patients over two years.

Doctors are primarily testing the safety of the procedure but there is the possibility that some patients may benefit from the treatment.

The first group will receive a low dose of two million foetal stem cells.

The dose will be gradually increased over the trial period and the final group will receive 20 million cells - which doctors think might be enough to begin regeneration.

Keith Muir, the consultant leading the trial at the Southern General Hospital in Glasgow, said he was "very excited at the prospect of a genuine world's first".

He said: "If it works, as it has done in animal model systems, it may allow new nerve cells to grow or regeneration of existing cells and actual recovery of function in patients who would not otherwise be able to regain function."

Disability common

A third of stroke patients make a full recovery, but the rest either die or are left permanently disabled because their brain has been so damaged.

Currently the only treatment is physiotherapy to restore movement and brain function.

But Dr Muir believes the new therapy has the potential to benefit those for whom physiotherapy has been of limited help.

He said: "For the high proportion of patients who make an incomplete recovery it has the potential to put in new cells which will allow new growth.

"Otherwise you are trying to make the most of recovery in an area that is fundamentally damaged and cannot regenerate beyond a certain fundamental level.

"You can reorganise the brain, you can help that reorganisation with physiotherapy but you cannot cause new nerve cells to grow.

"The hope with stem cell therapy is that by putting in new cells and new tissue that you can further improve on that recovery."

Regulator satisfied

The company which developed the cells, Reneuron, first applied to begin trials in the US two years ago.

But it did not get the go-ahead from the US Food and Drug Administration.

Reneuron has, however, now satisfied the UK regulator - the Medicines and Healthcare Products Regulatory Agency - that the therapy is safe enough to try out on stroke patients.

Dr John Sinden, Reneuron's chief scientific officer, said the FDA has been very cautious, and had not given the go-ahead to a single trial involving stem cells.

But he said the attitude in the UK - both from the public and the regulators - was more positive.

Dr Sinden believes his success will mean that other companies frustrated by the FDA's slow processes will make applications in the UK and other parts of Europe for their stem cell trials.

He said: "Europe is going to be the centre in stem cells and regenerative medicine and that is very exciting."

Opposition

However, the use of an aborted human foetus to create the stem cells will disturb campaign groups who have opposed the use of embryos in this kind of medical research.

When Reneuron first announced that they would apply to the FDA for clinical trials the Society for the Unborn Child described the proposal as "sick".

A spokeperson said: "It involves cannibalising an unborn child.

"It is unethical in every way - killing one member of the human race to help another. We are totally opposed to this."

In response, Dr Sinden said: "We have only taken one donation of tissue to make this product.

"We have a technology that is able to scale up an individual cell into all of the cells that are required to treat thousands of patients.

We think this is a major plus in the technology we have and really negates the ethical concerns about the original use of foetal tissue.

"It would be ethically wrong to deny treatment."

Story from BBC NEWS:
http://news.bbc.co.uk/go/pr/fr/-/1/hi/health/7795586.stm

Published: 2009/01/18 17:00:35 GMT

© BBC MMIX

Hello

Well, I'm taking steps concerning the contractors, but am leery about posting just in case the evil contractor gods are listening. I know they keep company with the weather and traffic gods, and it's best not to anger them.

I don't know if it's stress or a cold or what, but the left side of my neck hurts like hell. While I was driving home tonight, there was pain on both sides that felt like it came in waves. It didn't occur to me at first, but after a while I wondered if they were cramps. I used some of my PT tricks to see if the pain would abate -- but no luck. Later in the evening, as I lifted a glass with my left hand, I almost dropped the glass. I won't deny this worries me.

While I'm on the subject, let me update you on the right shoulder/arm. I know they say ALS doesn't hurt, but it does. I think I've said so before. Mike does his magic, but it's only temporary. If I move my arm too far in any direction beyond its now restricted range of motion, the pain is searing. The spasticity in the shoulder is worse. This worries me, too.

Last but not least, the legs. Every now and then they feel "off." I've mentioned this before, I know. It's like the quads have Jell-O in them. I don't like this.

All the above notwithstanding, things are fabulous. I'm looking forward to a weekend with no commitments. I hope to spend a substantial amount of time in the serenity room -- which is 97% finished. I see a glass or two of wine, a good book, my iPod, my little stove, and a nap in my weekend plans. :-)

Idiots -- me and them

Well. Looks like I am the victim not only of a stupid, insidious disease, but also of an unscrupulous home improvement contractor. The last I saw of Dave and his crew was Christmas eve. Not many days before I had told him I wasn't going to replace the roof. Since I, incredibly stupidly but with much good faith, had paid him up front, he knew there was no more money coming from me.

The soffit and facia on the back part of the house are gone and need to be replaced. The interior painting is not finished. The exterior painting is not finished. The landscaping is not done. The new fireplace insert is not installed. Closet doors need to be installed, along with light fixtures and switch plates. There is more, but these are the highlights.

The home, office, and mobile numbers are all disconnected. E-mails have gone unanswered.

I don't understand it. How can people be this way? How can people do this?

I felt at first like I'd been punched; panic and despair were around the corner. My sister (happy birthday my sweet Wendy) was the one who mentioned I might go to the media. Perhaps the woman who wrote the article about the marathon will write an account of this debacle. Anyway, rather than moan and groan, I made a phone call to the man who asked me to speak at his church. He has a wide network so I asked him if he knew a lawyer and a reasonable handy man. At the very least I need to get the soffit/facia replaced. It makes me angry that I was so stupid about paying... I thought I was doing the guy a favor in this bad economy. Who knew he'd be such an ass. I will know better next time.

I feel better having begun some sort of action. True to my philosophy, I will look forward not back, and I will get this taken care of.

But. This really sucks.

Adapting some more

Please welcome the latest addition to my ALS world:

Tomorrow the adhesive will have set sufficiently and I'll be able to fill the chambers. I have great hopes and expectations. One of the people at the support group said she LOVES hers, so I am all eagerness and impatience!

Sunday (in English)

Today is the second Sunday of the month. That means it is support group Sunday. I had actually forgotten and for a brief moment had thought about skipping. But I am going to go, it's worthwhile and I do get a lot out of it.

While I am out, I will stop at Bed Bath and Beyond to pick up a shampoo dispenser. I think there is one near the meeting.

This morning I ran with Lynne and Cathie. totally unbelievable! It was the best run I've had in ages. On this course, I let the others run ahead to the end while I turn around a little before. I know I was running stronger because they did not catch up until almost the end. I love mornings like this.

Jeudi

Je suis tres content aujourd'hui. Je ne sais pas pour quoi, mais je suis juste. Oui, j'ecris en francais, parce que je veux aller a Paris.

Peut etre avril.

(Apologies to purists for the grammatical and spelling errors. Don't know how to write the language, and do a poor job speaking it. J'espere vous pouvez comprendre.)

Bonne nuit. Je suis tres fatigue aussi.

le parapluie

I need to find an easy-open umbrella. Add not being able to open umbrellas to the list.

Adaptation with a pinch of PT

Time to make some more changes, adaptations. I am increasingly unable to open my shampoo and conditioner bottles, so the time has come to consider some options. What do you think of these? I found them here.

I like both. I have to order them, unless anyone knows where I can actually go inside and buy something like them.

I saw Mike today, a much longed-for visit. It's interesting how much I depend on my PT sessions. They are restorative on so many levels. I asked him the question about creating new muscles...he's going to check with his friend, the neuro PT. He said it was an excellent question.

Early to bed tonight. Terps tomorrow with Jeff and Patti!

Iplex--The New Wonder Drug

http://www.informaworld.com/smpp/section?content=a907234807&fulltext=713240928

Provoking article. I was interested in their statement about lithium as I, admittedly, got caught up in that game of telephone. That said, I do believe it has a positive effect, and I disagree with the latter part of this section:

This trail of progressive misinformation would be bad enough if it was limited to IPLEX, but it is not. It is a growing problem on the internet. Before the recent IPLEX furor there was another surrounding lithium. A small but well-documented case series showed potential slowing of ALS progression on lithium 16. This was followed by a rash of unsubstantiated reports of dramatic improvement on it, including a widely viewed video of a PALS who reportedly regained the ability to run and ride his bicycle on it 17. Not surprisingly, many PALS wanted to try lithium. Those who wanted to experiment on themselves found physicians to prescribe it, and even found an online forum for entering their data 18. Now these lithium 'data' (none of which are validated or controlled) have been analyzed and there is reportedly no obvious beneficial effect, which has prompted calls to cease further study of lithium 19. Clearly, this type of misinformation (pro or con) could negatively influence enrollment in ongoing and future clinical trials in ALS and slow the development of effective treatments for ALS 20. It could also lead erroneously to moving a less-promising drug to the front of our current pipeline, or a more promising one to the rear.

Anyway, happy reading. Interested to hear your thoughts.

Ponderin'

Here's a question I pondered during yesterday morning's run: I realize the motor neurons are not firing my existing muscles, which results in the atrophy and all the other lovely ALS symptoms, but am I still creating muscle? When I ran up the hill (okay, walked with style) yesterday, I could feel it in my glutes, which used to be fairly muscley (despite their generous layer of flab!). It just made me wonder...

I also wonder if my slow progression is picking up its pace. Lynne gave voice to this thought the other day, after my pity party. The left hand and left foot changes being so noticeable make us wonder if perhaps the progression is changing a little. God, I hope if it changes, it gets slower, not the opposite.

I've also been thinking it might be helpful for you to see some of what I see daily, which alternately lifts and lowers my feelings. The PLM forum is full of useful, if not pretty, information from PALS for PALS as we make our way. So, without further ado, some highlights (both recent and of particular interest to me). NB: These are unedited and, except for the first two, unrelated to each other.

"My arms are slowly starting to weaken and lifting a fork to my mouth is getting harder. I love sandwiches and burritos etc. It is easier to eat with two hands. What I was wondering was how do you eat when you can no longer lift arms to mouth, but you can still swallow?Are you limited to people feeding you? Can you still go out to eat?"

"I have crossed that threshold and cannot feed myself anymore. While I am home visiting, my mom feeds me. We go out to eat with no problem. Just last night, we went to Outback and I had an awesome center-cut fillet, medium rare, loaded baked potato, and a beer. When I return to Boston next month, I'll have no one to feed me and will have to rely on tube feedings. Worse than having to be fed is giving up eating."

"Yesterday saw yet another fall for Dad, he's getting worse, his speach is nearly gone he's getting stiffer and lossing more and more upper body function. Saliva is an issue and depression has hit an all time high, not only for him but for everyone around him. This christmas came and went, and yet again I found myself looking at the man whom I used to stand in his shadow, now that this big strong influential mountain of a man has been reduced to a husk of a being that is constantly staring out the window lamenting what he once was. This man, my hero and father whom I never once saw cry now just dribbles away the day crying at the state he has found himself at. My mother who is 70 spendes the day caring for her husband. Now at the end of their lives when they should be laughing and playing with their grandchildern all she does is dress bathe and wait for the next failure in body function when she'll have to wash and clean him, now she feeds him and has to treat him as an infant, and she constantly wonders what they have both done to deserve this?"

"Condom catheters may be more comfortable for him than adult diapers."

"I fell twice in two weeks. First fall came from trying to transfer from scooter to wheelchair. I use the scooter to walk my dog. After trying to get up on my own for an hour and completely exhausted, I spent the next hour trying to retreive my cell phone to call my wife at work. My tailbone still hurts from the fall. This morning I fell while on the toilet. My caregiver was late and the phone rang, so thinking it was her, I got up to reach my phone and my feet slid out from under me so there I was on the floor with my arse exposed and my pants down around my ankles. Lucky for me the call was from the company my caregiver worked for and they sent someone right over to help me up."

"I had a bad day, yesterday. I try to live my life with positivity but this ALS thing tests every bit of me, mentally, emotionally, spiritually and physically. I've had thoughts of whether death would be the best decision but I couldn't kill myself if I tried and I'd never be able to put my family through that and yet, I don't want to put them through watching me turn into a quadraplegic. I've decided to have a PEG inserted because I'm losing weight and that's no good. Everyday it seems my mind changes. I ask those with this for 5+ years, do these thoughts ever cease? Do you even have these thoughts?"

That's plenty. Does that give a little insight into what fills my head?

Another day, another stupid pity party

Not a great day today. I guess it's been building up, judging from recent entries.

I met the team (dear Nell has named us this) at 6:45 for what was to be a 2:20 training run (for them, not I). I was still getting squared away and told the others to go on ahead--I had to laugh when they, to a man, all said "no!" They do make every effort to make me feel a part of the team, bless their hearts. So away we went toward the Hardee's (for a pit-stop). As usual, I let them run on ahead so I wouldn't be pulled by their pace. It was interesting to note how great a gap was created in so short a time--that may have been what started the pity party rolling.

After the Hardee's stop, we took off. Just as before, it didn't take long for the gap to widen. Bless her heart, Lynne insisted, as usual, on coming back for me. This troubles me more and more because I hate for her to break her rhythm like that. When she and the others are running ahead of me they look like a pack of Kenyans (I've said this before). They're all running a good pace, talking, training, as I watch from behind.

Have I used this analogy before? I sometimes feel like I exist in two places -- opposite sides of a mirror. I'm usually pretty good about staying on the positive side, but not today. Today I was not grateful I could still run, I was angry and sad -- I am angry and sad -- that I don't run like I used to. When I see these other women running the way I used to run, the way I want to run, I jump to the other side of that mirror and look at the reality.

Lynne decided I was not the boss of her today so she ignored my command to run with the others. She stayed with me for a few minutes, but then her natural pace took her further and further ahead. The wider the gap, the harsher the reality, and the sadder I became. I saw her crest the hill, then disappear. When I got to the college track and couldn't see anyone, I was done. Tears rolled down my cheeks; the anger and sadness lodged in my throat. What dumb crybaby I am. I ran around the track and thought I was feeling a little better, if still rather pathetic, when Lynne came around the turn. We talked for a second about my knowing that part of the course and were going along when the sobs overcame me. All this stupid drama queen needs is a fucking audience and away she wails--totally ridiculous. Poor, poor Lynne.

The run changed after that. Lynne ran back for me but ended up losing the others, so we altered the plan. Coming off the canal path I experienced a bit of emotional recovery, had a good stride, and when we rounded the corner the bright sun and cool air were on my face, Rosie Ledet was playing on the iPod, and it was almost perfect (even though my foot felt funny again). I don't know how long we ran--I pretty much never wear a watch anymore--but I don't even care. It was, after all, still a run. I can still run. I'm an idiot, should be grateful. Right?

We had our customary after run refreshment, but actually had a moment of worry. When discarding the bottle, a city cop drove by. We are sure he saw what was going on, so we put all the evidence in the trunk of my car, closed the trunk, and ran over and sat in Lynne's car, hiding! The cop never came back so we resumed our activity. Since it was so cold we took our red cups to the French pastry shop. We ordered our usual scones and coffee and, while I was signing the slip the owner asked if I'd had surgery, pointed to the most atrophied part of my hand, and asked what happened. I explained to him the situation and got a dose of positive again just from that. For some reason it helps to minimize everything when I talk to people.

On a better note, Kendall and I are talking Paris. Oh, I would love to go but flights are so expensive and I still have work to do in the house and I have no money...but PARIS. Sigh...we shall see.

Sponteneity

Going to leave early.
Pick up C Claire.
Head to Richmond and Short Pump Mall.
Go directly to Abercrombie and Fitch (which C Claire states correctly she doesn't deserve but will earn with the removal of two junk piles from her bedroom floor).
Dinner with Becky and John at Zorba's, where I am told they make homemade Avgolemono soup daily.
Aaaah.

ZZZZZZZZZ

I'm at work. It's only 8AM and I feel as though I've hit the wall already. My whole body is tired, my brain is tired, my eyes are tired.

Maybe more coffee will help.

2009. Day One

Happy New Year.

New Year's Eve was a lovely, quiet evening. C Claire had been invited to a party, Lynne and I decided to cash in a gift card to a steak and seafood place after I dropped C off. I got all dolled up for my dinner and we left just before nine. The neighborhood where the party was being held was lovely, however, they seem averse to house numbers. After searching in vain for number 15, I pulled into a random driveway to ask what the number was. There I was, decked out in the big lep, hair done, and full on makeup knocking on a stranger's door at 9 PM on New Year's Eve. When the homeowner answered I'm sure he was wondering what the hell I was doing -- looking for a party? He kindly pointed me back up the street where we eventually found the the right house.

Having checked that off the list, I headed into town to meet Lynne for dinner. I love dining later in the evening. It reminds me of Europe and seems so civilized. I had a glass of champagne to start and a very nice Pinot Noir with my steak. Tam joined us for a drink and dessert.

After dinner, we headed over to a friend's to bring in the new year. Lynne's sister was there along with some other people I didn't know. That didn't matter, we all had a small glass of champagne at midnight -- everyone was a friend at that point.

I had to pick up the child from the party so I left not long after. This time I found the house easily! We were home by one o'clock.

I met some friends this morning at 9 AM for a run. After last night's dinner I should have run for six hours, but I stuck to my plan of one hour. I noticed about halfway into my run that my left foot felt funny.

At this point I should probably mention that I've noticed a change in my left foot in the last week or so; when I curl my toes, the second and third toe don't. This is a major change and does not make me happy. Sigh...but it is what it is.

Funny foot notwithstanding I completed my run. The morning was cold, windy, beautiful. Have to grab these gifts while I can!

On another note, I did some cleaning yesterday and came across my first place award from the GW Birthday marathon (I think '05) and the Chanel shopping bag I got when I took Becky to France. These are two key items to be included in my memorial service, so they are prominently displayed in the Serenity Room. I also came upon a nice photograph of Ingrid Bergman which I might frame. That, too, is memorial service related.

I don't mean to be morbid. I hope you understand.

Here's to a better 2008 than I'd expected, and to a wonderful 2009.