Wednesday, September 24, 2008

New Sheriff in Town


Yesterday we saw a new neurologist. The doctor we've been seeing for the past year is a lovely man but his approach to Flip's disease is completely laissez-faire, what-will-be-will-be. Sitting in his presence for a few minutes every three months feels like a coffee klatch without the coffee, so I sought a doctor who specializes in Alzheimer's.

Dr. G is personally quite repulsive. He creeps me out, and not only because of his attire: Blindingly bright turquoise nylon shirt so tight that his belly bulges between the buttons in flaccid bits and a tie that looks like Salvador Dali vomited. He walks like a chicken and his hair appropriately resembles a cock's comb. Let's just say that he is old enough to know better.

He enters the room, strutting, and informs us that he doesn't have to work -- he does so because he loves it. I think this is meant to be reassuring but it falls far short of its mark.

I am uncomfortable that he makes eye contact only with me the whole time he is with us. To be fair, I have done most of the talking because Flip's disease is impeding his verbal skills. Since doctors allot only so much time per patient, it is more ergonomic for me to explain what is going on. But if he is going to treat Flip as a nonentity, then he is not our man.

He touts himself as being on the "cutting edge," an expression which I have found usually indicates a huge ego. And while some degree of ego is probably necessary to accomplish anything, too often it controls the beast and blinds it to its own faults.

He has one of his assistants, of which there are several, make us copies of the particulars on two drug trials he is running. The sheaf of papers is a good two inches thick. I have my reading material for the next millennium right there.

One drug is an hour-long infusion by needle which is given every six weeks, followed by an MRI to monitor swelling of the brain which is a possible side effect. He minimizes the seriousness of this for us, but I am a lay person. Swelling brains do not sound good to me.

The other medication is a daily pill, the possible side effects of which are: headache, diarrhea, rash, head cold, dizziness, problems with balance, nausea, tiredness and muscle pain, vomiting, abdominal pain, cough, sore throat, itching and visual disturbances, as well as intestinal blockages requiring hospitalization. Confusion is another, although I am not sure this could be determined in a patient with Alzheimer's.

Either of these regimens could have been an important part of Dr. Mengele's repertoire, or the Marquis de Sade's. It seems that quality of life should be a factor.

Flip asks me if there is a third party regulating these trials, and I tell him there is not. Basically, I am all he has. Unfortunately I am not a trained medical person, but on the plus side, I am reasonably intelligent, I can read, and I am absolutely devoted to protecting him.

I hate that the doctor must be considered an adversary. We are between that rock and hard place in that seeing Doctor #1, who is a nice man and seems genuinely regretful when he tells us there is nothing he can do, has begun to feel too much like giving up. Our visits to him are basically a quick conversation after which he pronounces, "Yep. You've still got it."

I need to feel more proactive and less resigned even if we are fighting air or tilting at windmills.

Doctor #2, on the other hand, may be on the cutting edge but he is also clearly in the pocket of the drug companies. He is probably being paid for every body he brings into the studies so there is no way his first concern is for the patient. It is obscene that drug companies and insurance companies control medical care in this country.

While I understand the necessity for drug trials, I am extremely reluctant to subject someone I love to them. I want a drug that will erase all symptoms of the disease with no side effects, a drug that will spring fully formed and armed to the teeth like Athena from Zeus' head. I want to know that no animals, human or otherwise, were harmed in the making of this drug.

Is that too much to ask?

This disease is a maelstrom whirling faster and faster. As rational beings, we want to make sense of our life's experiences. Understanding them is second nature because we have no other way to navigate the future. Accepting that perhaps there is no sense to be made here goes against all our conditioning as reasoning beings.

Alzheimer's is the best reason I know for living in the here and now.

43 comments:

EsLocura said...

Besos Y abrazos sweet one, maybe you and Flip should take a little tropical vacation. : )

RED MOJO said...

It's good that you are seeking alternatives. Keep looking. You may find something where the benefits outweigh the risks. Flip is lucky to have you protecting him.

thailandchani said...

Some things just don't fit into rationality or reason. The only way I've been able to process it is to realize there is a purpose. Sometimes I just don't understand it.


~*

furiousBall said...

Glad to hear you are getting some other opinions and keeping your eyes open for other avenues of relief for Flip.

I recently learned the value of a good neurologist with some neck, lower back, and carpal tunnel. all of which i am managing with physical therapy, yoga, and a little chiro.

meno said...

Maybe try a third doctor?

It sounds like doctor#1 is being honest with you, and doctor#2 is using you.

But i will absolutely trust your judgement, you were there.

The CEO said...

I am so sorry to say this that I will apoloize before I say it. Elan had a drug in human trials which was working, but unfortunately killed a few people. Not a lot, a very few. Two. But still, two. It's a quality of life issue. Ask for the name of the manufacturer, and you'll know if you should simply walk out. A personal opinion, and my apologies.

Ian Lidster said...

Carpe diem my sweet and wise friend. How awful this all is for you both. Your description of #2 would certainly send me looking for a #3 somewhere. May God smile on you in all of this. There must be a better way.

heartinsanfrancisco said...

Eslocura,

Is there room for two more in Puerto Rico?

Mojo,

That's exactly what I want to find, but it seems that every alternative thus far is the opposite.

Chani,

I guess for me, faith needs a boost from science.


Van,

I'm glad you found the help you need, and some of those practices like yoga can be incorporated into your life even after the crisis passes.

Meno,

My judgment tells me that both of them are unacceptable. Maybe the third one will be Just Right. Or maybe the bears will eat Goldilocks alive and scatter her bones all over the yard.

Monty,

I don't trust any of the drug manufacturers. They're all scoundrels.

Don't apologize for warning us. We're not willing to take chances on anything that sounds potentially dangerous.

Ian,

Yes, there must be a pony in here somewhere. I'm not sure God is smiling -- I think it's more like laughing his head off.

Franki said...

Oh Susan.

The CEO said...

I just wish I could be really encouraging, like brimming over with cookies and ice cream.

meggie said...

Oh it must be so hard. My husband is teetering on the edge of it. His mother had it, & his father's only sister had it. I despair sometimes, but we have not gone for diagnosis, simply because I believe it might be worse to know, & he is terrified he is getting it.
"They" keep announcing new treatments, but ...
At present it is the mood swings I hate most.

Nick said...

Heart, I'm with Red Mojo and Meno. Doctor 1 may very well be right in saying there's not much you can do but let things run. But doctor 2 is clearly a villain in the pocket of the drug firms who just wants guinea pigs. I think you're right to keep looking for someone who can offer some relief from the illness, or slow it down, without drastic side-effects and with Flip's interests at heart not their own.

And yes, Flip is so lucky to have you looking out for him.

the walking man said...

Hearts...Phew. That tale rips right through me.

Doctors...I have one simple test for doctors and that is not to proffer the sobriquet of Doctor until it is earned. Use the first name and judge the reaction to them being taken off the pedestal, on the ground at the same level as the patient. The best doctors I have had are the ones that were willing to engage me on my level not the top down level they are used to.

Doctor 1 would probably be all right with the relationship defined by the patient, Doctor 2 would startle at the use of his name.

In either case because of his relative acceptance of the disease Doctor 1 would be out. And Doctor 2 just because I suspected he was somehow quietly compensated for his participation in the drug trials would be out.

Personally I would look into stem cell trials and a research doctor working in that area. But that is me.

One thing I do know though is that by going through a progression of doctors while a pain in the ass, time consuming & repetitive, eventually the right doctor comes into sight.

The right doctor is going to fit like a glove, you'll know it and more importantly your gut will be telling you to trust her or him.

NO FEAR

Fate's Granddaughter said...

I wish we didn't have to question the motives of people who took an oath to protect lives. While I hope that you are able to find some solutions, there is no shame in tilting at windmills on occasion...sometimes it is all that keeps us going in difficult times.

witnessing am i said...

My head hurts from this -- I know the feeling all too well. Doctors who seem to care but don't seem to have the urgency, to will to really do something. And then the opposite side -- the men who take some chances and may succeed now and then, but seem to care more for their egos than their patients. I am so sorry and agree with the thinking that maybe a third doctor is in order. Is that possible?

I am very glad that through every step of the way, Flip has you on his side. He is very lucky indeed.

Echomouse said...

I'm so sorry. I've been where you are.

Listen, there are other doctors who are just as good as that twit. You just have to find them. Search online, contact the Alzheimer's Society, just keep looking.

My disorder is very rare. I was sent to an expert who was a complete jerk. So I called around until I found someone else. It worked. I look all over the country and in the USA for doctors. It takes time but you will find better. Then, even if that doctor is a distance away, after the initial consult, they can treat you via your regular doctor who you like.

I hope that helps. It's all I can think of to do. My thoughts are with you both.

heartinsanfrancisco said...

Franki,

Ohh, Franki.

Monty,

What kind of cookies?

Meggie,

It's horrible to watch an intelligent, articulate, talented person disintegrate and lose confidence in the process.

Good luck with your husband. I think you should try to get a diagnosis in case it's something they can fix.

Nick,

There are many neurologists, but Herr Doktor #2 is the only one in the city who seems to specialize in AD.

I'm still searching for Dr. Right, though. Thanks for the kind words.

Mark,

Sigh.

As far as I know, stem cell research is not being done openly because of our Fearless Leader's moral opposition to it, although he seems to have no reservations about killing people in battle.

I am having a hard time with trust right now where the medical profession is concerned.

Fate,

Don Quixote has nothing on me.

It really is a shame when the hypocratic oath becomes the hypoCRITIC one.

David,

Yes, there needs to be a third doctor, one who is realistic but not defeatist, and most of all, who sincerely cares about his patients.

Perhaps I'm dreaming.

Echo,

I found #2 through the Alzheimer's Society. I'm sure he has the credentials, but I am not impressed.

I'm glad you were able to find what you needed, and wish you the best of luck that they will find a cure for your rare disorder.

the walking man said...

http://www.americanheart.org/presenter.jhtml?identifier=4757

http://stemcells.nih.gov/research/current.asp

http://stemcells.nih.gov/research/educResearch.asp

Hearts…there has always been a degree of stem cell research. The ban was on creating new lines of EMBRYONIC stem cells. This led to the discovery of ADULT stem cells, some of which are found in body fat for instance. These adult stem cells are where the primary AMEICAN research is happening and there have been breakthroughs. I do believe that Stanford has an ongoing research program and I would be willing to bet that UC Berkley has one as well. They may or may not be conducting clinical trials but I would be willing to bet with your power of schmooze, you’d be able to get a recommendation for a doc that is not an ass.

I understand implicitly what you are feeling about doctors. I have two that I trust completely. Robin, my primary care physician, she is a GP and has put up with me for a decade and Martin the pain relief guy that led me to the Medtronic implant. That sounds pretty good right? I have multiple appointment cards for a minimum of 65 doctors over the last decade. Some were arrogant, some were OK and, some were just concerned with running more tests, even if it repeated recent results, so their clinic could get the insurance money.

The one thing you can not do is get frustrated. It may not be the next doctor either. BUT it could very well be. You have good instincts from a life time of bouncing around and settling where you did. TRUST THEM!

Two of the articles are from the National Institute of Health and one is from the American Heart Association which is funding adult stem cell research. You have to make calls now and find out where the information you’re in need of is.

NO FEAR

Molly said...

The medical profession has changed so much. It's all about pushing drugs and running tests, the better to squeeze the last drop from your insurance. Alzheimers is a cruel disease. But it could be worse for Flip. If he didn't have someone as loving and supportive as you by his side. I'm hoping Dr. Right is behind door #3.

Jocelyn said...

The tragic, most poignant part of this post is that the answer to your question of legitimate frustration is, "Yes, apparently it IS too much to ask."

You know this, but: how heartbreaking. Flip is so magnificent. Of course, he married a peer, when it comes to that.

Wanderlust Scarlett said...

I wish so much that you two weren't going through this at all.

But, as it is, he's very blessed to have you.

Living here and now is the best that any of us can do. No one gets a guarantee of anything more.

You write so brilliantly, always, I *love* this line: "...a drug that will spring fully formed and armed to the teeth like Athena from Zeus' head."

I will wish it for you both, too.

Hugs.

Scarlett & Viaggiatore

jameil1922 said...

How frustrating. There needs to be WAY more drugs w/o a laundry list of side effects which make it essentially a decision of how many diseases will i pick up while waiting for this other one to be cured. And the doctors w/o morals drive me insane. How is it that Hippocratic oaths are just an act now instead of something they wholeheartedly stand by?

Bob said...

I'm glad you're talking to other doctors.

those drug trials sound scary. but with you at his side, I'm sure Flip will get the best possible opportunity.

Thinking positively for you both.

heartinsanfrancisco said...

Mark,

Thank you so much for all the information. I'll check out all those links and hopefully, find someone who can help us. You are very kind to provide them.

I am positive that someone, somewhere, will come up with a cure for this terrible disease and when they do, we intend to be there.

Molly,

At the moment, there is no Door #3, but there will be as soon as I regroup.

Thanks for your always kind thoughts.

Jocelyn,

Yes, Flip is the goods, a really great being who teaches me so much every day about living gracefully with adversity.

Scarlett,

I suspect that your wishes have great power, so it's wonderful to have you on our side.

Jameil,

I know a few doctors who still are all about helping alleviate suffering, but most seem to be more about helping to lighten the weight of your wallet.

Bob,

We couldn't ask for more. Thank you for those positive thoughts.

Sienna said...

Hearts, am sending you the oz link to AD site, on it it has current drug t'ts... u might like to have a read... maybe something of news..something new, old, familiar?

http://www.alzheimers.org.au/content.cfm?infopageid=2018


it is from:

http://www.alzheimers.org.au/index.cfm

...and from Chicago conference.... (07/08)
via the oz site again.... check out the drugs and doc names, see if any ring a bell?

http://www.alz.org/icad/_release_icad_072908_130pm_trials.asp

It's a thousand things, sifting thru lots of information and education, meeting with doctors that share your passion for the best possible outcome for Flip, you know I am keeping my ears and eyes open here, been some exciting reports make current affairs shows, but these need to go thru due processes so that it is shown to be effective and working for more than just trials, but more importantly it relatively safe treatments they are letting loose.

love as always

On a limb with Claudia said...

((hug))

I'm sorry.

If you'd like, we (by that I mean D) can look into the drug trials. (He's in the Data side of that work.)

In the meantime, I know there's an answer out there. I just know it. Let me know if I can help, or the resources at the Open Grove, can help to find a doctor that might work.

Much, much love - Claudia

seventh sister said...

Is there anyway you can get the name of the company doing the trials?

Can you get anyinformation other than what the doctor is giving you?

Rachel said...

I didn't know Flip had Alzheimers. My sympathies to you both.

I don't think your request for a miracle pill (so to speak) is too much to ask. It may be impossible to grant, but if you don't ask or demand it, then no one will try. Keep on asking!

heartinsanfrancisco said...

Pam,

Thank you so very much! I am turning into quite a research librarian, it seems.

Today I got a recommendation of another neurologist who specializes in memory disorders and am waiting for her office to get back to me with an appointment.

I am sure there is help out there, and all the advice and good energy we're receiving from as far away as Australia, even, is very encouraging.

Love you, too, Mate.

Claudia,

Wow. I didn't know D was involved in that. I think I've ruled out the two offered by the last doctor, but would love to know what else is happening in the field. It's only a matter of time before something comes along that will make a difference.

Thank you so much for your ongoing concern and good energy. It makes me feel that we can get through this.

xoxo,
S

Sister,

No to both questions. They are blind trials, so the whole purpose would be defeated by giving out that information. And anyway, he's not telling.

The thought of seeing him again is rather odious as he does not inspire trust, so we're moving on again. I'll definitely keep you posted.

Rachel,

I love your theory. I will indeed keep asking in the hope that somebody is listening.

Thanks for your insight. It helps.

Los Angelista said...

I think about you and Flip alot and your love is a miraculous blessing to you both. It inspires me. I know this doctor drama has to be so draining for you both. There has to be someone else out there. I wish I could pull a name out of my back pocket and give it to you.

citizen of the world said...

"I am absolutely devoted to protecting him."

I just fell in love with you.

Miao said...

That's Dali's painting, isn't it? You have great taste. :)

I like this entry. Very meaningful. Thank you.

Eastcoastdweller said...

What a burden You have to bear, what a challenge You are working through. Flip is blessed to have You in sickness and in health.

heartinsanfrancisco said...

Liz,

I do love him so if anybody gets to kill him, it's going to be me.

How inspiring is that?

Citizen,

That's all it took? Wow. Who knew?

Miao,

Yes, Dali. It's called "Metamorphosis of Narcissus."

Eastcoaster,

Well, in sickness is when the vows we take actually mean something. In health is usually pretty easy, isn't it?

Glamourpuss said...

I have to say, this has often been my experience with doctor's, too. I guess they tend to see people when they're weak, and so their own strength becomes magnified. It would take a lot of self-awareness and humility to control the ego every day, so I guess that's why most of them don't. Plus they get paid loads of cash.

Personally, always found it odd that while nursing is considered a 'caring profession', medicine isn't.

Perhaps a third opinion is in order.

Puss

heartinsanfrancisco said...

Puss,

Your point about doctors seeing people when they're weak is brilliant. "In the land of the blind, a one-eyed man is king."

I found another promising neurologist who specializes in memory problems whom we'll be seeing in November.

Thank you for your insight and your visit.

Parlancheq said...

A third opinion is in order, for sure!

As to the question by Seventh Sister, yes, there is a way to get info about the drug company doing the trials. Really, the doc should tell you if you ask and the info is also generally in the study informed consent documents. Or, go to www.clinicaltrials.gov and search on Alzheimer's, and refine by location or other characteristics you know to match the info you have to the studies listed. I am not sure what knowing the drug company adds since all the big Pharmas are equally evil (ha!), but the info is out there. (Email me if you need more info; Alzheimer's is not my area, but I do work in Pharma research.)

Hang in there.

katrice said...

O to find a doctor who's motivated by patient care! Many hugs and prayers to you and Flip.

heartinsanfrancisco said...

Parlancheq,

Thank you for all this information! I will make a note of it in case the issue comes up again, although we are not going back to Doctor #2.

Sigh.

I think there's a fine line between evil and so focused on ones own agenda that the humanity is lost.

Katrice,

Your hugs and prayers went to a very good home. Thank you!

NoRegrets said...

You seriously should feel comfortable with whatever doctor you are working with...and it may take some work to get to one... All the best... NoR

heartinsanfrancisco said...

No Regrets,

Yes. And YES! It's the least we can hope for.

Thanks for your good wishes.

nmj said...

hey heartinsanfran, i haven't been for a while and am so sorry to read about flip having alzheimer's - your instincts about this doctor seem completely right - the only drug i know about is aricept which i understand was being used in uk for a while, i think now you can only get it on private prescription - i volunteered in this area for quite a few years, and also my 48 yr aunt old has been diagnosed, so i know a little of what you are going through. i wish you both all the best, NMJ

heartinsanfrancisco said...

Nmj,

So good to see you again! You must be really busy with author signings these days. !!!

Flip tried Aricept but it caused painful foot and leg spasms, a common side effect. He is on Namenda which is supposed to slow it down but the drug houses cover their bums by stating that any results won't be evident for 6 or 7 years. Since there are no side effects that we know of, it can't hurt.

So sorry about your aunt. She's about the age I think it started for Flip - very precocious.