Dr. Wii?

Had a thought about the Wii. Maybe doctors should invest in them? There are so many balance and strength exercises on the Wii fit that include graphs to show your balance for each leg. Messages even pop up while you excercise,with comments like " I notice your left leg is a bit shaky", right on for me. My left leg is the weak one . It's interesting to look at the graphs and compare my right leg, which charts as fairly stable, and my left, which strays all over the graph.
I do better on certain ones, such as the warrior pose in yoga, although once again, the Wiii notices that my left leg is not as strong.

I thought this would be a fun, easy way, for doctors to test a patient's balance and perhaps a therapist could recomend certain excercises ? The board would be disinfected after each use, or cotton, non slip, socks could be worn. Cetainly would be more enjoyable than the typical test they make you do like walking in a straight line, heel to toe (I hate that one) or closing your eyes while standing and the doctor pushes on you.

I don't get Blogger, it seems to do some half wit spell check . Red lines under correct words and none under real obvious mistakes.

Have had a set back with my leg. It's really stiff and swollen tonight. I thought it was getting better but I think it's just the pain killers fooling me.

3 Forward 2 Back

Had my visit with the doctor this morning. Things are stable right now, although he did say a couple of times that I was an anomaly and something about my leaky blood brain barrier. My EVP tests are slightly below normal, there is protein in my spinal fluid, no change in my MRI, and I have the same proteins in my blood. He said that he didn't think I needed any heavy drugs like interferons. I told him that honestly I wouldn't be interested in doing that anyway and he seemed relieved . I don't know maybe some patients insist on it.
The strategy for now will be to monitor things , treat individual symptoms, and see how it goes.
He also said he would send another letter to my employer about allowing me to tele work, due to my continuing problem with fatigue.

I left feeling not too bad and walked the 15 minutes back to work taking a short cut through the mall, to get out of the cold and wind. Decided to treat myself to a new sweater that was 50 % off. The stores already have pretty deep discounts on things . The mall was busy but I notice people are shopping mostly in the cheaper stores. The dollar store was doing booming business.


Then I get into the office just in time to hear the latest news. The government is proposing to freeze our wages, roll back our current increases, and take away our right to strike.

I made a joke that it was just like working at Wal Mart.

Congratulations From A Cynic

Congratulations to America! Haven't got much to say about it ,as I'm very cynical about politics and politicians.
The new President is a man, not a God, and he's a politician. Sadly, due to the reckless policies of the current U.S. administration, the new President will not be able to keep many of his promises.

America, is bankrupt. There was never any money for health care, infrastructure, or education, but suddenly tons of cash was available for the private sector, from a government already heavily in debt . Now there really won't be any money for health care, infrastructure, etc. etc. Cynical ? you bet , and I'm not the only one
and this guy , who is extreme, and slightly mad, but I do love his column

I'm not letting my own country off the hook or the rest of the world. We were all of us blind greedy fools , and now the party is over. The hangover will take a very long time to recover from.

Maybe I'm just cranky, as this week isn't going so great . I'm home again today exhausted and in pain . The doctor's office called on Monday, to set up an appointment for November 28th. Usually when there's good news, the doctor calls me himself. I can only guess that he found something interesting in my spinal fluid and wants to tell me in person. Not that he's going to say anything I don't already know. I'm well aware of what's happening to my body and brain and there ain't much he, or I, or anybody, can do about it . There's no miracle drug out there for me ( including the latest find, alemtuzumab).
From now on it's all about preserving what I've got and making the most of it while I can. I'm cool with that.
The cable guy is coming over this evening to move the modem. I'm looking forward to having a newer faster computer( see all past posts on computer and tech woes)

The Last Test

Today I had the last of the tests, a lumbar puncture, which was no big deal. I had a reaction to the freezing. Everything was going fine and suddendly I felt so hot and faint. Luckily I was sitting on a bed so the doctor had me lie back for a few minutes. I sat up again and he finished taking the sample. .When he was done I felt faint again and was sweating like crazy . I've always been a fainter. My astrology friend tells me it's a Libra trait

I was pleased when they took a blood sample, in that the nurse took it from the top of my right hand instead of in my arm. It's so much more comfortable that way. After wards I had to lie there for about an hour just to make sure I was no longer wobbly. The doctor came back to check on me and then told me to go home and take it easy.

My doctor is a great guy .I'm so in love with him. Before he did the test he sat down and had a talk with me . It's a good feeling to have a doctor who actually listens . (No not THE Dr. Who, although I wouldn't mind if he were my doctor) . His voice is so soothing and I really do believe that he cares. Once the tests results are in he's going to suggest treatments (read drugs) he already knows that I''m not a believer in the MS drugs so it will be interesting to find out what he has in mind. He's pleased that many of my symptoms have calmed down but is still concerned about the fatigue and cognitive issues.

I also have to compliment Hamilton General hospital. The staff are friendly and professional.
It comes a close second to St. Mike's in Toronto . The only thing that is the same at Hamilton General, like all hospitals, they have lousy signs ! Trying to find your way around is like a maze.

Not much else to comment on . We have another Conservative minority government, which means most likely another election soon. The Greens didn't make any headway even with Elizabeth May taking part in the debates.
I haven't been watching or reading the news much, as all they talk about is economic doom and gloom.

I feel pretty good More positive than I have felt in a long while.

Not Bad Day, Bad Day

Ahhh Save me from the cell phone company with there 10 page bills that you need a PHD in telecommunications to figure out. I spent another hour on the phone trying to get this one sorted. After being told about ten times that it was my long distance that was a problem turns out it isn't so. It's my day time minutes allocation! What crap nonsense. I tell you, cell phones are a racket and I will never sign up for a plan ever again . I'm giving it one more month and if it's the same mess; I don't care how much it costs to get out of the contract I'm canceling and going back to pay as you go.

Yesterday I wanted to do a drug update as it's been three weeks since I started taking Amantadine. Then my internet went funny and was never very good all day. Something outside, I don't know what, was disrupting the wireless signal . I decided to busy myself with chores and errands. The plan was that I would get all caught up and then maybe go for a swim at the Y today. Well, I got up this morning feeling like a train wreck and still feel pretty lousy now.

I don't know if I'm ever going to get the hang of this MS business. I didn't think I was pushing myself too much on Saturday, compared to what I use to accomplish (pre MS). I suppose it didn't help either that when I went out in the afternoon the weather was hot and humid and I really was over dressed for that. Last night I went to bed and my left leg was acting up again with odd pains,tingling, and some twitching, making it hard to settle down and get to sleep.
Things that I can ignore during the day are impossible at night.

As far as the drugs go I can say the Amantadine, does work to a degree . I'm a wreck today, but not a zombie brain dead wreck .

On October 2nd I have my appointment with the Health Canada doctor. Finally ! I got a letter on Friday from our medical officer at work confirming it . The only thing that bugged me was
the letter says he received more medical information that allows them to proceed with the assessment . What the heck does that mean ? If the recent tests I've had revealed anything I'm sure my doctor would have let me know, since he does do phone calls. Well I'm not going to waste anymore precious brain cells worrying about it. All I have to do now is prepare. I'm going to review my blog and write down all the symptoms I've talked about over the past few months. Hey this blog is turning out to be useful !
I'm also going to write down what I think my needs are and what the duty to accommodate should include. If I bring that information with me I won't have to worry if I'm having a bad, brain dead day . I'm also going to get in touch with a couple of people who have been through this already to get an idea of what happens at these meetings.

That's all I can do, the rest I have to leave to fate.

Yes, I'm a fatalist in the sense that I believe I do have some control over my destiny, but there are always forces outside of me that I can't control.

Amantadine

Starting my drugs tomorrow morning. Amantadine. Funny thing is I already have a bottle of these pills. The last doctor I had prescribed them. I didn't trust him which made me suspicious of anything he recommended. How can you trust a doctor who makes you sit around waiting for an hour and then when you finally do see him he barely has five minutes to spend with you ? And of those five minuted is busy shuffling through your file because he can't remember you.

My new doctor spends lots of time talking to me and even phones ! OK doc I trust you so I'll try this stuff. The side effects are mild at least, except I'm not thrilled about possible insomnia or constipation. I already have enough trouble sleeping.

Yes, if I could have one wish it would be to sleep through the night. I'm not greedy, six hours would do me fine.

Question: How many new blogs are started every day ? 7,000, 30,000 120,00 ?
Answer tomorrow.

Dinosaurs, and Doctor Patient Rules

Here's a couple of pictures from the museum trip this past weekend. The columns are in the subway station called Museum, which is a big improvement. It use to be such a grey ,dismal,
unwelcoming station.
Can't get my head around the creationist idea that humans and dinosaurs existed side by side The guy above looks like he would have enjoyed us as snacks.


Feeling a little better tonight. The plan is to get to work tomorrow Just have to see how things go in the morning.

Here's a blog I ran across in the New York Times health section by Dr. Rob. Read his six rule for doctors and patients. Yeah maybe in a perfect world or alternate universe.

Prescription Data and Insurance Coverage

Interesting article in the Washington Post . Now Insurance companies can find out your prescription and lab test history, to increase or deny you insurance. It's like a health credit rating.
Consumers should be wary of this. It's fast and cheap to do and you can be denied insurance based simply on what drugs you take and how often. It can also be used to limit the amount of tests you have done.
This applies to U.S. residents however, anyone in Canada who has additional insurance for costs not covered under the health care plan of your province, should be concerned as well.

If insurance companies thinks it's a great idea, it's because it benefits them , not you.

Got an email back from the sleep clinic. Have to be referred by my family doctor and appointments are made based on that referral . I'll be taking him the form next week.

Birthdays and a Clinic

No internet all day today. Funny I didn't care.

Three big birthday bashes this week : Canada, U.S.A , and Quebec City, all celebrating. Good article about them in the New York Times today.

Quebec having the biggie, 4oo years since it's foundation. My mother claims direct lineage to the original settlers. We did go to a big family reunion when it was the 375th anniversary and I have a book showing the genealogy. I laughed when I heard on the news it was raining in Quebec, only because every single time I've been there it's rained ! We are too many of us wrecks to have done the trip this time. It's also sad that so many of the family that were at the last party are gone now.

Went to the walk in clinic today to get a prescription for skin cream renewed. Have itchy red fingers again. Stressed related ? The place was empty so I got to see a doctor right away.

The receptionist handed me a list of family doctors who are accepting patients and advised me to get one. Why should I go to a doctor an hour from home when the clinic is around the corner? Besides, I find the idea of a family doctor is a bit out dated. It's not like when I was a kid and they actually made house calls. Now they order tests and hand out prescriptions just like the clinic does, and there's nothing very " family" about it. The only doctor who clued in that I might have MS, was the guy at the clinic . He ordered my first MRI. Compare that to my mother's GP, who told her her pains were in her head and she ended up needing emergency gall bladder surgery!

When I saw the doctor he repeated the exact thing the receptionist said, so maybe the Health Ministry is making them do it . I know the media keeps going on about how many hundreds of thousands of people don't have a family doctor. I'm sure many are like me and don't care.
I think it embarrasses the government though.

Have a great 4th my U.S friends. I"m going to watch the Boston fireworks in high def !

Roller Coaster

Another cloudy rainy day . Things started out not so great and are now this evening pretty good. I've had the twitches the last couple of nights and tingling . Will I ever get use to the roller coaster ride ?

I'm going on my trip after all ! In July, the hottest month, but I don't care. I feel so much better about things since my doctor visit. Now I think I can relax and enjoy myself a bit.

Had to pay $8.00 for a registered letter today that is only going a few blocks from home. It's a copy of the letter from my doctor requesting a medical accommodation for me, plus some other medical documents that I want my work manager to review. I also mentioned in my covering letter that I never heard from Health Canada regarding a review of my case. Another thing that didn't get done because I bet the request is still sitting on a desk somewhere .

You can't just drop off a letter at the office. It has to go in the box with all the rest of the mail . That would give them the excuse that they didn't get it and delay things even more. Pretty sad when you can't trust anyone. So I spent the money to force them to acknowledge the letter and give me some documentation in case I need it later.
It made me think about work all day too. I have to put it out of my mind and go back to vacation mode.

I see Montel Williams is having another gambling fund raiser for MS. Is that all he's good for now ?
Here's a couple more flower snaps from last weekend. I notice the day lilies are beginning to bloom in front of my house . I'll wait till there all open and take a few pictures of them.

Doctor Love

Oh ! I think I'm in love with my new doctor. Well maybe it's a crush, although when he asked what could he do for me I was tempted to suggest the two of us run off together. No, instead I asked him to help me with my work situation. He agreed that a medical accommodation would be right and he will prepare a letter stating that. I'm sure my boss will hum and haw about it not being on official forms, but at least it's a start.

What a difference compared to the other neurologist who was always so rushed and preoccupied. This doctor listened to me and actually seemed interested in what I had to say. It didn't even bother me when he talked about more tests , injections, and symptoms. I even let him touch my feet and I hate having my feet touched !

No injections for me yet. I have to go for another MRI, blood tests, and another EVP. The doctor did mention that the response in my legs when he did a test was not as good as he would have liked, but said not to worry. OK doc I won't worry because I have faith in you and I love you .
Got to the lab too late for blood tests so I'm going to the hospital tomorrow to get that done
Won't the lab vampires be happy. I feel pretty good so I don't mind. Ain't love grand ?

What to Do ?

Read an interesting article today in the New York Times about Lotus Therapy, aka Focused Awareness , aka Mindfulness. This is a new psychiatric therapy you can read about here and make up your own mind.

After reading this I was really bugged; not by whether the therapy works but by the doctors. ( of course) One specialist saying it's the best treatment for mental disorders, another saying no it makes things worse. Then there's the doctor who says it works, but only for severe cases, and another who says the opposite, no its only good for mild cases.

I get the impression that nobody in the health care profession is interested in what is right. That ego gets in the way of patient care. There's no cooperation to find solutions , only competition to push their own agenda.

Then we have the poor soul, the patient , a person suffering from anxiety disorder or severe depression who goes to one of these specialists. Say they get the doctor who thinks it's the best therapy ever. The patient tries it and feels no better. The doctor always has an out . The doctor can say" Oh you just didn't try hard enough or" you didn't follow the instructions" but maybe that isn't so. Maybe in fact the treatment doesn't work. Maybe the poor soul, the patient, will get the doctor who doesn't believe in this treatment and yet it could be the best thing ever.

So what do you do ? Drag yourself from one doctor to another until you get the right therapy , the one that works ? What really works ? Will these doctors ever get their act together and try and find solutions and do what they're supposed to do .Help patients get well. Sure our health is our responsibility. We should inform ourselves to make decisions about our health to make the right choices. Not so easy when you are so depressed , busy thinking of ways to do yourself in, or you have such bad anxiety you're afraid to go outside.

Placebo and the Power of the Mind

OK. My excuse for posting links instead of writing my own stuff is that my tooth is still bad.

An interesting subject the placebo effect , and the power of our mind.

My son tipped me to this article in The Independent, about the placebo effect .

Antidepressants : Spot the Difference

Makes me wonder if my distrust of doctors and drugs is holding me back .


"Bizarrely, passivity is the key to a strong placebo response. Put yourself in the hand of a powerful individual and trust them to do you good. Small wonder that witch doctors have wielded such therapeutic power. "The less involved you are in actively thinking your way through a process, the more likely they are to have a good response," says Dr Kradin. "If one gets very active in controlling the disease, in my experience, it can have negative effects. It's exactly what healing used to be like in the past. The faith that people had in their physician was a critical part of their healing."

Here's the book . (Not cheap)


Another very good, although I found it a bit nerdy; article on the same subject .
How sad that doctors have never exploited the power of faith.

The Placebo effect


And the more it costs the more you believe in it . When I was at the pharmacy getting antibiotics, the woman ahead of me was very upset.The pharmacist said she had to get the generic brand of the drug she needed because her drug plan wouldn't cover it otherwise. She insisted that only the name brand one worked and left in a huff.
I have to admit I always buy Advil , even though I know the store brand Ibuprofen, is the same.

Now if I could just find a doctor I really, truly, trust. Maybe this guy I will see in June will be the one.

Medical stuff

Good story in the New York Times today " Financial Ties are Cited as Issue in Spine Study"
About doctors who have investments in medical companies and also do research for them.
Also mentions how negative clinical trials are suppressed, or altered to give them a positive spin .

Learned about "Alexithymia" : the inability to express emotions with words. I read a research abstract about it and it's relation to fatigue in MS. I suppose when you are fatigued in that unique MS way it might be difficult to express what you're feeling. For me it's the opposite. I express my emotions too much .
Dis inhibition: Yeah that's me. Get too angry , too sad, and other things I'm embarrassed to mention even in my own blog . Imagine that .

dizzy day

A dizzy day. I keep having this feeling that the floor is giving out underneath me. Wednesday I have an appointment with the doctor to get forms filled out for my medical accommodation .
4 pages of questions and it's going to cost me $80 ! I'll get reimbursed but I don't even care about that ,I just want it over and done.

What's driving me crazy is I never know if what I'm feeling has to do with the MS or something else. I read and article that a very small percentage of MS' ers have fits of uncontrollable laughter or can experience a state of euphoria . That doesn't sound so bad to me . I guess it would be awful if it happened at an inappropriate moment , like at a funeral. I'm not trying to be clever. It really would be awful .
Tomorrow there's going to be an article in the Toronto Star about the dangers sleeping pills and tranquilizers. Look forward to reading that ,me being such an anti drug person.