New Years Resolution

Well tis come that time of year again when we think about what fool hardy ridiculous idea we come up with for a New Years Resolution.  And being a fool hardy brainless person I have decided to do just that. So here are my list of suggestions:-

1. Lose weight- Yeah like that's ever going to happen.  Anyone that has ever taken long term prednisolone will know what I'm talking about.
2. Exercise more- For someone who has a peripheral nerve problem, I exercise plenty thank you.  Next!
3. Stop drinking coke- No way!  You've gotta have at least one vice in your life and that is mine.  With a heavy year coming up (SCT and all) I'm going to need all my creature comforts.
4. Give up smoking- Seeing as I don't smoke this one may be a little too easy.
5. Have an AFJ (alcohol free January)-  Now that's just silly.
6. If I can't lose weight at least get in shape-  I am in shape.  Round is a shape.  If you don't believe me ask a five year old.
7. Do something dangerous-  Does SCT count as dangerous?
8. Learn a foreign language-  I hated languages at school so no.  Besides I will be in Chicago for three months so I'll probably learn to speak American while there.

But I think the winner would have to be for me to go back to school and train to become a surgeon.  I mean how hard can it be?  I've watched Grey's Anatomy.  Scrub hands, cut here, sew there, perform carnal sins in a store room and job done.  I've even picked up this required reading for Dodgy Bros Medical School:-

Ok.  If you haven't figured it out yet, I'm joking.  Seriously, I think that my new years resolution will be to make sure I drink at least three litres of water a day to help battle the old kidney stones and seeing as though I have had such amazing feed back on my blog (and I enjoy writing it) to keep posting regularly.  

Well, this will be my last post for 2011, so I hope you have a very happy new year and a healthy and rewarding 2012.  Stay well:)

Passive Smoking

Last night I was watching TV and I saw this segment on a man that was attempting to sue his neighbours for passive smoking.  The poor man, a 59 year old fitness fanatic had been diagnosed with lung cancer.  Having never smoked a cigarette in his life, and after ruling out all other potential causes, the most likely cause was from passive smoking.  More to the point, passive smoking from his neighbours in an adjacent apartment.  You can see the segment from the Australian current affairs show 'Today Tonight', here.

Personally, I am a huge advocate of non smoking, but in this case I find myself extremely conflicted.  I also believe in freedom, and right or wrong, people should be able to make their own decisions.  Your choice to smoke should be your own decision.  It's a decision I don't agree with but if you want to kill yourself slowly and die a slow and painful death, go right ahead.

However, on the flip side I do also believe that people who don't smoke have the right to protect their health and live in a smoke free environment.  So here is the conundrum.  Both sides have the same argument.  An individuals right to smoke versus an individuals right to protect their health.  It's all about personal rights.

Here in Australia there is a strong persuasion towards the latter.  It is now illegal to smoke in pubs, clubs, public buildings etc.  There is a strong push to ban smoking in outdoor areas as well, and you can't smoke in a car with children inside.  But if you are over 18, it is legal to smoke, the question is where?  And if you can't smoke in your own home, where can you smoke?

If a smoker as an individual asked me for an answer my advice would be to quit.  There are plenty of products, organisations and individuals that can assist you in quitting.  Not only do you decrease the odds of being sued, the health benefits are undeniable.  However, as a group the answer is not so simple.  Some people are bound not to want to quit, and others simply won't.

So what do we do?  Lock people up in secluded rooms to partake in their addiction, similar to the Kings Cross heroin injecting room?  Have designated 'smoking' apartment complexes like we do hotel rooms?  Smokers need somewhere to smoke, or the government should just make it illegal.  In my own opinion, I like there being huge restrictions on smokers.  As a non smoker I do enjoy a smoke free environment and the benefits that I and my children receive to our health.

But I also respect other peoples rights to make their own choices, right or wrong.  I guess what we need to do is find a way for people who want to smoke be able to smoke without harming others.  It's a tough one.  Until next time, stay well:)

If you smoke and want to quit, there are many options available to you including seeing your GP, calling quit line on 137848 (Australia only) or visit www.quit.org.au.

Global Genes Project

Well 2011 is drawing to a close and I have a great idea to help you finish 2011 on a good note.  Click on the link below and then click 'like' to help support the 'Global Genes Project'.  It will take you less than 10 seconds, and yes.  That is a challenge!

http://www.facebook.com/globalgenesproject

For more information you can see my previous post here.  Stay well:)

Time to follow doctors orders.

A Look Ahead

A blog that I like to read is a blog called DrWes.  Dr Wes, or Dr Westby G Fisher is a cardiologist based in the USA.  His posts are nothing amazingly cutting edge or controversial, bud I really enjoy his writing style, and I could only imagine he would truly bring a sense of 'theatre' to the operating theatre.  (In a good way of course)

What I would like to do today is draw your attention to his latest post also titled "A Look Ahead".  Here he looks into his crystal ball and predicts what changes are in stall for the world of medicine in 2012.  Now, he lives in the USA and I live in Australia, so I am not up on some of the finer detail of the post, but there are three main points that I feel transcend both our countries.

First, there is way too much bureaucratic BS.  Did you know that in Australia 50% of all medical funding is wasted on bureaucracy and administration.  That's half!  If I ran my business that way, I would be out of business.  Dr Wes also talks about how doctors are getting tied down with mandatory administration, instead of treating patients.

In Australia, I believe a massive and complete overhaul of our medical system is required.  Instead of each state having their own health system, completely independent of each other, I believe we need one national system where accountability is maximised and bureaucracy is minimised.  Julia Gillard just released what she called the biggest reform to Australian health since Medicare.

What a load of rubbish!  In my opinion she bent over backwards to give the state governments what they wanted so they could continue to indulge in their own self importance at the tax payers expense.  When Kevin Rudd was PM at least he threatened to pull power from the states, but Julia, you seem more concerned with staying in office (an undemocratic one at that) than doing what is right by the country.

Second, health care would be pushed down to a less qualified person.  This is a toughie.  We have an aging population and more treatments for more diseases are being unearthed, which puts more pressure on the medical resources we have at hand.  I do have suggestions for this one but they are long and another blog I will write later.

Lastly, the third point he makes is very positive.  The advent of social media in medicine.  Patients have never been quite as well informed as what they are now.  Information is at your finger tips and social groups make it easy for patients to talk on line to help find answers, compare notes and share suggestions. It has never been quite as easy for patients to take control of their own health care.  Dr Wes rightly looks at this as a positive.  Many doctors wouldn't.  Like it or not, this technology and the internet are here to stay, and all medical professionals need to embrace it.  Until next time, stay well:)

Celebrating?

If you read my post entitled Bring It!!!!!!  before Christmas, you would be aware of my good news.  So am I celebrating.  Well, I am happy, but there are two things that are playing on my mind that are keeping the champagne safely locked away in the fridge.

I am happy because it is the news that I wanted and I worked hard to get.  But it is by no means a fait de compli.  I still have to consult with the doctors and they do have power to veto and I still have a couple of tests to complete and they are fairly important.

Also, there is the fact that if I am accepted into the program it won't be a picnic.  I will be in for three really hard months.  I have a week of high dose chemotherapy which will be used to destroy all my immune system.  It will do this by wiping out all the white blood cells in my body.  That kind of process cannot exactly make one feel all peaches and cream.

So I don't want to get ahead of myself.  These days I am forever conscious of my mental health and either situation I find myself in (and it will be one or the other) will challenge me in this area.  I have to be extremely aware of this right now, because if I am not it could really come back to haunt me later.

However, I don't want to just surround myself in doom and gloom.  I'm not doing this for the negative.  I am doing this for the positive.  I also have to think about the reasons why I am doing it, and that is for the benefits that I will receive a year from now and beyond.  To go for a run, to play with my kids in the back yard, to play sports, get and stay fit, to walk bare feet, to arrest the nerve pain etc, etc.

Well that's it from me for now, until next time, stay well:)

Life is for the Living

When your sick it is easy to put all your energies into getting well or let the disease dictate to you how to behave.  I have to say I have been guilty of this in the past and I probably will be again.  But especially at this time of year, it is really important to remember that life is for the living and one needs to get out there and do fun stuff and hopefully forget about your problems.

Today is boxing day, and for me being an Aussie that means one thing.  Cricket.  This year we have the Indians touring and I will be sitting down in front of the TV in half an hour to watch what will be hopefully an enthraling encounter.  This comes off the back of a wonderful day with family and friends.

I have actually been thinking a lot about things I want to do recently as I will be going to Chicago in just under two months.  From that point on I will be out of action for at least six months.  Between now and then there are heaps of things I want to do.  I don't know if I am going to be able to get them all done, but it will be fun trying.

For now, COME ON AUSSIE!!!!! Except for Tendulkar.  Would be great to see him get his 100th 100 here in Australia.  Stay well:)

Merry Christmas!

Afrikaans: Gesëende Kersfees
Afrikander: Een Plesierige Kerfees
African/ Eritrean/ Tigrinja: Rehus-Beal-Ledeats
Albanian:Gezur Krislinjden
Arabic: Idah Saidan Wa Sanah Jadidah
Argentine: Feliz Navidad
Armenian: Shenoraavor Nor Dari yev Pari Gaghand
Azeri: Tezze Iliniz Yahsi Olsun
Bahasa Malaysia: Selamat Hari Natal
Basque: Zorionak eta Urte Berri On!
Bengali: Shuvo Naba Barsha
Bohemian: Vesele Vanoce
Brazilian: Boas Festas e Feliz Ano Novo
Breton: Nedeleg laouen na bloavezh mat
Bulgarian: Tchestita Koleda; Tchestito Rojdestvo Hristovo
Catalan: Bon Nadal i un Bon Any Nou!
Chile: Feliz Navidad
Chinese: (Cantonese) Gun Tso Sun Tan'Gung Haw Sun
Chinese: (Mandarin) Kung His Hsin Nien bing Chu Shen Tan
Choctaw: Yukpa, Nitak Hollo Chito
Columbia: Feliz Navidad y Próspero Año Nuevo
Cornish: Nadelik looan na looan blethen noweth
Corsian: Pace e salute
Crazanian: Rot Yikji Dol La Roo
Cree: Mitho Makosi Kesikansi
Croatian: Sretan Bozic
Czech: Prejeme Vam Vesele Vanoce a stastny Novy Rok
Danish: Glædelig Jul
Duri: Christmas-e- Shoma Mobarak
Dutch: Vrolijk Kerstfeest en een Gelukkig Nieuwjaar!
or Zalig Kerstfeast
English: Merry Christmas
Eskimo: (inupik) Jutdlime pivdluarit ukiortame pivdluaritlo!
Esperanto: Gajan Kristnaskon
Estonian: Ruumsaid juulup|hi
Faeroese: Gledhilig jol og eydnurikt nyggjar!
Farsi: Cristmas-e-shoma mobarak bashad
Finnish: Hyvaa joulua
Flemish: Zalig Kerstfeest en Gelukkig nieuw jaar
French: Joyeux Noel
Frisian: Noflike Krystdagen en in protte Lok en Seine yn it Nije Jier!
Galician: Bo Nada
Gaelic: Nollaig chridheil agus Bliadhna mhath ùr! German: Froehliche
Weihnachten
Greek: Kala Christouyenna!
Hausa: Barka da Kirsimatikuma Barka da Sabuwar Shekara!
Hawaiian: Mele Kalikimaka
Hebrew: Mo'adim Lesimkha. Chena tova
Hindi: Shub Naya Baras
Hausa: Barka da Kirsimatikuma Barka da Sabuwar Shekara!
Hawaian: Mele Kalikimaka ame Hauoli Makahiki Hou!
Hungarian: Kellemes Karacsonyi unnepeket
Icelandic: Gledileg Jol
Indonesian: Selamat Hari Natal
Iraqi: Idah Saidan Wa Sanah Jadidah
Irish: Nollaig Shona Dhuit, or Nodlaig mhaith chugnat
Iroquois: Ojenyunyat Sungwiyadeson honungradon nagwutut. Ojenyunyat
osrasay.
Italian: Buone Feste Natalizie
Japanese: Shinnen omedeto. Kurisumasu Omedeto
Jiberish: Mithag Crithagsigathmithags
Korean: Sung Tan Chuk Ha
Latin: Natale hilare et Annum Faustum!
Latvian: Prieci'gus Ziemsve'tkus un Laimi'gu Jauno Gadu!
Lausitzian:Wjesole hody a strowe nowe leto
Lettish: Priecigus Ziemassvetkus
Lithuanian: Linksmu Kaledu
Low Saxon: Heughliche Winachten un 'n moi Nijaar
Macedonian: Sreken Bozhik
Maltese: LL Milied Lt-tajjeb
Manx: Nollick ghennal as blein vie noa
Maori: Meri Kirihimete
Marathi: Shub Naya Varsh
Navajo: Merry Keshmish
Norwegian: God Jul, or Gledelig Jul
Occitan: Pulit nadal e bona annado
Papiamento: Bon Pasco
Papua New Guinea: Bikpela hamamas blong dispela Krismas na Nupela yia i
go long yu
Pennsylvania German: En frehlicher Grischtdaag un en hallich Nei Yaahr!
Peru: Feliz Navidad y un Venturoso Año Nuevo
Philipines: Maligayan Pasko!
Polish: Wesolych Swiat Bozego Narodzenia or Boze Narodzenie
Portuguese:Feliz Natal
Pushto: Christmas Aao Ne-way Kaal Mo Mobarak Sha
Rapa-Nui (Easter Island): Mata-Ki-Te-Rangi. Te-Pito-O-Te-Henua
Rhetian: Bellas festas da nadal e bun onn
Romanche: (sursilvan dialect): Legreivlas fiastas da Nadal e bien niev onn!
Rumanian: Sarbatori vesele
Russian: Pozdrevlyayu s prazdnikom Rozhdestva is Novim Godom
Sami: Buorrit Juovllat
Samoan: La Maunia Le Kilisimasi Ma Le Tausaga Fou
Sardinian: Bonu nadale e prosperu annu nou
Serbian: Hristos se rodi
Slovakian: Sretan Bozic or Vesele vianoce
Sami: Buorrit Juovllat
Samoan: La Maunia Le Kilisimasi Ma Le Tausaga Fou
Scots Gaelic: Nollaig chridheil huibh
Serb-Croatian: Sretam Bozic. Vesela Nova Godina
Serbian: Hristos se rodi. Singhalese: Subha nath thalak Vewa. Subha
Aluth Awrudhak Vewa
Slovak: Vesele Vianoce. A stastlivy Novy Rok
Slovene: Vesele Bozicne. Screcno Novo Leto
Spanish: Feliz Navidad
Swedish: God Jul and (Och) Ett Gott Nytt År
Tagalog: Maligayamg Pasko. Masaganang Bagong Taon
Tami: Nathar Puthu Varuda Valthukkal
Trukeese: (Micronesian) Neekiriisimas annim oo iyer seefe feyiyeech!
Thai: Sawadee Pee Mai
Turkish: Noeliniz Ve Yeni Yiliniz Kutlu Olsun
Ukrainian: Srozhdestvom Kristovym
Urdu: Naya Saal Mubarak Ho
Vietnamese: Chung Mung Giang Sinh
Welsh: Nadolig Llawen
Yugoslavian: Cestitamo Bozic
Yoruba: E ku odun, e ku iye'dun!.

Apologies if I missed anyone.  Stay well:)

My Top Ten

Reading through some other peoples blogs I noticed that a popular thing to do at this time of year is to list your top ten favourite posts.  Although I do enjoy originality, some times it is just fun to follow suit.  So here goes:-

10. A Big Shout Out to All the Mums and Dads
Made it in at number ten because it really tugged on my heart strings as I wrote it and still does when I read it.

9. To Immunise, or not to Immunise?
I really hope this got people thinking and making an informed decision.  Also the more I research, the more of an opinion I develop.  I will share it with you in 2012.  Stay tuned folks.

8. Cure for HIV?
One of the better research pieces I think I've done.

7. I Feel Like I'm in Purgatory
I like this post because it really helped me explore how I felt and allowed me to process my emotions.  I think it also drew a line in the sand between where I feel patient responsibility and doctor responsibility lies.

6. The Stem Cell Debate
Never have I written a post that has inspired such passionate debate.  I am still an advocate of embryonic stem cell research.  I will talk more about it in the new year.

5. Lawyers, back off!

If every lawyer in the world suddenly dropped dead, would we be worse off?  I think not.  Patient treatment decisions should be decided by an honest and open discussion between patient and doctor.  NOT lawyers.

4. Time to Stick it to The Man!
This was probably the most defining point in my year.  When I decided enough was enough and it was time to enrol in the SCT program at North Western.

3. It's All in Your Head

I believe that this technique has the potential to stop a lot of people from suffering.  It worked for me, I hope it does the same for others.

2. Global Genes Project
There are so many people suffering from rare diseases.  Singularly, most of them struggle to be heard in  world of many disorders.  Together, they have a very loud voice.  A great cause.

1. My Number One Rule!

If you only learn one thing from reading my blog, make sure that this is it.  Healthy or sick you'll be better off for practising it.

Well, that is my top ten as voted by me.  Would love to know if you agree, disagree, think I've missed a good one etc...  Until next time, stay well:)

Bring It!!!!!!!!

The e-mail I received today regarding SCT.  Looks like I'm off to Chicago!

Hi Andrew,

I went over your test results and all looks ok.  Dr. Burt said to set you up to come for hopefully the transplant!

I will have Arlene Dr. Burt’s assistant schedule the rest of the tests, lab work and physician visits starting February 20^th.  I will give you a final copy of the schedule and calendar when Arlene is finished.  She will be setting you up to see Dr. Burt, Dr. Allen(neurologist) and a transplant infectious disease doctor to be on board prior to transplant to help safely take you through without any infections to your DBS.

I do not think I ever go the report of your MRI of your brain and spine that you had done prior to the DBS.  Would you please send me that report.  Do you know the company of your DBS?  Or have their website?

The hotel that many of our patients stay in is called the Seneca hotel.  A contact person there is Mike Foster.  You can email him at XXXX

IVIG is very expensive but I am assuming you need to continue your IVIG as scheduled prior to transplant.  So I would plan for you to receive your IVIG the Friday before coming here 2/17 and then you will only need it 1 time hopefully while you are here in Chicago.  I will plan for your dose to be given to you on March 19^th at the hospitals infusion center.  Do you know what brand you receive?  Any pre-medications?  Do you have a line or do you usually just have an IV placed? 

The medications that you will need as an outpatient during this process include:

Ciproflaxicin 500mg BID #14

Diflucan 200mg BID #14

Zofran 8mg #20 you will take these if you are nauseous. 

Norco 5/325 tabs #20 you will take these if you are having pain

Neupogen is based on your weight so if you can tell me how much you weigh, I will give you the dose.  This medication is very expensive, so it will be important to bring with you. 

So if you can bring any with you it will most definitely save you money. 

OK, I will follow up next week. 

Happy Holidays!!!

From the Ashes Comes the Pheonix

Surfing the internet recently I came across this very interesting article on how innovations to health care have come out of war.  Personally I feel that medical innovation is no excuse to have a war, but if you are going to have one, any good that can come of it is a good thing.

It did however get me thinking about what other atrocities may have lead to proper therapeutic medical treatments that may add quality to peoples lives.  So that lead to the try and find the answer to another question I had asked myself in the past.  How did they figure out that DBS could help pacify movement disorders?

I mean it's not like someone simply said "lets stick a needle into someones brain, connect it to a car battery and see what happens?"  No ethics committee or patient in their right mind would agree to that.  So I did some digging.  DBS was clearly a natural progression from other brain procedures like a thalamotomy, which involved destroying a specific part of the brain to arrest a selected movement disorder.

But where did the thalamotomy come from?  Now I have a theory, but I have not got any evidence to back it up, so you are welcome to agree or disagree, call me full of $%#&, whatever.  But I have been thinking about it and I would like to share.  My theory is that the origins of the thalamotomy were born from the lobotomy.

Now I have no evidence to back this up , but if you were a doctor pioneering thalamotomy or DBS would you want your work being linked to lobotomies?  Over all, about 40,000 lobotomies were performed in the USA between 1935 and 1960.  It is a really scary thought, and I believe that what doctors like Walter Freeman did was become so obsessed in their work, they clutched to any positive they could and ignored the negative.

What they should have been doing was dismissing lobotomy and trying to find a better way of doing something to help these people.  I mean, if you think about it a thalamotmy and a lobotomy have some similarities.  They are both used to destroy parts of the brain to improve the patients life.  The main difference is a lobotomy is extremely crude, like trying to cure a headache by shooting someone in the face and as a result, destroys a great deal of brain tissue.  A thalamotomy is much more precise and targeted and every effort is made to preserve good brain tissue.

So if (and I do say if because I have no evidence) DBS was born from lobotomy, do I feel guilty for having it? The answer is no.  Would I feel guilty having an emergency procedure done to me that was born on the battlefield.  Again no.  Many might have had to suffer and die to develop these techniques that are now used to help people, but I don't think that having a procedure would dishonour them.  In fact, the opposite.  Turning our back on what we have learnt would mean that their pain and suffering or death would have been for nothing.

On a personal note I think what was done in regard to lobotomy was abhorrent.  The fact that the practice was allowed to go on for so long was a travesty and a complete failing of the medical system.  It is the most extreme case of egos, arrogance and complacency destroying lives in the name of medicine and healing.  It is also one reason why my number one rule is take charge of your own health care.  I feel if people in the 1940's and 50's knew what was going on other than the spin from their doctor, they never would have agreed to the procedure.

On a side note, I think that the doctors that are practising and pioneering DBS are doing an amazing job.  Personally, it has made a massive difference in my life and I urge them to continue the good work.    Until next time, stay well:)

A serious epidemic

This is not just a common cold or even the N1H1 virus.  This is much worse.  I am of course referring to man flu.  This serious pandemic that attaches itself to the Y chromosome causing debilitating illness to all males.  Diagnosis is not required by a doctor and is best made by the male patient.  Treatment consists of lots of rest and tender loving care from a compassionate female.  This is very serious and not to be taken lightly.  Please see attached video;)

Stay well:)

Global Genes Project

This is a message that I am going to put on facebook, send to all my e-mail contacts and promote over google plus. It is a cause I would really like to draw attention to, and I hope that the content of the message will explain why. I have kept it generic so anyone can cut and paste it and send it to their address book, facebook contacts etc. I think it could potentially help a lot of people.

Do you know anyone with a rare disease? The chances are you do. You probably look at them and thank your lucky stars that it is them, not you. You probably want to help but don't think you can because the condition is so rare. You also feel that the condition is so rare that it won't happen to you. Well, here are some facts to give you something to think about:

1. There are over 7000 diseases in the rare disease database.
2. 350 million people suffer from a rare disease.
3. That's 1 in 20 or 5% of the world population.
4. If sufferers lived in one country it would be the 3rd largest country in the world, bigger than the USA.
5. Less than 5% of rare diseases have any therapies or treatments.
6. 75% of sufferers are children.

Individually, having one of these diseases can feel very lonely, but as a collective, sufferers may not feel so isolated. The Global Genes Project exists to raise awareness for those children and their families affected by rare disease, educate the world about genetics and it's link to rare disease, and fund innovative 'in their lifetime' research and therapy development.

Right now, The Global Genes Project is on a campaign to spread awareness about rare diseases.  They don't want your money, they just want you to like their facebook page.  More to the point, they want one million people to like their facebook page.  You can do so by clicking on the following link:

http://www.facebook.com/globalgenesproject

With your help we can make a difference to change the quality of life to 350 million people world wide.  So you can help.  It is up to you!

Thank you.

Please feel free to copy this message to your friends, family and acquaintances.  The more the better.  Until next time, stay well:)

Synthetic Biology Explained

I found this video on the blog Not Running a Hospital.  I found it really interesting so I thought I'd share it with all of you.  Stay well:)

Is there anything the internet can't tell you?

I know how to use the internet, maybe I should become a surgeon;)

Stay well:)

A BIG Shout Out to the Mums and Dads!

Having a chronic condition really sucks.  Nobody would choose to have one, and when you are having a bad day with it nothing can possibly seem worse.  But if I think about it, there is one thing that I think would be worse, and that is having a child afflicted by one of the many horrible conditions.

On forums for both CIDP and cystinuria there are parents that post about the terrible ordeals of their children and my heart goes out to them.  It is not fair for any one person to have to deal with things like this, let alone a child.

I have a couple of stories of my own that have just given me a glimpse as to what these parents must go through.  When my daughter was just two she was complaining of a stomach ache.  I suddenly must have turned as white as a sheet when I thought she might possibly be having a kidney stone.  My whole world stopped.  I had my first kidney stone at the age of 18 and that was bad enough, how was a 2 year old going to cope?  Luckily for me, it was just a stomach ache.  Some baby panadol and one ridiculously disgusting and soiled nappy later she was fine.

The second time was when I took my son who was four at the time to have a mole removed.  For an adult they would normally do it in the doctors surgical suite, but for a child it was done under general anaesthesia at a hospital.  He had no idea of what was going on.  I'm sure that in his young inquisitive mind it was simply a fun adventure.

But when they put him to sleep and he went limp in my arms I really started to worry almost to the point of panic.  At that point I wanted it to be me who was going under the knife.  I wished it was me.  Instead I had the luxury of going to the waiting room with nothing but rubbishy day time TV and a bunch of aged women's magazines for company.

After 20 minutes (which seemed like hours) he was in recovery, and five minutes later he was up and about wanting to explore the hospital like nothing had ever happened.  It was sheer relief and I was so glad he was ok.

During these times I felt a mix of emotions, among them were worry and guilt.  For a parent it is only natural to worry.  But that can also be a good thing.  When it comes to carers, there is nobody quite as committed or strong as a worried parent.  Their resolve is unwavering, their dedication, immovable.  A parent looking after their child is one of the strongest things imaginable, and that strength needs to be praised and applauded.

However, the guilt is not needed.  The flight of these brave children is nothing more than a cruel twist of fate.  Although you might think as a parent you might have been able to do something to avoid this, you are wrong.  All you can do is do the best job you can for your child.  In other words, just keep on doing what you are doing.

So this one goes out to the mums and dads of sick kids and the wonderful jobs you are doing.  Remember, you are not alone and there are many people thinking of you.  Until next time, stay well:)

Rare Diseases

Do you suffer from a rare disease.  Well let me tell you from personal experience, it can feel pretty lonely. I suffer from two rare diseases, CIDP and cystinuria.  If you discount the online community do you know how many people I have met with CIDP?  Easy, nada, nil, zilch, zero.  Yes, a big fat doughnut!  For cystinuria, the answer is one.  That is my brother and genetics would have played a big part in that.

But you compare all rare diseases, there are an awful lot of them.  Did you know that 350 million people suffer from a rare disease worldwide, which is about 5% of the population or 1 in 20 people.  If all the people afflicted by a rare disease lived in one country, it would be the third most populated country in the world, and would have more people living there than the USA.

However, there is a group that specialise in drawing attention to and funding rare diseases.  They are trying to raise awareness by getting 1 million people to like their facebook page.  You could help me and 349,999,999 other people by doing so.  Please forward the message on to all your friends too.  The link is here:

Facebook page

You can learn more by visiting their website here:

Global Genes Project

Until next time, stay well:)

Off Roader

Watch out peeps, there is nowhere left to hide the.  The disabled are going off road!  This specific model can be fitted with leather trim, mag wheels and a nitrous oxide system.  Out int the new year is the diesel turbo model;)  Thanks to Robert for letting me use his picture.  Stay well:)

Don't lose your song!

A friend posted this on the CIDP forum.  I thought it had a good message for anyone who has taken a few knocks in life.  Stay well:)


One day a woman owned a bird that sang all the time so beautifully. One day while busy cleaning her carpet, she answered her telephone and was distracted. She forgot the cage door was open after cleaning it. A few hours passed and she realized she missed the music of her song bird. She panicked once noticing the open cage door. The bird was missing!! In the midst of panic she managed to reflect and remember the vacuum cleaner running while on the phone. She opened the vacuum cleaner bag, and there lay the pitiful dusty bird. She brushed him off - cleaned him up - placed him back into his secure cage. However, the bird NEVER sang again. The moral of this story: things happen in life that suck the life out of us... but never- ever lose your song my friends!

Dangerous Implants

I learnt something today.  Just because something is wrapped up inside you can't forget about it.  I was watching a current affairs show today ant there was a story on the company Medtronic.  Medtronic are the manufacturers of my deep brain stimulator, but they also produce a whole bunch of stuff to do with medical implants and pace makers etc.  Here is their website:-

Medtronic Australia

The story on the current affairs show, creatively named "A Current Affair" was about faulty pace maker implants for the heart.  Apparently they were misfiring causing pain, discomfort and potentially death and as a result a product recall was issued in each country the product had been sold.  Here is a link to the story:

Heart Device Recall

So what did I learn?  In Australia the Therapeutic Goods Administration (TGA) insist that the company providing the product only need to contact the patients doctor about a recall.  From there it is up to the doctor to contact the patient to arrange fixing, replacing, whatever.

Now what if my doctor is retired, deceased or just plain disorganised?  That message is not going to get to me.  The TGA should make it mandatory for the company to contact the patient.  Now, fortunately for me my model of DBS has no recalls or concerns surrounding it, and second, both my neurologist and neurosurgeon are extremely efficient, and I would be very surprised if important news from Medtronic didn't reach me.

But in keeping with my mantra of 'take charge of your own health care', in future I am not leaving this to chance and I am going to make sure I keep myself up to date on any DBS news.  I also think that the TGA should make it compulsory for the medical manufacturer to inform the end consumer of their good if there are any fault.  After all, if it was your implant wouldn't you like to know?  Until next time, stay well:)

Ps.  If you have an internal cardiac defibrillator implant by Medtronic you should contact your doctor.

Is it still helping?

Back in May 2010 I wrote this post judging my stimulator and the benefits I had received in certain areas of my life.

So, How Has it Helped?

When I wrote it I only had the stimulator turned on for two weeks.  A year and a half later I thought it would be a good idea to revisit.  Funnily enough I thought that after two weeks it was about as good as it was ever going to get.  And wow, was I wrong.  Since then I have had dozens of adjustments and with each one there has always been a slight improvement.

I guess one of the biggest changes was when I swapped from a monopolar setting to a bipolar setting.  Although there was not that much difference to my tremor, the bipolar setting really helped with my balance and co-ordination, and with a monopolar setting I also suffered from excessive sweating, which also seemed to clear up.

Here are my evaluations:-

Brushing Teeth 9/10 - I don't notice any difficulty now, so really good.

Showering 6/10 - Much better, but I still cannot close my eyes under water without holding on.

Getting Dressed 7/10 - buttons, zips, cuffs etc. are all easier, but not perfect.

Writing 6.5/10 - Good, but although the tremor is not a factor, there is a some rigidity which makes it harder.  I could fill out a form, but I wouldn't want to be writing any essays.

Typing 7/10 - I still only use my index fingers, but speed is much better.

Cooking 5/10 - Also made easier by some of the aids I have got (see here).

Gaming 5/10 - I find it easier than before, but not easier than a long time before.

Eating 8/10 - It is much easier now, unless I am eating really tricky and delicate foods like prawns .

Drinking 8/10 - I can drink with one hand on a good day.

Using the Remote 8/10 - Funnily enough I watch less TV now, but when I do it is easier.

Peeing Standing Up 10/10 - Ahhhhhhhhhhhhhhhhhhhhh!

Wiping 10/10 - It used to be messy.  Now it isn't.

Overall, I am really happy.  On average I would say 8.5/10.  Given where I was I have had a huge improvement.  Having brain surgery is no small decision.  But I'm glad I did it and if I had to do it again, I would.  Until net time, stay well:)

Movember's International Man of the Year

You have to admire the effort!

Letter to Julia

I am not a fan of Julia Gillard.  I think she turned her back on her principles and broke a bunch of election promises just to form government and become prime minister.

However, I did think she might make some really great improvements to the health system.  Unfortunately, as a person who is heavily entrenched in the Australian health system as a patient I can make this comment on what has changed.  Nothing.

I got my back up again this week when I went to purchase my Urocit K to slow the production of my kidney stones.  It is the best drug I have taken for my stones bar none.  Yet it is not covered by the PBS.  Why, I have no idea.  It should be, and is just one of the long list of things she has not done.

Ironically, I could get drugs like thiola or penicillamine covered that are toxic and dangerous, but the most effective drug I have ever taken that is not dangerous is not covered.  I will put this frustration into a letter for the PM when I have done more research.  I will keep you posted.  Until then, stay well:)

Last letter I wrote to Julia

About Dr Google

I was talking to a doctor friend of mine today, who has been reading my blog.  He said he enjoyed reading it, but he did make a couple of really good points.  First he said that I had given doctors a bit of a bad rap recently.  And you know what, he is right, so I apologise to those sensitive doctors who have taken my blog personally.

Second, was the message that he thought people might read into by the post "Dr Google", a dangerous message.  And he was bang on right to make the point he did.  He suspected that people might think that I am trying to say that one should not bother with your doctor and just self diagnose on the internet. Personally I think that that is a really bad idea.

Please understand that I think it is really important to research your symptoms, diagnosis and treatment options from as many sources as possible.  But the most important one is your doctor.  Doctors have studied for a very long time and are very knowledgeable, especially in their own specialised field.  They should be your first port of call.  After you have seen them you can go home and research their diagnosis and recommended treatment options.  If you disagree with your doctor you can go back to them and raise your concerns, or you can ask for a second opinion.


The point I am always trying to enforce is that you should not just blindly follow your doctor's advice.  You need to listen to them, then go home and research and understand the diagnosis and treatment options.  It is taking charge of your health.  Sometimes even good doctors get it wrong, and if they do, wouldn't you like to be in a position to question them about it?


The following link is an article outlining the dangers of self diagnosis.


BUPA warns of dangers of self diagnosis

However, far be it for me to write a blog like this without having at least a tiny little dig at the medical fraternity.  If you want to stop people self diagnosing.  Don't just tell us to stop but do something about it! First, you could start treating patients as rational, intelligent human beings instead of uneducated, brain dead morons.  Second, doctors could start seeing patients within a week and not three months.  Until next time, stay well:)

This is what it feels like!

Ha ha ha.  More jokes at the expense of kidney stone patients:)

Dr Google

You've gotta love Dr Google, he knows so much and never gives you attitude:)

It's up to them now.

I just finished collating all he data to send to Chicago.  There was a lot of it.  And although it is now all done as best as I can do it I do feel nervous for two reasons.

First I'm worried that I might not get accepted into the program.  Although I feel as though I'm a good candidate there is a lot of tests to be completed and I don't know which ones are more important and what sort of results they are looking for.  Although I have researched it extensively, I am not a doctor, and I do not understand many of the tests they are after.  I'll just have to wait and see.

If I don't get accepted I will be very disappointed.  Although I have tried not to.  I have invested a lot of emotional energy into this process as well as time.  As I said before, I need to be proactive in dealing with my medical issues for my own mental health.  Being rejected from the trial would be very upsetting, and to be truthful I don't know how I'd cope with that.  I would like to think that I'd be able to pick myself back up, dust myself down and soldier on, but reality is sometimes very different.  Being realistic I think it would take time to get over such news.

Second, what if I do get accepted?  What of the risks.  For me there is an added risk because I have a brain implant.  From what I understand it is not an exclusion criteria, but it is a concern, and they might have to take it out.  But if that is the case, then that is what has to be done.

And although I have come to terms with my decision from a logical and a rational point of view, it has only been the last couple of days that the emotional point of view has surfaced.  It always turns up eventually, and for me that time was now.  It is a little harder to resolve in my head, but none the less it is still there.  It has not deterred me from wanting this procedure, but it cannot be ignored.  I will deal with it in my own time.

For now though, there is nothing I can do about waiting for the feedback from Chicago.  But at least I now have it all done and I can look forward to Christmas.  On another note, my legs are killing me today. I stood up for two hours cooking a BBQ for my daughters class Christmas party and I'm paying for it now.  But it was worth it.  Until next time, stay well:)

My kids love this joke!

A man walks into a doctors surgery and says "doctor, doctor. You have to help me.  I only have 59 seconds to live!"

The doctor replies "Just wait a minute please."

The patient screams back "but I only have 59 seconds to live!!!!!!!!!!!!!"

To Immunise, or not to Immunise?

To immunise or not to immunise?  That is the question.  And once you have forgiven me for shamelessly ripping off Shakespeare, you might actually think it is a very important question.  Given that most of the stuff I write about I normally have quite a strong opinion on, I am going to buck the trend here.  I am going to be as neutral as Switzerland and sit right atop the fence.

Why?  Simple.  Because that is where I genuinely feel I belong.  I fully respect an individuals choice to choose whether they are immunised or not.  Yes, I have made a personal choice as to whether I and my children are immunised (and I will tell you at the end) but I don't feel as though I must be right and others should follow suit.  It is a personal choice and people should be free to make up their own minds.  However, I do believe your decision should be made based upon an informed opinion.

You might also ask why I decided to write about this if I am not that passionate about it?  Well I was on a CIDP forum the other day and some one asked the question of how did you get CIDP.  For a lot of people, like me, we have theories, but it is still a mystery.  However, some people are convinced that it was from a reaction to a vaccine.

Which does make sense.  A vaccine is supposed to alter the immune system.  If something goes slightly astray during the process, the immune system might incorrectly teach itself to attack itself.  So I loosely studied the effects of vaccines when my doctor recommended I get a flu shot and made my decision from there, but given the topic thread in the forum I decided to investigate further.

The main arguments against vaccinations are first, they don't work, and second, they can cause other problems.  Problems can be mild and include, rash, mild fever, nausea or aches.  They can also be major, like severe allergic reaction or an autoimmune disease.  They have also been related to mental health disorders like autism, schizophrenia and depression.

Let me briefly argue for both sides.  I'll take the pro immunisation side first.  Vaccination has a pretty impressive rap sheet.  It has beer responsible for the elimination of smallpox, is very close to eradicating polio and has significantly decreased the potential for diseases like measles, mumps, rubella, chicken pox, hepatitis, flu etc.  Or has it?

Another big plus for the pro immunisation lobby is that most governments and medical professionals will sing the praises of vaccinations.  Check out the following link from the US department of health and human services who have found yet another angle to promote the benefits of vaccination.

Community Immunity

However, you have to remember that doctors have been wrong in the past and they will be wrong again.  The question is are they wrong now?  As for the government they will come at you with 1001 different statistics to promote their message.  Anyone that has studied statistics knows that they can be illustrated in different ways to either confirm or counter an argument.  So are they just using propaganda to avoid potential mass hysteria in regards to potential epidemics, or do they have a legitimate health concern?  You decide.

And now the anti immunisation argument.  As with any drug that you might take, vaccinations are not immune from side effects, and the more minor side effects are listed by the drug companies.  But this is not the issue.  Mild short term side effects may be a small price to pay if you receive a long term immunity from a potentially debilitating or fatal illness.

The issue is the major side effects.  There have been a few high profile cases of autism potentially caused by a vaccine, such as the ones cited by Andrew Wakefield in a 1998 issue of the Lancet.  However, these claims were partially retracted in 2004 by the Lancet, and Andrew Wakefield was found guilty of manipulating evidence and ethical code violations.

When it comes to autoimmune diseases, there is strong evidence that vaccination may have been a cause.  But another source of autoimmune disease is the disease that the vaccine is trying to protect us from.  Apparently, you are much more likely to contract an autoimmune disease from a virus than a vaccine.  For example, peripheral neuropathy was diagnosed in about 10% of all diphtheria cases, and a major trigger for Crohn's disease is the flu.  The following journal is an interesting look at vaccines and autoimmune diseases.

Vaccination and Autoimmune Disease

Anti vaccination lobbyists would also have you believe that vaccinations are ineffective.  In the book titled "Fooling Ourselves", by Greg Beattie, many arguments are put up and illustrated with statistics as to why vaccinations simply don't work, including the graph below:

The graph showing cases of diphtheria in Australia between 1870 and 1970, clearly shows that the disease had stopped killing people before the vaccine was introduced.  And all the credit the vaccine took was misplaced, and the real hero was proper hygiene, better health care and antibiotics.  But what it fails to illustrate is the number of cases contracted and successfully treated.  We learnt how to stop people dying from diphtheria, but we don't know how effective the vaccine was in stopping people contracting the disease in the first place.

The argument for both sides can be validated and rebutted.  What is important is that you decide which argument resonates better with you and act upon that.  I think bigger arguments are whether governments should be allowed to insist that people should be vaccinated in order to be eligible to work in certain jobs, children must be immunised to attend schools or people must be immunised in order to enter a country are much bigger issues.

Well now, what have I done?  I have chosen to be immunised.  Personally I think that although there is a slight risk of the vaccine, there is a much bigger risk of the diseases they are trying to protect us from. But that is my choice.  You too should make your own.  Until next time, stay well:)

A big shout out to me!

I passed a big milestone yesterday.  Shakesandstones got it's first 5000 page views!  I can't believe that I have reached that number.  I also have 26 subscribers and I have now posted a mammoth 162 times.  My technorati authority is now 115.  If you would like to help my blog you can vote for Shakesandstones as a technorati favourite at the following address:-

Shakes and Stones technorati favourite

I have also made some changes to my blog.  I have included some 'pages' that have a little information on me and also my medical conditions.  Check them out and let me know what you think, I'd love your feedback.  The links are:-

http://shakesandstones.blogspot.com/p/about-me.html
http://shakesandstones.blogspot.com/p/medical-history.html
http://shakesandstones.blogspot.com/p/cystinuria.html
http://shakesandstones.blogspot.com/p/cidp.html
http://shakesandstones.blogspot.com/p/essential-tremor.html
http://shakesandstones.blogspot.com/p/depression.html
http://shakesandstones.blogspot.com/p/dbs.html
http://shakesandstones.blogspot.com/p/autologous-stem-cell-transplant.html

Well, I hope that you continue to enjoy reading my blog as much as I have enjoyed writing it.  Until next time, stay well:)

Time Flies...

It only seems like last week when I was in for my monthly dose of boring, but time flies and time has already come around again, and thankfully I have now just finished and am sitting at home trying very hard to stay away from noisy children who act as a catylist for an IVIG headache.  Those of you who have had IVIG headaches know what I am talking about.  The neighbours lawn mower certainly does not help either.

But what I wanted to talk about today was the mental preparation prior to treatment that I seemed to neglect on my last post.  I have always found that if I go into treatment with an open mind I generally feel better upon completion.  The problem is it is hard to be positive when there are so many negatives.

If you look hard enough though, you can always find positives in nearly any situation.  To focus on them requires mental discipline, and that is the hard part.  I normally try to go swimming the morning of treatment.  This has a few benefits.  First, it gets the blood pumping so your veins are nice and plump before infusion.  Secondly, exercise and controlled breathing is quite meditative, which helps with focus.  Third, it clears the mind.

I also swim with a friend and afterwards we go for breakfast which gives me something to look forward to just prior to treatment.  But that still finishes before treatment starts, so I need another positive to focus on, and I have two.

First, although I have a negative short term response, the long term benefit is undeniable.  Since being on IVIG my rate of deterioration has been far slower, so this treatment keeps me walking, keeps me functional and allows my independence.  Second, I give myself a treat and rent a couple of movies just for me.  Nobody else around to say "I've seen that" or "I don't want to watch that".  The choice is mine and mine alone and it gives me time to do something I don't get to do often that I really enjoy.

I think that the hardest part is simply focusing on the benefits and not allowing the negatives to creep in.  For me it is simply a conscious decision to focus on the positive.  It can be hard, but it is worth it.  Remember, we can't help the way we feel, but we can help the way we think.  The way we think influences the way we feel, and the way we feel influences the way we think. If we can alter our thoughts, we can turn the tide on how we feel about a given event.  In this case for me, my treatment.  Until next time, stay well:)

Another test;)

The good people in Chicago forgot to ask for a stool sample, so I thought I'd send them one;)  Stay well:)

A good question

The other day, I was chatting with friends and we got on to the subject of my health, and the question arose as to which medical disorder I have is the worst to deal with.  After thinking about the answer I honestly had to say I don't know.  Before my brain surgery it would have been the tremor.  If I am symptomatic with kidney stones it would be the cystinuria. At the moment it is the CIDP.  And don't forget the depression that sits over them all like a catalyst of disaster.

So which one is worse?  Plain and simply, I can't answer that as they all have their moments, and it is also the reason you can't tell someone that there are people worse off than them.  Whatever situation you are in will always seem like the worst possible case.  But that can be used as a positive.

When you are feeling sick it occupies all of your available thought which you can channel one of two ways.  First, you can focus on all the negatives and intensify how crappy you feel, or you can try to channel that energy into trying to fix yourself.  I have been on both sides of the fence, and I can guarantee you that the latter is preferable.

But, when you are there, you have to focus on getting better.  You can do that in a number of different ways, but that is a different story and another post.  Being reminded of all the people worse off than you just pushes you onto the wrong side of the fence.  When you are sick it is a time to be selfish.  A time to focus on yourself and not to worry about others.  If you want to help others, do it when you are better.  I'll use the metaphor of the airplane in crisis.  Fix your own mask before helping others.  You are no good to anyone if you are out of action.

I have to say though that the conversation that inspired this post was a very interesting one that bore a lot more questions to answer.  But isn't conversation one of the treasures in life?  For all that has gone wrong with my health there are still many things I can enjoy.  Stay well:)

Hope for the future

Recently, a friend posted this link on facebook:-

Stem cells reverse heart disease

Previously, it was believed that when heart muscle died it stayed dead, but it has been proven that heart muscle can be grown back using adult stem cells.  This is revolutionary and flies in the face of conventional thinking.

And it got me thinking.  Thinking about many things, but one in particular.  And that was if this could work no a heart, could it work on another organ?  Yes, selfishly I was thinking about the kidney, but in my defence, you do have to look after yourself.

So I started to do some research.  Again, the conventional wisdom states that you can't grow new nephrons (the tubules that filter the blood, producing urine.)  But that is what they thought of the heart, and now they are growing new heart muscle.

So I wanted to see if there was anywhere that they had managed to isolate kidney stem cell and use them to grow new nephrons.  And yes! They have!.....  But only in zebrafish.  Apparently, adult kidney stem cells disappear in mammals around birth.  So what are the options in generating a workable treatment for kidney disease patients?

Well the way I see it there are three options:

1. Find adult stem cells in the kidney.  Just because nobody has found them yet doesn't mean they are not there.  The whole body replaces itself every 60 days.  Something must be there to replace kidney cells.  Scientists believe in the possibility too, or they wouldn't still be looking.
2. Manipulate other adult stem cells to behave like adult kidney stem cells.  Researchers have tried using bone marrow stem cells to repair heart muscle with some success.  The potential is there for kidneys too.
3. Embryonic stem cells.  However, the research here has a long way to go and is fraught with ethical issues and opposition

There was one other thing I was quite encouraged about with the zebrafish study.  Stem cells were harvested from one fish and successfully donated to another.  This means that the stem cells from the donor, that carry the donors DNA would now be working in the host.

So hypothetically, if I got a donation of kidney stem cells from a donor that didn't have cystinuria, my kidney would cease to filter cysteine and my disease would subside (theoretically).  There would be potential complications though, as with any allergenic transplant.  Rejection for example.

However, fellow cystinurics and kidney disease sufferers.  Don't start celebrating just yet, a workable treatment is still years away before it will even make it to trial.  At least we know that the research is moving in the right direction and one day, there will be a workable treatment that will be effective and give us some normality to our lives, and even if it is not there for us, it could be there for our children.  Until next time, stay well:)

Ps. here is the article on the fish research study:-

Adult Kidney Stem Cells Found in Fish

If I'm Glowing, Just Turn me Off.

In the last two weeks I have had a head CT, a sinus CT, a chest x-ray and a KUB (Kidneys Ureter and Bladder.)  After being exposed to all that radiation I wouldn't be surprised if I glow in the dark!  But I'm hoping it will not be in vain.  After all, we don't do these things because they are easy, we do them because they are worth it.

I guess I do have a point to make.  All things being equal, even when you are pretty good having a chronic disease is still pretty time consuming, let alone two.  I have had a pretty busy couple of weeks and it's not letting up just yet.  To let you know as well as the x-rays above I have also had 4 appointments with specialists, 3 GP appointments, 2 physio appointments, an ECG and an echocardiogram.  And left for this week is a 1 physio appointment, my IVIG treatment, 1 specialist appointment, a pulmonary function analysis, all the blood work and urine analysis I talked about last week and a 24 hour urine test for my nephrologist.

Now it might sound like I am having a bit of a whinge, but I'm trying to illustrate my point.  At the moment I am pretty well.  I recently had a flare up of my CIDP, but aside from that my depression symptoms have never been better, my tremor is under control and I am asymptomatic with my kidney stones and according to my x-ray I am stone free.

I understand that a few of these items are to do with me trying to get on the trial in Chicago, but if it's not that it's something else.  So spare a thought for the chronically ill.  Try doing a full time job with all that going on.  On top of that, there is living with your disease that is also tiring.  And all the other inconveniences.  Remember your pills, what you can eat, what you can't eat, what you can and can't drink, exercises etc.....  Oh yeah, then there is also all the research into your symptoms, disease(s), treatments, side effects etc.....

Living like this is a full time job.  It's exhausting and tiring.  And I think I talk for all patients when I say this.  We didn't ask for are disease, yet we have no choice but to deal with it.  And I have to say that most patients I have had the pleasure of talking to are very brave and resilient.  But patients are  people too, and just like all people they have bad days and bad moods.  So if we seem irritable, lethargic, grumpy or just generally pissed off, cut us some slack.  We don't mean it and we are dealing with a lot.  Until next time, stay well:)

Hero!

This guy is a dead set legend!  I preach about taking control of your health care and being responsible for it, and I like to think I practice what I preach.  But this bloke puts me to shame.

His name is Kenneth S. Spriggs, and his life has been tainted with Eczema, Asthma, Crohn's disease and depression.  But it is what he has done that is quite impressive.  He has taken his entire history, and mapped out all the drugs he has taken over the years.  The chart he created is illustrated below:

The data he collected came from nearly 20 sources and was over 600 pages.  What is most important is the trends he managed to learn from this and take to his doctors which would enable a more effective treatment plan moving forward.

I have to say that I don't think I would have the patients to scour through my medical history to display a graph quite like this one, but it has got me thinking that I should collate some of my data and display it in a graphical form so that I might learn something from it.  I would encourage you to look at his blog too.  http://diyehr.com/

Until next time, stay well:)

MedTees

There are plenty of funny t-shirts to buy at this site, which was created by cardiologist Westby G. Fisher.  The site was created to increase patient empowerment, and the proceeds go to support research in medicine.  This is one t-shirt that caught my eye.

You can see more of their merchandise at www.medtees.com.  Stay well:)

Inspirational

This isn't just inspirational, it tells a story of strength overcoming adversity.  Francisco, you are a champion!

Lawyers, back off!

I was on a patient chat room the other day and a fellow patient mentioned a friend who had had a operation called the "liberation procedure".  The patient in question had multiple sclerosis (MS), and as CIDP and MS are quite similar (both demylenating and auto immune) my interest had been peaked so I did some more research.

Unfortunately, I have to admit that I don't think that the liberation procedure would be suitable for CIDP patients as it is supposed to relieve pressure on the brain stem by widening the veins in the neck.  The demylenation in CIDP patients is in the peripheral nerves.

But I was astounded by some of the things I read.  But before I tell you what let me give you a little background.  The liberation procedure is basically angioplasty in the veins in the neck.  It is a common procedure to treat other vascular problems.  It is considered relatively safe.

Yet, in many western hospitals the procedure is being disallowed.  Why? you may ask.  Because the evidence points to the procedure not working?  Or maybe there are not enough doctors trained in the procedure?  How about the hospitals are ill-equipped to perform such an operation?

All reasonable answers, but all wrong.  The real reason is because of the lawyers protecting hospitals and doctors from litigation.  And what do lawyers know about medicine?  Nothing.  What do they know about treating sick people? Nothing.  And what do they know about being sick?  Nothing.  And no.  That common cold you thought was the mother of all cases of swine flu doesn't count.

MS is a debilitating, degenerative and eventually fatal disease.  Let me try and paint a picture for you.  You live in a wheel chair, you cannot feed or bathe yourself.  You can't even wipe your own bum, and you are only going to get worse until you die.

But there is hope.  You hear of a procedure that has the potential to halt the progress of your disease, maybe even reverse it.  You even find a qualified doctor prepared to do the procedure for you.  But wait. There is a problem.  Because a lawyer is scared of the hospital being sued he puts a stop to the operation.  You, as the patient are now condemned to a life of disability, and your one hope of wrestling back some form of independence and quality of life has been squashed by a lawyer.

If lawyers are scared of being sued for malfeasance, maybe as patients we should sue them for nonfeasance.  If failure to act when you have the means and capability to do so leads to someone having a substantial decrease in their quality of life, surely they should have a right to seek reparations?

As a patient I think I should have the right to decide my own destiny and choose my own treatment options.  I take the risks and if something goes wrong, I pay the price.  I am of sound mind, and I can make my own decisions.  I don't need someone to do it for me.  Especially someone with no idea.  Lawyers, back off!  Until next time, stay well:)

Depression - A personal note

Looking back through my blog I noticed I had left a couple of topics incomplete.  One of which is depression.  You may have thought I finished the topic, but I wanted to do one more thing and give you a personal reflection.

I have found this topic hugely confronting.  From the outside, I may look like a fairly open person, but emotionally I have up until recently been a closed book.  But I made myself a promise that when I wrote this I would be brutally honest with the way I felt.

I took me over a year to suck up the courage to write on the topic of depression, because I knew that if I was going to keep my promise to myself it would be akin to me opening Pandoras' Box.  And although it might not look like much to others I have done something that I never thought I'd do, or be able to do.

But I have, and although it has been difficult (really difficult), it has been an absolutely worth it.  Shakesandstones has given me an outlet to release some of my emotions and potentially help others in the process.  It has allowed my to have purpose and fulfilment, and I have really enjoyed writing it.

Well, I hope you have enjoyed reading.  I will continue to write so until then, stay well:)

Update

I have a bit of a skip in my step today.  I feel that things are starting to get moving, but I have to admit, it isn't going to be easy.  One of the things I am trying to do is to 'pre-qualify' for the stem cell transplant whilst I am still in Australia.  I don't want to go all the way to Chicago, only to find out that I am not a suitable candidate and I get sent packing back to Australia with my tail between my legs.

So right now I have been asked to do a lot of tests.  And I mean a lot of tests.  I have listed them here:-

Blood Work and Urinalysis

Immunoglobulins quantitative IgG/M/A

Lymphocyte phenotypes (CD3,4,8, CD 56, CD 20)

Varicella zoster virus (VZV)

Herpes simplex virus HSV

Cytomegalovirus by polymerase chain reaction (CMV by PCR)

Urinalysis (UA)

Uric acid

Fibrinogen Antigen Assays/Prothrombin Time (PT)/Partial Thromboplastin Time (PTT)

Anti bodies; MAG, GM1, GM2, GD1b, sulfatide, GALOP

Serum protein electrophoresis (SPEP)

Immunofixation Electrophorisis (IFE)

Anti-Hu anti bodies

Cytoplasmic antineutrophil cytoplasmic antibodies (C-ANCA)

Antinuclear antibody (ANA) panel to include Anti DS DNA, SSA, SSB

Anti-gliadin

Anti-transglutaminase

Rheumatoid Factor

C-reactive protein (CRP)

Sedimentation rate

Angiotensin-converting enzyme (ACE)

Cryoglobulin

Triiodothyronine, Thyroxine, Thyroid-stimulating Hormone (T3, T4, TSH)

Thiamine (vitamin B1)

Vitamin B12

HIV

Hepatitis B 

Human T-lymphotropic virus Type I (HTLV-1)

Glycated hemoglobin (HbA1c)

Prostate-specific antigen (PSA)

Other Tests

Pulmonary function Test

Echocardiogram

CT sinus’

EKG

Chest X-ray

MRI

Lumbar puncture

I have been very busy getting my head around what they are all for, which has been really hard seeing as though my GP didn't know what about a third of them were.  Luckily, Dr Google seemed to have information on most of them.

Although the task is daunting, it is nice to finally feel like I am doing something.  The worst feeling is just standing still waiting for something.  An appointment, a test, an answer, anything.  Anyway, forgive me if my blogging is a little light in the short term, I've got some work to do!  

Tomorrow and Monday I will get the other tests done, and hopefully by then I will have figured out the blood tests so I can get them done, and have the results to Chicago by the end of next week.  But I know how it works, I will settle for by Christmas.  The other benefit I have is that I have already done the MRI and lumbar puncture ages ago, so these results will do.

I will keep you all updated as things progress.  Stay well:)