HAWMC Day 13: A short poem

My disease sucks
Enormous stigma
Care, what care?
For governments refuse to fund research
So we are going nowhere.


(ME/cfs stands for myalgic encephalomyelitis, also known as chronic fatigue syndrome) 

HAWMC Day 12: What I have learnt as a patient

I have been a nurse for nearly 20 years when I got sick in 2008. What I knew then about our socialized health care system was that everybody was taken care of.

See, I worked in labor and delivery. Women came in labor with their birth plan, they gave birth and they sent us candy. Happy moments, for the most part but not always. But everyone got served and got cared for. In fact, if there was no room for them to have a baby, they'd be diverted to another hospital, and occasionally even in the US, and our health care system would pay the tab.

In the latter part of my career, I worked in bone marrow transplant, then in an outpatient chemo unit. Oncology is health care on steroids. You need a MRI this week? You got it. It can take up to a year for non-cancer patients. One of the rare PET scanner resides at the cancer clinic.

You could see opulence in that hospital, thanks to private donors and public funding. Patients are well taken care of, for all of their needs. The nurse to patient ratio is high in every parts of the hospital. I made sure my patients were comfortable and well taken care of.

And then I got sick.

Throughout the 4.5 years I have been sick, I have learnt that not everybody is treated equal when it comes to health care.

The name of your disease matters. See, if your disease is called chronic fatigue syndrome, you are out of luck. Whether your diseases belongs or not to a medical specialty matters. Whether your disease belongs predominantly to one sex matters. Women's diseases are not served as well as diseases such as cardio-vascular, erectile dysfunction or sports injuries.

I have learnt that specialists do not want to treat patients outside their medical specialty, especially when it comes to chronic diseases. I think they get worried of getting stuck with us.

I have learnt that governments are not interested to fund myalgic encephalomyelitis, especially since it's been branded early on as a psychiatric illness (which it isn't) and that they'd rather fund diseases that makes them look good. It doesn't make sense. You can only understand this when you get sick with a wrong side disease.

I have also learnt, in no particular order
- to not believe everything that is being said out there.
- to not trust every scientific paper as being the absolute truth
- to trust your instincts and stick to your guns
- to take one day at a time
- to not expect instant results when advocating for your disease.
- listen to your body
- be nice to yourself
- keep distracted, keep your brain busy
- have a copy of your medical records

- don't forget to laugh. 

Member of Parliament issues ME Order Paper

Liberal MP Carolyn Bennett has issued an Order Paper last week on behalf of patients with ME.

An Order Paper is one of the ways for a member of parliament to ask questions to the Canadian government, and by law, the government has to respond within 45 days.

Here is another way to explain it, coming from the office of Carolyn Bennett:

If a question intended to obtain information from the Ministry involves a lengthy, detailed or technical response, a written question must be placed on the Order Paper. A Member must give 48 hours' written notice of his or her intention to submit such a question. Each Member may have a maximum of four questions on the Order Paper at any one time. Certain restrictions exist on the form and content of written questions. These are based on the Standing Orders and on practice.

The Member giving notice of a written question may request an answer within 45 days and may also ask that oral answers be provided to no more than three of his or her questions on the Order Paper. Such questions are identified with an asterisk in the Order Paper.

The House must be sitting so we will not be able to do so until the House resumes in the fall.

St-Pauls' Liberal MP has been briefed about the situation of almost half a million Canadians,and quickly decided to pass on to action. We the patients in Canada can only be thankful for her gesture.

It is not the first time questions were asked at the House of Commons about ME. In 2009 there was an Order Paper placed by Hon Oliphant and the answered on October 5th. The questions this time are fairly similar, which inadvertantly makes you think that the Conservative government doesn't care about us. Funds have not been allocated, consensus documents have not been approved to be posted on national public health website and that the arthritis research had us covered (insert swear word here).

Carolyn Bennett is a physician who gave up her practice to be a full time politician. She is a well seasoned politician, sits with the liberals and currently is a critic for Aboriginal Affairs & Northern Development and the Canadian Northern Economic Development Agency. She is also Chair of the National Liberal Women’s Caucus. Despite her very busy schedule, she is giving of her time with her constituents and also anybody else who wants to chat with her on Sunday evenings on Facebook. This is how I got the opportunity to approach her in regards to myalgic encephalomyelitis and fibromyalgia, one of the most neglected diseases of them all. On many occasions she asked me to send documents and links to her office. She has been interested and it's nice to see.

For those of you not knowledgeable with the Canadian politics, the Conservatives have been elected for a second term, this time with majority. It is my opinion that they have not been doing a good job in general- especially when it comes to health and science. (And of course I am concerned about health)

So on October 30th Carolyn Bennett filed an Order Paper on behalf of patients with Myalgic Encephalomyelitis and Fibromyalgia. And I want to say thank you. Here are the questions she has been asking:

It is Question 1044 and available in both official languages here

Q-1044² — October 30, 2012 — Ms. Bennett (St. Paul's) — With regard to Canadians diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): (a) what funding has been allocated to research this illness in the last two years; (b) how does the government propose to encourage Canadian research into ME/CFS so that the level of research into this complex, multi-system illness is commensurate with its extent and impact; (c) what is the government doing to develop strategies and programs to meet the needs of Canadians with ME/CFS; (d) how is the government ensuring that health professionals are aware of the following documents, (i) the Canadian Consensus Document for ME/CFS (ME/CFS: A Clinical Case Definition and Guidelines for Medical Practitioners), (ii) Canadian Consensus Document for Fibromyalgia (Fibromyalgia Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners); (e) when will the government perform the following tasks in relation to the Consensus Document for ME/CFS posted on the Public Health Agency of Canada's website, (i) improve the location of the document on the website in order to facilitate location of this document, (ii) post the French version of this document; (f) why is the Fibromyalgia Consensus Document not posted as a Guideline on the Public Health Agency of Canada's website; (g) what steps is the government taking to ensure that health professionals, patients, and the public have access to science-based, authoritative and timely information on ME/CFS; (h) how soon will the government post other information related to ME/CFS on government websites; (i) what is the government doing to ensure access to ME/CFS knowledgeable physicians and appropriate health care on a timely basis and how are they working with the provinces, territories, professional organizations, educational institutions and other stakeholders to meet these needs; (j) how is the government working with stakeholders to deal with other needs of Canadians with ME/CFS shown by the 2005 Canadian Community Health Survey (CCHS) including, (i) reducing the levels of unmet home care needs, (ii) reducing the levels of food insecurity, (iii) increasing the sense of community belonging experienced by Canadians with this condition; (k) how will the surveillance report on ME/CFS, prepared from analysis of data collected from the 2005 CCHS, be used to improve the situation for Canadians with ME/CFS; and (l) how will the government monitor the extent and impact of ME/CFS and these other conditions on an annual basis given that questions regarding ME/CFS, Fibromyalgia and Multiple Chemical Sensitivities were dropped from the CCHS after 2005?

We should have an answer by mid December.

Vancouver Complex Chronic Illnesses hires medical director

What's been buzzing in the last day is that Dr Alison Bested, who is a pathologist hematologist in Toronto has been hired to the incoming Complex Chronic Disease Clinic in Vancouver.

Dr Bested has been advocating for patients with ME in Ontario for many many years. She has also written a book. She is now leaving the Environmental Clinic, which was a diagnosis but no treatment clinic. She has been a co-author of the 2003 Canadian Consensus Criteria document.

Pamela Fayerman, a Vancouver Sun journalist who covers health, has written on the matter, and sums it all in this article, and she even quoted me:


Kati Debelic, a chronic fatigue syndrome patient and advocate said CFS sufferers welcomed Bested’s appointment.
“We wish her luck in building a clinic [that] will provide competent and evidence-based health care for the most neglected diseases of them all,” Debelic said in an email.
“Patients have been waiting for a long time for this piece of news and are looking forward to the day this clinic is finally reality. For some of my fellow patients, the wait has been unbearable.”


I hope that this turn of event is just the beginning of good care, respect, and actual treatments for patients with ME in British Columbia.

I hope that Dr Bested will embrace her role fiercely and will be able to dig us access to the laboratory tests that we need, including NK cell function, lymphocyte subset, viral titers and the latest in evidence based practices from other clinics around the world. Patients have the right to health care just like every other diseases, and patients have the right to have this disease properly researched.

So I welcome Dr Bested, wishing her easy transition to the next stage of her career.

On the eve of May 12th, this is what's going on in Canada.

For the uninitiated, May 12th is ME Advocacy day. Just like Christopher Columbus has his own day. May 12th is Florence Nightingale's birthday. She got sick with ME and had to give up nursing.

This year will mark the 20th anniversary of May 12th ME Advocacy day. A year to notice certainly. But who will notice can be left to anyone's imagination. Chances are, the ones that patients want to notice won't give even a first look.

Just yesterday, our health minister Leona Aglukkaq announced a 100 million $ funding for brain research. You can view the press release here.

"One in three Canadians will face a neurological disorder, injury, or psychiatric disease, at some point in their lives," said Minister Aglukkaq. "This investment will strengthen Canada's position as a world leader in research in the identification and treatment of brain disorders."

Common brain disorders include: depression, Alzheimer's disease, Multiple Sclerosis, autism, brain tumours, traumatic brain injury, chronic pain, schizophrenia, addictions, post-traumatic stress, Parkinson's and epilepsy.

They just could not mention 1.1 millions of citizens who are affected with M.E., fibromyalgia or both. The 18oo signature petition that I have been working on has done nothing for the health minister, it seems that we are still seen as tired people who are increasingly complaining of not getting enough attention.

But the news don't just stop there. The ontarian rheumatologists have been hard at work, they have been voting on whether fibromyalgia should get kicked out of their medical specialty or not. I will copy the brief article from Margaret Parlor (director at ME/FM Action) who posted this on Facebook:

Dear Friends

This week, a study was released in the Journal of Clinical Rheumatology entitled "Should rheumatologists retain ownership of fibromyalgia?  A survey of Ontario rheumatologists". 

As background, the American College of Rheumatology developed a definition of fibromyalgia in 1990, bringing fibromyalgia into the rheumatology orbit.  However, there is a debate underway within the rheumatology community about whether fibromyalgia really belongs under rheumatology.  A comment was published in the Journal of Rheumatology in 2009 which stated:

"The time is ripe for rheumatologists to consider abrogating care of these patients for these reasons: the pathogenesis of FM is now firmly centered in the nervous system, and FM is not a musculoskeletal complaint. Optimal patient management requires attention to the many symptom components of FM in addition to pain management. Patients with FM will also require prolonged care with continued tailoring of treatments, as symptoms are likely to change over time. Finally, as 2% to 4% of the population suffers from FM, it would be unrealistic to require that all or most of these patients be evaluated or followed by rheumatologists."

In the current study, the authors invited all 150 rheumatologists in Ontario to participate in an on-line survey.  Eighty of them did so.  Of those responding, 71% said that rheumatologists should not retain ownership of fibromyalgia, while 89% said that the family physician should be the main care provider for these patients.  Though we are not sure what the seventy rheumatologists who did not respond would have said, the findings suggest that there is a reasonable level of support among rheumatologists for withdrawing from the fibromyalgia area.  And if these are the feelings of Ontario rheumatologists, these are very possibly the feelings of rheumatologists in other province and states as well. 

These survey findings are not a particular surprise.  We already recognized the ambivalence within the system.  In many ways, we welcome the fact that the issues are now on the table. However, this also means that we could be entering a critical time of change in the health care system for fibromyalgia patients.  The Canadian Community Health Survey made it clear that Fibromyalgia patients already have a high level of unmet needs.  We certainly do not want to see existing services withdrawn without new services to replace them.  There is a need to address  the concerns of the rheumatologists, but any dialogue must first and foremost address the concerns of patients. 

Abstract of current study: 

http://www.ncbi.nlm.nih.gov/pubmed/22547393

For full article, follow the link

in upper right corner, 34.95$US. 

Comment from Journal of Rheumatology: 

http://jrheum.org/content/36/4/667.full

Margaret Parlor

President

National ME/FM Action Network

www.mefmaction.com

So take this. The GP's can apparently do an as good job as we do. There are too many of them patients for rheumys to be encumbered with them. 

This is bad news because having a home under a medical specialty means that there is research happening. Who have seen GP's perform medical research, or clinical trials? They can't be bothered. We have a terrible penury of GP's in Canada. They barely have time to see you 10 minutes, let alone dealing with the complex difficulties of a patient with fibro or ME. Patients know more than GP do when it comes to these illnesses. 

This, for Rheumatologist, is finding a convenient way to get rid of an entire illness. As for ME, I have asked around, at the Canadian Association of Rheumatology and also the Arthritis Society why ME was not accepted by rheumatologists as a disease they treated. I told them that the norwegians felt it was an auto-immune disease especially that we seem to respond rather well to Rituximab. I got crickets. Zip. Nada. No answer. 

Not only these 2 pieces of news are disappointing, they are scary. We patients with invisible disease such as Fibro and ME have no respect, and basically nowhere to turn to in Canada. I got someone highly placed in Canada's health agency told me (I got the email) to go to pain clinic. That was the most insulting answer I ever got after giving him the ME-ICC paper, the Norwegian Rituximab study paper, David Tuller's piece on the CDC and my 4 pages advocacy letter. The pain clinic... who will told me to relax, send me for CBT, GET and maybe even give me pain pills to shut me off. Errrr no... This is not the way I'm gonna go. 

What is there to do? 

This is time to make noise people. Be loud, be heard. Sign a petition. This one, and this one. Better yet, start a new petition, this one pen and paper, and ask your MLA to read it in parliament. 

Write. Send a letter to your MLA, provincial medical association, provincial health care, federal health agencies. There are 1.1 millions of us. That's a lot of voices. 

Protest. Engage the media, written, spoken and television. Tell them about the health care you've received so far and how bad it's bound to get. Tell them about the neglect, the stigma and discrimination you encounter. Tell them about how bad your governments- and physicians have let you down. 

Join and support your local, provincial and national ME and fibro organizations. We have to be united. We have to act. 

Simon Wessely goes crazy after the new ME Int'l Criteria Consensus publication

It's been a crazy summer.

Patients have been waiting for news. Any news. Our lives have been put on hold after the infamous Lombardi et al. paper.

Science actually placed an expression of concern on it- warning everybody in the science world that maybe this XMRV thing is not going to pan out since no one can find it and since Coffin said so. Dr Mikovits and her team are standing their grounds. It seems that the one that can make a difference is Ian Lipkin whose XMRV study results due by the end of the year can make or break XMRV in humans and MECFS patients. The opinions are so polarized, that apparently you are either a believer or a non-believer. Apparently, Dr Lipkin remains agnostic, which in my opinion is a good thing.

One of the big surprise of the summer has been the publication in the Journal of Internal Medicine of the new International Consensus Criteria. Co-authored by 26 experts around the world, this paper took the Canadian Consensus Criteria and gave it steroids. Refined, more precise, and easier to use. This published online on July 21st. This date is important because a few days later Simon Wesseley will start attracting the attention on him and other few who allegedly received death threats from ME/CFS patients.

Another paper of importance is Dr Jason's work, Small Wins Matter in Advocacy Movements: Giving Voice to Patients (Aug 20th) In the space of a few pages, Dr Jason discusses the history of our disease, the social construct, the prejudices, and almost in a whisper in patients' ears, tells us how to win the small battles in order to get our voice heard. In my opinion this paper deserves more attention and publicity. Dr Jason has been a strong advocate for all of us, I can't thank him enough for the work he has done.

The flavor of the summer, though, revolves around Simon Wessely who has reported death threats quite publicly, followed by scientist (who can't find XMRV) Myra McClure. You can see the links following which relates to CFS and what may have triggered Simon's behavior. Very interestingly, Simon "came out of the closet" exactly 48 hours after the new International ME Criteria Consensus came out. Coincidence? Not at all. The proof is in the pudding... Read the very last link. Simon is deep in conflicts of interest. He is at war, so to speak, with a group of disabled patients that have been left behind more than once, and for over 3 decades now.



Loss of capacity to recover from acidosis on repeat exercise in Chronic Fatigue Syndrome- A Case Study (June 30th)

Dutch doctors blunder by dismissing symptoms in XMRV positive ME patient as psychosomatic and fail to diagnose Metastatic Breast Cancer (July 4th)

Too soon to Translate? An editorial in Nature (July 7th)

RCGP, a.k.a. the Mrs Simon Wessely College tries to reclassify ME/CFS again (July 9th)

EEG spectral coherence data distinguish chronic fatigue syndrome patients from healthy controls and depressed patients-A case control study (July 13th, BMC)

Murdoch and Vaccines: Exposure of Crimes Reveals a Much Larger Story (July 17th)

James Murdoch is still supported by GlaxoSmithKline (Age of Autism-July 18th)

His Work Has Gone Viral (Dr Coffin discusses XMRV- July 18th)

Dr Bieger announces he can find XMRV in the blood of patients with ME/CFS (July 18th) 

New ME International Consensus Criteria (July 20th, Journal of Internal Medicine) 

Science versus Psychiatry – again Malcolm Hooper and Margaret Williams 22nd July 2011

Chronic fatigue syndrome: understanding a complex illness (4 authors) July 28th

The real victims of ME are those with the disease (July 29th)

'Torrent of abuse' hindering ME research (July 29th)

BBC Radio 4 Today: 'Malicious' harassment of ME researchers (July 29th)

ME researchers 'receive death threats from sufferers'  (The Telegraph July 29th)

The Economist: Head Case (July 30th)

Professor Hooper: Wessely’s Words Revisited (July 30th)

About "Shoot the Messenger and see it that will cure you" by Rod Liddle in The Sunday Times July 31st 2011

Hillary Johnson: Cry Me a River (Aug 3rd)

Interview with Simon Wessely (originally by Stephanie Marsh in the Times Aug 6th)

Guardian: CFS scientists face death threats from militants (Aug 21st)

Hillary Johnson: Animal Magnetism (Aug 21st)

Discover Magazine:Chronic Fatigue Syndrome: Death Threats for scientists? (Aug 21st)

Health Activists Launch Campaigns of Abuse Against Scientists with Whom they Disagree (Aug 22)


Times Higher Education: Scientists researching CFS-or ME - are being targeted by activists who are now as dangerous as animal rights extremists (Aug 24)

Simon Wessly's piece in Spectator: Mind the Gap (August 27th)

Dr Malcom Hooper's response about Simon Wessely's allegation of death threats (Aug 25th)

The big Issue: Extremism has no place in the quest to find a cure for ME (Aug 28th)


Protesters have got it all wrong on ME (Aug 29th)

ME patients considered dangerous (Aug 29th)

Professor Simon Wessely's conflicts of interest

Obviously Simon got the media on his side. They view him as a victim. And how dare we, patients reject his medicine and his science?  Not only he doesn't want to admit being wrong, he continues to do damage to the most vulnerable in our community, cutting off sick benefits,  "sectioning" patients (mandatory psychiatric hospitalization), causing suicides and yes, ruining people's lives.

Simon's reach is international- sadly. We will never know the depth of his impact with the insurance companies and government entities, policy making, etc. This BS has been going on for decades! It is unbelievable as a patient to be caught in this, to be sick and not being able to access competent, science based medicine.

We got rid of Reeves last year (or was it this year, I forgot!). Time for getting rid of Wessely.

What is it like to have severe ME? Emily's story

 "Severe ME is utterly devastating. It's time for proper research and proper care". That is the simple, but vitally important message that Emily is desperate for the world to hear. Beginning months ago, she has written a letter which she ho...pes will spread her message across the Internet and garner support for those severely affected by ME. Please help her achieve this.
 
(Permission to re-post)
 
Emily's Appeal
 
It has been said that the following is hard to read. But that is all we ask you to do: to read it, to forward/re-post it and to pledge your support for the many thousands of people like Emily who have to LIVE it.
 
"My name is Emily. I developed the neurological condition Myalgic Encephalomyelitis (ME) when I was 6 years old. In April 2011 I turned 30. I still have ME.
 
ME coloured every aspect of my childhood; it painfully restricted my teens and it completely destroyed my twenties. Now, as I move into the next decade of my life, I am more crippled than ever by this horrific disease.
 
My doctors tell me that I have been pushed to the greatest extremes of suffering that illness can ever push a person. I have come very close to dying on more than one occasion. If you met me you may well think I was about to die now - it's like that every single day. After all these years I still struggle to understand how it's possible to feel so ill so relentlessly.
 
My reaction to small exertions and sensory stimulation is extreme. Voices wafting up from downstairs, a brief doctor's visit, a little light, all can leave me with surging pain, on the verge of vomiting, struggling with each breath and feeling I'll go mad with the suffering. Of course it can also be as bad as this for no particular reason - and often is. I cannot be washed, cannot raise my head, cannot have company, cannot be lifted from bed, cannot look out of the window, cannot be touched, cannot watch television or listen to music - the list is long. ME has made my body an agonising prison.
 
My days and nights are filled with restless sleep interspersed with injections, needle changes (for a syringe driver), nappy changes (as well as experiencing transient paralysis and at times being blind and mute, I am doubly incontinent) and medicines/fluid being pumped into my stomach through a tube. My life could be better if I had a Hickman line (line which goes into a major vein and sits in the heart) for IV drugs and fluids, but such a thing would likely kill me. I'm on a huge cocktail of strong medications which help, yet still most days the suffering is incomprehensible. During the worst hours I may go without the extra morphine I need as I feel so ill that the thought of my mother coming near to administer it is intolerable - this despite pain levels so high that I hallucinate.
 
I live in constant fear of a crisis driving me into hospital; our hospitals have shown such lack of consideration for the special needs of patients like me that time spent in hospital is torture (eased only by the incredible kindness shown by some nurses and doctors) and invariably causes further deterioration.
 
Many days I feel utter despair.
 
But, unlike some sufferers, over the long years in which I've had severe ME (the illness began mildly and has taken a progressive course) I have at least had periods of respite from the absolute worst of it. During those periods I was still very ill, but it was possible to enjoy something of life. So in these dark days I know there is a real chance of better times ahead and that keeps me going.
 
My entire future, and the greatly improved health I so long for, however, currently hinges on luck alone. This is wrong. As I lie here, wishing and hoping and simply trying to survive, I (and the thousands like me - severe ME is not rare) should at least have the comfort of knowing that there are many, many well-funded scientists and doctors who are pulling out all the stops in the quest to find a treatment which may restore my health and that the NHS is doing all possible to care for me as I need to be cared for - but I don't. This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it. This is something that must change.
 
And that is why I tell my story; why I fight my painfully debilitated body to type this out on a smartphone one difficult sentence at a time and to make my appeal to governments, funders, medical experts and others:
 
Please put an end to the abandonment of people with severe ME and give us all real reason to hope."
 
By Emily Collingridge 2010-2011
 
You can support Emily and everyone with severe ME by joining the "Severe ME/CFS: A Guide to Living" Facebook group http://www.facebook.com/group.php?gid=114380158590669. Both sufferers and non sufferers welcome! See also www.severeME.info

X-treme Unrest

These are interesting times. Scary. Hopeful. Stressful. Desperate.

Patients with ME have gone through the wringer since October 9th 2009 when the Science paper came out. From intense highs to the pits of the lows, when negative papers came out, intense fear, and panic set in.

See, some patients have been ill for decades. They have been left for dead. They have been insulted, ignored and marginalized.

For healthy people, it's hard to believe that someone can be this sick and yet get a good bill of health from their doctors office- Their GP have not learnt in school what ME/CFS is. All they know is, the blood pressure is good, the heart rate is regular, the patient is not blue, the CBC (complete blood count) is normal, must not be that bad huh?

Then comes the governments, whose strings are likely pulled by insurance companies. Why research a condition that seemingly has no biomarkers? Even the CDC says it's a psychiatric illness.

Patients, who have obviously lots of time on their hands, being housebound, bedbound, roam the internet, look up their disease, and what scientists do about it. The miracles of communication makes it that you can interact with scientists online. You can invite (or lure) scientists to patients forums and then you can beat the crap out of them. It's happened just recently.

Just like what is going on in Egypt, patients want out of their bad situation. And desperation makes it that any behavior, however unacceptable in a face to face situation is now seemingly quite acceptable.

This is total chaos. Patient forums is not for the faint at heart. And why on earth would patient tell scientists what to do? The situation is extremely complicated, the virus, should it be responsible for ME/CFS, is really hard to find, there is no funding, researchers are extremely reluctant to get into the field, the ones we already have are in retirement age. The more anarchy amongst patients, the least appealing it will be for incoming doctors and researchers.

It is hard to believe that patients are harming themselves doing what they are doing, but this is true. This is what's happening.

(I typed this while in relapse. Lots of headache and what we call brain fog, some call it dementia. I am sorry if this post doesn't make a lot of sense.)