Ann Romney - Multiple Sclerosis Part Two - (Attitudes)
First I want to say in part one I mentioned 1988 which I noted from a printed version of Mrs. Romney's interview was incorrect, she was diagnosed according to the TV Interview in 1998. Being diagnosed in 1998 and not knowing the statistics of her own personal disease, it would appear she is dealing with relapsing/remitting MS, yet I could be wrong.
MS comes in many ways, affecting individuals differently, since the numbers of those diagnosed according to the National MS Society has climbed to 400 Thousand, and in the 1980's people had no idea what MS was, it makes you think, could this be a combination of several diseases? Why are so many people being diagnosed at this time, and were not before, and why are so many afflicted with symptoms which appear to be MS and may be only Probable MS?
One patients may spend months in a wheelchair because of weak legs, and never need it again. Another my lose their vision, only because of the advance in medication, be able to save their sight. You may see someone with a cane one day and without it the next - all of these things and so much more makes it hard for the MS patient, people begin to doubt if you even have the disease. You may hear, "Is it really MS, and how did she get out of a wheelchair?"
Since I wrote Part One concerning Mrs. Romney and her MS I have watched two additional interviews. Although she is still talking about the hardship, she must understand how lucky she is. This should be emphasized to those 400,000 cases of MS around the world.
She must understand chronic MS patients won't be like her, and she is lucky, due to the time frame the medical profession believes that the first 7 - 10 years predicts what you will be like for the rest of your life, living with MS. In Mrs. Romney's case, relapsing remitting would probably be the course she is experiencing, depending on the time between additional flare ups. You see, Mrs. Romney has been extremely lucky to have symptoms come and go without stopping her from additional complications. To look at her, you would never know she had MS, but her immune system could cause her to become over tired when over doing it, she may lose her balance and walk like she just stepped from a bar stool - Ataxia - another symptom of MS. Although resting is always part of a MS patients word of advise when they feel an exacerbation coming on, I am sure Mrs. Romney rests. In a way it reminds me of the time when Mrs. Kennedy had to rest because of her pregnancy and could not attend all the functions, it did not hurt the election of the President then, and should not hurt any candidate - besides people with MS, some are just like you, they have one attack and never have another, or a few exacerbation's which are concentrated in the same area of the central nervous system. So, MS isn't as bad as it sounds, and I believe with the numbers being over 400,00 diagnosed, we are looking at a possible combination of many diseases without a name.
But I continue to say how lucky she is to have had this disease for twelve years and "look so good." An article I wrote once about MS - "But you look so good."
Having MS and looking good brings about questions, as I mentioned. But bumping into walls, experiencing Ataxia, problems with chronic fatigue and more, are just a few things she has learned to cope with, she may also have stiffness, cramps at night that go away, and vision problems. Many different things can come and go. But she is not confined to a wheelchair, and she is participating in the campaign, which means she isn't in the midst of another flare up. The further away a flare up - the more likely you will see less and less of the symptoms, few problems, and return to a normal life.
My experience with MS comes from being on the Government Relations Panel for the MS Society in my State in the 1980's - the 1990's. By now you probably have guessed I was diagnosed with Multiple Sclerosis before there were any MRI machines, and a diagnosis came from a clinical examination. To explain the difference in MS in my case and that of Mrs. Romney, I was treated for vision problems which effected the optic nerves, unfortunately they did not give me the steroids which removed inflammation until it was too late. It took several different doctors to see me, before they understood what they were looking at. The tests were horrid back then, with dye injected into your brain while you were sitting up in a chair, yet it would not show MS but a brain tumor, there was nothing that showed MS. (I was thrilled I did not have a tumor.) My eyes never did improve, as with the case of others, but the majority of cases today do improve because of medication and patients treated immediately, with anti-inflammatory drugs given intravenously. For several years I gave up what I loved, writing, when a woman came to install (Paul) one of the first talking computers. I was doing much better when I went for a second opinion and to the best Neuro Ophthalmologist in the state of Mass., who told my husband and I, "She will be totally blind." I left the hospital smiling, knowing she was wrong, and I was right. It is difficult for me to see far away, but with the advance of eye glasses at a strength of 700 I can see as well as you, close up. I have no other problems, lucky like Mrs. Romney, and the time lapse has been so long, it is close to 98% that no other attack will cause me to fall back into a wheelchair, or walk like a drunk, or cause problems with weakness in various parts of the body.
So when I tell you Mrs. Romney should be praising her luck - I know where I am coming from, since I do know many individuals who were not as lucky. Yes, I understand her worry, but it should be over with by this time, with all the support, the relapsing and remitting of the disease, and her own self - looking at her you would not know she was ever sick. A plus when it comes to long term cases of the disease, these people usually have few attacks, or may never have another. I wish I could watch an interview where she is happy, she has one of the least progressive of the list of types of MS out there. She should be sending positive vibes to others. I have seen a positive attitude heal many diseases. If this is the case I would say wipe away those tears Mrs. Romney and put a smile on your face.
When doctors tell you, you will be totally blind, not blind according to the charts, and when the doctors tell you, you will never walk again and I am walking, swimming, doing everything I normally would do - except drive a car, because of distance, or near sited. (not able to see well enough at a distance) was it the doctors way of always telling the patient to prepare for the worse, and in many cases telling patients all the bad and not the good.
As a person who understands where she is at, and probably will remain at this stage of the disease with a few flare ups called exacerbation's, which go away, leaving you with little or no evidence - Mrs. Romney is the type who people will say, as my article reads, "But You Look So Good." People look surprised when they learn she has MS. But as I said, with the growing number of cases now, compared to early on when people never heard of the disease, could this be a combination of different disorders, with like symptoms, but different outcomes?
I have traveled the world with MS, been to nearly all the cultural centers, written in museums about paintings, how they appear to me, and walked a mile in my shoes, as the old saying goes. I have never been so pleased to say, I was one of the lucky ones who accepted what was handed to me but fought what they told me, now as Mrs. Romney, "you look so good." And with a smile and a heart filled with thanks and the doctors and knew technology I never think of MS, except when I want to drive. So live in cities, walk for your health, and-or push a wheelchair, don't ever give up on a cure or a possible set back that leads to complete recovery for several years. MS patients - most people know someone with one form of the disease or another. It is very common.
The host of the show on CNN who interviewed Mrs. Romney said, "with MS you are good one day, better the next, etc." in one way he is right, but these are small flare ups of a prior problem, like pain in your legs - pain which they believed never was associated with MS.
The first problem, and for many, are the eyes - when I told a doctor a knife was entering my eye, he told me pain is not part of the disease. Right then and there I wanted to tell him it is a part of something. Aren't doctors the ones to research and find out? Today pain is listed as one of the most common parts of MS flare ups. The host of the interview mentioned, one day your fine and the next you are not, one day you are fine, and the next you are not. He repeated in that way. The issue he missed, no explanation as to the good MS and the bad MS regarding the different people who never have another attack, or those with chronic progressive.
When a patient is exposed to heat they show symptoms of MS, most of the time, which is usually fatigue, or tired and weak legs. Another symptom could be coming from "over doing it" and of course Mrs. Romney is doing more during this election period then other periods living with the diagnosis of MS. One thing you can't do is think about it, you must go one with your life as if it wasn't there. There are certainly devastating diseases and if given a choice, those with MS would keep what they have. I am sure Mrs. Romney had a great deal of help when it concerns her diagnosis or setbacks.
I am sure she had all the physical therapy she needed. This is where other MS Patients suffer, and the disease may become unbearable. It also depends on the patients' doctor and the medication they are taking. If she was diagnosed in 1998 it was during the time when those newly diagnosed were offered a drug to slow down or even stop the disease. I am sure many of those patients ended up with relapsing, remitting MS.
One thing that was missing in the interviews was the positive attitude she should carry around with her, not the memory of the bad days but the coming of the better days for a MS Patient. Even by appearing happy, not sad, she is helping those 400,000 plus patients.
Probable MS. is another diagnosis, when you have the clinical symptoms but they no longer cause problems, (note, not all lesions show up on the MRI) and doctors cannot give you the name MS unless you have more than one attack in space and time, in different parts of the nervous system - Probable MS could mean it may be a different problem all together. I think of my own case where problems with vision had begun with a Great Great Aunt in the late 1800's - and many people on one side of my own family have vision problems, could this be a maternal gene? Could MS be several diseases lumped together as a catch all - with such alarming numbers, and the thought, no one knew was MS was when they gave me that title. <S> At the time I searched everywhere for glasses to help, and it was a blessing, technology helped, when these online stores provided me with 700 lenses. I now see as well as you.
When we see Mrs. Romney, looking so good, she should consider herself lucky, as I do - and be a positive advocate for the disease, no one would know that she had this disease - so with the help of her husband and other's she gracefully climbs the stairs to the podium. Her balance is perfect, she talks without slurring her words - so in my own personal view, she should be so happy, and show others, those 400,00 plus individuals that yes, you don't have to be one who suffers, and there is a chance you can have a normal life. I wish she would look forward instead of backwards. I could see the pain, but for her to keep up the spirits of hundreds and thousands of others, a smile, a bit of triumph and believing she will not suffer due to her past, although she could help many. You know, a simple smile and a positive attitude go a long way.
One new MS patient is diagnosed every sixty minutes - this is what makes me believe we are looking at different diseases, which I do believe will be found in the future.
I can tell you the more positive you are the better off you are. Your chances of staying stable, without additional exacerbation's are like other medical problems, a strong will and a positive attitude goes a long way. Patients tend to survive. The same is true with MS. I believe Mrs. Romney and her family should be showing the positive side, how well she is doing, helping others, and in respect, telling others how important it is to keep the positive attitude.
My other question goes to the candidate, Mr. Romney. I would like to know since you have experienced a possible long term disease in your own household - will you make the drugs available to those who can't afford them, the drugs which are researched through the government, tested, through the government, and then too expensive for those who are in need? I have a friend who purchases a three month supply of a drug not covered by insurance, costing 9,000 dollars. Tell me, this is a person who needs this medication, and simply can't afford it.
And, will you understand the needs of those who are not as lucky as your wife when it comes to long term health care the normal time given to patients for physical therapy as an out patient is anywhere from 7 - 20 days. Physical therapy is one of the most important avenues for the MS patient, and it should not be ignored in any disease effecting the limbs and central nervous system.
I am pleased that your wife, Mrs. Romney, is doing so well - although her view has been that of negative when a positive outlook as mentioned above only gives others a look at a chance of improving their future. And once again, remember those who cannot afford the treatment, and must do without proper care.