CNN article - Tamara Dobson death - MS

[euphoniaa]

http://www.cnn.com/2006/SHOWBIZ****ies/10/05/obit.dobson.ap/index.html

I just caught the words "multiple sclerosis" at the end of this report on TV this morning, so I looked up the article on CNN. It's weird how you feel a tiny connection to anyone dx'd with MS.

'Cleopatra Jones' actress dead
POSTED: 7:57 a.m. EDT, October 5, 2006

BALTIMORE, Maryland (AP) -- Tamara Dobson, the tall, stunning model-turned-actress who portrayed a strong female role as Cleopatra Jones in two "blaxploitation" films, has died.

Dobson, 59, died Monday of complications from pneumonia and multiple sclerosis at the Keswick Multi-Care Center, where she had lived for the past two years, her publicist said.

At 6 feet, 2 inches tall, Dobson was striking as the kung-fu fighting government agent Cleopatra Jones in 1973. She reprised the role in 1975's "Cleopatra Jones and the Casino of Gold."

"She was not afraid to start a trend," said her brother, Peter Dobson, of Houston. "She designed a lot of the clothing that so many women emulated."

Dobson also appeared in "Come Back, Charleston Blue," "Norman, Is That You?" "Murder at the World Series" and "Chained Heat."

She had TV roles in the early 1980s in "Jason of Star Command" and "Buck Rogers in the 25th Century."

Dobson lived most of her adult life in New York, her family said. She was diagnosed six years ago with multiple sclerosis.

[lady_express_44]

Quite young for such complications, eh? :(

Cherie

[Momofthreeunder5]

Being new to the MS world, on average, how long do people live. I am 29, been on copaxone for a year and a half and take three seizure meds. I am wondering how long I may have. Not worring, just wondering.

[BBS1951]

Usually people die with MS, not "of " MS.

Usually ppl with MS live average lenght of life.

Obvioulsy there are exceptions.

[cricket52]

Hi Momofthreeunder5:

Goodness, if you have three little ones and MS you have your hands full.

No one knows how long they are going to live - MS is not a death sentence, it is a life sentence.

Ms. Dobson was dx'd at age 53. There are different kinds of MS, perhaps she had the most serious kind, since she had been in a long-term care facility for two years.

Types of MS:

http://ms.about.com/cs/aboutms/a/Types.html
http://www.mssociety.org.uk/about_ms/first_questions/life_expectancy.html

Hope those links help. :)

[0357]

http://www.nationalmssociety.org/Brochures-ManagingProg1.asp

http://www.ms-gateway.com/start.jsp?/resources/understandingms/diagnostingms/scale.jsp
Click on 'What is EDDS'
Scroll down and see where death is uncommon and scroll down further to see the additional breakdowns and the reasons for death.

The NMSS says 25% of the people with MS can have shortened live spans due to MS complications. I believe it was mentioned on the first link the types of MS there are; Progressive Relapsing is the fastest to progress. People start out with this type of MS as it describes.

[agate]

I've personally known about 5 people with MS who are now dead. One was in her 70s, but the other three were 59, 61, 63, and 65, as I recall.

[elizabeth]

I think it's rather interesting to read obits where a person is said to have died from MS. Itis usually more accurate to say that a person dies of complications of conditions that are worsened by having MS -- and my guess if that Tamara Dobson's case is one of those. Even people with extraordinarily aggressive cases of primary progressive MS rarely die "of MS": they die of pneumonias and illness that are set up by the ravages that the MS wreaks.

For most of us, our life expectancies are pretty much identical to those of people who do not have MS, which raise a really interesting question, at least for me. (I'm still a "recovering" lawyer, after all ;) )

Why is it so darned near impossible for people with MS to obtain life insurance after diagnosis here in the US?

The extremely few people of whom I am aware who have secured ANY life insurance coverage have had to pay outrageous amounts for extremely limited term coverage. Whole life coverage is entirely unobtainable, to the best of my knowledge, post-diagnosis. If in fact our moribidity and mortality figures are comparable to those of the average population, our insurability should be the same as well, unless we are being discriminated against in the worst possible way . Of course, people are discriminated against by insurers -- that's what insurance does, after all is said and done, but with life insurance coverage, it seems to be unwarranted to discrimiate against people with MS as policy holders unless the concern is risk of suicide, which can be covered by rider. It's unconscionable to make ALL coverage unavilable, simply because of an MS diagnosis.

It's sad to see Tamara Dobson died. She was really great.

[smhiles]

Yes, I have seen the article. It is sad, she was a beautiful woman from Baltimore. I am from MD orginally, also. I am sure her immune system was weaken by the pneumonia played more of a part to her death. My prayers go out to her family.

[Abby2006]

When I was dx'd in 02 I got a written report that had 'Morbidity' and it said very poor thinks that means quality of life doesn't it?

Abby

[0357]

http://en.wikipedia.org/wiki/Morbidity

Morbidity
From Wikipedia, the free encyclopedia
Jump to: navigation, search

In medicine, epidemiology and actuarial science, the term morbidity can refer to

* the state of being diseased (from Latin morbidus: sick, unhealthy),
* the degree or severity of a disease,
* the prevalence of a disease: the total number of cases in a particular population at a particular point in time,
* the incidence of a disease: the number of new cases in a particular population during a particular time interval.
* disability irrespective of cause (e.g., disability caused by accidents).

The term morbidity rate can refer either to the incidence rate or to the prevalence rate of a disease. Compare this with the mortality rate of a condition, which is the number of people dying during a given time interval, divided by the total number of people in the population. Morbidity is often what is measured by ICU scoring systems.

[ukusagirl]

I am so sick of hearing all this MS crap about how MOST people live a long healthy life or that MS may exacerbate a preexisting problem. My son is 23 and is DYING from MS-yes DYING his was diagnosed in 2006 it took 3 states and a lot of complaining and research to get a diagnosis since he had no health insurance. He took betaseron, got well, thought he was cured, moved to a state where he didnt have health insurance and could not get treatment. he then fell in love with a girl so sacrificed himself as he got sicker. I was going through a divorce so he did not want to stress me out. I got him back last year in July once she got sick of caring for him and he has gotten worse since then. I will lose him soon, this I know. Doctors don't know what to do. For 2 years before dx all we heard about was "you cant have ms you are too young" what a bunch of s*** now all I deal with is DR's saying axonal loss sorry bout your luck blah blah. treatr the symptoms blah, all he keeps saying is mom ima walk again right? what do I say? It is killing me to watch him waste away and those of you here with the "good" kind of ms will go on to live long productive lives and he will not. I would switch places with him in a heart beat if I could. Be grateful for your lives and please stop LYING to people and telling them this crap about the long and normal life they are going to have since that may not be the case. since you NEVER KNOW which of you might have THIS type of MS. Please pray for my son his name is Daniel Viera-Thank you and God Bless

ukusagirl39@yahoo.com

[agate]

Hi ukusagirl,

You're understandably in great pain and feeling very helpless and angry. Anybody would be angry under the circumstances.

You must have had to search around a bit to unearth this thread, which is well over two years old. In fact, you won't be seeing some of the people who posted in this thread on this board nowadays, quite possibly because they haven't been well enough to come here and post.

I've read through this thread, and I don't see any post that denies that some very unlucky people do have aggressive and tragic forms of MS. What the posts are saying is that these cases are so rare that most people don't have to worry about dying at an early age.

I'm sure everyone in this thread is keenly aware of people like your son. One of the first things I read about MS was just after I was diagnosed, when I went to the public library and picked up an encyclopedia, where I read that "a person with MS can be expected to live at most 10 years from the onset of the disease" (not an exact quote). And not long after being diagnosed, I picked up a Life magazine in a dentist's office and found an article (mostly photos) about a young woman with very severe MS in a nursing home.

I can think of at least two members of this board who have died prematurely of MS or complications of MS.

Maybe people like those in this thread are just whistling in the dark, but what harm is there in trying to be optimistic?

Nobody here has lied by claiming that everyone with MS will have a long and normal life. Some will have a fairly long and fairly normal life, though--maybe even a majority. We can't always look on the negative side and claim that we're worse off than we are.

But I do hope that your son WILL get better, and I hope that you aren't really as sure that he is dying as you sound. There have been people who've had spectacular recoveries from bad bouts with MS. Maybe your son will be one of those.

I'll keep your son in my thoughts.

[msmaggie]

Just one more piece of information - my father who had MS died at 83 of complications of MS - multiple UTIs, infections, his blood sugar ran crazy at the end. But he made it to 83- an age even he didn't think he'd live to.

msmaggie

[MS Bites]

I am so sick of hearing all this MS crap about how MOST people live a long healthy life or that MS may exacerbate a preexisting problem. My son is 23 and is DYING from MS-yes DYING his was diagnosed in 2006 it took 3 states and a lot of complaining and research to get a diagnosis since he had no health insurance. He took betaseron, got well, thought he was cured, moved to a state where he didnt have health insurance and could not get treatment. he then fell in love with a girl so sacrificed himself as he got sicker. I was going through a divorce so he did not want to stress me out. I got him back last year in July once she got sick of caring for him and he has gotten worse since then. I will lose him soon, this I know. Doctors don't know what to do. For 2 years before dx all we heard about was "you cant have ms you are too young" what a bunch of s*** now all I deal with is DR's saying axonal loss sorry bout your luck blah blah. treatr the symptoms blah, all he keeps saying is mom ima walk again right? what do I say? It is killing me to watch him waste away and those of you here with the "good" kind of ms will go on to live long productive lives and he will not. I would switch places with him in a heart beat if I could. Be grateful for your lives and please stop LYING to people and telling them this crap about the long and normal life they are going to have since that may not be the case. since you NEVER KNOW which of you might have THIS type of MS. Please pray for my son his name is Daniel Viera-Thank you and God Bless

ukusagirl39@yahoo.com

I will say Prayers for your family. God Bless you.

[bertabobbie]

Since your son did well on Betaseron before has he considered going back on it? For people with no insurance and limited income there is a program to help get Beta. The link is: http://www.patientassistance.com/profile/bayerhealthcarepharmaceuticals-76/ Hope that helps.

I understand your anger and fear but we are not lying when we talk about living normal or close to normal lengths of life because that is what the statistics show. However, we all know people who have died young from complications of MS. My own cousin died at 48. We just have to be optimistic that we might still have a normal life span. Otherwise our lives might be unbearable.

I hope that your son can see a neurologist who can help him with the current drug therapies and with symptom relief. And please, be optimistic, at least in front of your son. A good attitude will help him face and fight this disease. If he has no hope, as you seem to be telling him, then he might just give up and succumb to his MS. A positive attitude and environment are very beneficial for any sick person.

Good luck.

[ukusagirl]

Dan is 23 and was dx in 2006. I took him home with hospice2 days ago.

He was the most upbeat optimistic person I ever knew.

He has kept his faith right up until this moment.

He is dying now.

He has a feeding tube and a suprapubic tube and has not walked in almost 2 years,

This could be you so cherish every day as if it were a gift and don't be fooled.
MS can steal what life you have like a theif in the night.

NO one of you is any better than my son and could be as bad off as he is.

Bet you did not know there is a type of ms that can kill you in 90 days or less!

Educate yourselves. There is no room for ignornace since time is off the essence. :mad:

[ukusagirl]

There is time for hope and for reality my son had to decide if he wanted to go on a vent. He chose to die at home. Don't insinuate that I have robbed him of that. He does not remember anything more than 2 minutes now. It is eating his brain and affecting his entire body. He has lower lobe Atelectasis in both lungs one is 2/3 compromised. He does not smoke and has not for 2 years. They wanted to do a tracheostomy for the ventilator . Vents do not prolong life they only draw out death. He cannot tolerate the volume he needs in his feeding tube because his digestion has slowed. THERE IS NO CURE and this is directly caused from Dans MS. the muscles that move his lungs stopped working.

[agate]

ukusagirl, your son will be in the thoughts of everyone here who has been reading your posts, I'm sure.

As a matter of fact, most of us who have been on this board any length of time are indeed aware that sometimes MS can kill a person in 90 days or less. We have had discussions here about the Marburg variant of MS, which can do that. But thank you for reminding us.

I am so sorry that your family is going through such a severe ordeal, and I hope that you will have access to any support you need.

[Virginia]

UKUSAgirl, as Agate so beautifully put it, you and your son are in our thoughts and will be in our prayers.

Yes, we are aware that this could be any one of us. We have lost several people on this board, but none as fast as your son.

Your son has obviously been very courageous. I am sorry this is happening to him and to you.

Virginia

[sleepy1]

ukusagirl,

I am very sorry, my thoughts and prayers will be with you and Dan.

[Jules A]

Ukusagirl,
Thank you for taking the time to share your experience. I wish it was different and am sending prayers for both you and your dear son.

I also get fed up with people saying that MS won't kill us when in fact that while most people aren't as swiftly affected as your son the truth is that MS absolutely is shown to shorten lifespans. And how about the outright denial of the familial implications of MS? People are encouraged to ignore any concerns about the genetic component when considering having bio children, sigh, and rarely do people even consider the financial aspect either. :(

Being positive is one thing but imvho there is a ton of denial on the MS boards although I have to say that I feel this particular forum is one of the most realisitc, research driven, tolerant sites I've found. As a nurse I have cared for numerous patients like your son and there is nothing kind about this stinking disease. It is a thief and frankly will be the COD for most of us in the end.

Be well.

[Matthew's Mom]

My prayers for your son and you. :(

I was never under the impression I would live a long and healthy life.

God Bless,
Pamela

[terric]

I'm taking a wild guess here, but perhaps she had MS for years without being dxd. Years back there weren't any meds to help, everything was palliative.

I'm 59 and probably don't have MS (probably strokes for many years), but I'm also a nurse and things for MS were SOOO different then.

Treatment and understanding of MS is a thousand times better.

Just putting in my 2 cents.

terric

[lunarrays]

ukusagirl - i can't begin to imagine what you are going through, but i can understand your anger. i agree with you, that we are being lied to, but don't get angry at thr people on this forum...remember, they (we) have MS. as you know, MS has many forms, from a pain in the *** to a living hell. most of the people on these forums are somewhere in the middle and each has a different way of dealing with it. your anger should not be directed at people who have MS, but at the people who tell them (us) these lies...doctors, pharmas, and insurance companies, they are the ones who lie. you won't find many people here that have been told by their doctors that "sooner or later, MS is going to kill you". i don't know how many people know that your life span with MS will be cut short 10-15 years on average, but most people do know that they will have to struggle with this the rest of their lives.

[Mitch]

I am 45 and have always known that my PPMS will kill me soon. I am not fooled by all these RRMS victums that can still golf every Saturday. I simply wish them luck and hope it is a long wait for them to be like me.

God bless you all.

Mitch

[agate]

Hi Mitch,
You say:

I am 45 and have always known that my PPMS will kill me soon.

I hope you are wrong, and I hope you don't mind if I ask how you've "always known" that your PPMS would kill you soon?

I've been kicking around the MS scene for quite a while but can't recall ever finding any statements to the effect that PPMS kills people any faster than other types of MS....

For example, there is this article:

http://www.webmd.com/multiple-sclerosis/features/what-to-expect-with-primary-progressive-ms

I have heard that a rare variant of MS, called the Marburg variant, does in fact prove fatal a short time after diagnosis for some people.

[ukusagirl]

:(I just wanted to tell you that my son Daniel died on July 5th 2009. He suffocated and could not breath. he died from respiratory failure. they listed it as pneumonia but he did not have pneumonia. The doctors refused to put him on a vent since he could no longer speak and communicate. MS can and does kill people. Educate yourselves. Faith and prayer and hope will not always save you . Sometimes you don't get better. Sometimes God lets you suffer terribly and die. It is a sad fact. God is cruel. May all of you reading this be the exception. my son was not. no reason for me to post here now. Good luck to you all. Love your sick friends and family members and yourselves. You never know how much time you will have.........

[Aiko]

((((ukusagirl)))

I am so sorry for the loss of your beloved son. May your memories of Daniel in good health be a blessing to you always and may you find peace and solace in the days ahead.

Aiko
*forgetmenot

[0357]

ukusagirl,

I'm sorry for your lose; I cannot image what you have and are going through. MS can affect ones chest muscles that allow us to breathe.

The National MS Society say people live with MS for the average of 20 years; in their Advanced (or Complications of) MS brochure. The NMSS say people often die of complications of MS; Search Complications of MS or Advanced MS on their main site.

The Kurtzke Scale or EDDS Scale can and does list Death as Stage 10; this they say is due to continual seizures, respiratory problems or coma.

[agate]

0357, I don't recall ever seeing the statement you mention in an MS Society document--that people with MS live an average of 20 years.

I can't find the brochure you mention on the NMSS Website either though there is a list of brochure titles. There doesn't seem to be one on complications of MS or advanced MS. It's quite possible I just didn't find it.

I would appreciate seeing this in print. I had heard this statistic many years ago but in the last 15 years I can't recall seeing it anywhere. In fact, I've been seeing statements that people with MS can expect to live out a normal life span--or that people with MS on average will have a life span 5-7 years shorter than other people.

[Numbers]

In fact, I've been seeing statements that people with MS can expect to live out a normal life span--or that people with MS on average will have a life span 5-7 years shorter than other people.

Yeah, I agree. For years (and years) this what I have always read. The precaution given is that one must be aware that problems caused by MS, e.g., urine retention which could lead to a bladder infection. If not addressed, problems such as these can produce serious health issues. Enough of those type of untreated problems can lead to a shortened life span.

Numbers

[0357]

agate,

In the National MS Society's Advanced MS brochure in 1992, it stated people with MS had an average of 20 years to live after diagnosis.

0357

[Parsi]

Well I certainly hope you aren't correct about 20 years after onset. I started experiencing chronic fatigue 25 years ago which may have been the first sign of my MS. I'm certain I had the disease 23 years ago. Should I expect to drop dead any minute now? I hope not.

On the other hand it's a possibility. But then deaths on mother's side, completely unrelated to MS, commonly hit before age 70. Heart disease is a common problem.

I have no close familial ties with any other MS sufferer, though I do have two distant cousins on my father's maternal side with MS. The one apparently is doing fine. The other died at 37 from the disease according to her mother. I can only guess that it was an aggressive form of the disease.

[0357]

parsi, the National MS Society said the twenty years started after you were 'diagnosed' with MS...

[Parsi]

1992 is 17 years ago. They apparently have updated that information.

Under "Prognosis" their site now says
It is generally very difficult to predict the course of MS. While the disorder varies greatly from one individual to another, most people with MS have a normal life expectancy. A few patients with very severe disability may die prematurely of infectious complications (such as pneumonia) so that the overall life expectancy is 95% of normal.

[renee]

I was dx'd w/MS in december 96 and have been a (paraplegic) #8 on the disability richter scale for 13 years. Somewhere I read that the lifespan of a person w/MS is 7 years shorter than the general population.
That is average.

Where you live and the healthcare you get can be a huge factor.
I live in up up state NY.
Financially devasted by my onset I landed in the arms of Medicaid and Medicare.

If I lived in one of many other states in this country or even a different region of NY,
I may well have died from complications that have arisen since my dx.
I have been fortunate.
As much as I would like to eventually move from this climate I generally receive good care and must consider healthcare options anywhere else.

usauk- I am so sorry for the horrible experience you, your son and your family have endured. American healthcare failed your son.
Maybe, with better and more consistent medical attention early on and beyond, he would would be alive, maybe not.
The whole thing stinks.

The spectrum of life expectancy is so broad.
The quality of living that each of us experiences can be so different.

I occasionally go to a NMSS seminar hoping to learn one thing I did not know to improve my life.

The seminar includes inspirational speakers w/MS .
I am never inspired. I can't relate to them at all.
Although happy for them- these people have fairly normal lives.
I live more like a rehab runaway.

I like my MS facts like I prefer my coffee- not too dark and not a lot of sugar.

[mmcc53]

The number I have seen before (sorry - the links were lost a few years ago when my computer crashed) was that the AVERAGE life expectancy for people with MS is 7 years shorter than for the population as a whole.

Keep in mind, though, that that number includes those MSers who have very severe MS, like Cleopatra Jones and suicides.

[mmcc53]

I am so sick of hearing all this MS crap about how MOST people live a long healthy life or that MS may exacerbate a preexisting problem. My son is 23 and is DYING from MS-yes DYING his was diagnosed in 2006 it took 3 states and a lot of complaining and research to get a diagnosis since he had no health insurance. He took betaseron, got well, thought he was cured, moved to a state where he didnt have health insurance and could not get treatment. he then fell in love with a girl so sacrificed himself as he got sicker. I was going through a divorce so he did not want to stress me out. I got him back last year in July once she got sick of caring for him and he has gotten worse since then. I will lose him soon, this I know. Doctors don't know what to do. For 2 years before dx all we heard about was "you cant have ms you are too young" what a bunch of s*** now all I deal with is DR's saying axonal loss sorry bout your luck blah blah. treatr the symptoms blah, all he keeps saying is mom ima walk again right? what do I say? It is killing me to watch him waste away and those of you here with the "good" kind of ms will go on to live long productive lives and he will not. I would switch places with him in a heart beat if I could. Be grateful for your lives and please stop LYING to people and telling them this crap about the long and normal life they are going to have since that may not be the case. since you NEVER KNOW which of you might have THIS type of MS. Please pray for my son his name is Daniel Viera-Thank you and God Bless

ukusagirl39@yahoo.com
I am very sorry to hear about your son, But, you and he need to do some research. For one thing, NO ONE reputable and no medical site would ever claim that betaseon is a CURE. It is a treatment. There is no cure.

There are other drugs available which can do a lot to help slow or prevent further deterioration and some which can even reverse a lot of the problems. Is your son on a treatment drug If not, get a new neuro - and make it an MS SPECIALIST. If your doc doesn't know what to treat severe MS, then you need a new doc.

It is very unlikely that your son will die of MS in the near future. If he is not getting treatment with a disease-modifying-drug (DMD) then he may very well keep deteriorating though. You said the betaseron reversed his problems. What is he taking now?

Medicare and Medicaid cover many of these drugs and the drug companies have programs to provide the drugs to those who can't afford them.

Has he been back to see the doc who diagnosed him?

Your son has to start taking some responsibility for his treatment. Thinking he was "cured" means he didn't even do the most basic type of research - like reading he information which came with the betaseron. Hand him a phone or a computer keyboard and tell him to start reading. Then tell him to find a MS SPECIALIST in a large urban (preferably teaching) hospital. Go in there with him and with both of you having done a lot of reading.

If he is not doing anything to get the drugs and treatment he needs, look into depression - it is very common and can be caused by the MS, not just in the sense that the MS gives people something to be depressed about.

This Board has had many discussions about the different type of MS and its severity, including discusions about the reduced life expectancy.

I have MS - not a mild form, but several DMD's have done wonders over the years.

I also have a daughter who is VERY severly disabled from a bunch of autoimmune conditions. I completely understand how you feel, but the answer isn't to blame those who have less severe forms, it is to fight your way through idiot doctors, and lack of treatment and get your son some treatment. You can also look a clinical trials.

If he hasn't tried Novantrone, Tysabri, then why not? MEdicare/Medicaid covers these. There are others.

[Numbers]

mmcc53,

Here is the 28th post in this thread:

:(I just wanted to tell you that my son Daniel died on July 5th 2009. He suffocated and could not breath. he died from respiratory failure. they listed it as pneumonia but he did not have pneumonia. The doctors refused to put him on a vent since he could no longer speak and communicate. MS can and does kill people. Educate yourselves. Faith and prayer and hope will not always save you . Sometimes you don't get better. Sometimes God lets you suffer terribly and die. It is a sad fact. God is cruel. May all of you reading this be the exception. my son was not. no reason for me to post here now. Good luck to you all. Love your sick friends and family members and yourselves. You never know how much time you will have.........

[agate]

ukusagirl, if you're still stopping by to read here, that is so sad about your son--and I'm sure everybody here has been stricken by the news though some of us (including me) needed to have your post #28 brought to our attention by Numbers (thank you, Numbers!).

0357, thank you for giving the source of your information:

In the National MS Society's Advanced MS brochure in 1992, it stated people with MS had an average of 20 years to live after diagnosis.



In terms of medical knowledge, 1992 is very ancient. In fact, an expert doctor once told me that in reading medical literature, you can ignore anything more than 10 years old.

With MS, the disease-modifying drugs, along with improved methods of treating infections and other MS-related problems, have made it possible for many of us to live out normal life spans.

I wish that ukusagirl's son Dan could have been so lucky.
A loss like yours never really heals but time will diminish the pain. I hope that you have people around you to support you in this difficult time.