Jack Osborne

[Jules A]

I applaud Jack and Sharon for bringing the diagnosis to national TV and hopefully increasing awareness of MS, but when his fiance said it was, "a blessing in disguise" I just about fell off the couch! Come on girlie, get real!

As long as people keep putting on the rose colored glasses when talking about the effects and life course of having MS, no one is going to pay much attention to the disease, lack of funding for research, or how little attention and devotion is given to other forms of MS besides RRMS!

I hope that people who viewed the show will take a little bit of time and actually educate themselves on the lifelong battle of those of us with MS, not just the pretty forms, but all of it! The losses and sacrifices we have had to make because of MS , our family sacrifices, our financial turmoils, just everything that this ******* disease has robbed us of and WILL continue to take from us!

I'm not going to apologize for my views, I don't consider them negatvie or pessimistic, but realistic.

I sincerely hope he has an easy course of MS, if there is such a thing. And that he can use his and his family's celebrity status to bring attention to our cause. Not like another MSer that is more interested in pushing his pot shops and appearing on Dr. Oz and having a very public pity party for himself.

I live in a city that the former mayor decided not to run for an additional term, finally admitting publicly that she has MS and has had for 10+ years. Never a mention of this during her term(s), and I just about froth at the mouth when I think of what contributions and awareness she could have provide during her public run.

Sorry, I have gotten on the soap box during this post, I just become so frustrated when I see misinformation or just really ignorant people doing or saying really ignorant things with regards to the facts and reality of MS.

From one CatMama to another, thank you for your eloquent post! Your words are spot on. Despite what others may think I agree that we are being realistic.

I would also assert that while the whole "blessing in disguise" thing might be an effective mindset to soothe someone's fears early on in this journey I don't find it productive long term as the reality of what MS can be takes over. To me it is more about action: what can I do today to make my unknown tomorrow easier?

While I appreciate his girlfriend's sentiments of support I bet if you ask Jack he doesn't think MS is a "blessing in disguise".

[Toomnyhats]

I would also assert that while the whole "blessing in disguise" thing might be an effective mindset to soothe someone's fears early on in this journey I don't find it productive long term as the reality of what MS can be takes over. To me it is more about action: what can I do today to make my unknown tomorrow easier

As has been mentioned his GF was refering to a change in lifestyle when she said it is "a blessing in disguise." Changing his diet & exercising IS somthing he can do to make his unknown tomorrow easier!

I watched his interview online last night. I thought for a newbie he did a very good job. After only a few weeks we can't expect him to be an expert!

He said the diagnosis process is long & complicated, sx can change from minute to minute, no 2 people are alike & he acknowledged he may not get 100% of his vision back. Good basic information that might help the general public understand this MonSter better.

Yes, maybe they have rose-colored glasses on. Who doesn't at the beginning, before sx get bad/worse? Hopefully as his disease progresses he will continue to be vocal about what he is dealing with.

[BarkingDogs]

I just watched Jack Osborne on the Talk. I feel for the guy, like I do for all of us with M.S. I thought he spoke very well and was informative.

But, did you get the feeling that the others on the show were kind of patronizing .. and acting like he was one stop from the grave?

I don't take a dx of MS cavalierly, but I also keep in mind what my neuro told me once: "You won't die from MS, but you will die with it." Some days I would argue this ...

I read somewhere that he's taking Copaxone.

[BarkingDogs]

In fact, i didn't get MS 20 years ago - or cancer or malaria, but should I get any new disease, I won't feel lucky.

this made me laugh (at myself) ... cause I've have MS, and I've had Malaria and Cancer !!!

(the malaria kicked my butt, the cancer (melanoma) is under control, but the MS? kicks my but every single day and there is no cure for any of them in sight !! )

[Sir-Voor]

"Blessing in disguise"

For me personally MS was a blessing, so I understand what she was saying.
Although I rolled my eyes when I her says it, but maybe that was just that it was coming from a person without MS.
Anyway before MS I was not seeing any doctors regularly, and I had no idea that I had the silent killer High Blood Pressure.
So in a strange way MS did save my life, and thus was a blessing.

I have to give Jack credit because although I know more about MS then does now, he knows more about MS then I did in my first years after being Dx.

“MS does not affect your life span”
The way I currently phrase that is: “With MS you have a normal life span, but you do not have a normal life.” or “It add 10 to 20 years to your life, so if your 30 with MS you feel and think like you 40 or 50. And at 60 you feel 70 or 80, and old much older you feel changes every day”

“Bravery”
I have to laugh at the Hollywood star for all saying that he is brave for coming out, mainly because they ALL say the same thing. Can’t any of them come up with an original thought?
I come out because it was accepting that I had MS, and did not feel brave at all.

[LollyLoo]

Optic Neuritis question

Saw The Talk and it got me thinking about symptoms that I have had (I do not have an MS diagnosis or any diagnosis). Particularly the Optic Neuritis and I have a question. Does ON last for days and weeks or can it be only several hours? I have had 3 instances where I had trouble seeing -- twice it was a kind of watery wavy sparkly blob and once it was a dark spot. These only lasted a short time and I really don't have any residual affects except to say that my eye "bugs me" when I read. Thanks for any input and if this is in the wrong place feel free to move it.

[piper.tillie]

I just watched Jack Osborne on the Talk. I feel for the guy, like I do for all of us with M.S. I thought he spoke very well and was informative.

But, did you get the feeling that the others on the show were kind of patronizing .. and acting like he was one stop from the grave?

I don't take a dx of MS cavalierly, but I also keep in mind what my neuro told me once: "You won't die from MS, but you will die with it." Some days I would argue this ...

I read somewhere that he's taking Copaxone.

I'm curious about the "eek" face . . .

[Ellanor]

I love the whole Osbourne family and I hate to hear of anyone who is diagnosed. I think the press has done a horrible job at reporting about Jack. Some have made it seem like a death sentence. Another said he has to seal with it in the public eye. Having it be so public is true, but he is also going to face MS with the best treatment money can buy......the rest of us have to deal with it and just hope our insurance will cover it, if we have insurance. If you have to have MS, Jack is fortunate enough to have the opportunity for the best care. I'll be he doesn't have to ration out or do without medication.

[MSW1963]

I missed the opening to one of my few such guilty pleasures, TMZ, so I'm not sure what if anything they aired on the subject of JO's MS dx.

What little coverage I did see made me cringe a bit, like the highly 'treatable' irked me since I didn't tolerate the side effects of 3 DMDs, and I don't care to think about the risk associated with the DMD I'm on now.

It annoys me when celebrities with MS discuss their disease and it is implied, is assumed or at least no one points out that the experiences of the average non-celebrity MS patient can't be compared to the experiences of those with vast resources, status, influence, etc.

Beginning with the diagnostic process, the dx rendering many of us uninsurable, many no longer able to earn a living, much less able to pay the high cost of insurance and meds without compromising the needs of our children, not to mention the stigma too often associated with trying to keep or seek employment w/a chronic illness.

As for life expectancy, my guess is that the secondary effects of MS probably end life more often than direct effects, at least for those of us who don't have a life threatening form of MS and who also won't get run over by a train.

I'd much rather have been dx'd before I stepped down from hosting my own talk show kind of funds, influence, privilege than the small annuity and DI I worked very hard for but is moderately more than a corporate America/Western culture subsistence income.

[lusciousleaves]

If I had Jack's financial resources, I'd probably go nuclear and get a stem cell transplant.

[alishape]

Me too, luscious.

[kellygrn]

There is no cure, no one know how or why dx

exists. All the money in the world will not help anything when all that can be done is pat you on the head & give a script & take your money.

Sorry but I have had this disease for 50+ years. It was not nice way back then to have MS.

All anyone can do is live the best you can with what you have at the moment.

KK

[mjan]

Well most of the TV shows showed actress Teri Garr, Annette Funicello (Mickey mouse club, Bikini movies) with primary progressive and Richard Pryor, comedian, who died. Teri was not walking very well without help.

They did show Annette in her early/middle stages and now where she can hardly speak. So yes, some of the shows covered the more progressive stages.

Jan

[NYJenn]

(I just begun a whole other thread about Jack, because I did not see this one! Maybe the moderators will catch it.)

Anyhoo...my take. Oh, he is young (26), and, who knows? He could do well. But HE WONT DIE. Today's "People" magazine features Sharon hugging Jack with the HUGE headline: I Won't Let My Son Die." GRrrrr

[NYJenn]

I'm sorry. I have to add more, having just watched Jack on CNN.

It's sweet that he is so hopeful, and educating himself.

Stem cells, alas, are still a long-shot, I think.

Maybe Sharon is what we need as someone to raise awareness. My mother cried and called my whole family to tell them. My uincle, who has MS, told my mom, "It's not as if she is dying."

But it IS a grievous disease, despite what ever medical advances made in the last 20 years.