Just one person's view on the veto of stem cell research

[happynewyear]

I have multiple sclerosis and I was really hoping that this would go through. It is perhaps the last option out there for persons with MS for a cure in their life time. The treatments available now for this illness I view with a jaundiced eye for there is no real proof that they really do help or work and they cost thousands of dollars a month, an amount that is not practical for many.

I would give anything to be able to be gainfully employed once again. Thanks to this disease I cannot. Stem cell research has proved to show great promise for those with multiple sclerosis.

I can no longer work and am therefore viewed as a parasite on our society, despite the fact that I worked full-time and attended college at night for over 20 years prior to my diagnosis in 1992. The disease is taking a huge toll on me as it now stands and that is one reason I rarely post here on the DU anymore - I am too sick to participate.

However, if stem cell therapy could be refined, maybe I could in fact once again become part of society again, the part that is not scorned by others. I'd give anything to be able to move again and do things again, like climb a mountain or ride a bicycle or even read on some days (yes that is how bad this disease is, it has blinded me five times since my diagnosis). Sadly, most days, I can barely get out of bed at this point in time. I am 54 years old now and I dread what my future holds. I become so desperate at times that I contemplate suicide more often than I care to admit.

Thanks for not caring about anyone but yourself Mr. Bush. You better hope one of your twins doesn't get diagnosed with MS. Furthermore, I hope that your wife, Laura doesn't ever get diagnosed with Alzheimer's disease, Lou Gehrig's disease, Parkinson's disease or any other serious debilitating disease which stem cell therapy might be able to cure. Did Mr. Bush see that word "cure"? Does Mr. Bush know what the word means? You don't normally see that word associated with any of the diseases I mention because there is none.

Mr. Bush really does not care about the citizens in America. This veto act only proves it. Mr. Bush only cares about one thing, his Christian fundamentalist Republican "base", that is obvious. It seems to me that he wants those among us to only suffer more and it will be at his hand.

If Mr. Bush really did care about his "base" I think he would learn to stop swearing in public for the entire world to hear. I find this act of vetoing the stem cell legislation to be hypocritical at best.

So my message is clear, override this veto now before my time along with many others out there suffering from serious incurable diseases reach the point of complete hopelessness. We suffer in silence while these rich pigs that have condemned this legislation eat at the trough while condemning those of us that are very ill. Shame on them. Shame!

It amazes me that Mr. Bush says he vetoed this because it is murder. What does Mr. Bush think is going on in Iraq and Afghanistan under his direction? It is MURDER. I think I'm going to get sick when I think of these putrid words coming from the mouth of a HYPOCRITE, a liar and a war criminal as well as a MURDERER! :puke:

[Lindacooks]

1. I know how you feel. The clock is running out on my husband's

life as well. But please have hope. If we elect four more Senators this fall we can override the veto. And in two years I am SURE that a Democrat will be elected President.

And, as you say, there is a really good chance that some other country will come up with a cure from stem cells.

[fudge stripe cookays]

2. dumt, I'm so sorry.

I have MS too, but mine is much less advanced. When someone tells me how sorry they are, I tell them that I'm fine--I'm mobile, I can see, and I'm not wearing Depends yet. There are others who are far worse than me. And now I will think of you.

When I get depressed and think of what I may be facing in the future (I turn 40 next week), I just try to keep a stiff upper lip and stay tough. I feel guilty even thinking of myself when I know there are folks out there suffering as you are.

I am on Betaseron, and it really has been a godsend for me. I know you're probably progressive or experiencing a lot of relapses at this point, but it really might be able to help you somewhat.

I too want Bush to burn in hell for what he's done. And although I wouldn't wish this disease on anyone, I'm tempted in his case.

Stay strong. And please PM me if you need a shoulder.
fsc

[happynewyear]

3. I was beyond the R&R state when I was diagnosed

So it is too late for me. Beta seron is not an option for me, nor are any of the other treatments.

I would never consider chemotherapy because I do not have cancer.

I was in pretty good shape still when I was 40 years old.

Age and progression of this diesese cannot be halted IMO. Don't fool yourself. Maybe the beta seron is helping and maybe it is not. That is the truth.

:kick:

[fudge stripe cookays]

10. Well, we all cope the best way we know how.

I haven't had a relapse since last summer when I was diagnosed.

I can fool myself yes (if that's what you call it), but it seems to be working for me. Keeping a decent attitude is my way of coping. I'm still only R & R. I'm sorry you don't have that luxury anymore, if you ever did.

[happynewyear]

12. thanks for the replies and the ideas

I'll definitely check out the Buddhist situation and also I hope that there is good news coming from Canada soon too.

I was pretty upset about the last new treatment that was FDA approved. It is called Tysabra and it was pulled off of the market after two people died after being infused with it.

Now it is back on the market again. I cannot believe how greedy this drug manufacturers are. People with MS are dying from being experimented on. I find this aspect of the disease to me more frightening than the disease itself.

fudge stripe, yes I'd had this disease for years before the finally diagnosed it so much damage was already done. What stage I am at now is a progessive state but fortunately it is slow. Some days are much worse than others as I'm sure you might know.

Thanks again for the replies.

[sam sarrha]

4. i am sorry for your suffering.. i have a dear friend with MS. this veto

is a ploy to limit SCR to Corporations ONLY, it isnt stopping research.. it will not only take longer. but will make the treatment unavailable to the poor and middle class when it is developed.

[happynewyear]

6. it is too bad that the sick are caught up being nothing but mere shills

for corporate interests.

I often consider trying to find out what the toxic mix is to kill oneself. That is how bad this crap gets.

I live in pain 24 hrs. a day. I am pretty hopeless I admit, especially after this veto. But I go on anyway just because.

Maybe they will find a cure someday. I saw a man that was seemingly cured with stem cell therapy that has MS. He was on Montel Williams' show a few years ago. I was so optimistic at that time.

If you don't have the big bucks forget it. Who that is in this boat has big bucks? Who? It won't happen in my lifetime, that is obvious to me.

[sam sarrha]

8. i have a meditation program for chronic pain, i ve arthritis and back injury

i have neuropathy in my legs from a crushed vertebra, the only thing i can feel is pain in them. i have size 16b shoes and they hurt my feet, i have to take what i can get, i have 3 pairs of different shoes, each hurts my feet and legs in a different place.. so i rotate them during the day.

i found Shinzen Young's 'Break Through Pain' last year and it has really helped my quality of life. i dont really feel pain the way i used to.. it really doesn't hurt, it is sometimes uncomfortable.. but that i think is just worry, stress it will get worse.. but 'Now' it isn't really pain.

if you got to http://www.amazon.com and just type in Shinzen Young, he has a lot of books and tapes for sale.. click on the Used tab for the Book/CD 'Break Through Pain'.. there are copies used for a dollar or less, plus about $4 shipping, there are some of the CD's that are the tape set i have, they have the duologue and guided meditations in the Cd, they didn't have the tapes. but it isn't hard to make tapes if you have the CD.
the guided meditations are really good. i have been meditating for about 5 years.. the last 2 years it has been intermittent, i have been living in the Bible belt and suspenders. it really sucks here.. we are moving to Winston-Salem NC soon and that is only about 40 miles form a Tibetan Center.

check out http://www.buddhanet.net they have some meditation instruction and some info on the Buddhanet Audio section.. lower left tab home page.

keep in touch...pm me anytime i will give you my email address.. good thoughts

[elehhhhna]

5. Sorry, chroniclly ill Americans. No research and no medical maryjane,

either. Bunchawhiners.:sarcasm:

[Hell Hath No Fury]

7. CA is working on it!

We overwhelmingly passed Proposition 71 in 2004 to fund stem cell research-- here's the info:

http://www.curesforcalifornia.com/page.php?id=123

It is important to note that Proposition 71:

- created the California Institute for Regenerative Medicine (CIRM) to manage and fund stem cell research in California.

- formed the Independent Citizens Oversight Committee to oversee the CIRM.

- established a peer review process that makes sure that research funds are given in a way that is fair and effective.

- requires research that it funds to be conducted safely and ethically, and within strict rules that protect patient safety, rights and privacy.

- keeps the public informed of their activities and decisions through audits, open meetings, public hearings and annual reports.

- forbids funding for human reproductive cloning, and added a ban on human reproductive cloning to the California constitution.

- will help California’s economy by funding research that could significantly reduce future healthcare costs in the state, in addition to creating thousands of new jobs that will generate new state tax revenues.

[sam sarrha]

9. wow i didnt think they had it in them to do something right.. !!

[HEyHEY]

11. My brother in law has it as well

And he's told me that there's a DR. in Montreal doing some good work specifically with Stem cells and MS. So, fear not.

[goddess40]

13. isn't it the same as donating a child's organs when a child dies...

in a car accident. If the parents aren't going to use the embryos and they want to donate them to science then whats the problem? I do think that's the way to proceed with this, it at least would get them to think beyond linking this to the pro-life argument. (ok, I know some people don't think but it might get enough to engage some brains cells)

[LA lady]

14. I am more optimistic about drug therapy

I have MS also and have been on Avonex with good results. Although I have NO problems with ESCR, I really don't feel that it will be helpful for MS. They are already using some stem cell therapy in other countries to very poor outcome. I post on several MS boards and there are MS patients receiving the stem cells that post there as well.
I am much more optimistic about some new meds that are coming out. There is an oral therapy that should be on the market soon that is very promising. My shots are not that big a deal but it would be nice to take a pill and get even better results!:)

fingolimod (FTY720) is the name of the drug

[ismnotwasm]

15. I understand

My husband has MS and is going to start Tysabri, the drug that got pulled off the market because of 2 patients who developed something called progressive multifocal leukoencephalopathy (PML)and died from it. It's now approved with restrictions. It showed a lot of promise in delaying progression. He's stopping his copaxone. He has secondary progressive, not relapsing remitting.

It's a once a month infusion, and we're hopeful but nearly all MS treatments are just that--treatments. And many of them have side effects that are difficult to tolerate. There is no real cure on the horizen, and in some of these complicated diseases, especially autoimmune ones stem-cell research offers a lot of hope.

I thank the powers that be that there IS any treament. He was diagnosed when there wasn't much other than massive doses of hormones.

Bush is as close to complete and utter waste of a human being as I've ever seen.