Camillo Ricordi, M.D.,
DRI Scientific Director
"I love Italian.......and so do you"
Hi N17,
I for one really do feel that the care for us has greatly improved over the years. I have t1 and have had since I was 12 (I'm now 26).
I am not holding my breath for a cure, though. If I see something on the news or in a paper to say there's a cure, I just feel so let down when I read the story further than the headline (as there isn't a cure yet!) and it just makes me feel really down about it all. I've nearly wept when I saw a story on the news only to have my hopes dashed.
The quote is all well and good - I DO think there will be a cure - but not sure whether it will be in my lifetime, and whether it will be before I get any complications (hopefully that's an 'if' and not a 'when' for the complications). We have to look after ourselves now, and as if there will not be a cure, or we will constantly be waiting for something that might never come. I've read that we have to go through the process of grief with illness. One of those is acceptance. I have started to accept that I have this disease and accept that there may not be a cure in my lifetime. That way, if there is a cure - BRILLIANT! - but if there isn't I haven't lost anything.
This sounds really negative, and to be honest I'm feeling a bit negative at the moment, especially as my Grandad who has diabetes has just had an amputation and it makes me feel really scared. I hope others feel differently about it all, as we all need hope.
You've mentioned stem cell research and that's a really important thing to bring up - can I also add to this thread the following?
What do people think about stem cell research? Is anyone with this illness (or families etc) against it??
This is my personal belief and opinion.
I watched my mom-in-law suffer a very prolonged and uncomfortable end of life from Parkinson's and even she, in her worst pain, was against the use of the cells from the unborn to try and cure her disease.
I don't think I could live with the guilt.
~ Jeannie
"As one goes through life one learns if you don't paddle your own canoe you don't move."
-Katherine Hepburn
"Madness takes its toll.
Please have exact change."
Sigmoid Colostomy / Crohns / Type 1 Diabetic / Ostioarthritus / Fibromyalgia / Asthma / High Blood Pressure / High Colesterol / Migraines. Ain't life a joy?
* I think it may be time for a colorful metaphor*
As long as stem cell research is done with umbilical cord blood or cloned human cells I've no problem with it. I would have serious problems FOR MYSELF to benefit from research done on little tiny humans who have been used for scientific studies. (this is sometimes labeled embrionic research)
This is my personal belief and opinion.
I watched my mom-in-law suffer a very prolonged and uncomfortable end of life from Parkinson's and even she, in her worst pain, was against the use of the cells from the unborn to try and cure her disease.
I don't think I could live with the guilt.
I'm sorry, I should have clarified.. Mom died of a combination of extreme osteoporosis (she once broke seven ribs bending over to get a head of lettuce out of the fridge!), degenerative joint disease, extreme scoliosis (curvature of the spine) from the combo of the parkinsons and the lack of spinal support, and at the end of her life she got pneumonia, which was a blessing. Even her doctor described her as a mess. The parkinsons she had was both tremors and freezes. Both of these brought on anxiety attacks so she was in constant fear of the next wave of muscle problems. She had really bad back pain and we got her an electric recliner to stretch her back in... which was great until we had an ice storm=power outage and she was trapped in the chair... She has been gone since 2000 and five years ago they didn't have all the meds they have now. I remember when she was on sinemet when it was experimental.. had to get it thru a U of Mich doctor. You are in much better shape than she was when her PD was diagnosed in 1990. There is much more research being done and many of the meds in use now were discovered too late for her.
She had many other problems besides the PD but the freezes scared her more than anything. She never overcame that fear and that is what made the disease so horrible for her. My son spent two and a half years of his adult life sleeping on the floor next to his Grandma so he could turn her every 15 minutes all night long. It was the only way she could get a handle on her anxiety, if someone could be there to turn her.
I'm sorry if I scared you. We all fear what we don't understand. I strongly suggest that you study all you can about Parkinsons and plan to do all the fun things you want to do while you are very mobile. It's a stupid disease that eventually makes travel and shopping, going to a restaurant, those things that we take for granted, very difficult. Mom was embarrassed by her tremors and freezes and especially by her wheelchair. She became reclusive and refused to go out even though we all told her we would help her if necessary. Because of her embarrassment over her disease and her anxiety about when the next 'spell' would happen she stopped 'living' long before she was really in poor health. This contributed to her depression and intensified her pain. Attitude goes a long way with Parkinsons. Hope this helps.
~ Jeannie
"As one goes through life one learns if you don't paddle your own canoe you don't move."
-Katherine Hepburn
"Madness takes its toll.
Please have exact change."