Gretchen
Reaction score
0

Profile posts Latest activity Postings About

  • Pls just effects UMN. It causes slow progression of weakness and spasticity. Can move quickly or take 20 years to full disability. It does not cause the breathing issues therefore is not considered terminal, it does however cause bulbar symptoms eventually taking the ability to talk and eat, so not easy. Pls can turn into ALS at anytime, that's a good and bad thing. It certainly makes you enjoy each day to the full and not take anything for granted.
    How's it going today Doll? Just thinking of you and your Sis hoping that you feel the love coming from my way and wishing you comfort. I know how difficult it is. Keep me posted Gretchen.
    Love,
    Marta
    It depends, they usually list the length under the criteria, they often can run several years. The forum has a ALS drug trials section. Check it out there are some PALS here on the NP001 trial. As I said I am most familiar with the stem cell trial being conducted at Emory.
    Well, that was very disappointing. Nothing in Canada, nothing in Washington State, Oregon or California. Where there are trials one has to live nearby - not in Canada and on the west coast. I would have thought one of our Canadian universities would be doing this kind of research. Damn!!!
    Again each trial is different. If you follow the link I gave you then you can research the different trials and read the criteria for each trial.

    It is tough to say whether newbies have an advantage. Again it depends on the trial criteria. There seems to be a sweet spot where they want to be able to identify and measure a certain level of progression but at the same time not gone too far.

    The stem cell trial is funded by a company called Neuralstem and being conducted at Emory University in Atlanta, and is the one I am taking part in.

    Here is a link to a blog with info on the NP001 trial which is showing great promise and in Phase III now. As I said follow the link I gave you in the previous message as well and you will have access to all of the trials being conducted.
    http://mndresearch.wordpress.com/
    Certainly everyone copes differently and there is no book on the right or wrong way to deal with this diagnosis. Is she refusing to get a 2nd opinion because is in denial? As my diagnosing neuro told me, never let anyone tell you that you have a terminal disease without getting a second opinion. As far as the clinic there is actually empirical data showing that patients who attend a clinic live longer.

    As far as trials go they each have their own criteria and sometimes the criteria changes depending on which phase the trial is in. The Dex trial would be a good one to get into. They are doing that one all over. The stem cell trial is being done in Atlanta and you have to be local.

    Here is a link with info on specific clinical trials on the left of the web page.
    http://www.alsconsortium.org/trials.php

    Good luck and let me know if you have more questions.
    At 68 I am not into the trials,Read about TedH,he has had good luck with stem cell,there are other stories of hope on here,I think they are close to a cure and understanding cause of the disease is making headway also-------------------------------Big Hugs Ken
    Hi Sweetie,
    Have been looking at all your post,you are amazing and I am so so sorry about your sister,I now have one brother and One sister,my other sister passed in April.I just want you to know I love you and I understand what you are going though.If you have the time and money do everything now for your sister,like go on a cruise,vacation,enjoy life to the max.Anything I can do to help,will do.
    ---------------------------------------Hugs Ken
    I have had the same thoughts and fears Dear One. Believe it or not, you'll get somewhat used to it. The new normal. You will mourn each new loss. There will be many tears. But try to recognize that there are lots of people in this world that have it worse then you. Try to be aware that you and your sister are truly blessed. Put it in perspective that every living thing is headed in the same direction. We each of us has our own journy and we are obliged to do it with as much Grace as we can. It's not easy sometimes but being strong for people helps them be strong and by that action we become stronger. Try and help your sister have a good and happy life in what she has left. It's all really in your heart in mind. It hurts, I know. But if you can come above the sadness and find joy things will be so much easier. It's a trick, I know. We need a magic wand don't we?
    Dear Al, I have a lot to learn about this disease. It frightens me to the point where I want to throw up. Not go to work. Just stay in bed and avoid everything. I can not get my mind around this. I admire my sister, she is trying to work as much as she can. She says she thinks her diagnosis is wrong - something else accounts for her muscle weakness. We have both gone over the neurologist's reports. Right now, it's like we want to live in some sort of fairly land.
    We can't be doing that all the time. Hope your sis makes out ok.
    I'm sorry for your sister's diagnosis. I can understand not believing in God--though I most definitely do. Parents do their children a disservice by forcing religion on them, as it turns them off so badly. Might I suggest, just in case it would offer you some comfort--to do a little research on your own?

    I don't go to church--most of them give me a very bad vibe--but I don't believe God cares about that--Think of it like we would if we were on a jury...he's worth the 'reasonable doubt' about existence. I dislike holy rollers--so I try not to preach. But, here's something to consider about 'creation' verses 'big bang'--no one ever said the first 7 days mentioned in the bible were OUR version of 7 days. And who's to say that we weren't created LONG after the dinosaurs created first? I believe in science, too :)

    Anyway--hugs and yell if you ever need an ear.
    Hi Gretchen, it's funny thing about religion, I really don't care about any one, I just went to churches until I found one that I fit in with... and it took a long time before I did. But I was definitely seeking something in my life and all I knew was that even though I sat in the back row and cried every week, I felt better when I went. Even though I felt like an idiot half the time. This was long before my diagnosis, or anything was even starting to "go". There are many ways of believing in God and being spiritual that have nothing to do with an organized religion... I'm definitely NOT a Bible thumper :)
  • Loading…
  • Loading…
  • Loading…
Top