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Thread: By way of introduction

  1. #11
    Join Date
    May 2007
    Posts
    12,901
    Blog Entries
    5

    Default Dr. Steenblock

    I have to agree that some of the Steenblock book is good, however, I had not posted this information before and was somewhat reluctant to, but one of our Pioneer founding members contacted Dr. Steenblock and inquired about COPD treatment. Dr. Steenblock said he did not consider COPD a serious disease and his efforts were going elsewhere. This was a very disappointing answer for sure. His book does give good information on how stem cell therapy works, however, his diet is way to strict for most humans and I was never able to understand exactly why he was eliminating so many foods. Anyway, glad to see you caregiver's are able to be here for each other. I didn't mean to critique or review books in this section, but there are many of us behind the scenes always checking on new clinics, doctors, etc. and the information from SRI was not what we wanted to hear. SRI is the institute that Dr. Steenblock has.
    First treatment in 2007. Pioneering ever since.

    Barbara

  2. #12
    Join Date
    Jun 2007
    Location
    Vineland Station, Ontario, Canada
    Posts
    36

    Question Hey Barbara

    Hi Barbara,

    Sorry, I didn't know that Dr. Steenblock has made that statement.....if I had known that before, I probably wouldn't have bought his book.....poohey on him! I do get the impression from his book that he seems to lean more toward brain injuries, CP, etc....more things to do with neurological and such problems. But, that's what his clinic focuses on, isn't it?

    It does have some good info it regarding stem cells and I've found it informative that way but as I said, wish I'd known he'd made that comment and I would have found someone else to donate my money to....

    Hugs,

    Mary

  3. #13
    Join Date
    May 2007
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    12,901
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    5

    Default I donated too

    Hi Mary - This information was only received a short time ago. I too bought his book and "donated" to his cause. I certainly cannot be upset with anyone that is pioneering stem cell therapy, but I can be upset when someone says COPD is not a serious disease. This forum is for us all to learn from. He has been invited to comment on this forum, but so far we have not heard from him. The invitation remains open.
    First treatment in 2007. Pioneering ever since.

    Barbara

  4. #14
    Join Date
    Aug 2007
    Location
    Palm Beach County, Florida
    Posts
    28

    Default Welcome Regine!

    I apologize for not responding sooner but I am chest high in boxes as we are moving on Friday! Took advantage of the real estate slump to buy a new home for ourselves.

    Nelson had his "stem cell cocktail" on June 5th and is showing marked improvement already. He will be 71 in November and has had COPD for 15 years. He's been on oxygen 24/7 for the last 3 years. (2 bouts of pneumonia within 3 months, finally did him in)

    I don't believe there is a problem with cell rejection when umbilical cord cells are used, but I could be wrong.

    As to the emotional up and downs...it's like being a newlywed all over again, what a drag sometimes. lol. Sometimes I become furious over some little bit of nothing simply because I'm tired of doing All the physical work around here. Or I feel unappreciated or undervalued. It never lasts long but it's fatiguing nonetheless.

    Does your husband suffer with frequent SOBs? I can tell you this for certain...Nelson never has that problem anymore and it is soooooo very wonderful not to see that panic and desparation in his eyes any longer.

    Hugs from,


    Anastasia

  5. #15
    Join Date
    Aug 2007
    Location
    Palm Beach County, Florida
    Posts
    28

    Talking Mary!!!!!!

    We have not chatted in forever! How is the fund raising going? How is Doug doing these days? Did you find out why they rejected his application for oxygen? Something sounds wrong with that. What about the rest of your family? Do you have any children? No, I'm not writing a book but I want to get to know ya, kiddo!

    Hugs from,


    Anastasia

  6. #16
    Join Date
    May 2007
    Location
    New Hampshire
    Posts
    1,979
    Blog Entries
    1

    Default

    Anastasia

    I'm so happy to hear Nelson is showing improvement. I believe that losing the shortness of breath is even more important than losing the O2, because the SOB is what limits our activities - not the O2.

    I don't envy your packing and moving. Good luck in your new home.
    Still Pioneering
    Had UC treatment April 5th, 2007
    Had autologous treatment March 19, 2010
    Had bone marrow and adipose stem cell treatment (autologous) June 16, 2010

  7. #17
    Join Date
    Jun 2007
    Location
    Vineland Station, Ontario, Canada
    Posts
    36

    Thumbs up Anastasia

    Hi Anastasia,

    So good to hear from you and I don't envy you packing to move at all. We did that 2 years ago and I swore I wouldn't move again till the Rapture comes... Also, very glad to hear how well Nelson is doing!

    Haven't gotten very far with the fundraising yet....still trying to figure out in my head what might be the best approach to it. We've had some very extenuating circumstances this summer and a lot of people have helped us out willingly and I'm trying to see what might work best when I start looking for funds for something totally different. It's probably me and my pride getting in the way and something I need to work out myself. I won't go into a lot of detail and bore everyone with it all.

    Doug is doing pretty well, feeling better these days. He finishes up rehab this Fri. and has now been in there since June 4th (minus a week). He's there 5 days/wk. and comes home on weekends so I've had even more responsibility than I normally would. Needless to say, it's been a trying summer.

    Kids.....yepper, I have 2 boys who live in Kentucky. My youngest is married and I have a grandson from him and another grandbaby on the way. My oldest son isn't married and walks to his the beat of his own drummer... Doug has 2 kids, a boy and a girl. We have 2 grandsons from his daughter and his son is divorced. My dad's still living and just had valve replacement surgery in Cleveland but is doing very well. He lives summers in Kentucky and winters in Ft. Myers, FL. I also have a brother who lives in Naples but we don't stay in contact much with each other.

    As far as the oxygen goes, Doug never applied for it. It's never been addressed because his stat levels stay above the 88% mark and that's the criteria for getting oxygen. I have no idea if he'd be better off with it or not but it's never been brought up. I have to think it's because he's more of a CO2 retainer, which causes more SOB.

    Which forum were you all visiting last night? That one sounds like a dandy. I've gotten to where I very seldom read on many of them anymore, it's so much of the same repeat things and not much new info. I just don't have time for that anymore.....I did more when I first got serious about finding out all I could about COPD and do try and keep up with anything new but there's so few Canadian sites that it's hard to stay abreast of things happening here.

    So, Ms Anastasia, tell me a little more about yourself now.....since we're only a handful of caregivers here, we might as well all get to know each other as well as possible. Who knows, maybe we'll find even more similarities and see why we react like we do, etc.

    Hugs,

    Mary

  8. #18

    Default

    Thanks so much to all of you who are in the same "boat" with me, I guess.
    My husband, Howard, was diagnosed in 1989 with COPD. He was smoking at the time and he was told if he did not quit he would not live to be 60. (he was 51 at the time).

    When he was 65 we had a big Birthday party for him. He was doing pretty well and not on oxygen.

    He is now 68 years old.

    The Hurricane Katrina came through this very weekend two years ago. Right after that, Howard became much worse and could hardly move about. He went to the Dr. and they thought he was going to pass out walking down the hall to determine if he needed oxygen if his levels dropped to 88. The Dr. himself said they were worried about him but that he had "adapted" to a lesser consumption of oxygen over the years.

    Long story short, he has been on O2 since the hurricane (2 years) and is becoming more dependent on it. We are scheduled for stem cell treatment on Sept. 20. He is so SOB now it is hard for him to carry on a conversation and to walk for more than 15-20 feet without resting (on oxygen).

    Since the Dr. does not recommend flying we will be driving to CA (at least days there and 5 days back). We are NOT LOOKING forward to the trip but we ARE looking forward to getting it done and getting back home. Howard insists on doing some of the driving but has conceded to let me do some too (that shows you how desperate he is - HA)!

    Just to let you know I appreciate all of your sharing of your situations and hope I have not bored you with ours.

    Susan

  9. #19
    Join Date
    Aug 2007
    Location
    Palm Beach County, Florida
    Posts
    28

    Default We had a lovely drive...

    Hi Susan,

    Nelson and I drove from Palm Beach County Florida and it was a great trip.

    Where's your starting point?


    Anastasia

  10. #20
    Join Date
    May 2007
    Posts
    12,901
    Blog Entries
    5

    Default O2 dependency

    My chiropractor said a person can become dependent on O2. I am not advocating anyone should quit using O2 when they desaturate to unacceptable numbers, but I have noticed that I have almost had to learn to breathe deeply on my own again. At first it was real scary and I was always looking at my oximeter. Now I can tell when I am at the point I need to put the O2 back on. I can easily take just a very few deep breaths and get back up to 90 with no O2 when I slip to 87 or 88, but if I am really exerting myself, I am not at the point to go without O2 for very long. It is a relearning process and I will argue with anyone that says it isn't. I don't think I would even be getting the opportunity to learn to breathe on my own again if my lungs weren't regenerating. I think Howard will greatly benefit, but he must be patient. I know Nassin was taking a lot of meds and was able to reduce his usage including getting off of prednisone for good. We are looking forward to your road reports since you said Howard would be taking his laptop.
    First treatment in 2007. Pioneering ever since.

    Barbara

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