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03-30-2015, 07:43 PM | #1 |
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Not Car related BUT Car guy related !!!
As a lot of you know I have been diagnosed with ALS.
A few of you know I have been given the opportunity to partake in a research study called Brain storm research study to find a cure for ALS. I am one of only 48 people in the United States to be involved in this study. The procedure is they harvest some of my Bone Marrow then rework some of the cells from the Bone Marrow and in 24 days it is reintroduced ( injected ) back into my spine & 12 spots in my right arm. After that I am back and forth to the hospital on specific dates & time to track the progress of the procedure . Up to today there has been 3 visits to the hospital to do all the work up's for the start of the procedure. Today we went in for the Bone Marrow Harvest. All went well & am not hurting at this point but we will see what the morning brings. We are hoping that this Research study will have " SHOCKING " ( just to keep it car related ) Results. Not just for me / I feel in my Hart of Harts this won't cure me but maybe slow the progress of this Disease. My hope is that this helps in some small way to cure ALS in the 30,000 + people that are affected in the United States. As a side note Research is finding that the single LARGEST individual group that is getting effected is for some reason the MILITARY If you would like any information about what I know about ALS or would like to donate to the cure of this Disease email me at: [email protected] It's a little late to go to the garage now But in the morning it's back to my own form of " SHOCK THERAPY " . |
03-30-2015, 07:49 PM | #2 |
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Re: Not Car related BUT Car guy related !!!
Keep up the fight Bill , were all pulling for you. MP
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03-30-2015, 07:52 PM | #3 |
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Re: Not Car related BUT Car guy related !!!
wishing you all the good luck possable...
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03-30-2015, 08:00 PM | #4 |
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Re: Not Car related BUT Car guy related !!!
hang in there Bill its not fun getting old but every day they find a new way to keep us going were with you
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03-30-2015, 08:18 PM | #5 |
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Re: Not Car related BUT Car guy related !!!
Mike:
Fitchburg is still up in the air right now will have to wait till it gets closer. To see how I am doing. But those donuts may just get me there !!! I still have not sent you the envelope yet will try to get to it in the next couple of days. |
03-30-2015, 08:25 PM | #6 |
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Re: Not Car related BUT Car guy related !!!
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03-30-2015, 08:25 PM | #7 |
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Re: Not Car related BUT Car guy related !!!
NO WORRIES Bill ,,I,ll pay when I get there , hope to see you there though ! Prayers sent your way MP
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03-30-2015, 08:27 PM | #8 |
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Re: Not Car related BUT Car guy related !!!
My prayers and those of my mens group from church are with you.
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03-30-2015, 08:29 PM | #9 |
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Re: Not Car related BUT Car guy related !!!
I am retired from doing 30 years medical research at the University of Washington. People like you are EXTREMELY important to further scientific understanding of diseases. Thank you so much for your participation. Best of luck to you.
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03-30-2015, 08:44 PM | #10 |
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Re: Not Car related BUT Car guy related !!!
Bill, You are a good and generous man to volunteer your time & body for this study! I pray that all goes well for you. You will be in my prayers for sure.
Warm Regards, Pat |
03-30-2015, 09:29 PM | #11 |
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Re: Not Car related BUT Car guy related !!!
Warm fuzzy vibes coming your way! You will get excellent treatment in the research program, at least that's my experience at John's Hopkins in two cancer research programs.
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03-30-2015, 09:54 PM | #12 |
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Re: Not Car related BUT Car guy related !!!
Thanks for your courage and contribution to eliminating ALS.
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03-31-2015, 12:03 AM | #13 |
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Re: Not Car related BUT Car guy related !!!
Bill: You are certainly in my thoughts and prayers as you and our Lord work on this problem. Lawson
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03-31-2015, 02:05 AM | #14 |
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Re: Not Car related BUT Car guy related !!!
Bill, we have never met,BUT I feel I know you well.
I hope for the best for you,and hope with all my heart that you get fixed,and thank you for you help. Take care from down under. lawrie |
03-31-2015, 02:26 AM | #15 |
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Re: Not Car related BUT Car guy related !!!
I applaud your courage and willingness to help others. I admire you.
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03-31-2015, 06:21 AM | #16 |
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Re: Not Car related BUT Car guy related !!!
Bill, I know you will do well, you have such a positive attitude about life. Some of the best therapy is to keep busy doing what you do best. Let us know if you want to take Sheba out for some exercise, we would love to meet up with you, Chuck S.
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03-31-2015, 06:34 AM | #17 |
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Re: Not Car related BUT Car guy related !!!
Such a great thing you're doing. Research is very important.
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03-31-2015, 06:39 AM | #18 |
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Re: Not Car related BUT Car guy related !!!
Chuck:
This is just a thought , only halfway through my 1 st, tea this AM What about in say a month or two we look at something 1/2 way between us. ( Date / Time / Location to be determined later ) Some type of 2 day deal. Boy my brain is on fire here must be the real tea not the decaf type. We put out the request to the Barner to join us & charge say a $10.00 fee / donation to go to ALS research. Do you think there would be any takers ?? |
03-31-2015, 06:56 AM | #19 |
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Re: Not Car related BUT Car guy related !!!
Bill, if you and Chuck put a cruise together, I'll be happy to send in a donation. It's too cold up north, for this transplanted New Yorker, now that I'm a Floridian... Vic
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03-31-2015, 07:05 AM | #20 |
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Re: Not Car related BUT Car guy related !!!
Take care Bill, I pray for you. Working in my shop is the best therapy.
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03-31-2015, 07:08 AM | #21 |
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Re: Not Car related BUT Car guy related !!!
My prayers for the "Peace God God the surpasses all understanding" to fill you and your loved ones as you face this fiery trial.
God is still in control. |
03-31-2015, 07:08 AM | #22 |
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Re: Not Car related BUT Car guy related !!!
Thanks , Bill, for taking part in this research. I pray for a good outcome. After my 50 yr old daughter had a stroke, I took her to Baltimore for 2 different studies, made over 40 trips. It didn't help her much due to the neurological damage already done, but it will help others in the future. Well worth the effort.
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03-31-2015, 07:45 AM | #23 |
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Re: Not Car related BUT Car guy related !!!
Hi Bill, My wife and I will keep you in our daily prayers. How wonderful to participate in a study that can help you and others in the future. Bless you and your family.
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03-31-2015, 08:07 AM | #24 |
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Re: Not Car related BUT Car guy related !!!
God Bless and thank you for your effort in finding a cure.
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03-31-2015, 08:29 AM | #25 |
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Re: Not Car related BUT Car guy related !!!
This is a great thing you are doing , Bill ! Hopefully, studies like you are participating in will bring about a cure for you and others ! Keep on v8 ing !Good therapy !
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03-31-2015, 08:59 AM | #26 |
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Re: Not Car related BUT Car guy related !!!
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Take Care, Mark
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03-31-2015, 09:55 AM | #27 |
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Re: Not Car related BUT Car guy related !!!
Good news you could do this Bill. Best wishes!
Gordon
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03-31-2015, 11:33 AM | #28 |
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Re: Not Car related BUT Car guy related !!!
My best wishes to you Bill.
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03-31-2015, 01:05 PM | #29 |
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Re: Not Car related BUT Car guy related !!!
Prayers going out and Fitchburg might be good therapy.
Paul |
03-31-2015, 01:40 PM | #30 |
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Re: Not Car related BUT Car guy related !!!
Keep plugging Bill. I never met you but read a lot of your posts. I've got my own fight going, not ALS, but the only progress medicine seems to make is thru these experiments.
Its interesting they will use your own cells. Bill K |
03-31-2015, 01:41 PM | #31 |
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Re: Not Car related BUT Car guy related !!!
Way to go Bill! Keep as active as possible. That research may benifit you and many others in the long run.
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03-31-2015, 03:58 PM | #32 | |
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Re: Not Car related BUT Car guy related !!!
Quote:
It came from Israel where there study's have had shown good results. Most of the FDA approved study's require a 50 / 50 test 50% new drug 50% placebo The Brain Storm study they are allowing a 75 / 25 test 75% stem cells 25% placebo So it is all Good We Know there will be a few set backs with some participants , and that will be hard to take / But it is all part of the learning curve. |
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04-02-2015, 07:09 AM | #33 |
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Re: Not Car related BUT Car guy related !!!
I need to wait for my Daughter to show me how to Cut & paste the address for the donation for the cure for ALS
Last edited by BILL WZOREK; 04-02-2015 at 08:19 AM. Reason: spelling |
04-02-2015, 08:02 AM | #34 |
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Re: Not Car related BUT Car guy related !!!
Hi Bill; All my best and God bless you and your family, Craig.
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04-02-2015, 05:22 PM | #35 |
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Re: Not Car related BUT Car guy related !!!
Hang in there, I have a friend here locally who is going through it now. He is hanging in there although it is tough at times.
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04-03-2015, 12:32 PM | #36 |
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Re: Not Car related BUT Car guy related !!!
Bill,
I hope and pray this stops ALS in it's tracks. It would be great compensation for all of the good you have done.... Bud
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04-03-2015, 02:55 PM | #37 |
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Re: Not Car related BUT Car guy related !!!
Bill: A great thing you are doing with the research, lets pray it will cure you and others. Jim Langley...
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04-03-2015, 04:48 PM | #38 |
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Re: Not Car related BUT Car guy related !!!
Hope all goes well, I always enjoy your posts. God bless.
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04-03-2015, 10:04 PM | #39 |
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Re: Not Car related BUT Car guy related !!!
Many thanks for your efforts in the research. ALS took my Dad at age 69. I will be praying for you also.
Eddie |
04-23-2015, 06:44 AM | #40 |
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Re: Not Car related BUT Car guy related !!!
Just a follow up.
Today I go back to Worcester UMASS Memorial Hospital to get the stem cells put back that Dana Farber removed from my bone marrow That was taken from my right hip last month. I have to stay in the Hospital through Sat. so they can watch for any negative reactions to the procedure . Then for the next 10 months we keep going back to check up on how it is effecting the ALS that has effected my body. The first part of the week with Lee being my hands we go back into the garage for what I call " SHOCK THERAPY " ( rebuilding your shocks ) If any one wants to donate to the Defeat of ALS they can go to this link and you can donate in my name or anonyms . http://web.alsa.org/Goto/Denley THANKS BILL & LEE WZOREK |
04-23-2015, 07:48 AM | #41 |
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Re: Not Car related BUT Car guy related !!!
Best wishes Bill. Lot of us feel like we know you and are here for support!
Gordon
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07-27-2015, 06:39 AM | #42 |
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Re: Not Car related BUT Car guy related !!!
Here is my update on > A lousy situation = ALS <
Today we go out to Waltham Ma. @ Boston's Children's Hospital to Bank my voice . This is a way to record & save my voice so that when I lose my voice ( and I will ) we can use it in a machine so I can communicate using my voice instead of the computer generated ones that we have all heard before . Will let you know how it goes ! ! ! |
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07-27-2015, 07:15 AM | #43 |
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Re: Not Car related BUT Car guy related !!!
Our thoughts and prayers go out to you and your family, Bill. Your strength, your resolve, and your courage are an inspiration to us all.
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07-27-2015, 11:39 AM | #44 |
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Re: Not Car related BUT Car guy related !!!
Hi Bill, I'm thinking about you often! I hope they'll let you bank a few curse words too!
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07-27-2015, 03:55 PM | #45 |
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Re: Not Car related BUT Car guy related !!!
Good luck Bill, and thank you.
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07-27-2015, 06:47 PM | #46 |
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Re: Not Car related BUT Car guy related !!!
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When at med school I remember one of my Professors talking about the invention of the first Parkinsons drugs. He detailed how whole wards of immobile patients with Parkinsons Disease (who were there basically waiting to die) were given the drugs and got up and walked out of hospital . This generation is due another miracle ! Karl |
07-27-2015, 09:14 PM | #47 |
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Re: Not Car related BUT Car guy related !!!
The very best of luck Bill. We will be praying for you!
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07-27-2015, 10:35 PM | #48 |
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Re: Not Car related BUT Car guy related !!!
I don't know you, but I have been following your progress since you first announced you had ALS. There are a lot of folks on this site who are thinking of you and praying for you. Your willingness to share your struggle with us is appreciated, though it must be difficult to do.
We are all pulling for you. Good luck. Royal Ryser |
07-29-2015, 09:17 AM | #49 |
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Re: Not Car related BUT Car guy related !!!
Bill I just finished reading an article in my August issue of PN [paralyzed news] that an investigational new drug application from Q Therapeutics Inc. received approval for testing from the FDA for ALS. Great strides are being made in the cure for many disease because of people like yourself. I saw on the news tonight where this young lad had transplants for both his hands which he did not have any from birth. His words are worth repeating " believe in your dreams". He was all smiles,you never know he may turn out to be a great sports star. I pray that God will bless your efforts and the efforts of all those that participate in your trials.
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07-30-2015, 05:45 AM | #50 |
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Re: Not Car related BUT Car guy related !!!
Bill, Best of luck with everything, e-mail me or PM if you ever want a visit for a couple of hours, you're not that far away. Chuck S.
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07-30-2015, 06:25 AM | #51 |
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Re: Not Car related BUT Car guy related !!!
Bill, thanks for all you are doing in this study, and may God grant you strength. I think of you when I drive my 35 over bumps, smooth! Paul
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08-29-2015, 07:06 AM | #52 |
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Re: Not Car related BUT Car guy related !!!
Two falls this month , first one I got up from my chair / all was well then my left knee gave out & down I went ( that makes the 6th fall since my ALS started )
This time Lee could not get me up , had to call 911 for help / paramedics came and got me up / no harm no foul nothing broke or out of place. Well yesterday Lee & a friend from AZ & I went out to supper when we got home they were helping me into the house when my foot caught on the door sill & down I went. This time I caught my right arm on the door latch on the way down. putting a nice L shape cut on my arm. Lee called 911 the paramedics came & got me up , then took me to the hospital where I got 7 stitches before going home. ( WITH EVERY STEP I TAKE IT'S ONE ALS DOES NOT TAKE FROM ME ) |
08-29-2015, 07:37 AM | #53 |
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Re: Not Car related BUT Car guy related !!!
Keep up your fight....I am participating in an ice bucket challenge for another ALS sufferer later this month.!!
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08-29-2015, 07:41 AM | #54 |
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Re: Not Car related BUT Car guy related !!!
thanks
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08-29-2015, 08:18 AM | #55 |
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Re: Not Car related BUT Car guy related !!!
Yes Bill, Take care and God bless.
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08-29-2015, 09:29 AM | #56 |
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Re: Not Car related BUT Car guy related !!!
Hi Everyone, Bill, thanks for the update. I like your tagline, WITH EVERY STEP I TAKE IT'S ONE ALS DOES NOT TAKE FROM ME!
Really enjoying the ride of my car with your shocks. I think I'm gonna try to find a bucket of ice! Who should I call out? Maybe all 'Barners? Did they let you bank some curse words?
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08-29-2015, 09:36 AM | #57 |
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Re: Not Car related BUT Car guy related !!!
Hang in there Bill and God Bless. If you ever need a hand with anything I'm right here in Central Connnecticut.
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