I wonder if MJF has undergone FUS or Stem Cell Therapy. If not, why? He has money and power to influence. He could be treated right away if he wanted I believe.
Michael J Fox: I wonder if MJF has... - Cure Parkinson's
Michael J Fox
26 Replies
•
In 1998, Michael J. Fox underwent a thalamotomy without the precision now afforded by Focused Ultrasound. To the best of my knowledge, it was done the old fashioned way, which literally meant making incisions with surgical instruments. I believe that prevents him from having Focused Ultrasound now, but I may be wrong about that.
He has been interviewed about his experience with thalamotomy and said he doesn't want to do brain surgery again, but then his surgery involved instruments and scalpels. Plus, there is no stem cell therapy approved by the FDA for PD.
• in reply toMBAnderson
The FDA approved stem cell therapy for a man named George Lopez who had a treatment at Mass General.
• in reply to
I have wondered the same thing bc when I watch videos of him from 10-15 years ago he seems close to the same. How is that possible?
• in reply to
CC any more info on the stem cell front? I am so curious to know how Dr. Lopez is doing now.
• in reply to
I have a zoom meeting with them on Monday. I will be talking to the neuroscientists. I definitely will be asking about George Lopez. Message me if you want me to ask specific questions.
Have you heard about the stem cell study starting in Houston at University of Texas? Totally different, intravenous.
• in reply to
I read about a clinic offering IV stem cell therapy but I’m not a believer. How can they cross the blood brain barrier. Maybe they can but I’m skeptical. Or maybe there’s another way it works.
• in reply to
I don’t get it either. Beyond my comprehension. How is the CL working for you? I’m very curious how it’s going?
Did you stay on the Azilect? Doesn’t your Mayo neuro think it’s protective?
MJFF is invested in the Univerdity of Texas trial It’s phase 2
My anxiety has suddenly gotten worse and I’m wondering if it could possibly be the B1.
• in reply to
I went through the anxiety phase too. I thought I was going crazy. It eventually passed. I think the exercise bike really helped me beyond imagination.
C/L is as good as it gets. It really does help. It’s not perfect but it’s the best thing available and has improved my quality of life quite a bit. I had a video conference with my boss. She hadn’t seen me since I started taking the C/L. She couldn’t believe her eyes. All she said was oh my God you are back. I am back to my dynamic self when the meds kick in. Takes about an hour to work and last 3-5 hours. It’s worth it.
• in reply to
I am elated to hear that! I’m thrilled to learn that it is helping so much. That is so uplifting to hear!
kevowpd• in reply to
It isnt called the 'gold standard' for nothing 😂
• in reply tokevowpd
It didn’t help my Dads tremor and I therefore fear it won’t help mine. I would ask my neuro for it but I’m trying to get on a trial for PWP not on meds.
kevowpd• in reply to
Surgery is probably best for tremor. But yea, if you can get on the NLY01 trial it might be worth holding off.
• in reply tokevowpd
Do you have tremors? Have you had surgery? Sadly I agree, surgery is best for tremors.
I have young children so I’m very scared bc they need me
pdpatient• in reply to
@cclemonade, do not be scared. Everything has a way of working itself out, because it always does. You just need to have faith in a higher power which could even be your inner consciousness or God in whichever way you believe or worship AND a determination to overcome the obstacles which will now be put before you. Trust me, if you do that, you will be fine.
My children were quite young as well when I was diagnosed. The elder one has graduated from college and is independent and working. The younger one is going to college this year.
My children were aware of my condition from day one and I was open about everything. They have taken the diagnosis in stride, (sort of) and there were some challenges, but it is okay.
Wish you the best. 👌
RKM
• in reply topdpatient
Thank you so much RKM. You’ve had PD for about 9 years and are still working if I remember correctly? That’s a long time to work with PD. Are you considering DBS? I remember you mentioned a neuro said you could continue working post DBS. I envy your faith in a higher power. I wish I had that.
pdpatient• in reply to
Yes, @cclemonade, I still am. I had / have no choice because I was the sole breadwinner / source of income for the family. My wife gave up her career when we got married in order to raise the kids. She gingerly tiptoed back to the job market for a couple of years and quit in December because of the fear of contracting Covid-19.
DBS will continue to be an option, but it will be a last resort if things go haywire. I am feeling okay now with my drug cocktail after more tweaks. Telemedicine (thanks to Covid-19) made a huge difference and my MDS was able to adjust my medications every two weeks. Basically, it appears that one drug alone doesn't cut it. It has to be a cocktail and the options that a good MDS has are plenty. Of course, levodopa will continue to be the gold standard and the other medications are used to properly corall and control the delivery of the core medicine which is still to most potent, powerful and easy-to-use option.
The only thing I wish is that there was much more awareness of the disorder among the lay folk. They make assumptions about us PwP's that are quite unfair.
RKM
• in reply topdpatient
I am blessed, so blessed that my husband is the breadwinner. Supporting your family while dealing with Parkinson’s is a pretty massive undertaking in my opinion. It is great to hear that telemedicine has been so helpful. I think it will be here to stay at least to some extent.
DBS is my last resort as well but I anticipate the day will come....
Agreed that awareness amongst the lay folk is very lacking.
I appreciate your corresponding with me. Thank you RKM
kevowpd• in reply to
"Do you have tremors? Have you had surgery?"
Yes. No. Not at that point yet.
Try not to let PD take over your life. With the googling and the supplement research and the stressing over the future. I am only saying this to you becuase it is advice i need to follow myself.
• in reply tokevowpd
It’s so true. I found myself thinking about PD 24/7/365. It just makes me sicker. When I take a break from it I feel so much better.
• in reply tokevowpd
I know it’s true. Hard to but I must. Thank you
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