If a vascular disconnection is responsible for Parkinson's disease why wouldn't HBOT be considered. Its plentiful and inexpensive. There are some great ideas in the trials pipeline. There's a high probability of more failures. It may be impossible to hit a Home Run. Maybe we need to hit a single or double first. If Parkinson's disease is not a singular disease, perhaps more than one antidote is required.
A good plan executed with maximum force today is better than a perfect plan executed next month. MG George S Patton.
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Isthistheone
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Although the idea is interesting, I doubt that doctors, neurologists and MDS are likely to prescribe it and Medicare and insurance companies are even less likely to pay for it since it is not in their formulary for patients with PD.
I have no illusions as to whether health insurance companies are my friend or are interested in my health. They are in the business of increasing their bottom line...money. They are not in the business of trying to improve my health! Of that I have no doubt.
Very disconcerting to lose 30 or min of typed response due to dyskenesia. I'll be back
I'll make this short, I promise. I asked this question to start debate. I'm certain this has already been looked at by people a bazillion times smarter much more qualified than ME. I hope this wasn't too basic that it offends anyone. It appears to be an unknown. The Web has scant information, re HBOT as a treatment for PD. Many references for HBOT as a treatment for injuries that are slow healing particularly brain injury. JUST THINKING if there is a vascular component that's missing or malfunctioning, why not use HBOT? It's safe, well understood, and has decades of use with minimal risk.
If there is one nanogram of doubt, can someone besides me run this to ground?
O ne last thought. Research around the world has invested billions into a pharmaceutical cure. HBOT has no glamour and no bells and whistles.
I mentioned that I think it is interesting, but it is as yet unproven for PD so that means that insurance will not pay for it and most neurologists are not going to prescribe or utilize it in their PD patients, so that leaves patient's with few options if they want to try it. So, how do you get it under those circumstances?
The other issue is the known complications that can arise from HBOT which will certainly further dissuade doctors from wanting to test it on PD patients. The risks may be low, but they are still there.
Art i agree, at least with the risk part There is risk in everything. Do we fly to Florida in a couple weeks or do we drive
Which is safer? Which is cheaper? Should I continue to smoke or try to quit? Is the risk of getting cancer from pumping my own gas so high I'll let the service attendant do it from now on.
There's risk in having that heart sten procedure. What's your risk if you opt out?
This disease takes no prisoners. It has an unblemished record, in fact it is undefeated.
I consider myself a risk taker and I understand what you are saying, but in the end, even if I am willing to take the risk, what if I can't afford whatever the treatment is or if nobody will apply the treatment to me? That is the point I am trying to make. The treatment may do wonders, but if I can't get it, then what good does it do me?
Art I know exactly where you are going. If we don't collectivvely make some noise nothing will happen, and that's a guarantee we both agree on. I was on TASIGNA two different times. The medication cost $14,000 per month, out of reach for what 99% of us. I threw my hat in the ring and was selected, the study group paid for everything. In reality NOVARTIS took care of it. Why not, there's at least 2 MIL PWP nationally plus internationally. I'll never say Trump won or the election was stolen. All I can say is Gorgetown deserves a recount.
To become an advocate, especially a health advocate its better to try to find a group of kindred people, in this case pwp, get together and brainstorm(no pun intended). After this maybe to find out which health system in which state or country would be likely to be open accept it. Think, acupuncture and TCM was regarded as a quack 20 years ago, now they include tai chi, acupuncture and derivates in many health systems. Then little by little introduce the idea and let it run with it...it is not an impossibe.
Thank you for commenting. In another 20 years most of us will not be here. There isn't time for consesus building. JMO, GU has the answer. Their findings were entirely dismissed by the 2,000 + pound gorilla in the room! GU never waivered in their assrrtion their primary objective was safety for trial participants and future patients. Novartis themselves are responsible for TASIGNA's black eye. For those that don't know the full story - NOVARTIS BLATANTLY AND WILLFULLY withheld data from the FDA in their TASIGNA APPROVAL REQUEST. This wasn't the first time. Time to press on.
You see, Isthitheone, maybe it doesnt take that long if the knowledge of benefits is big and the demand is large...anyhow, i rather live 10 years kicking arse as much as my health permits than just accepting than i cannot do anything...and i ithink there is alwsys an angle or strategy to turn things around. Im in lots of pain right now but i rather look for hope...im a bit of a warrior.
Hi Art I know ins companies won't pay for procedures that are approved by the FDA or others. So I know I'm preaching to the choir. You are so right, the BASTARDS would never pay for an unapproved procedure. We need to collectively raise our voices AND BE HEARD!!
Without getting too political, I will say that that is a tall and difficult order as that will also entail getting bureaucrats to change existing standards and rules governing health care agencies. Given the amounts of money involved in the healthcare industry, I'm not holding my breath while waiting for those changes.
Art, found out Medicare is paying for the 12 FDA approved conditions. PD is not approved. Some ins plans are paying. Google HBOT as a treatment for Parkinson's disease. There are many DR s prescribing this off label. My first thought this is a sham. There are so many using this, maybe it does have some value.
Everything that I read said that Medicare and other insurances will cover HBOT for certain conditions, but PD is never on the list of conditions, but it may be covered for off label use with a prior approval which I think requires that your doctor contact the insurance company to say that you need the treatment and that the insurance company should approve it. So you need a doctor who will approve it and an insurance company who will do the same. When I did the search you suggested, I saw a lot of ads for clinics that offer this service, it seems like these would be the best places to try for possible success with off label use for PD because they have to have a doctor who is willing to prescribe it and have already had plenty of experience dealing with different insurance companies and all the ways to get it approved.
It is not practical for the average person to afford these treatments as I saw a price range of $250 to $450 per session depending on your location and it seems like some people need 30 sessions to reach maximum benefit. Sessions seem to last about 2 hours. It also seems like they use one session per day for 5 days in a row. If you require 30 sessions at $250, that would be $7500 and at $450, that would be $13,500.
Have you tried to do this yet? If you do, please let us know how it goes.
I just started this journey Art. I saw an advertised price of $100 per session, X30 session. Hbot treatments have to be repeated every 3 months. Plus Tasigna at. $8,000 per month. Plus monthly bloods and EKGs every 2-3 months.
We really don't know very much about this disease. Some people say PD is more than one disease. Maybe more than one treatment is req. I'll discuss this with my Neuro tomorrow 6 mo check up. Doubt he'll prescribe HBOT. I'll let you you know.
Been looking at HBOT for my Mum (with MSA, a Parkinsonism) for a long time. Issue is that you need many sessions, the people who run the nearest centre to me recommended something like 20 sessions, on consecutive days if possible, at least for my Mums condition. Which they didnt have the capacity for. So you need a facility that can do that, and money for it. I spoke with nurses from the MSA association who said that they had heard of people who tried HBOT, and got nothing from it, BUT they only tried one or two sessions, which the HBOT clinic told me would be useless. So people seem to approach this in a slightly clueless manner. Also, high pressure, and oxygen, or don't bother, as I understand it. As mentioned above, great with stroke etc, recovering lost neurons, so makes sense for other conditions....
Tasigna is an interesting medication. The root problem for PD is lack of dopamine. But it could be normal amounts of dopamine being produced but is lost through the BBB. Tasigna corrects the BBB wastage. My primary care doc is very new-age. She advertises marijuana treatment and calls herself the "Pot Doc." She also has HBOT and recommends it for PD. I take Rytary and it works well enough that I haven't needed to try anything else. But I keep in mind HBOT as a plan-b med.
I found several case reports showing improvement as a result of hyperbaric oxygen therapy. Per the prior comment patients received 20 or more sessions:
Thank you for your help. You are one of the two best researchers on the planet. Before you become a legend on JEOPARDY, please consider my offer of Executive Bartender. Always said it it's never about how much you know, it's who you know.
thank you for your EXCELLENT post and links... i checked each one and found LOTS of great info... you might want to watch these videos about hyperbaric oxygen therapy...
I had a conversation with a doctor yesterday. Since I also have tinnitus in addition to Parkinson's disease, I probably get paid for 10-20 sessions at around 300 euros in Germany. Also, I had a long conversation with a manufacturer who sold HBO devices for home use (albeit less powerful than the professional devices). Costs around 15,000 euros. If the 10-20 sessions (lasting about 2.5 hours) have a positive effect on my Parkinson's symptoms, I will probably buy the device for home use. There is also a study from Israel that seems to lengthen the telomeres! That would mean that the aging process is prevented! aging-us.com/article/202188...
Hello, I had my tenth HBO session yesterday. I will do 10 more in the next two weeks. So far I haven't noticed any improvement... I'll get back to you in two weeks. Greetings from Germany
Hi Tom. I think the ones for residential use cannot exceed 1.5 ATM. THEY ARE CALLED SOFT SHELLS. Looking forward to hearing from you soon. Thanks for your response Tom.
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