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HBOT anyone here ever tried this?

Posted by Ron4Lisa 
HBOT anyone here ever tried this?
July 25, 2007 12:44AM
Greetings to all! I do not usually post here but faithfully read each day as well as occasionally participate in the chatroom(HI Barb!) For those of you who do not know our history,I am the caregiver for my GF Lisa who is 28 and had HD.She is the youngest of 3 siblings all of whom were HD+ .Lisa has a CAG of 56 and was tested in 2003.Her two siblings have already passed.Her brother in 2002 age 30 and her sister in 2006 at 29.From 2005 approximately,until around June of this year,Lisa rapidly deteriorated both physically and emotionally in quite dramatic fashion.From twicthes and stubborness with slurred speech and occasiuonal falls to complete lack of emotion save for crying.She was no longer able to do much more than stand and walk a few steps with assistance.Lisa refused to eat almost everything(even things she previously loved)and her weight dropped from 110lbs to about 95lbs and she is 5"2".She could no longer even use a remote control which was unfortunate because she spent most of her time watching TV.I myself was emotionally drained as you would expect.Out of desperation Her mother suggested that we try Lisa in a round of Hyperbaric Oxygen Therapy.The therapy consisted of 40 treatments of pure oxygen administered in a a multi-person chamber thru an oxygen mask.Each session is about 1.5 hours.Even though it is a pain in the butt trying to convince Lisa to get inside(I accompany her inside) After 24 treatments she has already begun to show great improvemnents from just prior to starting HBOT.Specifically,she sleeps regularly and for 8-10 hours at a time.This has been huge in itself as I am the sole caregiver and before she would only sleep in 2-3 hour intervals and then would be wide awake making things difficult for me to get rest.She is also now walking unassisted over most level surfaces and can get up from a sitting postion and use the bathroom herself whereas before she would try to get up in the morning and just fall down and start to cry until I woke up and came running.She has a increased appetite and is now near her normal weight.Although her speech is still quite slurred,she can now be understood fairly easily whereas just a short time ago even I could not understand a word she said.The interesting part is that she now TRIES to speak more often and WANTS to talk. In general, she just looks better with less of that "strained" look on her face.Her chorea is also significantly reduced compared to before .All of this is extremely surprising to me even though I had read some encouraging info on the 'Net.I should note that this has been a combination of HBOT and a rigorous daily supplement regime including;Creatine,cod liver oil,vitamin C,Vitamin E,Flax seed oil,CoQ10,Magnesium.I am posting this to ask if any of the persons here have also had experience with HBOT and HD? So far it has been very encouraging in improving Lisa's quality of life(even though she fights me tooth and nail everyday we go to therapy).I also should note that Lisa has never been on any anti-depressants or other drugs for movement prior to starting HBOT.
Re: HBOT anyone here ever tried this?
July 25, 2007 12:55AM
Hi Ron!!! (((hugs for u & Lisa)))! Wow Ron, you've been through a lot lately! What in the world is oxygen therapy? Tell us more about it, k? So glad your Lisa is doing better, that must be such relief. So good to have any good spell or improvement with this horrible disease. I definitely know what its like to have a good spell, and it sure feels good. Good for you guys, i'm happy for you.
Re: HBOT anyone here ever tried this?
July 25, 2007 01:08PM
That does sound hopeful. Was there any change in the medications you gave her at the same time?

You can attribute all of this improvement to the HOBT?
Re: HBOT anyone here ever tried this?
July 25, 2007 03:00PM
Lisa has never been on any medications.We had seriously considered trying her on both anti-depressants and sleeping pills just prior to starting HBOT therapy.This was due to the fact she definitely seemed depressed all of the time and simply could not and would not sleep much.We decided to try a round of oxygen therapy as a "last resort" as I had made every effort to avoid prescription drugs due to side effects.I just didn't want to create more problems than the ones we already had.You can Google Hyperbaric Oxygen Therapy.It is had shown some success treating a great number of conditions.The theory being 100% pure oxygen administered under pressure forces the body's tissues to absorb the maximum amount of oxygen possible.Under normal atmospheric pressure we generally absorb no more than 22% oxygen in our daily life.As most of you know,in Huntington's Disease there exists a reduced brain-blood flow.In HD and other Neurodegenerative conditions this greatly contributes to the cell loss as the brain is so highly dependant on oxygen for cell regeneration and survival.Based on this knowledge we decided to try this HBOT as obviously at this point it could not hurt to have more oxygen.The ND(Naturpathic Dr.) has also had some exp. in treating HD patients a pair of brothers from the states.
Re: HBOT anyone here ever tried this?
July 25, 2007 03:06PM
So when you go in the oxygen chamber with Lisa, are you getting the extra oxygen too? And how does it make you feel? Is this a silly question? lol
Re: HBOT anyone here ever tried this?
July 25, 2007 03:20PM
That sounds great. Did you start the supplements at the same time? Magnesium can help alleviate depression and increase energy.
Re: HBOT anyone here ever tried this?
July 25, 2007 04:04PM
Barb, that's an excellent question. Go Girl.

I had my "oxigenation" level checked every time I get a physical or was in the hospital. Is the oxigenation level checked at 100% ?

did you feel giddy or dizzy at all?
Re: HBOT anyone here ever tried this?
July 25, 2007 07:19PM
I do accompany Lisa into the chamber each session.As I said earlier,she fights tooth and nail everytime we are about to go in.The first 2 weeks she didn't put up any resistance really because physically she couldn't.Now she is getting much stronger and her feistyness is coming back.She is always fine once inside but for some reason she just doesn't like going in.I see this as a good sign that she is asserting her strong will again.Her personality is slowly returning.Once inside the doors are sealed and we begin "descent" this takes about 10-15 minutes to achieve the proper depth for treatment to begin.It is basically a simulation of pressure in a submarine or deep sea diving.Then once at depth,she is fitted with an oxygen mask,you breath thru the mask for exactly one hour.The mask is removed and we spend another 10-15 minutes "resurfacing" to normal pressure again then they open the doors.There is some mild ear pooping that occurs on the way down as well as the way up.But it is very mild,you simply swallow and the pressure is relived.I liken it to driving up or down a steep hill.All the external controls are monitored outside the chamber by the Doctor and there is an attendant inside the chamber at all times as well.It is fitted with camera's and lights from the outside looking in to monitor the patients as well.Me myself,I receive approxaimtely 50% pure oxygen just being inside the chamber.There is venting goin on while we are at depth and there is oxygen being pumped into the chamber itself.It is hard to describe the feeling after being inside.During the session you become very relaxed almost a sleep like state without actually falling asleep.It is extremely relaxing and comfortable.After today having the 25th "dive" I have noticed some good and neutral side effects.Better longer sleep at night.improvment in skin tone and appearance,faster hair and nail growth.This is true for both of us.I also often have bad headaches due to lack of proper sleep and smoking/stress.This has subsided greatly and I have had one minor headache in the 5.5 weeks since we started(but that was after consuming too much alcohol the night before at a party(tequila and beer lol)The Dr. checks Lisa'a blood pressure on Mondays and fridays each week as he does with all patients there young and old.He is very knowledgable about Neurodegenerative disease and treating it is his speciality.I was personally shocked when I saw vide footage of brothers with HD who he treated in 2004 and continues to treat every 6 months.We don't expect miracles,his goal is to slow down further degeneration of the tissues and use the increase in oxygen and supplements to rebuild tissue as much as possible.He is an N.D. naturopath with a degree also in advanced hyperbarics.I will continue to keep everyone posted each week and answer whatever questions I can by asking the Dr.
Re: HBOT anyone here ever tried this?
July 26, 2007 04:47AM
Sounds really interesting. Barb i was just about to ask that Q too lol!!

Louise x
Re: HBOT anyone here ever tried this?
December 09, 2007 07:00AM
Hi
Could you please tell me if Lisa is still benifiting from HBOT? as we have a chamber near to us in the UK and would like to investigate further
Best wishes to you both
Philip
Re: HBOT anyone here ever tried this?
December 09, 2007 08:47AM
Hi,
I had read something on this before but it is nice to hear how it can
possibly help someone with HD.
Would you mind giving the name or telephone number of the Doctor. I would like to find out where the nearest facility such as this is in closer proximity to where we live.
Also,Lisa is so fortunate to have you in her life.
Re: HBOT anyone here ever tried this?
December 09, 2007 08:52AM
I just googled HBOT Therapy and the site gave me locations as to where the facilites are in the states.
When you and Lisa go to the sessions do you go daily for a period of time or at intervals?
Thank you.
Re: HBOT anyone here ever tried this?
December 09, 2007 01:01PM
ron,

i am wondering if it would be possible to get this doctors, name or his clinic number?
i like the idea that he has done work with hd before, i think it would be a good number to have...

thanks for sharing this news with us.
and it seems to me, there is alot to be said about you ron, you must be a wonderful man, a woman couldnt do better. i bet your mom is proud of the person you are...
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