Hyperbarric Oxygen Therapy for PSP


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Hyperbarric Oxygen Therapy for PSP

Postby nyl777 » Wed Mar 31, 2004 6:52 am

::::::::posted with consent from patient's wife::::::::

<font color="green"><b>I am a Physical Therapist here in the Philippines. I have a patient diagnosed to have PSP just last year. He has been diagnosed at first with PD four years ago. Although, he is dependent in all aspects of activities of daily living at this time. My patient was able to walk unassisted December of 2002. He underwent HYPERBARRIC OXYGEN
Therapy for 1 hour, 20 minutes, 20 feet depth, five times a week last November of 2002. He also had Intravenous injection of Glutathion 1450 mg(7 ml) mix with 13 ml of saline sol. This was administered 3 times a week. He had alternate OT and PT sessions 5 times a week. Prior to this treatment my patient was not able to walk unassisted and could not talk and had difficulty swallowing. After just a month of the above therapy patient was able to walk alone and although a bit slurred he was able to talk. The Hyperbarric Oxygen Therapy was stopped after about 4 mos. Then after a month without Hyperbarric Oxygen Therapy patient developed aspiration pneumonia. He was hospitalized and his condition deteriorated. He could not talk, could not swallow, could not walk..... He underwent gastrostomy then. He also had cystostomy.
He never received Hyperbarric again and his condition now is similar to that of stage four with some stage three symptoms.... The patient at this time is just receiving oxygen from an Oxygen tank <4 liters/min for 2 hours per day> since Hyperbarric Oxygen Therapy is not yet available in our area. He is also given trivastal and sinemet and an anti-oxidant with a brand name Ambrotose AO.

I just want to know if anyone here tried Hyperbarric oxygen therapy for there loved ones with PSP? Or glutathion injection? Or is anyone here knows of a certain drug that can reduce rigidity other than sinemet? Or any food supplement that you think is of great help for PersonsWithPSP? I would really appreciate your responses. </b></font id="green">
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Postby AnneRN » Wed Mar 31, 2004 12:42 pm

I worked in a wound care and hyperbaric center in the past. We used oxygen therapy in stroke patients and saw an improvement in their conditions. Also used in non healing bedsores... The hyperbaric chambers, oxygen under pressure, causing the oxygen to be "forced" into even the plasma in the blood system, end result being addition oxygen getting to cells, organs, including brain....

treatments are expensive but some insurances do cover cost....

Anne
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Postby Cecilia Camacho » Mon May 03, 2004 5:17 pm

We too went for Glutathione Therapy for Toney. It didn't last long since the insurance wouldn't cover it. He was on treatment three times a week and he seemed to improve his speech and balance. But as soon as we stopped the treamtment, he reverted back. We have not tried the oxygen chamber, but I will ask his neurologist if this is a possibility for him if the insurance approves it. Toney is at stage 4 and can hardly swallow anymore. Even liquids, smoothies is hard. He can't talk. At night he "talks" all night and seems to be having nightmares. Is this the same as the hallucinations? He complains of "headaches" but I know it's his neck that is so stiff it causes stress on the neck muscles and pain. He went for phyical therapy, but what he needs is deep massage.

If you get on the web site for Dr. Pearlmutter. He has the Brain Sustain supplements. He is the one that started this glutathione therapy. We have tried Q-10 along with other amino acids. We can no longer continue them since he can't swallow.

Let me know it you find out anything else.

Cecilia
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Postby Pauline » Tue Aug 03, 2004 11:37 pm

Reference headaches in PSP. My husband experiences headaches if he is not sitting directly in front of what he needs to see. For instance, if he goes to an auction and sits on the aisle straight in front of the auctioneer he is ok even though his eyesight is poor. If he sits to the side and has to look slightly left or right of his position, then he ends up with a terrific headache. He said that it feels like he has been hit in the back of the head with a baseball bat. It appears this happens because of the muscles that control his eye movement.
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Postby Pam » Sat Oct 02, 2004 12:29 am

Hyperbaric Therapy is one of those areas of medicine that has well-documented success in some applications, but is promoted for other uses with no documented or scientifically reproducible benefits.

I work as a Respiratory Therapist at a large teaching hospital in Canada. I am also the daughter of a lovely lady who passed away in 1995, misdiagnosed with PD for 21 years until she lay dying in the hospital and was seen by a new neurologist, who pointed out she had PSP. So I'm very interested in PSP, but also have professional insight into hyperbaric.

Our hospital has a very busy hyperbaric chamber, one of the few publicly available in Canada (i.e. patients don't need insurance to use it). We treat only patients who have conditions recognized as treatable in hyperbaric oxygen. The very few available private chambers in Canada are promoted to patients who are seeking unproven therapy out of "desperation", including cerebral palsy, and possibly other neuro diseases as well, or who do not want to wait on the hospital's waiting list. They pay "out of pocket", and I'm sure it is very expensive.

Hyperbaric Oxygen Therapy is proven (meaning there are well designed studies with positive results on many patients) to work in the following ways:

1. hyperoxygenates - the amount of O2 in the blood plasma increases 10 to 15 times, which obviously makes O2 more available to cells

2. neovascularizes - it stimulates the growth of new tiny blood vessels, especially in damaged tissue (e.g. from cancer radiation)

3. antimicrobial - it directly and indirectly fights bacteria and the toxins produced by the bacteria

4. vasoconstriction - high levels of oxygen cause blood vessels to constrict (an interesting paradox) which reduces swelling, useful when the swelling is cutting off blood supply to an area of injury

5. decreasing overactivity by leucocytes (immune cells) - this over-activity can cause damage just when the healing is starting

6. direct pressure - the high oxygen pressure reduces the capacity of the blood for other gases, like nitrogen (in treating "the bends") and carbon monoxide (smoke inhalation)

These mechanisms are very useful to the Respiratory Therapists and Physicians who treat patients in hyperbaric oxygen.

The "indications", or reasons for the use of hyperbaric are the treatment of:

Carbon monoxide poisoning - from smoke inhalation caused by a fire or suicide attempt

Necrotic (dying) tissue: gangrene caused by diabetes, gas gangrene (caused by Clostridium bacteria), third degree burns, radiation necrosis (death of tissue caused by cancer radiation therapy, especially in cancers of the jaw and facial bones which are difficult to treat); also in cases of extensive infections that are hard to treat with antibiotics

Arterial Gas Emboli - bubbles of gas in the bloodstream from rapid decompression after a scuba dive or from other causes

Crush injuries - helps in increasing blood flow to areas with damaged blood vessels

Severe anemia, or when blood transfusion is impossible or refused

As you can see from this long and probably boring explanation, Hyperbaric Oxygen Therapy is really great when the problem is blood flow related. There is no evidence of any mobility improvement in patients with neuro disorders, and as you know the movement problems in PSP are brain-related, not muscle-tissue related. Hyperbaric will usually help heal painful pressure sores that impede full movement, so this might be a benefit to the PSP patient.

I write this (long long) reply in hopes that those who read it can avoid spending huge sums of money on treatment that is promoted as helpful when it really isn't for their disease. It's very easy for a few "successes" to be produced by almost any "therapy", when really the improvement would have happened anyway. Hyperbaric Therapy seems very strange and magical to the non-medical person, but there is good research and strong evidence that our practise is based on. Your patient's improvement was more likely from the OT and and your PT sessions.

The oxygen he is receiving from a tank is not at all similar to the effect of hyperbaric oxygen therapy. Patients with PD and PSP often have a reduction of movement in their chest wall and diaphragm muscles, which leads to shallow breathing, low oxygen and high carbon dioxide in their blood. They can benefit from extra oxygen as their bodies are working so hard to breathe, move, etc. And aspiration can damage the lung tissue, so parts of the lungs can't pass oxygen into the blood. By the way, oxygen doesn't last in the blood stream, it's gone in minutes. Perhaps he would do better with less oxygen (1-2 l/min) for the whole day? or just while sleeping and during exertion? Just a thought. 2 hours a day of oxygen from a tank is a bit odd.

As far as supplements go, my mum had many many vitamin and mineral supplements, who knows if they worked or not, but she lived for 21 years (from age 50 to 71) with PSP and was only in a really bad way for the last 3 or 4 years. She had great bones (and took lots and lots of calcium) and even with all the falls, never broke a bone until her hip, a month before her release from her body. I think she's having a much better time now, and I'm sure she's making up for all the talking that she couldn't do!

Keep up the good work! I'm sure what you do is of great help to this poor fellow.
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Postby Bonis125 » Fri Nov 19, 2004 9:14 pm

<blockquote id="quote"><font size="1" face="Verdana, Arial, Helvetica" id="quote">quote:<hr height="1" noshade id="quote"><i>Originally posted by Pam</i>

Hyperbaric Therapy is one of those areas of medicine that has well-documented success in some applications, but is promoted for other uses with no documented or scientifically reproducible benefits.

I work as a Respiratory Therapist at a large teaching hospital in Canada. I am also the daughter of a lovely lady who passed away in 1995, misdiagnosed with PD for 21 years until she lay dying in the hospital and was seen by a new neurologist, who pointed out she had PSP. So I'm very interested in PSP, but also have professional insight into hyperbaric.

Our hospital has a very busy hyperbaric chamber, one of the few publicly available in Canada (i.e. patients don't need insurance to use it). We treat only patients who have conditions recognized as treatable in hyperbaric oxygen. The very few available private chambers in Canada are promoted to patients who are seeking unproven therapy out of "desperation", including cerebral palsy, and possibly other neuro diseases as well, or who do not want to wait on the hospital's waiting list. They pay "out of pocket", and I'm sure it is very expensive.

Hyperbaric Oxygen Therapy is proven (meaning there are well designed studies with positive results on many patients) to work in the following ways:

1. hyperoxygenates - the amount of O2 in the blood plasma increases 10 to 15 times, which obviously makes O2 more available to cells

2. neovascularizes - it stimulates the growth of new tiny blood vessels, especially in damaged tissue (e.g. from cancer radiation)

3. antimicrobial - it directly and indirectly fights bacteria and the toxins produced by the bacteria

4. vasoconstriction - high levels of oxygen cause blood vessels to constrict (an interesting paradox) which reduces swelling, useful when the swelling is cutting off blood supply to an area of injury

5. decreasing overactivity by leucocytes (immune cells) - this over-activity can cause damage just when the healing is starting

6. direct pressure - the high oxygen pressure reduces the capacity of the blood for other gases, like nitrogen (in treating "the bends") and carbon monoxide (smoke inhalation)

These mechanisms are very useful to the Respiratory Therapists and Physicians who treat patients in hyperbaric oxygen.

The "indications", or reasons for the use of hyperbaric are the treatment of:

Carbon monoxide poisoning - from smoke inhalation caused by a fire or suicide attempt

Necrotic (dying) tissue: gangrene caused by diabetes, gas gangrene (caused by Clostridium bacteria), third degree burns, radiation necrosis (death of tissue caused by cancer radiation therapy, especially in cancers of the jaw and facial bones which are difficult to treat); also in cases of extensive infections that are hard to treat with antibiotics

Arterial Gas Emboli - bubbles of gas in the bloodstream from rapid decompression after a scuba dive or from other causes

Crush injuries - helps in increasing blood flow to areas with damaged blood vessels

Severe anemia, or when blood transfusion is impossible or refused

As you can see from this long and probably boring explanation, Hyperbaric Oxygen Therapy is really great when the problem is blood flow related. There is no evidence of any mobility improvement in patients with neuro disorders, and as you know the movement problems in PSP are brain-related, not muscle-tissue related. Hyperbaric will usually help heal painful pressure sores that impede full movement, so this might be a benefit to the PSP patient.

I write this (long long) reply in hopes that those who read it can avoid spending huge sums of money on treatment that is promoted as helpful when it really isn't for their disease. It's very easy for a few "successes" to be produced by almost any "therapy", when really the improvement would have happened anyway. Hyperbaric Therapy seems very strange and magical to the non-medical person, but there is good research and strong evidence that our practise is based on. Your patient's improvement was more likely from the OT and and your PT sessions.

The oxygen he is receiving from a tank is not at all similar to the effect of hyperbaric oxygen therapy. Patients with PD and PSP often have a reduction of movement in their chest wall and diaphragm muscles, which leads to shallow breathing, low oxygen and high carbon dioxide in their blood. They can benefit from extra oxygen as their bodies are working so hard to breathe, move, etc. And aspiration can damage the lung tissue, so parts of the lungs can't pass oxygen into the blood. By the way, oxygen doesn't last in the blood stream, it's gone in minutes. Perhaps he would do better with less oxygen (1-2 l/min) for the whole day? or just while sleeping and during exertion? Just a thought. 2 hours a day of oxygen from a tank is a bit odd.

As far as supplements go, my mum had many many vitamin and mineral supplements, who knows if they worked or not, but she lived for 21 years (from age 50 to 71) with PSP and was only in a really bad way for the last 3 or 4 years. She had great bones (and took lots and lots of calcium) and even with all the falls, never broke a bone until her hip, a month before her release from her body. I think she's having a much better time now, and I'm sure she's making up for all the talking that she couldn't do!

Keep up the good work! I'm sure what you do is of great help to this poor fellow.
<hr height="1" noshade id="quote"></blockquote id="quote"></font id="quote">
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Postby Bonis125 » Fri Nov 19, 2004 9:17 pm

TO: PAM
RE: RESPIRATORY THERAPIST AT TEACHING HOSPITAL CANADA

PLEASE CONTACT RE MISDIAGNOSIS OF PARKINSON'S DISEASE
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Postby Bonis125 » Fri Nov 19, 2004 9:19 pm

<blockquote id="quote"><font size="1" face="Verdana, Arial, Helvetica" id="quote">quote:<hr height="1" noshade id="quote"><i>Originally posted by Pam</i>

Hyperbaric Therapy is one of those areas of medicine that has well-documented success in some applications, but is promoted for other uses with no documented or scientifically reproducible benefits.

I work as a Respiratory Therapist at a large teaching hospital in Canada. I am also the daughter of a lovely lady who passed away in 1995, misdiagnosed with PD for 21 years until she lay dying in the hospital and was seen by a new neurologist, who pointed out she had PSP. So I'm very interested in PSP, but also have professional insight into hyperbaric.

Our hospital has a very busy hyperbaric chamber, one of the few publicly available in Canada (i.e. patients don't need insurance to use it). We treat only patients who have conditions recognized as treatable in hyperbaric oxygen. The very few available private chambers in Canada are promoted to patients who are seeking unproven therapy out of "desperation", including cerebral palsy, and possibly other neuro diseases as well, or who do not want to wait on the hospital's waiting list. They pay "out of pocket", and I'm sure it is very expensive.

Hyperbaric Oxygen Therapy is proven (meaning there are well designed studies with positive results on many patients) to work in the following ways:

1. hyperoxygenates - the amount of O2 in the blood plasma increases 10 to 15 times, which obviously makes O2 more available to cells

2. neovascularizes - it stimulates the growth of new tiny blood vessels, especially in damaged tissue (e.g. from cancer radiation)

3. antimicrobial - it directly and indirectly fights bacteria and the toxins produced by the bacteria

4. vasoconstriction - high levels of oxygen cause blood vessels to constrict (an interesting paradox) which reduces swelling, useful when the swelling is cutting off blood supply to an area of injury

5. decreasing overactivity by leucocytes (immune cells) - this over-activity can cause damage just when the healing is starting

6. direct pressure - the high oxygen pressure reduces the capacity of the blood for other gases, like nitrogen (in treating "the bends") and carbon monoxide (smoke inhalation)

These mechanisms are very useful to the Respiratory Therapists and Physicians who treat patients in hyperbaric oxygen.

The "indications", or reasons for the use of hyperbaric are the treatment of:

Carbon monoxide poisoning - from smoke inhalation caused by a fire or suicide attempt

Necrotic (dying) tissue: gangrene caused by diabetes, gas gangrene (caused by Clostridium bacteria), third degree burns, radiation necrosis (death of tissue caused by cancer radiation therapy, especially in cancers of the jaw and facial bones which are difficult to treat); also in cases of extensive infections that are hard to treat with antibiotics

Arterial Gas Emboli - bubbles of gas in the bloodstream from rapid decompression after a scuba dive or from other causes

Crush injuries - helps in increasing blood flow to areas with damaged blood vessels

Severe anemia, or when blood transfusion is impossible or refused

As you can see from this long and probably boring explanation, Hyperbaric Oxygen Therapy is really great when the problem is blood flow related. There is no evidence of any mobility improvement in patients with neuro disorders, and as you know the movement problems in PSP are brain-related, not muscle-tissue related. Hyperbaric will usually help heal painful pressure sores that impede full movement, so this might be a benefit to the PSP patient.

I write this (long long) reply in hopes that those who read it can avoid spending huge sums of money on treatment that is promoted as helpful when it really isn't for their disease. It's very easy for a few "successes" to be produced by almost any "therapy", when really the improvement would have happened anyway. Hyperbaric Therapy seems very strange and magical to the non-medical person, but there is good research and strong evidence that our practise is based on. Your patient's improvement was more likely from the OT and and your PT sessions.

The oxygen he is receiving from a tank is not at all similar to the effect of hyperbaric oxygen therapy. Patients with PD and PSP often have a reduction of movement in their chest wall and diaphragm muscles, which leads to shallow breathing, low oxygen and high carbon dioxide in their blood. They can benefit from extra oxygen as their bodies are working so hard to breathe, move, etc. And aspiration can damage the lung tissue, so parts of the lungs can't pass oxygen into the blood. By the way, oxygen doesn't last in the blood stream, it's gone in minutes. Perhaps he would do better with less oxygen (1-2 l/min) for the whole day? or just while sleeping and during exertion? Just a thought. 2 hours a day of oxygen from a tank is a bit odd.

As far as supplements go, my mum had many many vitamin and mineral supplements, who knows if they worked or not, but she lived for 21 years (from age 50 to 71) with PSP and was only in a really bad way for the last 3 or 4 years. She had great bones (and took lots and lots of calcium) and even with all the falls, never broke a bone until her hip, a month before her release from her body. I think she's having a much better time now, and I'm sure she's making up for all the talking that she couldn't do!

Keep up the good work! I'm sure what you do is of great help to this poor fellow.
<hr height="1" noshade id="quote"></blockquote id="quote"></font id="quote">
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Postby eplowman » Sat Dec 03, 2005 12:13 am

Pam,

A =VERY= informative post. And well written. Thank you.

I hope you look in on the forum often.

ed p.
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Postby Robin » Sun Jul 09, 2006 10:35 pm

Dear nyl777 and others:

Some local support group members visited Dr. Perlmutter's clinic in Miami or some place in south FL. They asked an RN if hyperbaric chambers were applicable for those with PSP. They were told "no."

It could be that your (Nyl777's) patient deteriorated so rapidly due to the hospitalization not the elimination of the hyperbaric chamber therapy.

There are a lot of articles about these supplements: CoQ-10 (currently being studied by the NIH for whether it has any neuroprotective benefit from PD), ALA (for dementia), other antioxidants (April '06 Journal of Neurochemistry article by Japanese researchers looking at antioxidants to treat LBD and MSA, two related diseases), creatine (also in the NIH neuroprotective study), and many many more. Nothing is proven to work; lots of things are still being studied.

You can find some general info on nutrition and neurodegenerative diseases at: http://www.neurosy.org/nutrition/

Good luck,
Robin
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Postby nyl777 » Sun Jul 30, 2006 6:48 pm

THANKS A LOT ROBIN....GOD BLESS
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