Re: Fw: Putaminal GDNF Administration, Retinal Epithelial Cells Improve PD Symptoms (AAN 2002)

[Guest guest]

Bill,

Thank you. There is so much to understand with all of this. I

appreciate your explanation. I know that my neurologist told me there

was nothing that they could do to help me since requip didn't work.

He said that I could try any vitamin or mineral I wanted to. He

didn't think they would help me as far as cbdg or do any harm in any

way. He also said though there was so much they didn't know that

sometimes things are found out by mistake and that was called

science. I hope that you have a wonderful time in Austrailia. I have

been able to correspond with Anne some and found that she is a lovely

lady just like the ladies that frequent this support group. I know

the California ladies are anxious to meet you also. So ((((hugs to

you))). Be safe and have fun. Like the rest said we want lots and

lots of pictures!

God bless,

Belinda

> Belinda,

>

> This means they MAY have found another piece of the puzzle. It MAY

also mean

> they have found something that will help PD patients more than

Sinemet. All

> of this research is hopeful for people with movement disorders.

>

> The GDNF pump study in fact it helped five patients with PD get

about a 50%

> reduction in their worst symptoms of movement and dyskinesia. I am

sure any

> of you would appreciate that, but it is not a cure. It IS a clue

as to where

> to go from here. That is what scientific research is all about,

imagine a

> jigsaw puzzle of 100,000 pieces, this may be like finding where a

block of 20

> pieces goes. It IS hopeful.

>

> The retinal pigment epithelial cell study produced much the same

results on

> PD patients again. Remember that these papers inform other

researchers on

> positive results and like the jigsaw puzzle analogy above, the

whole group is

> working on putting the puzzle together, so it may be like finding a

small

> flag at the top of the mast of a 3 mast ship. It is progress.

Hopefully

> this will help some other researcher try some other approach that

will lead

> to a final solution.

>

> Note however, these are careful scientific studies and the patients

did not

> PAY for the treatment. The funding in at least one case was by a

> pharmaceutical company and the reason we got to hear about it was

because

> pharmaceutical companies put up the money to publish the papers.

So much for

> the theory of Pharmaceutical companies trying to hide cures from

us. That is

> why I am so wary of these expensive " cures " with natural healers

and fancy

> doctor's offices, with no peer reviewed papers. If you have a real

cure,

> subject it to peer review and share it with the world. Note that

the GDNF

> was pumped DIRECTLY into the brain. Dopamine can NOT cross the

blood brain

> barrier, so infusions into the blood are suspect to me also, it MAY

be

> possible for the GDNF to cross the barrier and find it's way into

the correct

> cells, but that is not a logical assumption to me.

>

> Note too that the " pumps " for doing this sort of thing were

developed through

> the space program and the ARPA program of government funded

research. They

> are very tiny mechanical mechanisms which are made by highly precise

> unconventional machining processes. ) That was my field of

research.

>

> Yes, Belinda they have found another piece of the puzzle. But how

soon it

> will help MSA (or even PD) patients is unclear. We want to work on

Congress

> to fund research like this as much as they do for Cancer and AIDS.

Congress

> is NOT listening to us, as some disease areas are getting 50%

increases and

> NINDS is getting about an 8% increase, which is barely keeping up

with

> inflation.

>

> Take care, Bill Werre

[Guest guest]

Belinda,

I will take lots of pictures at both 's and Anne's as well as Los

Angeles.

I have been on this list for over three years and have seen people try about

everything you can imagine. There are some medicines that help some people,

but the big three medicines are Florinef and Proamantine (may help as much as

80% of patients) for BP and Sinemet (seems to help about 40-45% of patients)

for rigidity (for varying amounts of time). A few people are helped by other

PD meds (such as Amantadine) or MS meds (like Baclofen), but every patient

with MSA is different and nothing helps every patient. That is why I feel

strongly that stem cell research is our best bet as it would actually replace

the dead cells with new live cells.

People here have tried alternative cures such as acupuncture (one of about 20

said they had great relief (but died in less than the average number of

years), others said little help). One tried a complete change of chemicals

and said it cleared his " brain fog " but he lost more movement when he went

off Sinemet. Other's have tried the CoQ10, but I have heard no significant

improvements there either. Remember that most chemical compounds will not

cross the blood/brain barrier, and therefore can not get to the dead brain

cells. The studies listed in the subject title of this note were put

directly into the brain (Just like stem cell research) and have worked for

some time anyway. If they last, they would be worth additional research, but

I have never seen animal tests of them before either - so did they put the

cart before the horse? If no animal tests have been done, they are at more

risk of permanent human brain damage than the stem cell research which DID

the animal research first.

The DBS is an operation and while it works for a great number of PD patients,

I have NOT heard of a documented case of it helping a MSA patient.

Documented scientifically as to how much improvement was shown and how long.

Don't forget in some double blind tests of procedures, people who had a dummy

operation improved as much as the people who had a real operation. That is

called a placebo effect. A procedure that really helps, should show far more

improvement that the dummy operation. We do know here on the list that there

is some danger from any operation as one member can tell you. Most doctors I

have talked to, do not feel DBS will help the majority of MSA patients as it

works best against tremor.

Drinking lots of liquids (and a glass or two of cranberry juice) will help

you prevent UTI's from our experience here on the list. Taking reasonable

amounts of vitamins will not hurt and may help, but taking megadoses of

antioxidants may hurt, the U.S. government has run tests and recommends the

following maximums (from all sources):

SUPPLEMENT MAXIMUM DAILY DOSE FOR ADULTS

Vitamin C 2000 mg.

Vitamin E 1100-1500 IU

Selenium 400 IU

Since you get some of these in your daily diet, taking large amounts in

supplements may be dangerous. But studies have shown that some (400 IU of

vitamin E per day is recommended for coronary artery disease) do help against

some diseases. I take a multivitamin daily which includes the minimums of

the above vitamins and minerals. I don't see where that will hurt and may

help me. I try to get exercise and I still at age 65, play four games of

competitive softball a week as well as table tennis. I am considering

renewing my interest in golf and maybe taking up tennis. I do believe in the

old adage " You don't stop playing because you get old, you get old because

you stop playing " . While that is not completely true (you do have to pace

yourself more as you get older to prevent injuries), it seems to work for me

as long as I exercise year round. With MSA I stongly believe you MUST " Use

it or lose it " when it comes to movement.

That is why I stress that the best things a MSA patient can do for themselves

is: drink their 64 oz a day of liquids; exercise (range of movement and

speech); and eat a balanced diet. As long as Charlotte did her exercises

daily, she was able to have some quality of life and she ate at least

mechanically soft food the day before she died, almost 12 years after it was

named PD and 7 years after MSA was the diagnoses (10 years after the neuro's

said it was definitely more than PD).

Take care, Bill Werre

----------------------------------------------

belnorest wrote:

> Bill,

> Thank you. There is so much to understand with all of this. I

> appreciate your explanation. I know that my neurologist told me there

> was nothing that they could do to help me since requip didn't work.

> He said that I could try any vitamin or mineral I wanted to. He

> didn't think they would help me as far as cbdg or do any harm in any

> way. He also said though there was so much they didn't know that

> sometimes things are found out by mistake and that was called

> science. I hope that you have a wonderful time in Austrailia. I have

> been able to correspond with Anne some and found that she is a lovely

> lady just like the ladies that frequent this support group. I know

> the California ladies are anxious to meet you also. So ((((hugs to

> you))). Be safe and have fun. Like the rest said we want lots and

> lots of pictures!

> God bless,

> Belinda

>

>

> > Belinda,

> >

> > This means they MAY have found another piece of the puzzle. It MAY

> also mean

> > they have found something that will help PD patients more than

> Sinemet. All

> > of this research is hopeful for people with movement disorders.

> >

> > The GDNF pump study in fact it helped five patients with PD get

> about a 50%

> > reduction in their worst symptoms of movement and dyskinesia. I am

> sure any

> > of you would appreciate that, but it is not a cure. It IS a clue

> as to where

> > to go from here. That is what scientific research is all about,

> imagine a

> > jigsaw puzzle of 100,000 pieces, this may be like finding where a

> block of 20

> > pieces goes. It IS hopeful.

> >

> > The retinal pigment epithelial cell study produced much the same

> results on

> > PD patients again. Remember that these papers inform other

> researchers on

> > positive results and like the jigsaw puzzle analogy above, the

> whole group is

> > working on putting the puzzle together, so it may be like finding a

> small

> > flag at the top of the mast of a 3 mast ship. It is progress.

> Hopefully

> > this will help some other researcher try some other approach that

> will lead

> > to a final solution.

> >

> > Note however, these are careful scientific studies and the patients

> did not

> > PAY for the treatment. The funding in at least one case was by a

> > pharmaceutical company and the reason we got to hear about it was

> because

> > pharmaceutical companies put up the money to publish the papers.

> So much for

> > the theory of Pharmaceutical companies trying to hide cures from

> us. That is

> > why I am so wary of these expensive " cures " with natural healers

> and fancy

> > doctor's offices, with no peer reviewed papers. If you have a real

> cure,

> > subject it to peer review and share it with the world. Note that

> the GDNF

> > was pumped DIRECTLY into the brain. Dopamine can NOT cross the

> blood brain

> > barrier, so infusions into the blood are suspect to me also, it MAY

> be

> > possible for the GDNF to cross the barrier and find it's way into

> the correct

> > cells, but that is not a logical assumption to me.

> >

> > Note too that the " pumps " for doing this sort of thing were

> developed through

> > the space program and the ARPA program of government funded

> research. They

> > are very tiny mechanical mechanisms which are made by highly precise

> > unconventional machining processes. ) That was my field of

> research.

> >

> > Yes, Belinda they have found another piece of the puzzle. But how

> soon it

> > will help MSA (or even PD) patients is unclear. We want to work on

> Congress

> > to fund research like this as much as they do for Cancer and AIDS.

> Congress

> > is NOT listening to us, as some disease areas are getting 50%

> increases and

> > NINDS is getting about an 8% increase, which is barely keeping up

> with

> > inflation.

> >

> > Take care, Bill Werre

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

[Guest guest]

Hey Bill,

Note in this particular study, GDNF was infused directly into the brain of

rats. This was published about a year ago but likely done well before it

was published. Maybe we can dig around some more in Pubmed and find more

such studies. http://www.ncbi.nlm.nih.gov/entrez

Hugs,

Pam

---

Eur J Neurosci 2001 Apr;13(8):1589-99t

Delayed infusion of GDNF promotes recovery of motor function in the partial

lesion model of Parkinson's disease.

Kirik D, Georgievska B, Rosenblad C, Bjorklund A.

Wallenberg Neuroscience Center, Department of Physiological Sciences, Lund

University, BMC A11, 221 84 Lund, Sweden. Deniz.Kirik@...

Here we studied the effects of glial cell line-derived neurotrophic factor

(GDNF) in a rat model that represents the symptomatic stages of Parkinson's

disease. GDNF was infused starting 2 weeks after an intrastriatal

6-hydroxydopamine (6-OHDA) lesion in order to halt the ongoing degeneration

of the nigrostriatal dopaminergic neurons. GDNF or vehicle was infused in

the striatum or the lateral ventricle via an osmotic minipump over a total

4-week period (2-6 weeks postlesion). Motor function was evaluated by the

stepping, paw reaching and drug-induced motor asymmetry tests before the

pump infusion was initiated, and was repeated once during (5 weeks

postlesion) and twice after the withdrawal of the minipumps (7 and 11 weeks

postlesion). We found that within two weeks following the lesion

approximately 40% of the nigral TH-positive neurons were lost. In the

vehicle infusion groups there was an additional 20% cell loss between 2 and

12 weeks after the lesion. This latter cell loss occurred mainly in the

caudal part of the SN whereas the cell loss in the rostral SN was almost

complete within the first two weeks. Ventricular GDNF infusion completely

blocked the late degenerating neurons in the caudal SN and had long lasting

behavioural effects on the stepping test and amphetamine rotation, extending

to 6 weeks after withdrawal of the factor. Striatal infusion affected the

motor behaviour transiently during the infusion period but the motor

performance of these animals returned to baseline upon cessation of the GDNF

delivery, and the delayed nigral cell loss was marginally affected. We

conclude that intraventricular GDNF can successfully block the already

initiated degenerative process in the substantia nigra, and that the effects

achieved via the striatal route, when GDNF is given acutely after the

lesion, diminish as the fibre terminal degeneration proceeds.

PMID: 11328352 [PubMed - indexed for MEDLINE

Re: Re: Fw: Putaminal GDNF Administration, Retinal

Epithelial Cells Improve PD Symptoms (AAN 2002)

Remember that most chemical compounds will not

cross the blood/brain barrier, and therefore can not get to the dead brain

cells. The studies listed in the subject title of this note were put

directly into the brain (Just like stem cell research) and have worked for

some time anyway. If they last, they would be worth additional research,

but

I have never seen animal tests of them before either - so did they put the

cart before the horse? If no animal tests have been done, they are at more

risk of permanent human brain damage than the stem cell research which DID

the animal research first.