How do you TRAP a Disease?

There is some new and exciting research out in the media over the past few days. It seems that some smart scientists have discovered a way to identify the genetic messages of distinct cells.

Before I go into how this works I want to discuss how this helps Parkinson's Disease research. As is well known, the ongoing, progressive cause of Parkinson's is the death of dopamine neurons in the substantia nigra section of the brain. The aspect of this that is not well known is that there are 2 different types of dopamine neurons in this brain section, but only one of the types dies off in PD. No one understands why this is the case, how it happens or if there is a way to stop it. The main reason that none of this process is understood is that there has been no good way to isolate and analyze these two different cell types. That is there wasn't a way until recently.

Scientists at the Michael Stern Parkinson's Disease Foundation, part of Rockefeller University, have developed a method to distinguish between these 2 types of dopamine cells as well as all other cell types. They developed a procedure called Translational Ribosome Affinity Purification (TRAP) that can essentially isolate the genetic messages of any cell thereby showing the differences in the cells at a genetic level.

All cells have a structure called ribosomes that work as the protein production factories. The proteins that are "created" within the ribosomes are a direct result of their genetic make up. By looking at which proteins are produced scientists can determine which genes are "turned on" in the cell. By understanding which genes are "turned on" scientists can determine differences in similar cell types.

TRAP uses genetically engineered mice to tag ribosomes in a particular cell type and then capture the genetic messages as they pass through ribosomes on their way to creating proteins.

So how does this research help Parkinson's Disease? Well, first it allows for better research into how the two types of dopamine neurons differ. Understanding this difference may point to reasons why one type dies while the other lives on as usual. Also, understanding the proteins created by the diseased cell type may offer insight into better treatments for PD. Who knows... it may be possible to somehow supplement the proteins that the dying cells created.

All in all I think this is a remarkable breakthrough that has the potential to speed up research into new treatments as well as new avenues for research into what causes Parkinson's Disease in the first place.

What Causes Parkinson's?

No matter what I read about Parkinson's I am still intrigued the most by the question of what causes this difficult disease? Why does it sometimes seem to run in families, but more often than not seem to just affect someone out of the blue?

I have read extensively about possible causes mostly because knowing the exact cause can only help with finding a way to stop the disease and/or cure it. My own personal belief is that there is often a genetic pre-disposition, but that there is also generally something environmental that triggers the cell death that occurs. Then again I am sure that there are cases with no genetic link at all and other cases where the disease developed solely based on genetics. I'd love to know how this continuum from genetics to environment works.

I know a lot about several of the genes that are implicated as links to Parkinson's, but so far there is no smoking gun genetically. I also know that pesticides and heavy metals are often sited as environmental causes. The latest potential cause is that the heavy metals that often exist in wine can lead to Parkinson's (as well as some cancers). Just a few years ago the biggest "healthy thing" to do was to have 1 glass of red wine a day to protect your heart. So it seems that wine might protect your heart, but hurt you in other ways.

I do not believe we know at this time whether or not most of the sources implicated truly cause disease or protect us against disease. I am hoping that in due time these things will become more apparent. For now I am planning to live my life well and enjoy every moment. I don't plan to be overly worried about pesticides, heavy metals in wine or my genetics.

How about you? Would you want to know if you had a PD gene? Are you avoiding all pesticides and other possible environment causes? Let me know.

Neuroprotective Compounds??

There is a new study out that offers a ray of hope for all neurodegenerative diseases including Parkinson's, Alzheimer's and ALS. The study was conducted by Dr. Santosh D'Mello and colleagues at the University of Texas at Dallas and Southern Methodist University and was published in Experimental Biology and Medicine. The study looked at a class of compounds, 3-substituted indolones, that are believed to protect neurons from degeneration. A previous study identified one particular 3-substituted indolone, GW5074, that proved to have neuroprotective factors in a mouse model of degeneration. The present study worked to identify several other compounds that worked even better than GW5074 and caused no cell toxicity even in high doses.

Because of this work scientists will hopefully be able to identify several compounds to synthesize and study in pre-clinical and clinical studies. With any luck one or more of these compounds will prove useful in protecting neurons from cell death. Protecting the neurons may in turn decrease the rate or stop the progression of many of these debilitating diseases, including Parkinson's.

I am sure that any human treatment with these compounds is still several years away, but any step forward towards prevention or a cure is always a great thing!

Parkinson's and Sleep Disorders

Sleep disorders or disturbances are one of the many symptoms reported by Parkinson's patients that do not tend to be as widely discussed. Several researchers have suggested that the sleep disturbances may pre-date the more obvious motor symptoms by several years.

The sleep disturbances in PD intrigue me because it is widely reported that any tremors stop while PD patients are sleeping. At the same time researchers note that PD patients seem to lose the normal function of "muscles freezing" while sleeping. Unlike "normal" people PD patients maintain more control over their muscles which can cause issues with "acting out" their dreams. This ability can cause PD patients to kick, hit, walk, talk, etc. regularly while asleep. To me the tremors stopping, but general movements increasing seems very odd, to say the least.

Because of this seemingly in congruent situation I decided to research more about sleep disorders in PD. What I found is that researchers believe the decrease in dopamine directly affects sleep. It has been shown in studies with mice that decreasing dopamine caused the mice to experience significant difficulties with sleeping. The mice also exhibited less brain activity associated with dreaming. Conversely if mice were given increased dopamine they were able to sleep and exhibited increased brain activity associated with dreaming during wakefulness. It is also reported that dopamine agonists tend to have excessive daytime sleepiness as a side effect. Given the studies in mice showing that increased dopamine can cause sleepiness this side effect makes sense.

Exactly how to treat the sleep disturbances does not have a clear cut answer. (At least not one that I have found.) The fact that depression and dementia can also be associated with PD complicates the issue of sleep disorders as both of these conditions can affect sleep on their own.

The most interesting aspect of what I learned about PD and sleep disturbances is still the idea that the motor symptoms are probably pre-dated by sleep disturbances. Wouldn't it be great to be able to diagnose sleep disturbances specific to PD early on so that the patient could start some of the medications that may delay onset of this disease?

Please let me know if you found this information useful or if there is something else you'd like to know about. I'll research any aspect of PD and blog about it to let you know what I find.

Team Fox

I have some good news today! My Team Fox fundraising total is now at $10,000.01 for the 2008 year! I couldn't be happier. I joined Team Fox, the grassroots, volunteer fundraising arm of the Michael J. Fox Foundation, in December 2007 and set a goal to raise $10,000 by the end of 2008. I actually reached the $10,000 mark back in July, but since all donations made in 2007 were no longer reported on the site I was still below the $10,000 mark. It was important to me to make sure that the 'contributions raised' on my personal page reached the stated goal so that no one could ever question whether or not I reached my goal.

About 2 weeks ago I was just over $9600 and reached out to all of my supporters to each make an additional $5 donation. I asked for the donation in honor of my mother-in-law who just passed away. My mother-in-law did not have Parkinson's (my mother is the one with PD). However my mother-in-law was my biggest supporter in raising money for this cause and I thought it would be a fitting way to honor her if the final donations were made in her memory. Several of my supporters made an additional donation and then to my surprise and delight, 2 of my friends, Francis and Julia Creighton, donated the remaining funds needed- $236.20- to break through that $10,000 barrier. They made their donation yesterday morning and brought tears to my eyes. I am proud to say that my personal Team Fox page now reads that I have raised $10,000.01. My mother-in-law would be proud!

In total my supporters have helped me raise over $12,608 in just about 10 months. In 2009 I plan to continue raising money to find a cure for PD and will need to find new ways to accomplish my goals. If anyone has any suggestions please enter a comment on this blog or email me through the email address listed in my profile. No idea is too small or too big. I'd love to hear from you.

To visit my personal Team Fox page and to see the $10,000.01 for yourself please click on this link.

Karen's Team Fox Page

A True Hero!

I am a member of Team Fox, the volunteer fundraising arm of the Michael J. Fox Foundation. I joined Team Fox because my Mom has Parkinson's Disease and I was tired of sitting on the sidelines just hoping that her progression was slow. Since joining I have raised over $11,000 and have enjoyed every minute of it! The most amazing part of my experience with this great foundation though has been getting to know the people that make up Team Fox and what each one of them is doing to find a cure.

Today's blog posting is about one of these people- Alyssa Johnson. Alyssa has early onset Parkinson's Disease, but she still manages to run marathons, literally! She ran the Boston Marathon back in April and is gearing up for the New York Marathon on November 2. To me, Alyssa is an inspiration, a hero and reminds me each and every day to keep living my life in a positive, upbeat way no matter what happens. If someone with PD can continue to run marathons then I can overcome any of the obstacles in my life.

If running marathons is not enough she and her husband have also created a calendar in order to raise even more money for the Michael J. Fox Foundation. Their calendar is about wet dogs and all profits from the calendar will go to the Foundation. To purchase a calendar for yourself or a friend please click on this link.

http://wetdogscalendar.com/Calendar/Order.html


I have visited Alyssa's Team Fox page often during my fundraising efforts as it never ceases to inspire me. Raising money is not easy and sometimes you meet with some pretty unsympathetic souls, but all I have to do is remember that people like Alyssa and my Mom still exist and are fighting back and then I keep going.

Besides marathons and calendars Alyssa was also featured in the NY Times as one of 7 people currently living with Parkinson's. This video segment was just amazing.
NY Times Article

To end my post I want to wish Alyssa the best of luck. I have not met her in person, but what she is doing with her life has definitely touched my life. If you can please support Alyssa in her efforts to raise money either by buying a calendar or making a $5 donation on her Team Fox page. Every single dollar raised helps find a cure!

Run Alyssa Run!

Is Parkinson's Disease Inherited?

Is Parkinson's Disease Inherited? That was the question I asked back in 1993 to one of my neurobiology professors, a Parkinson's expert and researcher. On that day he told me definitively, "No." Even back then, 15 years ago, I suspected he was wrong. I really thought that there was probably some sort of genetic connection that was not understood at all.

Today scientists believe that there is a genetic connection, in fact, they have identified several mutations that can give rise to Parkinson's Disease. That being said, scientists estimate that less than 25% of all PD cases are genetically linked and they also believe that not all those with the gene mutations develop PD.

The information about familial (genetic) Parkinson's is actually quite extensive now. (Isn't it amazing what we have learned in 15 years?) Now scientists have numerous genetic suspects. Here is a summary of some of the most prevalent.

1. LRRK2 (leucine-rich repeat kinase)- This gene is a dominant gene, meaning that a person only needs one copy of this gene in order for it to be expressed in an individual. Scientists have identified at least 20 mutations in families that exhibit late onset PD. This genetic "flaw" is the most common form of Parkinson's as far as scientists know at this time. This is the genetic mutation that Sergey Brin identified in his gene make up.

2. GIGYF2- Mutations on this gene are known to cause a single amino acid substitution in the protein this gene encodes for. What does this mean? Essentially one link in the chain of a protein is swapped out for a different kind of link which then leads to the protein being formed incorrectly. The interesting aspect of this genetic mutation is that it is also assoicated wiht Insulin production. Scientists aren't sure, but they think there might be a connection between PD and Insulin and thereby possibly diabetes. There are now ongoing studies to try to piece together how these diseases are inter-related, if at all.

3. A study of a handful of French families with Parkinson's uncovered that duplications in the gene that creates the alpha-synuclein protein may cause PD. It is known that alpha-synuclein protein is a major component of Lewy Bodies, an abnormal "clump" of proteins that form inside nerve cells. The French study showed that a duplication of this gene caused PD similar to other types of PD, but that a triplication of the same gene caused a devastating form of PD with an average onset of 34 and a rapid decline into dementia. I know from reading other articles in the past that there is a big push to look into whether or not limiting or removing "extra" alpha-synuclein could slow the progression of PD.

4. LI66P mutation- This particular mutation is linked to an early onset form of familial PD. It is thought that this mutation disrupts DJ-1 protein folding. By disrupting folding of a protein this mutation would essentially render the DJ-1 protein useless and upset the functions that it performs in the body. LI66P is recessive so someone would have to receive the same gene mutation from both parents in order to have its affects exhibit.

There are several other genetic mutations that are linked to PD, but I think 4 is enough for any one blog posting. Just because someone has one of these mutations does not appear to be enough to develop Parkinson's Disease. It is thought that the genetic mutations, at least for the most part, make someone more susceptible, but that some sort of environmental trigger needs to occur as well for a person to develop the disease. The exact mechanisms are not known.

So I now have a question- if PD ran in your family would you want to know if you had any of these genetic factors if there was nothing to do to prevent the disease? PD does run in my family, my Mom, my Grandpa, but as of now I have no desire to have any genetic tests done. That may change in the future especially if preventative methods are developed. Only time will tell.

Have You 'Googled' Parkinson's Disease Recently

If you 'Google' Parkinson's Disease today the item in the 4th position is about Google Co-Founder, Sergey Brin. This fact may not be news to most people in the Parkinson's Community as Mr. Brin is all over the PD news today. Unfortunately his mother and her aunt have PD. I saw an article earlier this week about his family, his mother's PD and the fact that the Brin family has endowed a professorship at the University of Maryland. It caught my eye since a co-founder of Google being interested in curing Parkinson's can only help my cause. However, this act of advocacy, kindness, charity, or whatever appropriate word we use, is not the reason for all the hubbub surrounding Mr. Brin and Parkinson's. The reason for the NUMEROUS news stories is that Mr. Brin started his own blog and his post from yesterday is about Parkinson's Disease and his family.

In his blog posting he reveals that through the genetic testing of his wife's company, 23andMe, he discovered that he has a genetic mutation which raises his risk for developing Parkinson's. The LRRK2 gene with the known mutation, G2019S, is a marker for the disease although not everyone with this mutation will develop PD. His mother also has this genetic mutation. It is thought that familial PD is relative rare, but there are definitely instances of several family members across generations developing Parkinson's.

I was very interested in all the news surrounding Brin's PD disclosure. First, Parkinson's "runs in my family" so obviously I have an interest in a possible genetic pre-disposition. I would love for science to be able to tell how much of this disease is genetic and how much is environmental or other factors. No one knows this information yet and the thoughts around this subject vary greatly among experts. (I have read anything I can find on this subject and the experts definitely do not agree.)

Second, I am fascinated that the blog entry is what "made the news". I only came across one article earlier this week about the Brin family endowing the professorship yet the blog entry is all over the web already. (I guess I am adding to that.)

I applaud Sergey Brin for allowing for his personal family matters to become somewhat public. I have no doubts it is not easy for someone in the public eye to share personal information so publicly. I also applaud his entire family for taking steps to find a cure and give back to the world at large. I hope that his tie to Parkinson's will help get us closer to a cure.

To read Sergey Brin's blog click on this link.

http://too.blogspot.com

Parkinson's Disease Edaravone Study

An article published in the journal BMC Neuroscience in the August 2008 edition caught my eye this week. The article was about a compound called edaravone (chemical name- 3-methyl-1-phenyl-2-pyrazolin-5-one) that is used in ischemic stroke patients to protect neurons in the brain. Scientists think that edaravone may be neuroprotective because it will scavenge free radicals in the brain. The researchers in this study thought that this neuroprotective behavior might help in Parkinson’s Disease.

So what’s a free radical exactly? (No, it’s not a political extremist running amok in society as my husband likes to say every time I say something about free radicals and PD.) Free radicals are molecules that have an “extra” electron that is not paired with another electron. This “extra” electron does not like being unpaired so it looks for other molecules that it can “take” electrons from. When a free radical “takes” these electrons it can cause a host of issues for the “donor” molecule including cell death. Obviously the more free radicals that exist in someone’s brain the more cells that can be adversely affected. Edaravone is thought to essentially “eat up” these free radicals by binding with the “extra” electrons itself.

Now on to the actual study and how edaravone may help Parkinson’s Disease.

The study was conducted in two phases. First a known dopamine neuron toxin called 6-OHDA (6-hydroxydopamine) was applied to cells in-vitro (outside of a living organism) and then either edaravone or regular old saline was applied to the cells and the number and/or concentration of dopamine neurons was measured to see which group contained more dopamine cells. Second, an animal model of PD was used. In the second phase 6-OHDA was injected into several rats’ brains and then either edaravone or saline was administered intravenously at one of two different time periods. The first group received either edaravone or saline 30 minutes after the 6-OHDA injection and the second was administered edaravone or saline 24 hours after the initial 6-OHDA injection. The study was looking at two things: 1) Did the edaravone rats maintain more dopamine neurons than the saline rats and 2) Did those who received the edaravone at 30 minutes maintain more dopamine than those who received it at 24 hours.

The results of the study bode well for edaravone helping to protect dopamine neurons. First, the in-vitro part of the study showed a statistically significant increase in the number of surviving dopamine neurons in the edaravone infused cells over the saline infused controls. Second, the rats that received edaravone at either 30 minutes or 24 hours both had statistically significant higher amounts of dopamine cells when measured against those rats that only received saline. Also, those rats that received the edaravone at 30 minutes had statistically significant more dopamine neurons than those that received the same dosage at 24 hours.

The study’s authors concluded that edaravone did three things that might protect cells. First, it decreased oxidative stress by scavenging those nasty free radicals. Second, it decreased apoptosis (essentially cell suicide) and lastly it decreased inflammation in the brain.

So what implications does this have for Parkinson’s Disease? At this moment, not a lot, but possibly over a few years this compound could be used to help delay onset or help slow progression by “eating up” free radicals. Edaravone might also be helpful by increasing the survival of transplanted stem cells by decreasing apoptosis (cell suicide) and it might help decrease the inflammatory reaction due to surgery in the brain. All of these avenues offer hope for potential drugs or PD treatments that could help millions of Parkinson’s patients in the future. I will be watching for updates on edaravone and any applications it may have to Parkinson’s Disease.

As always here is a link to the study. A link to the full article is at the end of this abstract.

Edaravone Study

Stem Cells and Parkinson's Disease

Stem cells have long been in the news as a potential therapy or possible cure for Parkinson's Disease. So what exactly are stem cells? First you should know that there are several different types of stem cells. The two types that are mentioned most often are embryonic stem cells and adult stem cells. There are other types, but let's stick to these two.

A stem cell is a cell that has three basic properties:

1. It can "renew" or regenerate itself for a much longer period of time than regular cells in the body,

2. It is unspecialized- meaning that it has not "chosen" a specific tissue type, i.e.- heart muscle, brain tissue, liver cell,

3. It has the ability to specialize- meaning it can become a specific type of tissue and take on that tissue's role in the body.

An embryonic stem cell is an undifferentiated (unspecified) cell from a 5-day old pre-implementation embryo.

An adult stem cell (aka somatic cell) is also an undifferentiated cell but these cells come from many types of tissue, bone marrow, brain tissue, etc. There is no embryo involved in these types of cells.

So what's all the debate about? Well, during the extraction of embryonic stem cells the embryo itself is generally destroyed. This risk raises the ehtical/moral questions about whether or not the procedure is destroying life or advancing science. Adult stem cells can also be used for research and possibly therapies, but it is not well known if adult stem cells can differentiate into all the cell types in the body. Embryonic stem cells are more versatile in that they can become most, if not all, types of cells in the body. However, adult stem cells are not rejected after implantation as they are from the patient's body already.

Until recently it seemed like both embryonic and adult stem cells both had advantages and that the moral and political debate would continue for years. Then something amazing happened back in November 2007, two scientists working separately were able to turn ordinary human skin cells into what could effectively be considered embryonic stem cells. The scientists took regular human skin cells and with the help of some genetically engineered viruses were able to transform the skin cells into embryo-like stem cells. Their method used four genes in a proper sequence to make the skin cells almost indistinguishable from embryonic stem cells.

This new finding breaks open the entire stem cell research world. Now there is a way to take regular cells, without hurting anyone or anything, and turn it into essentially embryonic stem cells. With any luck this method will allow for vastly increased ways to study embryonic stem cell, develop new therapies using them and also increase federal funding for these lines of research.

I will of course be watching for further developments in this research as it holds out hope for a cure or at least better therapies for Parkinson's Disease. When I find further research in this area believe me that it will be posted.

Parkinson's Disease Caregivers

Today I am going to write about caregivers of people with Parkinson's. As usual when I decided this was the topic I wanted to write about I did some research on the Internet to see what sites and information already exists in the ethernet. To my surprise there was remarkably little information and only a couple of sites that seemed to focus on the caregiver at all. Now, I think that is something that I will have to work to change in the future. Obviously I will not change that in one blog posting so I will not try.

The one site I came across that seemed to have a lot of information and a good forum for caregivers and/or patients to share information is:

www.myparkinsons.org

This site has some useful information for caregivers, links to MANY other parkinson's sites, but what seemed the most useful in my mind was the forum. There were numerous postings and it definitely appears that the site has a true community that will try to answer questions that you have.

I personally think that caring for someone who has PD must be very difficult, especially as the patient's health begins to decline. My Mom has PD and my Dad is the primary caregiver so I do not know exactly how tough it is, but I am sure it is not easy.

In general the caregiver information out there all seems to say the same thing: get informed, stay informed, and make sure to take some time for yourself as well. I think that is all good advice.

To all the caregivers I wish you luck and salute you for your fight against Parkinson's Disease in whatever way you do it.

Parkinson’s Disease and Sonic Hedgehog

You read the title of this post correctly! Now you’re asking what the heck do Parkinson’s Disease and Sonic the Hodgehog have in common? Well, the disease and the video game have nothing in common, but a brain protein named after the video game is being linked to the disease. That’s right there is a protein in your brain named Sonic Hedgehog (shh) that is implicated in Parkinson’s Disease. I thought I was reading something wrong when I first read an article about Sonic Hedgehog, but I was not wrong and this was no joke.

There are a group of brain proteins called hedgehogs of which Sonic Hedgehog is one. The role of shh is seen during embryogenesis (embryo growth) and spurs development of dopaminergic neurons in the basal ganglia section of the brain which is affected in PD. The protein is now known to exist in the adult brain too.

The name alone inspired me to learn more about this protein so I began searching the Internet for different articles about this uniquely named molecule. What I found was an entire body of knowledge and study about this “hedgehog” protein. It turns out that there are three separate avenues of study of shh in Parkinson’s.

First, researchers are looking at whether this protein could cause adult stem cells in the brain to differentiate into (become) dopamine producing neurons. Obviously being able to grow more dopaminergic neurons in the affected areas in patients with PD would help tremendously. Researchers are still working on this avenue of study in animals. Time will tell if this has efficacy in humans.

The second avenue of research explores applying shh directly into the basal ganglia. It appears that shh can work as an actual neurotransmitter in the brain and when applied to the basal ganglia in animal studies the amount of electrical activity in the subthalamic nucleus decreased. Since the subthalamic nucleus is hyperactive in PD, a compound that decreases this activity would be a possible treatment. Again, this line of research is being pursued, but human results are not known at this time.

Lastly, several researchers explored the neuroprotective properties of Sonic Hedgehog and also another protein, Gli-1. They delivered both of these compounds to the brain via a genetically engineered virus. What they found was that both of these proteins appear to protect neurons and prevent neuronal loss as compared to other controls. Sonic saves the day!

I started reading about Sonic Hedgehog because I found the name amusing and thought it was great that neuroscientists have a wonderful sense of humor. What I found was 3 different paths of research about this one compound. I am still amazed that researchers can take one particular protein and then can find 3 completely different potential ways that this protein can help in a disease like Parkinson’s. None of these avenues have led to clinical applications yet, but that does not mean that one or all won’t in the future.

Pain and Parkinson's Disease

A new research study conducted in Italy is making the news today. The study looked at the incidence of pain reported by Parkinson’s patients versus a normal control group. I found this study interesting because it shows that researchers are recognizing that there are symptoms besides motor symptoms that may lead to quality of life issues or may help diagnose the disease easier. In my opinion this study is not a huge breakthrough in that it is not a bug leap closer to a cure, but all new knowledge does help move us collectively closer to the goal of a cure.

The researchers started the study with the hypothesis that pain is associated with Parkinson’s at clinical onset or at some point thereafter. The study divided pain into 2 categories: dystonic and non-dystonic pain. The first type, dystonic, is characterized as painful sensations, often described as cramping or arthritis and is caused by involuntary muscle contractions. Non-dystonic pain is essentially pain with the absence of dystonic pain. What the researchers found was that pain associated with dystonia was statistically higher in PD patients versus the control group. (69.9% vs 62.8%, p=0.04) The researchers also found that non-dystonic pain was not statistically higher for Parkinson’s patients, but the occurrence of non-dystonic pain was correlated to the onset of clinical Parkinson’s.

All of this information is overall interesting even if I don’t see a direct application to immediate better treatments or a cure. To me what this means is that doctors should pay attention to unexplained, dystonic pain and keep Parkinson’s as a possible diagnosis in the back of their minds. I have a feeling that many people with Young Onset Parkinson’s that present with pain as one of their main symptoms will have many tests to rule out a host of other possible causes before a PD diagnosis is made. I have no doubt that going through all the tests must be aggravating to say the least.

To read the abstract of this study from the Archives of Neurology click this link.

http://archneur.ama-assn.org/cgi/content/short/65/9/1191

Depression in Parkinson's Disease

The link between Parkinson's Disease and depression has come to light more in the past 5 years or so. Researchers are finally beginning to notice that depression occurs in a large part of the PD population (estimates are 40-50%).

The exact reasons for why such a large portion of Parkinson's patients develop depression are not entirely known. It is thought that the biochemical alterations are a large culprit, but stess and psycho-social reasons probably play a role too. I am sure that people on hearing their diagnosis of PD are less than happy and may experience some level of depression for a while, but when does this depression cross the line from feeling down about a difficult disease into a clinical depression? Also, there is evidence that 12-37% of patients with depressive symptoms develop these symptoms prior to developing motor symptoms. Does this mean that the depression is mostly biochemical? I do not know.

How do you piece apart the chemical changes in a person's brain from the psycho-social or stress induced changes in someone's attitude or behavior? This is a question that I think will take years to answer, if it is able to be answered at all.

Since there is a large population of depression in PD you would think that treatments would be fairly well understood. That is not true at all and actually the opposite is closer to the truth. From the research I have read there are several anti-depressants that are possible for treatment, but none of them have significant research surrounding their use and efficacy in treating depression in Parkinson's. That being said, an anti-depressant may be the right choice for many patients. A motor disease specialist should be able to recommend some medications as possible treatments.

Besides anti-depressants a patient suffering from depression may want to consider other forms of treatments either jointly with anti-depressants or by themselves. Obviously qualified medical personnel should help the patient with any of these decisions. Some possibilities for treatments are: counseling, stress-management, relaxation techniques, coping strategies or support groups.

It is important to note that although Parkinson's is a difficult disease for all patients those with depression may suffer from a lower quality of life. It is important to work closely with the medical community to monitor the patient's mood and to help if warranted. Remember not all PD patients suffer from depression, but those that do may need help seeking treatment.

What Do You Want in a Post?

In thinking about my Parkinson's blog post for today I decided that I would love to know exactly what types of topics are of interest to readers so that I can blog about those topics more. So I have a favor to ask. Can you please let me know what topics interest you by leaving a comment on this blog post? If you'd rather email me instead please visit my Profile page and click on the email link.

Let me know if you are interested in postings about PD medications, fundraising or volunteer work, political advocacy, information about the mechanisms behind Parkinson's Disease or something else? I'd love to "hear" your thoughts.

I'm very interested in how to better provide valuable information for the Parkinson's community.

Have a great weekend!

Protein Link Between Parkinson’s and Alzheimer’s

I think it is safe to say that everyone knows what Protein is at least in terms of food and nutrition, but not everyone might realize how much different protein molecules play vital roles in our bodies and in our brains.

First, exactly what is a protein at the molecular level? A fairly simple definition is that proteins are strings of amino acids that our bodies get from food and/or make themselves. These “strings” can then “fold” in several different ways and also interact with other proteins. A reasonable visual representation would be to think of them as a string of beads (amino acids) that is folded around itself and interwoven with other strings of beads. Obviously this is a fairly simplified example, but I think it gets the picture across.

Now, what does this have to do with Parkinson’s Disease or Alzheimer’s Disease? Well, proteins play many roles in our bodies, from forming muscles to helping neurons to communicate in our brains. In PD a particular protein, a-synuclein, is proposed to play a critical role in the formation of Lewy Bodies, a tell-tale sign of PD. Lewy Bodies are essentially the accumulation of a bunch of a-synuclein proteins and are known to cause disruption to neurons. In Alzheimer’s the Abeta amyloid protein is implicated in the formation of plaques which in turn cause the neurological difficulties experienced by Alzheimer’s patients. It is known clinically that a person who develops either PD or Alzheimer's is at a significantly higher risk to develop the other disease.

A new study conducted at the University of California at San Diego used super computers to help analyze how these two specific proteins interact and to explore why people with either Alzheimer’s or Parkinson’s disease have a higher risk for also developing the other neurological disorder. The researchers discovered that abnormal interactions between a-synuclein and Abeta amyloid can lead to the creation of “hybrid” complexes which result in a combination of Alzheimer’s and Parkinson’s. Using the computer models researchers were able to see the new hybrid protein form with a small hole called a “nanopore”. This hybrid disrupts neuronal activity.

The interesting part of this finding to me is that researchers have now shown at least one clear path of how Parkinson’s and Alzheimer’s are related in a molecular way. To me this finding clearly shows how solving the puzzle of one disease will have a dramatic impact on the other. If such a clear connection can be shown in these two diseases what other connections are there to other neurological disorders like ALS, MS, Huntington’s Disease, etc? How do we unlock the mystery of any of these diseases so that we can then solve all of the others? I am still convinced that curing or preventing one of these many diseases will be the key to curing them all.

As always here is the link to the study.
http://www.sciencedaily.com/releases/2008/09/080903204225.htm

New Finding with Deep Brain Stimilation

Could Deep Brain Stimulation(DBS) Stop the Progression of Parkinson's Disease???? Researchers at the University of Cincinnati and University Hospital are saying "Yes". A new study conducted by Caryl Sortwell, PhD and Michael Behbehani, PhD suggests that with a certain percentage of DBS patients that is the case. The study indicates that a protein in the brain called BDNF (brain-derived neurotrophic factor) is increased by the technique. This protein is known to be a tropic factor that provides "a nurturing, growth chemical" and it is thought that it may be responsible for the slow down in progression that some patients exist.

The study does note that not all patients seem to have the same results from DBS. Some patients have a marked decrease in symptoms and a slower progression while others do not. There is no discussion of why some patients respond so positively while others do not.

I personally hope that more research will be done to isolate the difference among different patients to help find a way to help all patients. I would also love to see if there are other ways to increase BDNF in the brains of PD patients using other techiques. Could it be possible that this particular protein could help increase the quality of life for PD patients for numerous years? Could the brain help repair itself if the neuronal death is slowed or stopped? I am of the opinion that further research into these areas and questions is needed and needed soon.

To read one article about this study please click the link below.
http://www.sciencedaily.com/releases/2008/09/080902171151.htm

Pramipexole treatment for Parkinson's Disease

Pramipexole is a non-ergot dopamine agonist that has been used to treat Parkinson's for several years now. Researchers are now studying whether or not this drug has neuroprotective properties and if it could possibly be used to help treat depression in PD.

Before we get into the latest research I want to define what a 'non-ergot' vs. ergot dopamine agonist is. A dopamine agonist is a compound that binds directly to dopamine receptors in the brain and can help relieve symptoms of Parkinson's Disease. An ergot compound is one that is derived from the ergot fungus, while a non-ergot compound is not. Many of the older dopamine agonist drugs were ergot dopamine agonists and they have now been associated with an increased risk for valvular heart disease because of their ability to act on serotonin (5-HT) receptors within the heart. The non-ergot dopamine agonists are not associated with this risk and tend to be used more prevalently today. (Note: Do not start or stop taking any medications without talking to your doctor. The author of this blog is not a doctor and is not offering medical advice.)

Pramipexole has been used to treat the general symptoms of Parkinson's for several years. That fact is not what interested me in this drug though.

The fascinating part to me is that researchers are now testing if this drug has neuroprotective abilities which could thereby slow the clinical progression of Parkinson's. Obviously that would be wonderful news for the PD community. There is currently a study called PROUD (http://www.medicalnewstoday.com/articles/119308.php) taking place in the UK that is examining this question of neuroprotection using pramipexole. I will be watching for the results from this study.

Other research into pramipexole's uses that intrigues me is the study of whether or not pramipexole is able to help treat depression in Parkinson's. Since depression is estimated in 40-60% of PD patients and about 50% of these patients do not respond to the usual anti-depressants, news of a dopamine agonist having a positive effect in this area would be great. Researchers are studying the effect on depression by pramipexole alone and also as adjunctive therapy along with another anti-depressant. I am particularly interested in depression in Parkinson's as research seems to note that people with PD and depression have a lesser quality of life than those that remain more optimistic.

Disclaimer: I felt I needed to add an additional disclaimer to this post. I am not a doctor or a scientist and am not offering medical advice in this blog. I am merely offering up information that can be used by the PD community in the hopes of helping others. Please consult your doctor about any medical treatment questions you have.

Parkinson's Disease and Brain Prosthetics?"

Could “brain prosthetics” be the futuristic fix for Parkinson’s Disease. Given the fact that Deep Brain Stimulation already uses neural implants hooked up to a type of pacemaker, I say Why Not?

US News and World Report recently had an article about neuroengineers and some neuroengineering work at MIT that could potentially be applied to treat Parkinson’s Disease. (I have to say that I find it fascinating that a discipline such as neuroengineering even exists. Just think if you’d heard about this type of work 20 years ago and what you would have thought.) The article talked about research into robotic exoskeletons, better prosthetic arms and legs, and the most interesting to me, the development of a “tiny LED light switch” that could be implanted into the brain to treat patients with conditions such as Parkinson’s or blindness. The idea is to use this tiny device as a “stoplight, turning neurons on and off in a thousandth of a second.”

Obviously this type of research having real life applications is a little ways off, but I have no doubt that we will see these ideas and therapies becoming realities in the next 10 years. I highly recommend reading this short article. It won’t take you more than 5 minutes.

http://www.usnews.com/articles/science/medical-science/2008/07/24/will-upgrades-enhance-our-bodies.html

Azilect and Parkinson's

What is Azilect? Azilect is a PD drug made by Teva Pharmaceutical Industries, Ltd. It is Teva's version of a rasagiline compound. It is classified as a monoamine oxidase-B (MAO-B) inhibitor and it is touted as a drug that may slow down the progression of early stage Parkinson's. Now you may ask, "What the heck is monoamine oxidase-B and what does it have to do with PD?" And here is the answer.

Monoamine oxidase is an enzyme that comes in 2 forms, MAO-A and MAO-B. MAO-B is far more prevalent in the body and is responsible for the breakdown of dopamine in the synapses in your brain. Essentially, dopamine is secreted from neurons into the synapse (space between neurons). The dopamine is then picked up by dopamine receptors on other "receiving" neurons. In patients with PD the amount of dopamine released into the synapses is significantly decreased as the number of dopamine-releasing neurons is drastically reduced. MAO-B is the enzyme responsible for burning up "extra" dopamine in the synapses.

Azilect works by inhibiting the production of MAO-B in the brain. By decreasing the amount of MAO-B in the synapses the rate that dopamine is burned, or metabolized, is reduced. This reduction allows for more dopamine to remain in the synapses longer and to then bind to the dopamine receptors on other neurons. The overall effect is to increase the amount of "effective" dopamine in the brain. By increasing the amount of dopamine that binds to neurons the PD symptoms are lessened.

Azilect is currently being widely touted as a drug that may slow the progression of Parkinson's Disease. Researchers are also suggesting that this may be a good drug to use in early PD before symptoms become too debilitating without medication. Now, I researched this topic on the Internet extensively and I have seen both sides of this issue discussed. Some researchers are of the mind that this drug will truly slow the progression of the disease. Others are of the opinion that it is another possible drug in the arsenal for movement disorder specialists, but that slowing the progression is over stating the drug's potential. I am not a doctor or a medical scientist so I will not weigh in on my thoughts on this debate. I do think that it is great that researchers are looking for ways to slow the progression significantly.

If you want more information about Azilect here are several websites that I found useful. Of course always discuss any medications with your doctor.

http://www.azilect.com/
http://www.drugs.com/azilect.html

10 Mountains 10 Years

So Parkinson's Disease or Alzheimer's Disease has touched your life in some way and possibly turned it upsidedown. Hundreds of questions race through your mind. Why me? What does this mean to my life or the life of a loved one? What can I do about it? I'm sure that these questions are asked by most people that deal with these types of diseases personally.

Here is the story of a group of people called 'The Regulars' (because they are regular people like you and me) who have launched a campaign to climb 10 Mountains in 10 Years. They are working to raise money and awareness for both Parkinson's Disease and Alzheimer's Disease.

The founder of the group, Enzo Simone, has been involved with several charities for numerous years. He started this particular quest because his mother has Alzheimer's and his father-in-law has Parkinson's. He is not willing to sit back and let these diseases win.

The group is now in its third year and they climbed their 3rd mountain in July, Mt. Hood in Oregon. These intrepid mountain climbers come from all walks of life. Some have mountain climbing experience, some don't. One member even has Young Onset PD.

Here is the video of their Mt. Hood expedition on YouTube. It's quite amazing what 'Regular' people can accomplish. http://www.youtube.com/watch?v=Shj5adqMKo8

To learn more about their story and their quest for a cure please take a look at the group's Myspace page- http://www.myspace.com/10mountains10years -or visit their blog- http://10mountains10years.blogspot.com. If you want to join them in their adventure please reach out through their MySpace page. I know all who wish to help conquer these diseases are welcome.


As Enzo would say, "World Up!"

How Do You Know you have Parkinson's Disease?

The most common question that people seem to ask is, "How do I know that I have Parkinson's Disease?" I'm going to try to answer that to the best of my ability.

First, there is no clinical test available to diagnosis PD. A true, definite diagnosis can only be confirmed by an autopsy. Rather than a clinical test doctors rely on the presence of several symptoms and ruling out other possible causes.

Generally the diagnosis is made on the presence of at least 2 of the following symptoms: Tremor, Muscle Rigidity, and Slow Movement (Bradykinesia). Several other tests (MRI, CT Scan, etc.) are sometimes conducted to rule out other possible causes. The diagnosis should be made by a neurologist, not a general practitioner, and it is often recommended that a second opinion be sought, preferably by a movement disorder specialist. Due to the lack of a definitive test there are a decent number of misdiagnoses.

Part of the diagnosis can also be to watch how the symptoms progress over time and also to see if the patient responds to Parkinson's medications.

If you think you may have PD, but are not sure, here are a couple of websites that might help you understand the disease and its symptoms in more detailed.

http://michaeljfox.org/living_aboutParkinsons_parkinsons101.cfm
http://www.wemove.org/par/par_dia.html
http://www.neurologychannel.com/parkinsonsdisease/symptoms.shtml


The best advice is probably to consult with a good specialist in your area.

Let's Hear it for Plastic!

Whoever thought that having plastic put in your brain could help your health??? Sounds completely ridiculous doesn't it? Even sounds kind of scary at first blush.

But... that is exactly what some researchers are working on in order to help Parkinson's patients and other disease sufferers too.

Here's the gist of what is going on in terms of Parkinson's Disease. Scientists already have neuronal implants that are currently used for Deep Brain Stimulation in some Parkinson's patients. What's Deep Brain Stimulation?? Essentially tiny electrodes are placed in the brain and hooked up to a "pacemaker" that then can stimulate the brain, in a regulated way, to release more dopamine. This procedure is generally done in an effort to minimize the symptoms in fairly advanced cases. I do not know any scientific studies about the exact effectiveness of this treatment (I'm sure they exist and I have not found them yet), but the anecdotal evidence I have read is quite amazing. People that have been quite incapacitated often seem to have a significant reduction in symptoms after this type of treatment. Since there is still no cure for PD no treatment works forever.

Now you're asking... "Exactly how the heck does plastic come into the picture?" And here's the answer... Researchers are creating polymers (strings of plastic molecules in this instance) that are infused with neurotrophins. What's a neurotrophin you ask? Neurotrophins are proteins that allow neurons to grow and survive. Think of them like food at a neuronal level. Researchers are coating the neuronal implants with these neurotrophin-infused polymers.

The idea is to have the polymers release the neurotrophins in a steady dose over time. The aim is to have the actual neurons grow and connect with the implants both because of the neurotrophins and because the plastic coatings on the implants provide a scaffold-like structure for the neurons to grow onto.

Because the plastic coatings encourage the neurons to grow into the implants they may allow for smaller implants to be developed and implanted. It may also make them more effective as the neurons interact with them more directly and possibly in a more complex way.

Researchers are working to have the implants release neurotrophins for up to 90 days after implantation in the brain. It takes approximately 3 months (90 days) for nerves in the body to heal after surgery so releasing the neurotrophins for 3 months may greatly improve the chances for the neurons to grow with the implants and make the implants more effective.

Now how cool is that? Who would ever think that plastic could be used in such an ingenious way?

For more information please see this article. http://www.physorg.com/news138526436.html

Pancakes for Parkinson's

Since I joined Team Fox (the volunteer fundraising arm of the Michael J. Fox Foundation) I have been amazed at what people can do to help find a cure. One of the fundraising efforts that has truly astounded me is Pancakes for Parkinson's. This fundraising group was started at the University of Virginia by an undergraduate student, Mary McNaught. Mary started this annual fundraiser because her Grandma suffers from Parkinson's. She wanted to do something to help find a cure and better treatments.

Since it's inception in 2004 the annual fundraiser has grown into a full fledge movement with an entire team working to raise money for this cause. Mary McNaught was even on the Rachael Ray show. How is that for some national publicity?

Pancakes for Parkinson's in now held annually at the University of Virginia. Please see their website for more details. http://www.pancakesforparkinsons.org/index.html

This year for the first time Pancakes branched out to other university- Harvard University in Cambridge, MA. Three students from Harvard held their first Pancakes for Parkinson's event on May 3, 2008 and raised over $5000! Here is their Team Fox page if you are interested in learning more about their efforts or in donating. http://www.teamfox.org/siteapps/personalpage/ShowPage.aspx?c=mqITL0PHJtH&b=3944179&sid=9qLGIXNHKhISK3PEIrH

Needless to say, I am astounded at the hard work of college students and their community spirit. I think it takes a special person to donate so much time to organize a fundraising event while still keeping up with your classes and studying.

Best of Luck to all of them and keep on serving those Pancakes!

Gene Therapy

There are always new treatments for Parkinson's being researched. One of the most intriguing approaches to me is gene therapy. The idea of gene therapy is to use a carrier molecule, called a vector, to insert a gene into a patient's targeted cells. This newly inserted gene then helps to create the functions that are needed in the patient's cells. For a good overview of gene therapy please visit the following website. http://www.ornl.gov/sci/techresources/Human_Genome/medicine/genetherapy.shtml#whatis

One biotechnology company, Neurologix Inc, has just been granted permission to begin a Phase II study of a gene therapy protocol to treat advanced Parkinson's Disease. Their approach is a non-dopamingeric approach to reestablishing motor function. Non-dopaminergic means that the company is not replacing dopamine in the patient's brain or working directly to increase the amount of dopamine available to the patient.

Neurologix's approach is to increase the amount of GABA (another neurotransmitter) in the patient's brain. GABA is generally known as an inhibitory neurotransmitter, meaning that it's affect in the brain is to reduce the amount that neurons fire. Dopamine loss in Parkinson's patients results in a reduced amount of GABA being released as it is dopamine in the affected area of the brain that triggers the release of GABA. The reduction in GABA in turn causes neurons to fire more frequently than normal as the inhibitory GABA is not as plentiful. The increase in neuronal firing causes motor coordination issues in Parkinson's patients. By increasing the amount of GABA in the brain directly the hope is to decrease the neuronal firing thereby decreasing the amount of motor issues. If this approach is successful it will mean that there will be another potential therapy for people with advanced Parkinson's who are no longer responding to dopamine replacement therapy.

Of course another positive to this study being successful will be gene therapy progressing to a point where it is effective in helping to treat such a complicated disease as Parkinson's.

To read more about this study please visit this website.
http://www.earthtimes.org/articles/show/neurologix-initiates-recruitment-for-phase-2-parkinsons-disease-trial,509688.shtml

Focus on a Cure Foundation for Parkinson's

The Focus on a Cure Foundation for Parkinson's (http://www.focusonacure.com/) is a charity with a mission- to cure Parkinson's Disease. I have met the Foundation's founders, Ann and Ken Glowienke, and am impressed with their hard work and determination. Ann was kind enough to allow me to interview her about the Foundation and its goals. Here is the interview.

Q: Why did you start Focus on a Cure?
A: After Ken was diagnosed at age 38 with Young Onset Parkinson’s disease, we were both very devastated and unsure what our future would hold. I immediately started researching what Parkinson’s was and what I could do to help Ken. I came across the Michael J. Fox Foundation. They were just about to launch their grass-roots fundraising opportunity called Team Fox, so I jumped at the chance to join. Shortly there after I started to organize our first event, and when all plans were set I finally shared it with Ken. He was surprised and very excited.

Q: What type of events does the Foundation hold?
A: We have held 3 main events. Our first 2 events were held at a neighborhood park district. Our first year we had about 35 family and friends attend. Our second year we had a little over a 100. This past May 2008 we held a “Picnic in the PARKinson’s” at the Morton Arboretum. We had over 360 people come from 5 surrounding states. We also hold Poinsettias for Parkinson’s around the holidays. We have a website that we communicate our current and upcoming events on. http://www.focusonacure.org/ We also have a mailing list as well as e-mail communication.

Q: How did you decide on the name Focus on a Cure?
A: After I told Ken about Team Fox, we decided to come up with a name. I came up with Keep your eye on a Cure. Ken has always loved eagles and they represent who he is and his vision in life. We decided that Focus on a Cure was the perfect name to describe our goals.

Q: How much have you raised to date to help find a cure for Parkinson's Disease?
A: To date we have raised over $40,000.

Q: How can anyone that is interested in assisting Focus on a Cure with its mission to cure Parkinson's Disease help?
A: Anyone interested in making a donation can mail it to:
Focus on a Cure
PO Box 933
Oswego, IL 60543
In the near future secure online donations will also be available. Anyone who is interested in volunteering can contacts us. (info@focusonacure.com)
Check our website for upcoming events, as we always have something in the works.

Q: What challenges have you faced in starting this foundation and in raising money and awareness for a cure?
A: The most difficult part of fundraising is getting the word out there and finding
sponsors. Since we started we have now become our own 501(c) (3) foundation, The Focus on a Cure Foundation for Parkinson’s. We felt this was the next step to help us achieve our goals and also allow corporate sponsors to get involved.

Q: What, if anything, have you learned from this experience?
A: This has truly been one of the greatest experiences of my life. I decided from day one that we were not going to sit back and let Parkinson’s take over our life. I knew we could make a difference in our lives and the lives of others. Starting the Focus on a Cure Foundation for Parkinson’s has given us the opportunity to raise awareness and funds for Parkinson’s disease. We will continue our efforts until the day they find a cure.

If you are interested in helping Ann and Ken Glowienke with the Focus on a Cure Foundation for Parkinson's please visit their website at http://www.focusonacure.com/. (They are currently building a new website http://www.focusonacure.org/ which will be online shortly.)

Parkinson's and Tai Chi

My Mom has been going to Tai Chi classes for the past 3 years or so. I have yet to read any truly definitive studies on whether tai chi helps Parkinson's patients or not, but I don't see how it could hurt. Since one of the goals in Tai Chi is to improve balance I see this exercise as a great way to help her (and others) maintain their balance as long as possible.

I know that my Mom's neurologist, a Parkinson's specialist at Columbia Presbyterian Hospital, believes the Tai Chi is helpful even if it is not proven.

Because of my Mom's experiences I have read lots of articles and blogs on the Internet about PD and how Tai Chi may help. One of the sites that I found most interesting is http://www.worldtaichiday.org/. The site is about Tai Chi and Qigong meditation in general, but this particular page is about Tai Chi and Parkinson's in particular. http://www.worldtaichiday.org/LIBRARYArticles/LIBRARYTaiChiPARKINSONS.html.

I recommend taking a look at this article. It has a lot of interesting information and links to other sites.

Read on and stay balanced!

Possible Diagnostic Tests?

There is no known way to definitively diagnose Parkinson's while the patient is living. Instead doctors must rely on observing the symptoms and progression of those symptoms. Finding a method to diagnose Parkinson's early would greatly help with developing a cure, better treatments and maybe even a way to slow or stop the disease early on.

I am fascinated by the numerous different approaches that researchers are taking to search for an early diagnostic tool. The methods range from brain scans, to genetic mutations, to assessing a person's sense of smell. I am hopeful that an early diagnostic tool will be found, if for no other reason than to help people with early symptoms know if they truly have Parkinson's or not. It took 10 years to diagnosis my mom properly and I think that is way too long.

One of the methods that has received a lot of press lately is using spectroscopy (http://wiki.answers.com/Q/What_is_the_basic_principle_of_ir_spectroscopy) as a way to analyze a patient's blood and look for a "chemical signature" or biomarkers for the disease. Here is one of the numerous articles I have read on this subject. http://www.upi.com/Health_News/2008/08/06/Test_for_Parkinsons_being_developed/UPI-28711218039021/

Another method that I find intriguing is to assess a person's sense of smell. Loss of smell is one of the symptoms of Parkinson's and it will be interesting to see if assessing this sense in people is a reliable method for detecting such a major disease. It seems that non-Parkinson's people can identify 35-40 smells correctly while Parkinson's patients can identify only 20 or less smells correctly. It would be amazing if assessing something so basic, and that we all take for granted, is the key to an early diagnosis. Here is a recent article on this topic.
http://www.news4jax.com/news/17107808/detail.html

One of my hopes is that by finding a tool for early diagnosis we can also develop methods to protect the brain and the remaining dopaminergic neurons so that the disease does not progress or at least progresses at a much slower rate.

Extraordinary People That Inspire Hope

I debated today about whether to blog about an article I came across online today in the New York Times. It is this amazing audio/video about 7 individuals living with Parkinson's Disease and what they are doing to offer hope for themselves and others. It does not discuss anything directly about a cure or about better treatments, but I thought it was inspirational.

All 7 of these people live each day with Parkinson's which can be physically, mentally and emotionally difficult. Each one of them has found a unique way to move forward and offer hope. I completely believe that your outlook is 80% of life and my hat is off to each of these people for what they are accomplishing and for so publically sharing their stories.

People like this inspire me to continue to fight for a cure each and every day!

Here is the link to the "article".
http://www.nytimes.com/interactive/2008/08/05/health/healthguide/TE_PARKINSONS.html#

How Do I Help Find a Cure?

Do you have Parkinson's Disease or does someone close to you have PD? Do you want to do more to help find a cure? Then this is the post for you!

My Mom has PD and broke her hip in a fall last September. I was finally tired of sitting on the sidelines so I decided to help find a cure by joining Team Fox, the volunteer fundraising arm of the Michael J. Fox Foundation for Parkinson's Disease. (http://www.michaeljfox.org/) Deciding to help fight back was one of the best decisions I ever made. I know that the cure is out there and we just have to find it. The people I have met through Team Fox have been amazing and are truly an inspiration.

For anyone else that is interested in helping to find a cure here are several resources that can help you on your way.

1. Team Fox- http://www.teamfox.org/- Join a team that is working to make a difference in the lives of people living today with Parkinson's.

2. Focus on a Cure- http://www.focusonacure.com/- This charity is run by Ann and Ken Glowienke and raises money to fund research and ultimately a cure.

3. Parkinson's Unity Walk- http://www.unitywalk.org/- This walk is held each year in April in Center Park in NYC. I attended last year and was amazed at the turn out.

4. American Parkinson Disease Association- http://www.apdaparkinson.org/- This organization helps to organize Walk-a-Thons all over the country. Visit the site to see if a walk-a-thon is scheduled near you or for help in starting your own.

5. Hope For a Cure- http://www.hopeforacure.org/- Visit this site to learn about ways Hope For a Cure is working to find a cure.

6. National Parkinson's Foundation- http://www.parkinson.org/- You can donate to the NPF to help fund research

7. Parkinson's Disease Foundation- http://www.pdf.org/- Another private foundation working to find a cure

You can also always work to raise awareness of this disease by talking about it and letting people know how difficult it can be to live with or watch someone you love with PD. The more people realize that this disease is not just a small inconvenience or only affects a few people the more we can do to help find a cure and stop people from suffering needlessly from Parkinson's.

Good luck whatever you chose!
Karen

PS- Please send me any other links to organizations that you believe are useful in our journey to a cure.

Cognitive Symptoms

Most of the discussion on Parkinson's deals with the motor symptoms. These symptoms are the easier to recognize and usually respond to dopamine agonists (replacements). There are, however, many cognitive symptoms as well. Some (but not all) of the cognitive symptoms are: memory loss, depression and dementia. These symptoms are not discussed as much, are definitely harder to research on the Internet and seem to be more poorly understood in general. Unfortuntately many of these symptoms do not respond to dopamine and need different intervention.

The research on the cognitive aspects seems much more limited to me and the research varies widely on the frequency of cognitive issues, their possible causes and their treatments. It is an area of the disease that truly needs more attention and research as these symptoms have direct effects on the quality of life for the PD patient and their families.

Here is one useful webpage that I ran across while researching this topic.

http://www.waparkinsons.org/edu_research/articles/Cognitive_Changes.html

Speech Therapy

I was at the Parkinson's Unity Walk (http://www.unitywalk.org/) with my parents back in April when a woman suddenly stopped my parents and began talking to them about Speech issues and Parkinson's. She was telling them about a type of speech therapy directed especially for Parkinson's. My Mom does not experience any major issues with her voice, but I found listening to this woman fascinating. I had no idea that someone had developed a special speech therapy program geared largely towards Parkinson's. The name of the therapy is the Lee Silverman Voice Treatment (LSVT) and the website is http://www.lsvt.org/.

The woman asked my Mom about her voice and she told her that she didn't have any problems. The woman asked what she had done for a profession and my Mom told her she was a teacher. The woman said, "And that's why you don't have problems. " It seems that teachers and actors often don't experience voice problems because they are used to projecting their voices.

I thought this was fascinating and could see how a treatment could be developed if certain professions didn't experience these issues. Obviously figuring out why would help others.

My family does not personally deal with voice difficulties (at least not yet), but I have talked to other families whose loved ones have lost their voices completely. I can't imagine how trapped someone must feel in their own bodies if they have no voice and especially if they have a tremor that limits their writing abilities.

Here again is the link to this special speech therapy http://www.lsvt.org/ and also a link to another informational site I found while researching this issue. http://www.fortunecity.com/meltingpot/farley/817/aspeech.html

Best of luck and keep on talking!

My First Post!

Welcome to my blog! The purpose of my blog is to help anyone that is directly or indirectly affected by Parkinson's Disease. My ultimate aim is to be a part of finding a cure and better treatments. I know the cure is out there. We just haven't managed to find it yet. I also hope that when we cure Parkinson's that cure will have a domino effect and other neurological diseases like Alzheimer's, ALS, MS and Huntington's Disease won't be far behind. I am confident that once one of these devastating illnesses is cured the mental block we collectively hold for neurological diseases will be broken.

My Mom has PD and has been fighting against it for about 16 years now. My Dad is the primary caregiver and I don't see her everyday, but that does not mean it does not affect me.

I am a member of Team Fox, the volunteer fundraising arm of The Michael J. Fox Foundation for Parkinson's Research. Please visit my Team Fox page to learn more about why I am passionate about finding a cure! A $6 donation would also help us all get closer to a cure!

http://www.teamfox.org/siteapps/personalpage/ShowPage.aspx?c=mqITL0PHJtH&b=3944179&sid=kkI4K9ORKlKXKdNMLoE