[Fiona]

I think part of the reason for the drop in energy is the realization or a feeling over the past year or so that things really are not moving forward in PD research, that any new drugs they come up with are pretty much the same old thing, that any real "cures" are so far away in terms of going through clinical trials and being approved that it seems like they'll be barely relevant for many of us. Especially after the Amgen nonsense - horribly disappointing and dis-spiriting, and barely publicized at all by so many PD organizations - how then are we supposed to take seriously races for the cure when the cure (or a possible cure maybe at least) was stopped and they refuse to let anybody else take it any further. It seems like the powers that be really are not that interested in curing. Plus revelations about top neurologists holding quiet little patents on anything promising, and quietly being paid to skew scientific data in ways that are firmly against our interests...the allopathic model has received some major battering in the revelation of corruption and financial interest that seriously challenges the trust many might have in evidentiary findings.

It's wearying, and plus the recognition that we are really on our own, that very few actual scientists are really serious about trying to help without a huge lucrative patent in it for them certainly zaps my energy. It's a weird moment in history, and many paradigms are poised to undergo major shifts and upheavals....so many things have to change fundamentally - in the US the health care system overall, the world's approach to the environment - there are many major battles immanent and essential right now.

I'm still working on finding new solutions and think I still have some ideas about what to pursue. However, I don't want to say too much until I have more solid info about anything that might be helpful. The things that worry me are that the things we do find at this point are gonna be well outside the mainstream, making it difficult to encourage many people to try them. Also we may find something truly helpful, but only for those newly diagnosed who don't have years of their bodies being compromised by the existing treatments.

I, however, have not given up, and will continue to experiment and search for things that can help and will report them in one way or another if they seem significant. Squeak, I say, squeak.

[paula_w]

i've been working on this video for 23andme for so long the discount is going to be over before i get it up. it has taken a tremendous amount of time and there isn't very much to it either! of course i keep changing it.

peg and i went to BIO last week in Atlanta. we barely made it there. what a pair we make; we are so similar in our symptoms. We stagger around like to drunkards, and people stare at us. my voice volume is gone as is much of my ability to speak clearly. peg loses her balance and falls backward. we were representing pdtrials.org so that includes all the orgs. we decided to just show it like it is. This wasn't a parkinson conference, BIO includes enviromental as well, but much of it is business oriented.

we attracted attention and were interviewed by independent producers for BIO videos that will appear on their site in a few months. They had to put a mic on me for volume but he asked all the right questions and i got to say quite a bit. i don't know if it will be used. i' m the person with pd that no one wants to see. And i don't like to be seen either.

my daughter went, and learned a lot. She had a great time and finally realizes that all the things i talk about online are serious and true. i loved having her there.

i haven't been checking the forum because i get so immersed in my idea for the day on the video and shut out the world. but i'll be back.

peg and i are pretty pathetic, so we just laugh.

an interesting thing [for me ten yrs ago i would have felt exciterment] happened at the airport when i returned to Orlando. i was getting on the monorail and noticed a bunch of athletes, many with pretty girls. i vaguely wondered if it was the Orlando Magic, our NBA basketball team. i hobbled around them, and went up to the front. Some of them were in the car with me, and it was storming. Talk about opposites - strong, tall, athletes and a frail, older lady. i said i had never seen it so bad at the airport - thelanding almost caused a fear emotion in me and they couldn't bring our luggage in because of lightning. of course none of them answered me, but they probably couldn't hear me or understand me anyway.

when we got off the monorail, there was no one getting on. they were all roped off. i said to the girl walking by me, who was with one of the athletes, "why are they doing that? i've never seen that before." she said, 'So we could get by first. otherwise it gets chaotic." That's when i realized they were the Magic. On the way home, my husband told me they were in the play offs and were returning from winning a game. haha it's all sbout where you are - mentally and physically.

i will be glad when i am finished. i miss the personal touch too.
paula

[lurkingforacure]

So true, Fiona, so sad, but so true. You articulated how I have been feeling lately so well. I have been daily researching this disease for only 3 years, so small compared to so many of you here, and lately am becoming depressed at the lack of progress. The PD research and "progress" this last year seemed especially pathetic. So much so, that I worry that people will stop donating for research, after all, why bother if an increasing amount of research is being conducted by conflict-of-interest scientists, or focusing on drugs we already have, etc. All that money, and all we really have to show for it is....well, who here is on anything new that has profoundly helped them?

I have been doing a lot of reading on autism, I realize it's a different disease and perhaps a completely different pathology, but I find it very interesting that like PD, autistic folks differ vastly in their presentation, symptoms, and response to meds, diet, and therapies. Perhaps the same can be said for most diseases...but also, autistic folk get much worse when stressed, just like PD. Again, perhaps this can be said for many diseases, but it's another commonality.

Further, autistic folk have underlying medical conditions that, when they are resolved, the autism typically improves, sometimes completely. The underlying conditions are things like constipation, recurrent ear aches/infections, reflux, allergies, not sleeping well, etc. Sound familiar? I was shocked to learn just today that 80 percent of the immune system is involved with the gastrointestinal tract (from Healing and Preventing Autism by Jenny McCarthy and Dr. Kartzinel). I had no idea these two systems were that connected! This hints at so much that I need to think about it some more to consider the implications and how we can use that to our advantage in dealing with PD.

Does anyone ever feel that even though they eat as well as they can, salad, fresh fruits, lean meat, etc., that they aren't getting the nutrition they need?That something is missing, but dont' know what it is? Curious. This to me hints that malabsorption may be at play in PD, as it is in autism. (also well-funded and heavily researched, but no cure....)

I think summer is harder too because it seems research slows down and things don't move like they do during the school year. But I do think many of the things I have read about here are promising, some as much as what is coming out of research projects, and if they help some with PD, that' great. Thank heavens we have places like this forum where our collective experience, successful and otherwise, can be shared. I'm very grateful to everyone for contributing what they can, when they can. Love the rat!

[rose of his heart]

Originally Posted by reverett123

It has been clear that our little community has been slipping away...

Looking at other PD online communities, I have found nothing that approaches it. Most are made up of sick people waiting for a man in a white coat to save them with a pill that never comes - sort of the Godot Pharmaceutical Corporation. That's not for me so long as there is something else to be attempted. I know that even that may change with time, but not yet.

As a newly dx serious thinker AND serious feeler (it's not either or), I appreciate this site and other PD online communities as visited and then condescendingly described above by Rick. (I am disappointed after months of reading what seemed like your fairly enlightened postings.)

If you and others on this site are able to muster the courage, energy, money, time, research and decision-making skills to avoid pharmaceuticals, you should count yourself blessed, not mock the rest of us.

As someone who has posted about Requip XL, here is the rest of my medication schedule, which might surprise you:

Vitaline's 1200 mg CoQ10
Neuroscience's Balance D with Fava Extract (w/ NAC)
K-PAX Immune Support Formula (w/ ALA, NAC, ALC and other neuro-yummies)
Natural Calm Magnesium (for muscle relaxation)

I am also doing preliminary research on mucuna pruriens, grapeseed extract and creatine. The Requip XL was not an easy or blind decision; I am hopeful that it will be just a stop-gap measure giving me a much needed boost while navigating this New Reality with 2 small boys in tow.

Where were all of you 3 months after dx?

BTW, one of the reasons your readership is dwindling may be that folks on other sites actually notice and take an interest in where we're at (educationally, medically and emotionally). This site sometimes comes across like a clique; though that doesn't deter me as I make my way, it may deter some.

Clearly this site has served its long-term members well and has likely inpired other online PD communities....both of which I celebrate. It also has helped me as I did my research months before my dx. Thank you for considering my two cents,

[paula_w]

Wait a minute....

I could easily take both sides here. So what else is new..lol. I have taken the first break from this board in years and it wasn't because there is anything wrong with the board...it's because i got myself in over my head on a project and am severely ill to be doing it. Talk about why i don't work! good grief my decision making skills are a mess. i get something down and

then i see something that i like better - it's j ust a power pt - you'd think it was a major epic. MJFF is emphasizing dyskinesia and cognition - mike has had it for 20 yrs also it's easy to understand the priorities.

it almost killed me to go to BIO. it confirmed for me that it just wasn't my hard of hearing relatives and friends that can't heare. no one can. i tripped over everything, including walking right into my purse straps and pitching forward onto the bed in the hotel room.

if we seem like a clique it's because we've been around- i was here in 98. it's also a "clique i am part of with great suffering. i'm on tons of pharmaceuticals.

i take patient advocacy very seriously and have been responsible for some changes. it works.

some of us are very ill. i got on an escalator, going down, at the airport, tugging my bag on wheels behind me and realized i was in immediate danger and just can't do that anymore. if i hadn't had my walking stick to firmly put on the step in front of me, i think i would have fallen down that escalator.

i posted at the same time as Fiona, but certainly know where she is cooming from.

Don't write this board off yet. damnit.
paula

[reverett123]

[QUOTE=rose of his heart;514864]As a newly dx serious thinker AND serious feeler (it's not either or), I appreciate this site and other PD online communities as visited and then condescendingly described above by Rick. (I am disappointed after months of reading what seemed like your fairly enlightened postings.)

If you and others on this site are able to muster the courage, energy, money, time, research and decision-making skills to avoid pharmaceuticals, you should count yourself blessed, not mock the rest of us...>>

Mockery was never my intent. Sadness, perhaps. It is simply the truth. The PD community actually takes in two diseases. Senior Onset is a disease of aging and often is one of several afflictions. These folks are old, sick, and trust too much. And they are the majority. Young Onset is something different but we don't know what. But we are lumped in with the others and are in the minority. For the most part the folks here are in the latter group at least in spirit. But ROHH, we are not a ciique, we're refugees I'm sorry, but you are going to fit right in if you choose to stay. Forgive me, but I feel old and crabby today and I'm really not either one.

[aj04]

There have been many incarnations of NeuroTalk/Braintalk and many generations of participants. I imagine we each have our idea of which were the halcyon days, but everything changes. Unfortunately, most of us have Parkinson's disease and, unfortunately, there has been no advance sufficient to slow, stop, or reverse our decline so that people--friends, confidants, enemies, comrades--continue to decline and at some point don't have the energy or physical capabilities to participate. Also, at different stages of the disease, one is looking for different kinds of of interaction, like getting involved off line.

Oh, for crying out loud!

OK, I stand by what I wrote above, but reading the responses on the second page of this thread made me actually mad--which is good. I got mad at most every close friend I have made from this forum, or its predecessor(s) at one time or another.

People change. People with PD change a lot. People with PD change for the worse physically, but frequently for the better in non-physical ways (mental, psychological, spiritual--how come there isn't an all-encompassing opposite of physical like matter and antimatter? Or am I just missing it?). This forum reflects all these things. It is a reflection of the variety of experience, interest, tolerance, identification, comfort and insensitivity (and all their opposites) people bring to it. And it is a place to find out and share information, information that is hard to cull from the mass of words out there.

Discussion is the key, whether you agree or you disagree, whether it is scientific or not. This forum iis a barometer of the community at large (for ourselves and any of our supporters who care to pay attention) and it is invaluable. It is invaluable for its downs as well as its ups--so long as we keep communicating.

So thanks for bringing this topic up. These changes in the forum have always been fraught with pain, disappointment, and anger, but change is like that. We have a lot to ***** about that is valid, and that belongs here just as much as the companionship, information, and challenges.

This likely sounds rather hypocritical from someone who is still is a junior member of the forum, but if I may refer to the "clique" or a "clique," my "aj" moniker should be familiar. That's my street cred. And I miss all you oldtimers (I can't believe we are now the oldtimers!).

And, as an aside, Paula, you and Peg (expletive delete) amaze me! Careening through the airport like that. Haven't you ever heard of wheelchairs? Especially with the amount of luggage you pack! Ooops, maybe that is too OT even for NeuroTalk.

[rose of his heart]

Originally Posted by Fiona

I'm still working on finding new solutions and think I still have some ideas about what to pursue. However, I don't want to say too much until I have more solid info about anything that might be helpful. The things that worry me are that the things we do find at this point are gonna be well outside the mainstream, making it difficult to encourage many people to try them.

't

I, for one, eagerly await fresh solutions. I don't care one iota whether they are in or outside the mainstream. Go for it!

[Chicory]

I agree with Lindy "...... It is great to have a place that is a source of PD related info, but my habit of returning here was fed by the personal touch, and the feeling of communicating with real people who shared the same issues and triumphs over adversity!"

It is the personal touch of people sharing that makes it feel like a community, and it is nice to have a community of people who understand what it is like to live with Parkinson's. Some of us cannot participate in a live Parkinson's support group- either there is not one nearby or the time of the meetings doesn't work for us.

[vlhperry]

Is a big factor. Rose, 3 months after my diagnosis, I had 3 boys in tow who have lived into their thirties never knowing what their mother was like without PD.

Paula, congratulations on setting your priortities where you felt you were personnaly called to help. You and Jackie Hunt Christianson are so much alike.

I have always placed my children above all, including PD, and have no regrets. My oldest is a truck driver, over the road, nationally. He had a tough time growing up as he had brain dysfunction. In his toddler years, I was told he had auditory processing problems, now as an adult, he has been rediagnosed as having asbergers syndrome. He was my difficult child, now he is my most dependable.

Fred, my middle child, has the most calm and pleasant disposition. I remember picking him up from daycare, when his Dad was out of town. He was at the bottom the the split entry doorway when I arrived with an exceeding angry look on his face. I went up the stairs and the daycare provider gave me a song and dance about how unacceptable his behaivor had been that day. I went downstairs, got on my knees, threw my arms around him and asked him it he was having a bad day. He started crying and I tenderly led him to the car. I have never seen a scowl on his face since.

My youngest was lucky to survive to adulthood. He was a teaser, a pain in the tush, did everything you told him not to do, never left his brothers alone, etc. Today he is a college professor, writes textbooks, and is the father of my only two grandchildren, with a grandaughter due in September.

I worked for the first five years of my illness, full time librarian for a law firm, then as a temp, then bussing tables, then Target, finally for a vet cleaning animal cages.

I have been through the pain of loosing my licience to drive, a failed marriage, and several neurologists. I seem to be going into a downward spin now. My second husband of 20 years has told me I am killing him. I am compulsive, obsessive, fall constantly, but still get up and keep on ticking.

I am in a position of making a spiritual choice of finding a eldercare facility to live separate from my husband. I still exercise, try to eat a moderately balanced meal and still play music. I love my adult bible study class.

In the years I have had PD, I have learned to accept and do what I can and not waste time wondering what could have been. My life is full and I have done my part in adding to the population. My life has been about as average as any healthy person's life which is fine by me.

Boring you? Probably. But boring isn't so bad. Espiecially when you are waiting in the lobby of the Gillette childrens hospital for your doctor appointment and watch the steady stream of older parents wheeling their children in and out to their appointments. Now their would be some interesting stories!!!