You gotta admit it s lots of fun freaking out the Normals

you may want to up your sinemet ?
because it can help - it helps me...

and that's the problem for me. The more sinemet I take, the worse it gets. I already take sinemet every two hours. As the day goes on my speech deteriorates. Is it any wonder we are completely confused about making treatment decisions? And it's nobody's fault but must it get better management and transparent, instead of a mafia.

When I have to much Sinemet in my system, usually by late afternoon, I too have difficulty talking. My voice is weak and it's not always easy to understand. But when my meds wears off in the evening (my last dose is usually around 4 in the afternoon) or when I wake up in the morning, unmedicated, I can talk almost normal. In my case Sinemet makes my talking worse. It does make my voice stronger at first, but it gets worse, as the Sinemet accumulates in my body, throughout the day. Wierd or what

A friend of mine, also with PD, just acquired an iPad2. She really has difficulty talking and writing now, but she can type OK. She had to purchased an App called "Pages", so it will display what she types in an easy to read format on her iPad. With the iPad and the App "Pages", she can type what she wants to say and it will display the words on the screen. Font size is adjustable. She emailed this the other day: "This is a response from my iPad. *I use it a lot and that's partly because it's so portable. A charge lasts me all day, and I plug it in at night... I use it is a social device. *I even play scrabble on it with a few people at my table after lunch and dinner."
Before, she was trying to communicate by writing, but her handwriting was illegible. She couldn't talk and this was very frustrating, but now with the iPad, she's able to communicate.
I'm not ready to try it for myself yet, hopefully no time soon.

EnJOY life always,
Max

National Association of the Deaf
http://www.nad.org/
A statement about making adjustments to keep the deaf living as full participants in our society:
https://www.orc-netsafe.com/knowledg...s-deafness.pdf
Also, watch the movie about “Children of a Lesser God”
Silos, standing side by side in a row beside a Prairie train-track. Different silos for different owners and different types of grain. But they never talk to each other. They do not share information; they are hardly aware of each others’ existence.
Silos, with Parkinson’s in one silo all by itself and deafness with difficulty communicating in another silo, and various types of mental disturbances each have their own silos.
We hear of a number of PWP who can’t talk. Would be great if someone could wander down the row of silos and make contact with those other people, deaf, hard of hearing and hard of speaking, and tell them who we are and what do they think we should know about for those of us who are silenced.
Ask them for help, actually.
And who knows, maybe PWP can be helpful to them too.
It would startle people if the two groups started working together in the areas of overlap where they have similar things to cope with.
I appreciate having an all-Parkinson's all-the-time org., but also, it can be valuable to spend some time on things that are different but the same.

i had so much fun with relatives...those in my generation have come back together at funerals of their parents. We are all in our 50s and 60s and naturally have ailments. Diabetes runs rampant and family get togethers are hard on diabletics so they just say what the heck.

Some have weight problems that could be harmful and what a battle that is.

But my stepmother is deaf and i am practically mute. we feel and look like we are handicapped and sound like it. She has deaf sounding language. When my girls were little the could imitate her perfectly. They would mimic her on the beach saying ,"now don't get too much sand in your bathing suits your pappy will get mad."

[as a side note, who ever made the rule that when you go swimming you aren't supposed to get sand in the car or the seats wet. Come on!!]

So my stepmother is beautiful, well dressed white hair and looks younger than 70. She can still pull it off socially, but can't hear beans unless you look straight at her and she can read lips. Well that only works sometimes with me. Most of the time my lips are in dystonia or whatever it is that i have in my lower face. in addition, when i go off now it's pretty bad. i have a seriously pronounced head bob and my right leg is essentially useless.

i may not be the first to die in my generation, but i am surely taking the longest and sufferiing the most. Speech is vital to a social situation. Adaptive and discreet devices should be available under medicare [some are] and we can learn from the deaf ed teachers - my brother used to teach at a deaf ed school.

Portable speech therapy device
Document Type and Number:
United States Patent 20030036041
Kind Code:
A1
Link to this page:
http://www.freepatentsonline.com/20030036041.html
Abstract:
A portable speech therapy device that enables postoperative cancer patients to practice voice exercises without direct supervision by activating a series of colored indicator lights in predetermined patterns associated with push-button actuation switches. The patient is initially taught to make a certain sound when an associated indicator light is turned on, and then allowed to practice with the device at home. The sequences associated with each actuation switch are made progressively more challenging as the patient masters the sequences associated with each switch (e.g., progressively shorter time periods allowed response, progressively greater number of prompts, or different patterns in which the colored indicators are turned on). The device is field programmable to allow the doctor to tailor sequences to correspond with a patient's recovery progress.


Speech therapy device providing direct visual feedback
Get related patents on CD

United States Patent 5169316
Link to this page http://www.wikipatents.com/5169316.html
Inventor(s) Lorman; Janis S. (1738 Gorge Pk Blvd., Stow, OH 44224); Jones; Cynthia L. (430 Silver Valley Blvd., Munroe Falls, OH 44262)
Abstract A speech therapy device for providing a means for the treatment of speech and swallowing problems and disorders comprising a sheet having first and second surfaces with a centrally-affixed means for providing direct visual feedback, as well as instructions, guidelines and indicia placed strategically therearound for practicing basic oral exercise drills. The preferred visual feedback means is a mirror, particularly one comprised of an acrylic material. The sheet may be either a single flat sheet or folio prepared from a folded single sheet or multiple sheets.

Laura [conductor 71] sent me this email and i find its very interesting . will research it more.

This is entirely anecdotal and one person's response...have you ever tried the patch? This guy wrote a piece for MJFF in 2009:

My condition has also responded positively to Azilect, a drug that can help block the breakdown of dopamine. And when my wife read about studies suggesting that cigarette smokers were less likely to develop Parkinson's, she insisted that I try wearing a nicotine patch. Two neurologists were skeptical but said it couldn't hurt.

I now slap on a 21-milligram nicotine patch every morning. It seems to lubricate my muscles and most notably it helps my voice. Good thing. Still, I can't type with my right hand, and for the first year and a half my voice recognition software -- which demands a clear strong speaking voice -- was befuddled by my dictation.

Nicotine improved my enunciation and dictation is now a breeze. So I've become a voice for more and better research. Please hurry.


-Jerry Tully of ABCNews .com on MJFF site

Scientific evidence:

Specifically, nicotine mimics acetylcholine, the Cinderella of neurotransmitters. Largely ignored over the years, acetylcholine has been catapulted into a starring role, linking the nervous and the immune systems. Through acetylcholine the nervous system controls the inflammatory fires that constantly crop up in our bodies. Receptors for acetylcholine reside not only on nerve cell endings but also on immune cells. Nicotine binds and activates these receptors, allowing cross talk between the brain and immune system.

"This is something quite phenomenal," comments Wouter de Jonge of the Academic Medical Center Amsterdam, who studies how macrophages respond to acetylcholine. "Smokers suffering from ulcerative colitis seemed to benefit from their habit, so there were hints that nicotine could ameliorate inflammatory diseases, but nobody could get a handle on it," he notes.

Now Ulloa's group may have provided an explanation for the positive effects that nicotine has on illnesses as diverse as schizophrenia, Alzheimer's, Parkinson's disease, Tourette's syndrome and ulcerative colitis. In laboratory experiments, Ulloa demonstrated that nicotine latches onto the nicotinic receptors on macrophages and stops them from spewing out inflammatory cytokines. This clampdown is brutally effective. The researchers also identified the specific receptor subtype, the alpha-7 acetylcholine receptor, that nicotine binds in macrophages to stop cytokine production.

But as a drug, nicotine is fraught with toxicity issues. Apart from its addictive nature, it can lead to cardiovascular problems and contribute to cancer. "No one is looking to use nicotine to treat inflammation," Ulloa says. "We want to design specific compounds that will target this receptor to take advantage of nicotine's anti-inflammatory effects whileeluding its collateral toxicity."



Scientific American 2006 (reprint)


acetycholine , cinderella-
interesting word play i must look it up.
this was years ago and he specifically asked for urgency with acetylcholine becoming a star. was it followed up? acetylchline has more receptors that the nocitinic- could this be why it has been assumed that pd benefits from acetycholine for dementia?

thanks laura!

paula said: yes i seriously thought about a DBS and it's been recommended for a long time


Don't you remember how garbled most people's voice gets who have had DBS??? They don't tell people that little tidbit very often. Remember how your voice sounded when you talked into the wind of a blowing fan? That's just starters of how DBS alters your voice. Oh, and balance often gets worse.

If you want to possibly sacrifice your voice (it doesn't always happen), then go for the DBS. There are many benefits in doing so. But my voice is all I've got - and I'm not ready to give it up just yet!

My voice is already PD soft at times off meds but more problematic is the rapid fire hypomanic speech from too many meds. I can actually get physical therapy to help with that but the garbled speech risk scares me. My handwriting is already unintelligible; I can't even read it. It looks like the invented writing of a preschooler or like I am using a Runic alphabet. I would be devastated to have my voice follow suit.

Where does a person turn next? We can't walk but can dance. We can't talk or write but maybe we can rap? Or we turn to morse code and semaphores...

Laura