possible B12 connection
 

wwally0,

You might look at the 'B-12 deficiency in PD' thread on this forum. B-12 deficiency can result in tingling in hands and feet
http://www.hsph.harvard.edu/nutritio...12-deficiency/

and is more common in PWP
http://www.ncbi.nlm.nih.gov/pubmed/22049200

There's also a peripheral neuropathy forum on Neurotalk with lots of useful information.

Jan

The idea of video neuro visits is a good one....
 

For those of us who take all day to get in any shape to go out into the crazy fast world. I dread doctors and dentists appointments and am especially unnerved when people want to come over to " visit" me, because bouncing off he floor and the walls or slumped down in a chair are not my idea of " being comfortable", so i would rather remain isolated. What really bugs me is when I am demanded to go to see someone else, and they have the preconception that I have my PD well under control, like I did years ago, and can just hop in the car and come over on a moments notice. I have a friend in town who actually gets mad at me for hiding out. Nobody gets it. We who are advanced are living on the edge, and within a few years will be up **** creek without a paddle. Sometimes I just fall out of my chair and find it difficult to get on my feet, other times I am so dyskinetic that I can't hold a glass of water without spilling it all over, and walk really weird. I get the occasional break, but only for a few hours a day, and must use this time to care for myself. It is a tough way to live, and I am getting tired. Of it! Cs

Btw,
 

I tried apomorphine shots years ago. Sure, it's a"quick rescue" but one gets pretty tired of shoving a needle in your belly. Just ask a badly affected diabetic! Amantadine helps a bit, but at 300 mg per day, my vision is so blurry that I often write blindly. If you are driven to distraction by shaking, try a muscle relaxant, or a benzo, you will have to up your dose over time, so it's six of one half dozen of the other. I take 4mg of klonopin per day, one mg in the morn, 1 at miday and 2mg at bedtime to help sleep. I have stopped swallowing at night and find my mouth is bone dry and I have trouble breathing which often wakes me up. Ya just can't win, all you can do is accept this fate and hope that it doesn't go on until you are warehoused.

Hi wwallyO
Thank you for sharing your videos.
I just wanted to mention something because of your extreme reaction to requip.
I also had a pretty strong sedating reaction to both requip and to mirapex, which you have been considering.
I know everyone has their own response but I just wanted to mention it so that you are careful if you do a trial of it.
Good luck with the dystonia- I hope you can solve the mystery.

thanks everyone - pd friendy mouse?
 

update http://youtu.be/_L-bq5FhSwY

pd friendly mouse?

http://www.infogrip.com/bigtrack-trackball.html

amazon.com in us better price

I want that mouse, no matter what Bill Gates says
 

[QUOTE=wwally0
pd friendly mouse?


Hello Wally Zero,
that mouse looks wicked cool, and I think I'll try it out. I have immense mouse problems, accidentally clicking my way all over the Internet; or when I really need to click, being unable to click at all. Parkinson's likes to amuse itself that way. The only time I drop a glass of water, is when I am very very thirsty. When I really need to type, that's when I can't type. It's sort of a sarcastic disease. I will like to see how it handles this big fat mouse.

Bill Gates hates me personally, even though I've never met the man. For example, on my computer, time runs backwards. No matter what software. Time runs backwards. I think Bill Gates had this one computer specially built just for me, and every time it crashes, bells ring and lights flash at Microsoft headquarters, as Bill Gates sits at his desk, laughing hysterically, planning the next crash of my computer. He personally trained my computer to be condescending towards me.
Let me assure you, I am not paranoid. I really am being followed by lobsters.

But I will try that new mouse Wally Zero found for us. Let's see how Bill Gates handles that, when he loses power over my clicking.

Thanks, Wally Zero.

[QUOTE=Bob Dawson;963732][QUOTE=wwally0
pd friendly mouse?
Hello Wally Zero,
that mouse looks wicked cool, and I think I'll try it out. I have immense mouse problems, accidentally clicking my way all over the Internet; or when I really need to click, being unable to click at all..... .[/QUOTE]

wwally0, I just noticed that your link to the Big Mouse also has a link to a YouTube about the guy behind it, who does not have Parkinson's, but has ALS. Is that what they used to call "Parkinson's Plus"? Lou Gehrig's Disease?
]
It is a moving video - click here:
http://youtu.be/11efRFiDvQA

“Virtual House Calls” for Parkinson Disease.
 

Another idea whose time has come!

“Virtual” Office Visits Save Travel and Time for People with Parkinson’s Disease

- Mar 13 2013 FROM THE PARKINSON’S DISEASE FOUNDATION

People living with Parkinson’s disease may benefit from a consultation with a specialist via online video conferencing from home, providing an alternative to traveling to an in-person appointment. These findings appear in a study funded in part by PDF and were published March 11 in JAMA Neurology.

People with Parkinson’s disease receive the best care with regular visits to a movement disorders specialist. But for those who live far from an academic medical center, such visits can involve significant travel time, expense and discomfort.

This study is one of the first to investigate whether “virtual house calls" to the homes of people with PD, also known as telemedicine, are feasible and beneficial. Investigators led by E. Ray Dorsey, M.D., M.B.A., at Johns Hopkins Medicine, recruited 20 participants who were receiving regular outpatient care for PD at either Johns Hopkins or the University of Rochester, New York. On average, participants were about 65 years old, and had moderately advanced PD; more than 70 percent were men, almost all were white, and all had experience using the Internet and email.

All participants visited a specialist in-person for an initial evaluation using standard assessments. Then, over the course of seven months, 11 participants returned to the doctor’s office for in-person visits and nine participants video conferenced using special computer software that ensured confidentiality.

Results
Overall, participants in both groups completed more than 90 percent of their scheduled visits.
None of the individuals in the video conference group had a situation that necessitated an in-person visit during the course of the study, for example a need for a blood test.

Participants in both groups spent about the same amount of time interacting with their doctors.
Researchers measured the benefit on participants’ quality of life and PD symptoms, and found the same results for participants, regardless of whether they saw a doctor in-person or via video conference.

Compared with in-person visits, each "virtual" visit saved participants, on average, 100 miles of travel and three hours of time.
On a follow-up questionnaire, participants reported that they liked the convenience of video conferencing but had concerns about the difficulty of establishing a personal bond with the physician.

What Does It Mean?
Although the number of participants was small, the results of this study provide encouragement that video conferencing with a specialist can provide similar benefits to people with PD as in-person visits, while reducing the time and expense of seeing the doctor. However, some aspects of PD, such as rigidity and difficulties with balance, cannot be assessed visually. In these cases, in-person visits with a specialist will continue to be an important piece of PD care.

Currently, only the minority of people living with PD are evaluated by movement disorders specialists who have years of training in Parkinson's and similar disorders. The rest are cared for by primary care providers, geriatricians and general neurologists (those who have not specialized in movement disorders, and rather see a wide range of patients). A previous study covered by PDF science news demonstrated that when people with PD seek the care of neurologists, this care may reduce their hospitalizations versus care from a primary care provider. Virtual office visits may be a realistic alternative for those who live far away from specialists, or alternatively, may complement regular visit to the local doctor or general neurologist.

Before virtual visits become a reality, as a next step, researchers must conduct studies with larger numbers of participants, and with participants of more varied socioeconomic backgrounds. In addition, issues surrounding technology and insurance reimbursement and rules in the United States that require doctors and the person being treated to be in the same state, will need to be resolved.

Are you interested in telemedicine? During next month's Merinoff Symposium in April, led by The Feinstein Institute for Medical Research in Manhasset, NY, PDF's Executive Director, Robin Anthony Elliott, will moderate a panel on the future of telemedicine and how it can help improve life with Parkinson's. PDF Research Advocates Jay and Marilyn Phillips will also present on the panel.

Learn About Symposium
Reference: Dorsey ER, Venkataraman V, Grana MJ, Bull MT, George BP, Boyd CM, Beck CA, Rajan B, Seidmann A, Biglan KM. Randomized Controlled Clinical Trial of “Virtual House Calls” for Parkinson Disease. JAMA Neurology doi:10.1001/jamaneurol.2013.123 http://dx.doi.org/10.1001/jamaneurol.2013.123.
http://www.pdf.org/en/science_news/r.../pr_1363182898

A few suggestions
 

I am so sorry to see your problem. I was going to suggest apomorphine also. They just put my dad on a drug called Selegiline that is supposed to help between the times the sinemet is working and not working. Just some ideas. I am new at this so if those are not viable options I apologize.
Worth looking into anyway. Clonazepam has been helping my dad also.
Good luck. I hope you find some relief soon.
Brain :hug:

Selegiline
 

The selegiline is supposed to increase the length of time the sinemet will continue to control symptoms and also stopping the effects of the carbo/Levo from wearing off between doses. It is also supposed to be helpful in decreasing the dose of carbo/Levo to control symptoms. I hope this is helpful to you.
Much love,
Brain