Tag Archives: PD Plus

GREAT NEWS!!! – My New Diagnosis Is ESSENTIAL MYOCLONUS!!

Day by Day with a Movement Disorder Posted on by 11

I finally got to talk to a nurse on Dr. Watt’s staff today, and I now have an official diagnosis that I can take to insurance companies. I do not have Parkinson’s, nor anything in the Parkinson’s Family. I have what is called Essential Myoclonus. It is not a progressive disease, which is the best news of all.

They do not know what causes it, but the Primidone is doing a remarkable job of controlling my movements. So I look forward to continued improvement and taking my life back! I asked if it would be OK to add an extra half tablet in the mornings, because the dose wears off in the afternoons, particularly if I am more physically active or stressed. She gave me the usual precautions about not using it if I became overly drowsy, be careful about driving, etc., but they are leaving the timing and use of the half tablet up to me. I am to start it in the mornings and then move closer to lunch if I want to try it there after a week or so.

I have been telling everyone about how wonderful I have been feeling since I went on the Primidone and how truly blessed by God I feel. I have strong emotional ties to lots of online Parkie friends, and I would only wish that they could have such good news from their doctors very soon. I guess I’m going to have to add another section for research about Myoclonus to my sidebar now, and come up with a better name for this blog. I have been very active in the Parkinson’s PatientLikeMe forum, but I imagine I will be spending more time in the Essential Myoclonus section of WeMove.com now.

I lived in their world for almost three years, so I have a perspective into what it is like to have Parkinson’s that most people can never have, unless they actually have the disease or are very close to someone with it. That is a valuable perspective that I do not want to squander. I’m not sure how God can use me in regards to this, but I’m sure in His good time it will become apparent.

I have tried to chronicle my journey from the very first days of the initial diagnosis of Parkinson’s, through all the struggles I had with my digestive system fighting against the PD meds, to modifying my lifestyle to keep me safe, to the onset of tremors that soon turned into horrible shaking. I’ve tried to present an accurate picture of what was happening to me emotionally, as well as physically.

I am proud of this blog and hope that it will continue to be helpful to those who read it. May God use me and this blog to good purpose.

Have You Ever Heard of Parkinson’s PLUS??

Day by Day with a Movement Disorder Posted on by 6

One of my online Parkie buddies, Dan, has been diagnosed with Parkinson’s Plus. There are also several PWP I keep up with on the Patients Like Me site who also have PD Plus. If you know someone with Parkinson’s and the meds don’t seem to be helping, they might find some ideas about what else could be going on at Dan’s PD Plus Me blog. He has an extremely well written blog, with lots of great posts on many PD topics.

The post title will link you to the beginning of a series he plans on doing about each of the types of PD Plus. I’m looking forward to reading them all.

Get Help Paying for Prescriptions IF YOU DON’T HAVE INSURANCE!!

Day by Day with a Movement Disorder Posted on by  

One of my new Parkie friends that I have met on the PatientsLikeMe site is knoxgal. She posted an extensive set of links for places to go to get help paying for Parkinson’s meds, for those who do not have insurance. Some of these sites are for other than just PD meds, too. I asked permission to copy her post for any of you who either need this information yourself, or know someone who could make good use of it.

Bridge to Access:

Azilect:

GlaxoSmithKline

Needy Meds:

Partnership for Patience Assistance

Johnson & Johnson:

This is what knoxgal has to say:

Every site is different as to what meds they will cover. Most require the same thing and I am offering this info through trial and error. To get started you will need to contact them to get an application. Fill out the application and note the requirements needed. Number 1 — prescription. Number two–verification of income. Number three– a copy of W2 for the last year. Later, they have requested the last page of my filing with the IRS, showing your income and the amount of your refund etc.

Please note every site requires something different, such as your income, employment status etc. Once you have all of your forms filled out, and documents together, you need to get these to your doctor for him to sign them and he will get them into the provider for you.

I have found that they are really good about automatically sending you refills. You don’t even have to request them. You usually qualify for free meds or discounted meds for a year. After a year is up, you do need to reapply.

I hope this is helpful.

I should think there would be a lot of folks who would find this information helpful, and I want to thank knoxgal for allowing me to copy her post.

PS Just to give you an idea of what a neat site PatientsLikeMe is, here’s the public part of my information on the site, plus you can see what other patients have made public, as well. Right now, they are set up for patients with ALS and MS, as well.

A PD Plus Story You Should Read!

Day by Day with a Movement Disorder Posted on by 2

I want to thank Dan, of PdPlusMe, for writing a detailed post on his early symptoms and struggles with what was eventually diagnosed as PD Plus. If you, or anyone you know, has Parkinson symptoms which are not helped with Sinemet or other traditional PD meds, please get them to read his blog!!

pd plus me: Looking for those with Parkinson’s Plus and PD