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Daily Journal with Mitochondrial Myopathy

Day by Day with a Movement Disorder

My Journey with a Mitochondrial Disease - "But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint." Isaiah 40:31 KJV

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Diagnosis in 2006 - Parkinson's Disease and Peripheral Neuropathy, then in 2007 - Essential Myoclonus. Finally in 2011, after a muscle biopsy, I was diagnosed with Mitochondrial Myopathy as well as Peripheral Neuropathy.

Share my journey - coping with the testing, the medicines, nutrition, digestion problems, exercise, the emotions, uncertain diagnoses and no telling what else!

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

Day by Day with a Movement Disorder Posted on August 19, 2007 by DBJune 6, 2019  

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.

Posted in Uncategorized | Tagged insurance, Parkies, Parkinson's, PatientsLikeMe, PD Plus, Prescription Assistance Programs, prescriptions, PWP | Leave a reply

Family HEALTH Blog Carnival – ENTER NOW

Day by Day with a Movement Disorder Posted on April 15, 2007 by DBAugust 15, 2017  

The THEME for this Quarter’s BLOG VILLAGE Carnival is

“All about HEALTH”

Are you a Care Giver? Do you have health problems you deal with on a regular basis? Just felt puny and blogged about it? Have the kids been sick? Maybe you blog about a more healthy life style, controversial issues like abortion, or the latest health news. Whether your post is to inform, vent, whine, poke fun, or whatever, if it has to do with Health, we’re looking forward to reading what you have to say!!

You can click either banner to ENTER. Feel free to copy for your blog!

.

DEADLINE April 26 midnight

Will be online on our BLOG VILLAGE News on April 30th.


RULES

Posted in Uncategorized | Tagged Blog Carnival, BLOG VILLAGE, Family Blog Carnival, Health | Leave a reply

102 Years – Quite a Lifetime!!

Day by Day with a Movement Disorder Posted on March 19, 2007 by DBMay 28, 2017 2

Those of you who have been so kind to send your hugs and prayers to us while we tend to Daddy might be interested in reading what I’ve posted on my Yesterday’s Memories blog today.

Posted in Uncategorized | Tagged 102 years old, care giving, Quality of Life, Yesterday's Memories | 2 Replies

Quick Post

Day by Day with a Movement Disorder Posted on March 9, 2007 by DBMarch 9, 2007 5

Thanks for those who have emailed or commented wanting to know if everything is OK. It’s not right now, so blogging is low in priorities. Will update when I can.

Posted in Uncategorized | Tagged Uncategorized | 5 Replies

Tremors Galore!!

Day by Day with a Movement Disorder Posted on February 22, 2007 by DBJune 4, 2020 10

Don’t let anyone give you the impression that everyone who has Parkinson’s reacts the same way to the loss of dopamine in the brain. I’m one of those whose main symptom is Bradykinesia, which means without medicine I can barely get my legs to move at all. My upper body movements are slower and less coordinated, but my lower body simply has no clue what my brain is telling it to do. This effects my walking, balance, and my digestive system muscles. Something as simple as standing through the verses of a song in church can be very difficult for me to do. I’m also having lots of problems sleeping, no matter how tired I am.

Unlike the stereotypical image of a PWP, I have not had tremors. Well, I can’t say that any more. Yesterday evening I noticed a rhythmic series of what felt like shivers to me, but I wasn’t cold. I thought it was nerves, as things have been quite stressful around here lately. But when I tried to go to sleep last night, those shivers turned into full blown tremors. Not only my legs, but for awhile there, my whole body was uncontrollably shaking. These are called resting tremors, as they immediately stopped when I raised both legs. As soon as I put my legs back down – they would start up again. Yep, that’s Parkinson’s tremors, alright. Something else to talk to the Neurologist about next week.

I have decided not to add the Requip to the Zelepar, since the doctor’s appointment is so close, but if I do the shake, rattle, roll thing again tonight, I may change my mind. Just as a point of information that I find extremely odd, PWP don’t have tremors in their sleep!! Weird, isn’t it??

Posted in Uncategorized | Tagged balance, Bradykenisia, coordination, difficulty walking, elimination difficulties, gait, insomnia, Parkies, Parkinson's, PWP, Quality of Life, Requip, stomach, Zelepar | 10 Replies

What a Difference the Right Equipment Makes!!

Day by Day with a Movement Disorder Posted on February 1, 2007 by DBMay 21, 2018 7

This morning was my first chance to take care of Daddy from a hospital bed that worked properly. It made quite a difference, although I still had problems getting him to follow my directions. I was able to change him out of the night Depends, clean him up, and get fresh ones on, put on socks, pants part way, and shoes, before I ever let the bed down for him to sit up. That is a BIG help. He rolled away from me, following my directions perfectly, but when it came time to roll toward me, he kept trying to climb over the rail!! DH heard me struggling to get his legs back in, and came and helped me get him on his side, so I could finish the Depends. Next time, I’ll put his trousers on around his ankles first, so it will kind of “hog tie” him. LOL

Having the right equipment does make all the difference in the world when care giving. I’ve been very concerned about Ruth and Mick, after seeing the terrible bruises he gets from a wheelchair that doesn’t fit his needs properly. I wrote The Voltage Gate and A Hearty Life, thinking that they might have some scientist friends who could help her adapt the wheelchair better. If you know anyone who might be able to help her, I sure would appreciate you sending them the link to her post.

Anyway, we continue to take one day at a time, even one hour at a time, with Daddy, just trying to keep him as comfortable and as mobile as we possibly can.

Posted in Uncategorized | Tagged care giving, Depends, family, Hospice, hospital bed, pain, Quality of Life, support, wheelchair | 7 Replies

Gee – I’m Now a “Hero in Parkinson’s Disease”

Day by Day with a Movement Disorder Posted on January 24, 2007 by DBMay 25, 2017  

One of the blogs I have found useful to read from time to time is My Parkinson’s Info. It is an informational site, but they also ask PWP to answer interview questions. Matt was kind enough to ask me to tell about what it was like being a caregiver with Parkinson’s Disease.

So I now have an Interview on My Parkinson’s Info!

Posted in Uncategorized | Tagged care giving, cure for Parkinson's Disease, interview, Parkinson's, PWP | Leave a reply

BLOG VILLAGE Goes Gonzo! Family Blog Carnival

Day by Day with a Movement Disorder Posted on January 16, 2007 by DBOctober 7, 2019 4


I’m entering our BLOG VILLAGE Family Blog Carnival with a post from my blog, Yesterday’s Memories. I have a pretty good idea which one I’m going to submit, but I’m open to suggestions, if you see a post you think would be a good one.

Any blog that LINKS TO this blog can enter, too!

The THEME is “A post about Family”.

Carnival entries may be submitted NOW. The DEADLINE for entries is Thursday, Jan. 25th, at 11:59PM EST.

Here are the RULES for our FAMILY BLOG CARNIVAL:

Blog MUST belong EITHER to a BLOG VILLAGE member OR link directly TO a BLOG VILLAGE Blog.

Only 1 entry per blogger.

Only English language posts will be accepted.

No posts with titles, or with pictures, containing profanity, or of a sexual or suggestive nature, will be accepted.

HOW TO SUBMIT AN ENTRY:

1. Pick out a post that you feel is about FAMILY. That should provide you with a lot of flexibility.

2. Send the URL for that post, along with the post’s title, to:

[email protected]

If you are entering as a blogger who links TO a Villager —

Please note: if you are linked to more than one Blog Village member, please indicate with which blog you want to be grouped in the Carnival.

I’d love to see this Carnival have a lot of participants, so how about taking a look at your blog to see if YOU have a good post to enter. All you need to do is either be a member of BLOG VILLAGE (Apply Here) OR Link to any BLOG VILLAGE blog. Then, be sure to follow the rules and submit your post before the Jan. 25th deadline.

I look forward to reading your post!!

Posted in Uncategorized | Tagged Blog Carnival, BLOG VILLAGE, Family Blog Carnival, Yesterday's Memories | 4 Replies

Under Construction – We’re Moving!

Day by Day with a Movement Disorder Posted on November 12, 2006 by DBNovember 20, 2016  

Sorry for the plain look right now, but I’m in the process of changing Day by Day over to our dirtybutter domain from the beta blogger blogspot domain. I had to revert to their simplest template to do that, so please bare with me for awhile. I’ll get the links and banners on as quickly as I can.

The new Url for Day by Day is

http://parkinsons.dirtybutter.com/blog/ .

Posted in Uncategorized | Tagged Uncategorized | Leave a reply

Michael J. Fox Ad Controversy Makes Me Mad

Day by Day with a Movement Disorder Posted on October 27, 2006 by DBNovember 14, 2018 8

We didn’t watch the World Series, but we did hear about the stink Rush Limbaugh caused when he accused Michael J. Fox of faking his tremors in a political ad he did, endorsing a candidate who is pro embryonic stem cell research.

YouTube – Michael J. Fox political ad

Fox News Story about Limbaugh’s accusation

Michael’s Response to Limbaugh

Limbaugh later apologized, but, IMVHO, that’s just not enough to put out the fire that he started.

Fox developed Parkinson’s at a young age, and he has a particularly aggressive form of it, as well. He’s already had surgery, and you can be sure that he’s under the care of the finest doctors available. Still, his condition continues to worsen.

For any public figure to go on record casting doubt over the reality of the severity of his condition is a disservice to all those who suffer from PD, or from any disability, for that matter. And to think he mocked Michael and imitated the way he was moving … why that’s just intolerable!

We all have our good days and bad days. Just because I’ve been walking just fine, doesn’t mean I won’t need the cane to take the very next step. That’s just the way Parkinson’s works. I’m just newly diagnosed, and this situation made me very angry. I can only begin to imagine how someone whose tremors are disabling must feel, reading about all this. I think I would be outraged.

One writer suggested that Limbaugh should make a huge donation to the Fox Foundation, if he really wants anyone to believe his apology is genuine. At least that way, he’ll do some good and, maybe, somewhat balance the harm he’s done.

Posted in Uncategorized | Tagged fake tremors, Michael J. Fox, Parkinson's, political ad, Rush Limbaugh | 8 Replies

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Radial Neuropathy Resources

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