Tuesday, January 3, 2012

PD Drugs (brand name vs generics) and PD vs Weather

The other day one of Mario's Twitter friends asked him if the change in weather bothered my Parkinson's Disease.    I then did some research both thru "The Parkinson's Disease Treatment Book" by J. Eric Ahlskog, M.D. Mayo Clinic Parkinson Specialist, and thru http://www.parkinson.org/.   I could not find any reference to weather playing a role in Parkinson's Disease.  It doesn't seem to affect me either - but read on......

However, i do have arthritis in many of my joints and spine.   I can tell you without a doubt that weather does impact my arthritis.   The past couple of mornings I have awaken to a very sore, stiff body and it has been difficult to get moving.   So, thank heavens for the Tramadol and Tylenol combination my family doctor prescribed.   

While doing the research on Weather/Parkinson's, I happened on an article published in http://www.parkinson.org/.  In an article (half way down the page on the left hand side) - click on:
  • Generic vs. Branded Drugs for Parkinson’s Disease
The following paragraphs were copied from that article:

"Currently, there are multiple pharmaceutical companies that manufacture a generic formulation of carbidopa/levodopa, dopamine agonists, monoamine oxidase inhibitors and anticholinergics. If you have Parkinson’s, are taking brand name medication and then are offered a generic substitution for one of your Parkinson’s medications, you should know that the FDA requires that generic drugs must show an “essential similarity” to the branded drug prior to market approval, but that in some cases, this standard is not high enough. A review supported by NPF chronicles compelling evidence that if you are in more advanced stages of the disease, switching from branded drugs to generic, or from one generic to another, may have adverse effects. The authors, including NPF National Medical Director Dr. Michael S. Okun, believe that the standards for approving generic drugs for Parkinson's may not be strict enough to demonstrate that the generic alternatives are equally effective."

"Work with your physician to develop a tailored treatment plan. Using generic drugs may provide a cost savings, but they may not be appropriate for you, especially if you already tolerate the branded drug.
If you make the switch, be sure to follow these tips:
  • Report to your physician how effective the drug is
  • Carefully keep a diary of any side effects
  • Record dose adjustments that your physicians make (higher or lower)
  • In general, try to stay with a single drug manufacturer for your generic medications (You may need to ask your pharmacist to special order for you)
When attempts to tailor drug therapy with a generic drug have been unsuccessful, have your doctor appeal to the insurance company for a branded drug. It is important to include meticulous details of the various adverse side effects with the generic medication in your appeal letter."

So this article supports the problems I experienced when the doctor switched me from the Brand name Mirapex to the generic one.  My system couldn't tolerate it and it wasn't my imagination.   Many of my readers also confirmed they many times they have had problems with generics.  This is not to say that generics are bad.  They are not, but if they don't work for you, then they don't work for you.  Tell your doctor.   This may be why I had problems with the generic levodopa/carbidopa drug that the doctor tried me on, which was also a generic.   I will be talking to him about that and am printing off a copy of this article to take with me.

In my opinion, doctor's are beginning to prescribe more and more generics because

1.  It does save the patient money. but, more importantly......
2.  The Insurance Companies prefer the use of generics to save money.  If a brand name is prescribed, the doctor has to jump through hoops to request the brand name.  They are already over booked with patients and just don't have time for the added paper work.   Strictly my opinion, not based on fact but seems to be what happens in my case.  

Thanks for reading about this subject again.  But I had to document what I found to back up my comments on the problems I was having.  


Sunday, January 1, 2012

Happy New Year 2012

Dear Friends,

WOW - another year over - where did it go.  When I retired 4 years ago, I wondered what I'd do with the rest of my life!!   I'm still wondering, but here I am just shuffling along each day.

When I started this blog in September, I had no idea what direction it would take.  ha ha - I still have no sense of direction, but am shuffling along with this too.  I do know that you, dear readers, are the ones who keep me going.   

I am so very thankful for each of you.

....You put up with me when I'm down.
....You provide encouraging words that pick me up again.
....You sympathize with me when I need it.
....You provide helpful, useful information in your comments and on Twitter.
....Your support is SO VERY APPRECIATED!

Thanks for "hanging" in there with me.

We celebrated New Year's Eve in typical fashion by going to a movie - "I Just Bought A Zoo" with friends, which is very good and worth seeing.  Then out for a sandwich, and home by 7:30 p.m.  Woohoo!    The New year's Eve pawty at  #nipclub on Twitter was great fun but I had to call it a night at 10:30.   I can remember when we were in our 30's we'd stay up all night and top the night off with breakfast.   Guess we've really slowed down over the years.  

Then of course today is FOOTBALL - GO PACKERS - GO BADGERS!!   It will be a happy day in Wisconsin if they both win!   Most of my friends in town know I don't especially care for football, but even I get excited when our state goes to the Rose Bowl and the Green Bay Packers might just get to the Super Bowl again this year.   My fingers are crossed, and Mario's paws are crossed.  We're hoping for a win-win for both.   

Our New Year wish for all of you is that you ...

...find a job if you are looking for one (so many are these days),
...have good health in 2012 - if you have good health, you have all the richness of life
...have enough $$ to keep you in food and shelter 
...have a warm roof over your head
...find happiness from within
...find a reason to laugh daily- for laughter is the best medicine of all and no side-effects except maybe a sore side!   (get it - splitting your sides from laughter!)

Happy New Year and love to each and every one of you.


Saturday, December 24, 2011

Visit With Neurologist - Merry Christmas

Dear Friends,

Wish I could say I have some good news after visiting with the neurologist yesterday, but I don't.   I clearly believe he doesn't know what to do with me.   I did catch him on a day where he had 10 patients waiting in the same waiting room to see him.   Maybe it was a bad day for him.  Usually he takes whatever time you need, but not yesterday.

I am more shaky again.   He wants to add another drug to my cocktail.  Sorry I can't give you the name because he's having it called in to our mail order pharmacy so I can get a 3-month supply.  (Hope it works)!   If i would have been thinking clearly when I saw him, I would have had him phone to a local pharmacy to try for a month, but as usual, I wasn't comprehending fast enough to keep up with him.

He did make the comment tho that if this didn't work, he'd put me back on the Levodopa/Carbidopa combination again.  He asked me what ever happened to various drugs that he had prescribed, and was I taking them.   No, I'm not taking them because they were doing strange things to me - a combination of being dizzy, losing my balance rapidly, and/or making me sick to my stomach and throwing up. Each time I stopped a drug it was because I called his office, told them the side effects being experienced, and he said to stop the drugs, thru the nurse I was talking to.   I would think my chart should have been noted as such, but clearly it was not - or he was too busy to notice.   I am going to sit down and write him a letter on Monday right after Christmas reminding him of all this.  Then I will take a copy of that letter with me on my next visit in 6 months - if I don't call sooner and ask to get in to see him.

I also brought up the fact that I had gotten sick to my stomach about 3 times in the past 2 weeks, and i thought it was from one of my drugs.   I also mentioned to him that my family doctor had prescribed the pain killer for my back along with Tylenol.   I think the added drug is what is making my stomach upset.    

I'll be seeing my family doctor the first week of January, so plan on having a long talk with him on the best course of action.   I'm very tempted to get an appointment in Milwaukee with Don's doctor (not thru the VA tho, because I'm not a veteran).   That doctor is a Parkinson's specialist working out of Froedert Memorial Hospital.  But there is no point in trying to get an appointment with her now because of winter driving.  It will have to wait until spring/summer when there is no worry of a snow storm making a 2 1/2 hour drive into a 5-hour, nerve-wracking trip.  It's nerve wracking as it is just driving in Milwaukee.

The above picture is the front of our house - taken last Christmas.  This year we are minus the outdoor lights and have snow on the ground - thanks to mother nature delivering an inch yesterday.   I have to laugh because the weatherman has been saying for a week that it looked like we would have a brown Christmas this year.   Wrong again! he he - I still think they sometimes predict the weather by shooting darts at a dart board.   

Our daughter and her husband are coming early afternoon today and will spend the night here.  After we give them breakfast Christmas morning, they'll leave for Ken's family.   We were invited to do down there too, but have declined due to the hour's drive back home in the dark.   Neither Don nor I are up to that anymore.   I think we just may take in a movie tomorrow afternoon.  Or, we'll stay home and get ready for the Packer game in the evening.


I hope you all have a blessed Christmas, Holiday Season or Happy Festivis, as the case may be. 

Sorry for the "down beat" post at Christmas, but I wanted to document everything that happened at the Neurologist's appointment last Monday while it was fresh in my mind.

Thanks to you my faithful readers for taking the time this busy season to read my blog.   It is so appreciated.



Sunday, December 11, 2011

Christmas Brain Fog

Dear Readers,

The tree is up, the cards in the mail, and Mario is a happy kitty to be the added decoration under the tree - his favorite hangout place during Christmas season.  All the kudos go to Don for decorating the tree, and doing such a great job.  Other years, the job was usually mine after the tree was carried up from the basement and set in place.   It's amazing how things change in a year.

Getting the cards and letters out was a big job this year.   I've always relied on address labels and keep a current list ready to go in the computer.   This year Avery changed their template numbers - at least for the 8160 that I've always used.  Of course I had bought a new package of labels.  I can't tell you how many times I printed the same set of labels trying to get them to line up correctly.   I fiddled with the margins, changed settings, stood on my head, said a few choice words, called Avery, stood on my head some more, and said more choice words.  The air was turning blue, and even Mario didn't want to be in my office.  After Day 1 out of the 5 I worked on cards, brain fog was setting in, and I really didn't know what I was doing for the remaining 4 days.    

The long and short of the story is that some friends might get 2 cards and some may have been omitted by mistake.  I clearly didn't know what i was doing anymore.  Today Don confirmed one error after talking to his sister, who mentioned she had received our card and letter.   When Don was talking to her he was holding the envelope and card in his hand that we were going to mail out later today.    YIKES!  That's one we know about - how many others were duplicated and how many have been missed!

I hate living with this brain fog and feeling like I don't know what I'm doing.    Yes, it's probably the meds, but I still don't like it.  There are so many days where I feel like i'm mentally losing it.  A Twitter friend once told me 'Getting old "ain't" for the faint of heart.'    How right she is!!

ha ha- so if you are a friend who received two cards, count yourself lucky and save one for next year in case you are missed at that time.  If you were missed this year - well, what can I say...............maybe next year you will get one!


Thursday, December 8, 2011

Random Acts Of Kindness

Dear Readers,

The past two weeks I was out and about more - dentist one day - short shopping and errands on other days.  My faithful companion - the walker - was with me on each of those outings.   

Walkers on wheels are a great invention, but they are a little cumbersome to use, especially when going in and out heavy doors that don't have the automatic opener.  Going in isn't to difficult, but you do have to position your self off to the side of the door, open the door with the right hand, then slowly navigate the walker thru the door while holding the door open with your right hand or body - or butt.

Going back out when the door is heavy is a real challenge.   Again, you have to move yourself to the left of the door, hold the walker with the left hand, use the right hand to pull the door towards you, then swing your butt over to hold the door open while you grip the walker with both hands and turn the walker in the right direction to go out the door.   (Big rumps do help. he he)

I was pleasantly surprised at the dentist's office recently when a gray-haired man (probably close to my age) came over and asked if he could assist me.   I was struggling with that door - a room full of people all waiting to see the hygienist or dentist, and ignored by all except the nice elderly gentleman.   I was very grateful and thanked him profusely.   It was a random act of kindness that was so appreciated.

Then on Saturday we were invited to a birthday party for the granddaughter of a friend.   It was a rainy, drizzly day, so Don pulled in the driveway to let me out.  I didn't bring a walker because I knew it would be crowded in the house, and I usually don't need it in a house anyway.   Much to my surprise, the son of my friend walked out to greet me, offered me his arm for assistance, and helped me up the steps to his home.   Their entry way has wooden steps leading to a deck like platform - there is no railing.    That was another random act of kindness that was so appreciated.

When we got ready to leave, the other son of that friend asked me if he could assist me to the car where Don was again waiting in the driveway.   Another much appreciated random act of kindness.   I mentioned it to their mother the next day and told her she could be proud of her sons for their willingness to help.  So very thoughtful of both young men.

Then this morning I was attempting to get into Barnes & Noble's store and again was faced with big heavy doors that had to be manually opened.  Along came a lady who appeared to be my age and perhaps even a year or two older.   She said "Here, let me get that door for you!"  Another random act of kindness!

Thru the years I have tried to do the same for people struggling with a door and a walker or wheel chair.  I guess what goes around eventually comes around.

You never know when an opportunity will present itself so you too can perform a random act of kindness.  I do hope you will take the opportunity and "make some one's day" because, in time, you too will be in need of the extra help.   These wonderful people certainly did "make my day" and I'm so appreciative.


Monday, December 5, 2011

Chance Encounter

Photo from Blog of Dr.  Jefferson

Dear Readers,

I'm always amazed at the chance encounters available in the Blog World and Twitter World.   You just never know who you will meet along the way and from what country.

I'd like to introduce to you today Dr. Duncan Jefferson who lives in Australia.   I was searching thru the blog world a couple of weeks ago and happened on Dr. Jefferson's blog  http://duncanjefferson.blogspot.com.  I immediately took a liking to his blog and followed it.   He writes on medical issues and non-medical issues, and i have found his blog most helpful and easy to read.  

There have been times when I've touched on a subject, and a couple of days later he has expanded on that same subject.   I'm honored that I can provide him with some post ideas, and he certainly has helped me with valuable information.   So thank you Dr. Jefferson for reading my blog and taking an interest in the subject matter I have talked about.

Please go over and take a look around his blog - I think you'll like what you see.   http://duncanjefferson.blogspot.com.

Stay tuned later this week for my next post on "Random Acts Of Kindness."


Thursday, December 1, 2011

Dementia - Not Yet

Dear Readers,

The last of the leaves have been cleaned up, lawn mower put away, and snow blower ready to go, thanks to Don.   The above picture was taken about 10 days ago, the leaves have since fallen and the tree is bare.   Tonight we are to have snow!  Mentally, I'm not ready.

Well, there is good news and bad news for the week.   My 6-month checkup with the psychologist  was this week.   After testing, he asked me how I felt I was doing.   I said, "mentally I've slipped a notch - just in some areas".   He said he agreed with me.   I did slip a little in some parts of the test, but remained good on other parts.   It's an exhausting test as you are mentally challenged on every question or problem.  He didn't do the entire battery of tests.  Only did those that I scored poorly on 6 months ago.

Now 6 months ago I clearly remember the psychologist saying that I have a little Dementia.   This time I brought it up and he said "Oh, you don't have Dementia."   Now I know mentally I have declined a little since 6 months ago and the tests indicate I have declined, so did he make a mistake when he said I had the start of Dementia 6 months ago?   I can only suspect that was the case or he didn't clarify enough as to what he did mean, and I didn't question enough and accepted what he said. 

Why is this important to me?   Well, my mother's side of the family is full of Dementia/Alzheimer's history - starting with my grandfather (Dementia), followed by my mother, two of her sisters, and her remaining brother - all diagnosed  with Alzheimer's.  Because of this history,  the psychologist wants to see me every 6 months just to keep a handle on things and I agree.

The bad news is that I have declined a tiny notch mentally, but the good news is that clinically speaking, I don't have Dementia!    I can tell you that I'm in a mental fog a good share of my day, which I believe is from all the drugs that I'm on - most of which make me tired.   I can't seem to even prioritize things that need to be done.  Yes, I've tried making a list, but never am able to check off more than a couple of things a day on that list.   Several times a day I can wander into a room and wonder why I went in there.   I know this is somewhat normal as you age, but I think with me it happens more than what would be normal.  I'm talking several times a day.

The other thing I've noticed is that I've slowed down to a snail's pace physically too.   It takes me so long to accomplish anything.  Much of the time I feel overwhelmed at all that needs to be done around here leading up to Christmas.    The slowing down is no doubt the Parkinson's kicking in, and the drugs only magnify the problem.

To complicate matters, my back has been painful lately.  The MRI taken a week ago showed the arthritis in the spine has increased since 3 years ago.   My family doctor said I'm not a candidate for surgery (nor would I want it at this stage of the game), and the back doctor yesterday confirmed everything.   He did offer to give me a shot in the spine, but I'm not sure I want to go thru that.   I know it's risky to start fooling around with the spine.  I really can't stand upright for very long - about 3 minutes is max, then I have to lean on something or sit down.   So trying to accomplish anything standing up is about impossible.  Walking from the far bedroom into the kitchen is tiring on my back.   Don has been wonderful and has assumed so much of the physical work around here.  He does it willingly and without complaint, but i feel guilty not being able to do my share.  The spine doctor feels the weakness in my back and legs is due to the Parkinson's.    He's probably right.

Now on a good note - I bought a Nook, color, touch e-reader yesterday.   It's not the tablet, but one step down.  I'm able to navigate around it quite well, but typing on that tiny keyboard takes awhile as I keep making mistakes.   Kim says I'll get adjusted more after I've used it several times.   I do like it tho.   Now if i can only stay awake longer at night when I try reading.  Why don't I read during the day you ask?   Well, any time of day when I try to read, it puts me to sleep.  So, there is no good time of day for reading.

I called Kim for help and she walked me thru the process of getting the WiFi set up, something I've never had to do before.   She gave me some mini instructions, and now I should be able to read tonight.   It will be fun playing with a new toy!   I spent the extra money and bought the hard covered book that was available because I have trouble remembering things after reading.  All the information is on the device, but you have to remember what you read, leave the page, and do the steps involved.   It was just easier to buy the book for $8.00.

Stay tuned - next week I have an appointment with the Neurologist (I think it's next week).