Shining Star Award and Liebster Award

Dear Readers,


I was deeply touched the other day when one of Mario's Twitter friends, Prudence over at A Coonhound's Tales  presented me with an award - not Mario.   I was very surprised and touched because my blog is so new and still in the "making" so to speak.   Receiving that award reminded me that Mario hadn't acknowledged his awards received since Thanksgiving either.  Thus we've decided to do a combined post and present some of the awards to followers of my blog and some to followers of Mario's blog.   Whenever we get an award, we like to present to some of our friends that haven't had much exposure yet but have good and interesting blogs.


This afternoon Mario updated his blog and we presented the Shining Star Award (pictured above)  to a young lady suffering from a debilitating disease she was born with.   Nicole at Crippie's Corner is an inspiration to me as she always seems upbeat and keeps her sense of humor.  To view her blog, just click on her name.

Mario actually received the Liebster Blog Award about a month ago from Abby at Manxmnews Blog and then I received it just recently from Prudence over at A Coonhound's Tales.   Therefore, we are taking 5 blogs from my list and 5 from Mario's list.  This same information will be posted in Mario's blog.

"Liebster" means favorite or beloved in German, and this award helps to draw attention to blogs that aren't too well known.

Here are the rules for this award:

Upon receipt of the award, one is to:

1) Link back to the blogger who gave it

2) Paste the award on the blog

3) Choose 5 blogs to pass this award to (they must have fewer than 200 followers)

4) Let the recipients know about their nomination by leaving a comment on their blogs.

Mariodacatsmom presents the Liebster Award to: 


Day By Day With Beth Marie - Beth lives with a life-threatening disease - day by day.


Life Your Way  -  Living with a chronic illness.  When I'm feeling down, she's another one who can cheer me up.   

Notes For My Next Life  - Works in the music industry in Los Angelas, CA - interesting experiences in her lifetime.  

RamblingOn  - Breath-Taking photography, human for @Katiebella2 and for @AdmiralHestorb, who is now OTRB. 

Starting My Collection  -  Granddaughter of dear friends who happens to love to cook and is good at it.  Has posted several good recipes.   



Mariodacat presents 5 awards to:


http://nerissa-the-cats-life.blogspot.com/

http://meoweh.blogspot.com/2012/01/mellow-fellow-eh.html


http://whisppy.blogspot.com/2012/01/monday-madness-with-merlene.htm


http://teamtabby.blogspot.com/


http://jazzydacat.blogspot.com  --  Mario and I are hoping she'll come out of hiding and post again, so we just had to give her this award to entice her!




Enjoy your award friends,


Mary & Mariodacat   

PART 2 - "M.S. And Me" by Guest Writer, Jane - HuMan to @JessieJaney

Jane's home city

Dear Readers,

Now, back by popular demand, here is Jane, huMan to @JessieJaney.  (If you missed Part I, scroll to the bottom of the page and click on Previous Post.)

"Heat and MS: This is my version of hell! Late one night, about 7 years ago I was sitting in a lovely lilac scented hot bath when suddenly I could no longer sense my legs. They weren't numb; it was like they had disappeared! I was terrified as, at that time, I only weighed 45kg (about 99lb) and did not have the strength to get out of the bath to a phone. With a pounding heart I pulled the plug and sat there. Jessie's predecessor Zoe (another black cat) sat with me for the next 3 hours. Gradually my legs awoke and I was able to flop out of the bath and drag myself to my bed where I fell into an exhausted sleep. The next day it was as though I'd had a nightmare but, as I was still wrapped in my towel, I'd knew that it wasn't. A few hours later, I saw my GP and he explained that MS sufferers often have what is called a pseudo-exacerbation which occurs when the core body temperature rises.

Imagine living without the luxury of having a hot bath or shower! Imagine living in a country where the average summer daytime temperature is over 30oC (86oF)! Imagine living with the fear that a slight infection might raise your body's temperature! If you can imagine this then you know the apprehension that is my shadow. This summer has been a bad one for me as a new symptom has raised its wicked head. Not only is the temperature causing me problems with its regular "pseudos" but they now bring with them cramps. Enough of the whining, Jane!

Negative Side-Effects: I have gone from a relatively healthy and happy woman to one who hides from the world. I gave up work 10 years ago when I no longer had the ability to concentrate for the periods required to continue to be a successful Office Manager and for 4 months of the year I'm a virtual prisoner in my air-conditioned unit. Air travel is now a thing of the past as I am unwilling to risk the effects of air pressure.

Positive Side-Effects: I am fortunate that my disability pension, inheritance and superannuation enable me to live a relatively comfortable existence. I found the internet and over the years have played in such games as Palace, Second Life and now, Twitter. I have made many wonderful friends, people who I will never meet but who have touched my heart. I've learned the wonders of Adobe Photoshop, although I do prefer using JASC Paint Shop Pro (now owned by Corel Draw who have completely stuffed up the newer versions of PSP). I have had the joy of being accompanied by two wonderful cats (first Zoe and now my fearless Jessie). In Twitter Jessie displays my real personality. I guess that the staff of anipals really do take on the image of their employers … or is that around the other way? Most importantly, this year I've learned to be less selfish with now having to be the carer, in a small way, of my carer, my darling brother, Hugh.

So that's my story and I hope that it has given you a small insight into "MS and me."



Jane

Mary here: Jane your story has been so valuable in teaching us all what it is like to live with M.S. How scary it must have been to be trapped in a bathtub and not to feel your legs or be able to pull yourself up.   I can't imagine. 

To quote one of our mutual Twitter friends "Jane is so brave to come forward with her story." Thank you Jane for sharing your story with us so we could get to know you better and understand through you just what it's like to live with M.S. I do hope you will come back again and update us on your situation. My thoughts and prayers will always be with you as you bravely battle this disease.

"M.S. And Me" by Guest Writer, Jane - HuMan to @JesseJaney

Our guest writer (Jane) in an overlay of Melbourne, AU,
her home city

Dear Readers,


I have been so blessed to have such great guest writers, and I'm equally pleased to introduce another one to you today.   This gal also has a debilitating disease that there is no cure for.  When I heard a piece of her story a week ago, I knew I had to ask her if she wished to guest write. 


Jane's story:


"Hi I'm Jane, the huMum of @JessieJaney, and I'm writing this in answer to @Mariodacat Mom's kind invitation to provide her with a "guest post" for her blog. I do not have Parkinson's Disease but I do have a degenerative disease of the central nervous system too and its called Secondary-Progressive Multiple Sclerosis. Oh goodness me where do I start with writing about "MS and me"? I feel such a fraud, as at this moment in time I'm basically healthy.



What is MS: It is now generally accepted that MS involves an abnormal response of the body’s immune system that is directed against the fatty sheath (myelin) that surrounds and insulates the nerve fibres in the central nervous system (the brain, spinal cord and optic nerves). It affects different people in different ways with symptoms being mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision. They do know it affects more people the further from the equator they reside. It is presently incurable. It has many types - Relapsing and Progressive and the variations in between. The worst being Primary Progressive which seems to mainly affect those diagnosed at an early age (in their 20's) and invariably leads to an early death from such complications as pneumonia.

My History: The first thing that hit me was depression at the age of about 40. My wonderful GP and I both agreed it was probably the beginning of the "change". After numerous and various anti-depressants (plus sessions with psychologists and psychiatrists), I just wasn't improving and it had got to the stage I had to crawl off my bed to get to the bathroom because of the "lightening strikes" firing off in my head. For about 2 years I gave up on the medical world but my worried boss and dear friend phoned my brother (Jessie's Uncle Hugh) who, in turn, insisted I go back to my GP after he visited him to itemise my symptoms. The result was an MRI (Magnetic Resonance Imaging) that showed extensive demyelination and the resulting frightening initial prognosis of Relapsing Multiple Sclerosis. Things moved quickly - days later I was seeing a Neurologist and hours after that I was hospitalised for the first of many times. I was prodded and poked, scanned and x-rayed, eye-tested, spinal tapped (ouch) and then for three days I had a shunt in my hand and a twice daily infusion of high dose corticosteroids as at that time I was suffering from an exacerbation (meaning, I'd relapsed) and steroids were needed to kick-start the body into remission, or as we say in the MS world into remitting.

To cut a long story short - that first visit to a hospital occurred 10 years ago. Since then I have been through the relapse/remit cycle so many times I can't count. Three day stays in hospital for corticosteroid treatment have become an annual norm in my life. For this post I looked at my MRI scan history and see that I have had over 30! It's a wonder I'm not a magnet by now! I've spent 6 years on Interferon Beta-1b (called Betaseron) as these 2 times a week, self- administered injections are supposed to delay the onset of relapses and progression. This has not yet been proven in Clinical Trials to my satisfaction. The side-effect of this drug is "flu-like symptoms" so, with the begrudging approval of my Neurologist, I decided to quit. I am prepared for the consequences of my actions but I do not fear them, as living with the flu for 6 years is the pits.


I now have Secondary-Progressive MS but have been on a plateau for a number of years. I do have a permanent limp and peripheral damage to the sight in my right eye. I suffer cognitive dysfunction, meaning I no longer have the ability to quickly problem-solve or perform calculations. My balance is "crappy" and I often have falls, usually in the most embarrassing places like the supermarket car park, so it is rare to find me without a scrape, bruise or bandage of some kind. At times I'm reduced to using a walker to get around and at other times you could pass me on the street and only notice a slight limp. I do try to eat a healthy diet and get my 1/2 hour of sunshine a day (my Vitamin D hit) but find that summer is hellish."

  

@JessieJaney

Mary here: I'll give you the second half of Jane's story in the next post.  Be sure to come back and find out why Jane's Summers in Australia are hellish!   I have learned so much about MS from Jane.

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.  


Mary

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.


Mary

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.


GO GREEN BAY PACKERS!


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.


Mary






  

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!


Mary