Parkinson's and Skin Issues - Leprosy?

Dear Readers,


Did you know that it's very common to have skin issues with Parkinson's?   Yes, I know, it's typical anyway as we age.  But I can tell you I have noticed many more skin blemishes on my body in the past year since being diagnosed with PD.   In fact my family doctor had mentioned (when I had showed him a couple of moles) that I can plan on getting many more of them too, along with other skin issues.   I used to wear makeup to cover up all the skin things, but have finally decided this is "who I am" - take it or leave it.


A couple of days ago  I went to the beauty shop for my monthly trim, after my guardian angel of hair coloring (A special friend who colors my hair for me monthly) had applied hair coloring the day before.   My beautician noticed  a couple of areas of dry, sand-papery skin on my forehead.  (See picture with arrow in the middle of my forehead).  I know it doesn't show up very well on the picture, but it is very noticeable in person - looks like dirty skin that just won't scrub clean.  Or somewhat like a birth mark.  


My beautician had a name for the skin condition, and typical me, I can't remember what she called it.   But she did show me a product that she uses on her face as a moisturizer (she has severe rheumatoid arthritis) and also has skin problems.  She recommended Cocoon, which is full of Amino Acids.   Now it's too early to give a report on how it works because I just started using it a few nights ago.   I will keep you posted though.  But, already, after only 6 nights  my face does not feel so dry.     

It is pricey, but will be worth the price if it works.  None of my other moisturizers worked for this problem.  (No, I'm not being compensated for mentioning this product or the product mentioned below in any way!)

I meant to ask the doctor about something to use on my face, but forgot because I didn't have it written on my list.  But for now the Cocoon seems to be helping.


According to The Parkinson's Disease Treatment Book by J. Eric Ahlskog, M.D., what I have on my face probably is Seborrhea Dermatitis.  "The jury is still out as to what really causes skin problems with Parkinson's patients, but it is suspected that the various medications are the cause."   If i were to make a guess -  YES - IT'S THE DRUGS!!   What is that old saying - "Better Living Thru Modern Chemistry!"  


By the way, I saw my family doctor two weeks ago and showed him all my moles (just to be safe).   I'm happy to report none of them are cancerous.  That's another thing that has worsened since being diagnosed with Parkinson's.   The amount of moles on my skin has increased two-fold in 1 year, along with little bumps that look like warts.   


Overall my skin is extremely dry - to the point where it's very itchy.   I was talking to a friend on Twitter one day, and she suggested using "Palmers Cocoa Butter Formula, with Vitamin E."  Let me tell you - that stuff works magic.   I do have to apply it daily, and if I don't, I really pay for it big time with excessive itching.  Cocoa Butter is an old product as I remember my mother using it when I was a kid.  It's also Fragrance Free for anyone needing that feature.   I don't know why it didn't work on my face, but it didn't.  You can also pick it up at the local drug store.  


Now dry skin is typical in the winter if you live in a northern climate.   Our houses are dry with the heating unit running full force in the winter.  But my skin is dryer than it has ever been before, and this is the first year I've had the itching to go with it.   I also drink a lot of water, but that hasn't made a difference either this year.  The Palmers Cocoa Butter takes care of the itching for almost 24 hours.


Would you believe I even looked up  Leprosy on the internet to see what that looked like?   Horrible, don't even bother to look.   ha ha - at least I don't have that!


Thanks for visiting once again, I know this is a boring post - guess it's reflective of the mood I'm in these days.



Mary

Fluffy - The Saturday Photo Hunt

Dear Readers,


I've joined the Whistle Stop Saturday Blog Hop and this week's assignment is FLUFFY!   The fluffiest thing in our house is our cat, Mario  When I started this blog my intentions were to keep it separate from Mario's, but here I am using one of his 400 pictures! Guess you can tell who ranks in this house.  Sorry, but he is the fluffiest thing we have.


I started out hunting for a good article on the importance of pet therapy.  Well, of course when you want something specific, you can't find it.   But I know you have all seen the articles at one time or another:   Having a pet is good for mental health, lowers blood pressure, good therapy for depression, good for overall health, etc.   Even nursing homes/assisted living facilities are getting with the program and allow residents to sometimes have a pet.   


Mario is all of the above for us.  He's not the most beautiful cat in the world, but he makes up for that by being super friendly and loveable and is good therapy for both Don and myself.   And, the fluff on his belly is super soft!


He is good therapy for both Don and I - gives us a reason to get up in the morning.  He shows unconditional love


It's nice to see more and more nursing homes/assisted living getting on board and allowing their residents to have a pet.  

https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrEUfAmIlVl8mDdtHOmmc3Pi1j1e0GpJasMLZQveNL9xH41lEnIKBYxAxRGtTS4aWNS_wS4ry-Yt_jtMKDKfGJhHwLH2tUzYmhBT5dK1Dae27aah2_vARKlr-9i3GFCIRC6Aai24I_NMyR/s1600/photohunter7iq.png

Now - why don't you join the photo hunt.   


Mary 

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