Visit With Nurse Practitioner

Dear Readers,

Today was my long awaited visit with the Neurologist's Nurse Practitioner; a young lady who seems very knowledgeable in PD.  The nice thing about an NP is they usually can take longer with the patient.   She didn't even run and hide when I took out my 8 1/2 x 11 sheet of paper with 10 questions looming before her eyes.   I had half expected her to walk off the job when she saw my list.   (just kidding)

I had two large concerns  that had been offered by friends with some knowledge of PD as their parent(s) have/had PD.  

1.   When I tried the Carbodopa/Levodopoa combination drug when first diagnosed with PD, I was on the generic version.   Would the brand name drug have made a difference.  And, any chance of getting put on that brand name drug now?

Answer:   No, the brand name drug would probably not have made a difference.   No, they will not let me try it now.  The reason I had to get off the non-brand-name drug was because I was starting to fall.  (Remember, I fell into my desk that one day and knocked everything off it.)   If they were to put me on the brand name drug now, there is too big of a risk that I would fall.  That would just complicate my life even more. 

I guess I would have to agree with that answer.   Remember, one night, about 4 weeks ago,  I did fall in the bedroom when getting up at night.  I did not trip over anything as I'm extra careful about keeping things off the floor.    My sense of balance is still way off and not likely to get too much better, even tho I'm doing some exercises to try to help retrain my brain for better balance.   I am already at high risk for falling, so don't need to compound the problem.

2.  Do the drugs you take to treat Parkinson's cause Dementia?

Answer:   No.    Many people that have PD do develop Dementia, but not the entire population of PD patients end up with Dementia.   There are some drugs that they believe have a tendency to cause Dementia, but they are not the standard drugs used to treat PD.

The human of one of Mario's Twitter friends suggested I get the book "The Parkinson's Disease Treatment Book" by J. Eric Ahlskog, M.D. at Mayo Clinic.   Dr. Ahlskog specializes in Parkinson's.  This book is about 2 inches thick and will take me a long time to read.  But I did scan thru it today to check to see what Dr. Ahlskog had to say about drugs that might cause Dementia.    Dr. Ahlskog lists several common drugs that fall into that category, but none of them are used to treat Parkinson's.    If you have a history of PD in your family, especially if a parent had the disease, I would highly recommend this book.   You can pick it up at Amazon.com.   My copy came from there.  It is a used, hard cover book, that looks brand new.  (No, I'm not being compensated in any way for mentioning his book - not a bad idea tho.  he he)     

There is no cure for Parkinson's (unfortunately), but new advancements are being made weekly towards understanding and identifying the gene's involved.

I did ask the NP what was the best thing that I could do for myself.   She said continue exercising as studies have shown that people that exercise, do better with PD in the long run.

She also was impressed that I had a blog, and also helped Mario write his blog.  She said that was another positive in my life and to keep it up, along with being social on Twitter.  He he - I didn't try to explain our animal community. 

Unfortunately, she did not come up with a miracle cure, so I'm still feeling somewhat like the patient in the cartoon at the top of the page.    ha ha - take my 3 Mirapex drugs today and pray for a cure for PD in the morning!

Thanks for reading my blog friends.

Mary

The Dilemma - Sell or Not Sell

Our Hosta Bed  2011

Dear Readers,

This summer we went through a dilemma - should we sell the house and move into an apartment?  Don was getting tired of all the yard work and so was I.  I usually helped him mow the yard and in the fall would sometimes run around with the mower myself to pick up all the leaves.  Don's theory is leave them there until the end of the season.  My theory was pick them up a couple of times a week and get rid of them.  So, I just did it myself when the mood struck!


Our daughter was all in favor of our selling the house.  In fact, she even started sending me links via email of apartments in and around their city.   Well, we were not quite ready to move 40 miles away yet as we still enjoyed going out for dinner some evenings with good friends and also enjoyed Sunday morning breakfast with those same good friends.   We were not yet quite ready to give all that up.

We called in a real estate agent to tell us approximately what our house would be worth.   It was about $10,000 under what we were hoping for.  It seems the housing market has dropped about 10% in the last year.  And we are fortunate in that WI is not one of the states really hit hard by the slump in the housing market.  We are just slightly down.   Of course, the agent wanted the listing and said we should get in on the market this spring before prices fell anymore.  

A couple of days later,  Don came home and said the apartment next door to one of the guys he worked with (a part-time job driving courtesy car for a local car dealership) was vacant.  Would we like to look at it?  Rent would be at the top of the scale  we were willing to pay.

The house we live in is only just under 1,200 square feet - not very large, but more than enough for our small family. It does have 3 bedrooms, and we have a finished family room in the basement. Just an average house in an average neighborhood in our city.

Arrangements were made to see the apartment, a duplex type set up, ranch, one story, two bedroom, attached single car garage, and they would accept cats.  Just what we had in mind.  Sounds ideal - right? 

The apartment, while in a great neighborhood and lovey, had no room for our furniture.   The living room was broken up such that there was no wall for a full size sofa.  When I stood in the living room and tried to picture furniture placement, I finally decided that we'd have to get all new furniture because what we had was just too big.   There also was not much of an area to eat in the kitchen and no dining room.   That means no company in for dinner, which I still like to do now and then.   Also, no good place to put Mario's litter box - an important item.  The bathrooms were too small to accommodate a litter box.  There was no storage to speak of - just a small, walk-in closet in the kitchen.    The bedrooms were too small to hold a desk and computer for Don and a desk and computer for me.  (YIKES - try to operate with one computer between us - I don't think so!  I'm afraid our 53-year-old marriage would come to an end! he he )

I know we have to downsize and that doesn't bother me.   But I don't think either of us are ready for "tiny" yet.  We need our own space.  

Apartment living was not looking very favorable.   We even looked at a couple of duplexes, which would have given us more room.  But it also meant shoveling snow and mowing the grass.  Then what is the point of moving?

Mario's Twitter pals were most helpful in giving us ideas.  Wait until you hear what his friends came up with.

Sometimes it's easier to solve someone else's problems than it is to solve your own.

Until next time,

Mary

PD Symtoms Vs Medication Side-Effects

Sunrise On Ocean, Italy Cruise Sept. 2008

Dear Readers,

Thank you for following and reading my blog.   I am truly very appreciative.   

Do you read the side-effects on the meds you take before you start taking them or after you have started them?   Personally, I've never bothered to read before for fear they would only scare me and I'd not take the meds.    That's what I did with Mirapex, which I'm taking to help with Parkinson's symptoms.  

But with the last increase in strength ordered by the doctor and starting to experience more side effects, I thought I'd better check them out.   Since I had been taking a lower dose of this drug for years for RLS, I really didn't worry about side-effects.   I already knew the drug made me sleepy.  

Here's a list of the side-effects that affect me personally.  There are about 35 possible ones total, so I won't list all of them and bore you.

Drowsiness - I already knew this, plus my doctor warned me I might have the tendency to suddenly fall asleep anywhere, anytime.   Well, it isn't quite that bad for me, but I do start yawning within about an hour of taking a pill.

Sudden Urges - like Compulsive Gambling.   Not me, but am eating more and gaining weight.

Dizziness or Lightheaded*** - Yes.

Balance Problems***- Yes, getting worse.

Light Headache*** Yes, most of the time.


Dry Mouth*** - Yes

Stuffy Nose - Yes

Change In Mood or Emotions*** - Yes - Depression sometimes sets in easily.

Confusion*** - Yes - getting worse

Difficulty Walking*** - Yes - getting worse daily.

Memory Loss*** - Yes - getting worse daily.

Weakness*** - Yes - getting worse daily.

Swelling of arms or legs - some.

New Unusual Skin Growths - skin is getting terrible

Trouble Swallowing*** -  yes, at times.

Vision Changes*** - Eye doctor a month ago said no.  Use eye drops to retain moisture.   It does help some.  My vision was good he said, but to me vision seems worse.

NOTE: Those side-effects with an *** after are also listed as symptoms of PD. Interesting!

Now some "food for thought."  Since some of my symptoms are those of Parkinson's and also side effects of the Mirapex, am I exacerbating the Parkinson's problem by taking Mirapex?   That is a question I'll be asking the Nurse Practitioner in a couple of weeks.  

I have recently learned that when a doctor does a clinical study to be published in a journal, they do have to list every single side effect anyone noticed - even if it was only 1 person out of 100 that reported that symptom.   I did not know that until 2 weeks ago.  So maybe the side-effects means nothing - I don't know.

Next blog post I'll talk about what kinds of things I'm doing to "help myself" - aids, classes, etc.

On the pleasant side, a good friend and I went to the Friday afternoon movie and saw "The Help."  What a bargain too - $4.00 each.   Both our husbands were working, so they were not invited.   giggle - a girls afternoon out.   We both agreed it was an EXCELLENT movie and we will recommend it to our friends.   Did any of you see it and how did you feel about it?  
Until next time,

Mary







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Down The Slippery Medication Road - Part 2

Map from http://www.sciencedaily.com/releases/2010/01/100127164022.htm
Red areas on the map indicate a prevalence of 13,800 or more Parkinson's patients per 100,000 Medicare recipients.

Hi Friends,

I happened on this map when searching for Images.  Thought it was very interesting.   I do live on the Eastern edge of WI on the Bay of Green Bay (part of Lake Michigan).   There is a lot of red in this area for whatever it's worth)

Yesterday I talked about the change in the dosage that the doctor ordered.   Well, would you believe that two hours after I had taken the first pill of the new dose I felt like I was on a much stronger dosage, even tho it supposedly was equal to two of the earlier pills..   I then called the pharmacy and ask if the dosage was right and "should it equal 2 of my old pills.  

The reply was "not always exact."  Even tho the medication was essentially  doubled into the new pill (.5 MG) it does not always mean the ingredients are exactly the same.   There might have been some other additive in the new strength, some tiny ingredient that can cause the patient to POSSIBLY feel it.   I swear, it was NOT my imagination!  I then talked to a friend on Twitter who is a chemist in a drug company in another city - she confirmed what the pharmacist said.  Doubling the strength into one pill from two does not always equal the exact same thing.  In other words - 1 + 1 does not always = 2!  No wonder I had trouble in math in high school.    It's the same thing when you use a generic version of a drug.   They are close, but NOT always EXACT!

As the old saying goes - "You are never too old to learn something new every day."  I certainly learned something new on this day.

I'm still taking the new dosage as the doctor prescribed, but it certainly feels to me like it's stronger. Usually within an hour after taking the drug, I get tired, very tired. Unless I'm mentally stimulated, I could easily fall asleep. It's no wonder I fall asleep so easily now at bedtime, but also wake up around 2:30 to 4:00 in the morning - wide eyed and ready to start the day. I don't know what the answer is or even if there is an answer. I'm still better off on this drug than the first combination - at least I can still function some of the time.

I can't wait to talk to the doctor's nurse practitioner in another week or two at my next appointment.

On a side note, I had lunch yesterday wtih a very dear friend - Olive Garden for soup, salad, and breadsticks.  It sure was good and so nice to catch up with my friend again.

Until next time friends when I'll talk about side effects (if I can stay awake that long - he he). 

Mary

Mary

Down The Slippery Medication Road

Photo by Associated Press, appearing in The Washington Post based on an interview for a story on dental problems in cats)

Dear Readers,

The medication road can be a slippery one.   I don't mean to scare anyone away from taking this drug, as it does the best job.   You may not have a problem with it - my husband didn't.   Carbodopa/Levodopoa,  25mg / 100mg  is the drug known to be the most effective, and the drug of choice by most physicians.   Then there is me.........

The doc started me on that same combo.  Day one went okay - felt a little strange in the head, but but no real problem.   On day two - I was like a zombie and was so drugged up I was afraid to be at home by myself and almost called Don home from work because I was afraid to even walk in my own house for fear of falling.   Instead, I stay in bed most of the day until Don came home from work.  I had an upset stomach and I was "flipping my cookies" so to speak in addition to feeling weak and dizzy.  Even taking the drug with food (preferred choice is without food) didn't help.   My starting dose was 1/2 pill 2 x daily instead of the full dose of 1 pill 3 x day.    The neurologist did mention on the day of our initial meeting that it sometimes takes months to play around with the medication before getting the right dosage.  I was beginning to think that "taking no medication" was a better option than living the way I was as the time.   My friends encouraged me to "hang in there" and give it a chance to build up in my system.  "Maybe it will get better."

I don't recall how long I gave the medication a try, maybe 5 days maximum.  That period of time was somewhat of a blur in my head!   It basically turned me into a non-functioning adult.   The last straw was the day I lost my balance, fell into my desk and knocked everything off the desk, including the laptop.  

Ha ha - picture a drunk trying to right himself after falling down and knocking things over.   It took some effort, but I managed to "right myself" and put items back on my desk.  My next step was to call the doctor's office.  I was told to STOP the drug immediately.

The neurologist managed to work me in to his schedule the very next day.  When I filled him in on the details.  He muttered something like "oh dam" to himself, although I couldn't really hear what he said.   Obviously I was walking a narrow (albeit crooked) path towards falling and breaking some bones.   Who needs that!

I asked the doc if I could possibly try to take extra doses of Mirapex, which is an older drug used to treat Parkinson's.  I had been taking that drug for a good 5 years for Restless Leg Syndrome (RLS) and had no side effects except for getting a little tired by the end of the day.  It seemed the lesser of two evils to me.

The doctor explained that Mirapex tends to create compulsive gambling in some patients and that is the reason doctor's hesitate to reocmmend it.  He was concerned that I'd become a compulsive gambler.   He asked if I liked to gamble, and I laughed!  Ask our friends that we used to cruise with - they'll tell you I don't last in a casino more than 3 minutes.  I'm the original party pooper when it comes to gambling.  Even the noise in a casino drives me crazy, and I can't wait to get out of there.  After promising the doctor I'd have Don keep an eye on me for gambling behavior, he authorized the drug.

Now any time a doctor suggests upping the strength of the drug in order to stay with one pill instead of several - be aware!  One plus one does not always equal 2 when it comes to drugs I have discovered.  (A pharmacist confirmed this theory for me).

My original dosage for RLS was 1,2, or 3 tablets of .025 mg starting around 4:00  p.m. for RLS, as needed.   The doc told me the Mirapex now came in a strength of .5, so he could save me money by ordering the large dosage instead of so many pills.  He ordered .5 mg twice a day - morning and night.  The .5 was to equal two of .025.

Sorry this post is getting so long, but I felt it important to document all the facts, not only for my own benefit, but also for any reader newly diagnosed with PD that might be reading this blog.

Until next time,

Mary

Tossed A Curved Ball

Dear Readers,

Sometimes life throws you a curved ball, and it's up to you to catch it and do the best you can with the ball tossed at you. You can let it fall to the ground, or you can catch it midair and figure out what the next step is. I'm slowly trying to figure out what to do with the curved ball tossed at me and my husband.   But, this is my blog, so things will be written from my perspective.   I will talk about Don sometimes, and might even invite him to be a guest blogger a time or two.

Both my husband (Don) and I have been diagnosed with Parkinson’s Disease.   Don was diagnosed in April 2010, and I was diagnosed in February 2011.   Don does not have a family history, while I do.  Neither diagnosis came as a total surprise as both of us have had apparent symptoms for at least 3 years.   In both cases, we’ve both had shaky hands, which makes doing fine-motor skills difficult – little things like threading a needle on a sewing machine or for fine needle work, and in Don’s case (he’s a hobby artist) painting  on a canvas in fine detail.  Don started shuffling in his walking gait, scaring our local friends and myself, - so afraid he would trip himself.   I developed very weakened muscles and have been afraid my legs would not support me and walk in a stopped position instead of standing up tall.

There is no cure for Parkinson's Disease, and no prediction of how rapidly the disease will progress. The best you can hope for is to manage the symptoms with a combination of drugs. But, more on those drugs next time.

When you are going through something this, it's very important to be surrounded by supportive family and good friends. Even Mario's Twitter pals have been very supportive of both of us (his ooman). Not a day goes by on Twitter without one of his pals inquiring about his M and D and how they are doing. I am so blessed to have this support and the support of local friends.

I do not have a direction for this blog other than to document my journey, share my thoughts, feelings and limited knowledge. I also hope to learn from you, and welcome helpful suggestions and feedback as living with this disease is much the same as living with a multitude of other debilitating diseases.

Until next time,

Mary