What Exactly Is Parkinson's Disease, by Guest Writer - Debra

Photo by Debra - location Northern Florida 

Dear Readers,

I'm so happy to have Debra of @Manxmnews back as a guest writer again.  
You'll remember from her post here on 10/8/11 her husband was diagnosed with PD in his 50's.   Debra has managed to sum up PD very well, as you will see.  

From Debra,

"Parkinson disease is a slow progressive, neurodegenerative disorder that occurs when nerve cells, called neurons, in the brain called the substantia nigra die or become impaired. These neurons normally produce a substance called dopamine. Dopamine is the chemical messenger transmitting signals in the relay stations of the brain, allowing for smooth, coordinated fluid movements of the body’s muscles.


The 4 main motor symptoms of PD are:

(1) Shaking and tremor Tremor is present in approximately 70% of people diagnosed with PD. The tremor in a hand or foot at rest is called a resting tremor. In 75% of cases tremor only affects one side of the body, especially in the early stages of PD.

(2)Slowness of movement, called Bradykinesia
Bradykinesia, is a profound slowness of movement, and a loss of automated movement, and is often a very disabling symptom of PD.

(3)Stiffness or rigidity of the arms, legs or trunk

(4) Trouble with balance called postural instability This causes people diagnosed with PD to develop a forward or backward lean and to fall easily.

Secondary symptoms of PD -Micrographia which is small cramped handwriting
-Reduced arm swing
-Slight foot drag on the affected side
-Freezing, a term used to describe being stuck in place when attempting to walk
-Hypomimia, loss of facial expression
-Dysarthria, low voice volume
-Retropulsion, tendency to fall backwards
-Festination, walking with a series of quick small steps

PD can also affect other body systems, resulting in non-motor symptoms. Some of those symptoms of PD include:
-decrease in automatic reflexes such as blinking and swallowing
-increase in dandruff or oily skin
-constipation
-sleep disturbances
-anxiety
-depression

Not all of the symptoms will be present in every individual, and the rate of progression will also vary from one person to the next.


Neurologists usually do not diagnosed PD until at least two of the four main symptoms are present over a period of time. The disease is both chronic, meaning it persists for a long period, and progressive, meaning it’s symptoms may gradually worsen over time.


PD is in most forms of parkinsonism, the label for a group of disorders with similar features. PD is also called primary parkinsonism or idiopathic Parkinson Disease. Idiopathic is a term used to describe a disorder for which no known cause has yet to be found.

The loss of dopamine producing neurons in the brain results in difficulty with movements. When the brain losses 80% of the dopamine producing cells in the brain, the main features of PD become evident. The cause of cell death is not known.

One theory about the cause of PD is free radicals -- damaging molecules generated by normal chemical reactions in the body -- may contribute to nerve cell death and lead to PD. Free radicals lead to oxidation, which is thought to cause damage to tissue, including neurons.

Another theory is PD may be caused by certain toxins, such as pesticides that destroy dopamine producing neurons. But there is no conclusive proof that external toxins are the cause of the disease.

Research is also exploring the role of genetic factors in PD. While several genes are known to cause specific forms of PD, the majority of the cases do not have a genetic link to PD.

One other theory proposes that PD occurs for unknown reasons associated with the normal age-related erosion of dopamine producing neurons in individuals. This idea is supported by the loss of antioxidant protection that is associated with both PD and normal aging.

There is not a clear understanding of PD, nor is there a current cure.

Debra


Thank you so much Debra for summing this up so well.  It's a complicated disease as you and I so well know.  And thank you for being such a good friend.   If I can ever manage to get back to Florida, I'll be anxious to meet you in person.


Mary

Another Aide!

Photo taken from Google Images

Dear Readers,


First I'd like to publically thank Kathy of @Meow_Girls for sharing her story of being a care giver (along with her sister Anne) of their father in the previous post.   I think it reminds all of us that being a caregiver to any disabled person is a full-time job and not an easy one physically or mentally.  Kathy and Anne truly are an inspiration to all of us.  They do have their hands full.


A few weeks ago, the neurologist suggested I get a walker because I had mentioned that I felt like my legs were going to give out sometimes.  This was especially noticeable when trying to shop.   Grocery shopping was not a huge problem, because I push the cart.   But when going to a department store or the local mall, I was always hoping there would be a cart at the entrance of the store to grab on to.  


I did not rush right out tho to get one because it's easy to procrastinate until the day comes when you really wish you had it to use.


When the neurologist prescribed the walker, he also wrote a prescription for Physical Therapy.   This was invaluable as the therapist was so very helpful.   Not only did she teach me things I could do at home to help build strength, but she also worked with me on trying to improve balance (a big problem with persons who have PD.   She watched me walk and suggested I also get a walker then proceeded to dig one of theirs out of the back room.  She recommended getting one with wheels, a seat so I could sit down when tired, and most important of all - brakes. 


Brakes are very important if you have PD and if you have a walker with wheels.    Going downhill on even the slightest decline (like the driveway) makes you want to go faster.  It's hard to control the momentum for some reason.


The therapist had me driving it all around their facility.   It was great.  I could stand up straighter when walking versus having the stooped over walk which is so typical of PD people.   One very nice thing I noticed right away - I could finally walk at a decent pace instead of creeping like a snail.   I felt like a kid with a new bike to ride.  


That afternoon Don and I ran downtown to the same Home Medical Store that we had bought the stair climber from.   They had to measure me for the walker, so I couldn't take it with me then, but I could pick it up the next day.   


When I asked if Medicare would pay for it.  The answer was yes, as long as there was a prescription form the doctor.  I proudly handed over my prescription, thinking I was so smart to already have that in my hand.    


WRONG - not so smart after all.   The prescription had to be exactly for the type of walker I was looking for. It needed to say with seat, brakes, and basket.   Otherwise, I would get the basic model - no seat, no brakes.  Something to keep in mind if and when you ever have to do this.


This meant going home, calling the doctor, and having the correct prescription faxed over to the home Medical store.    Nothing in life is ever easy or simple.


The walker was ready to be picked up the next day.   Fortunately, we drive a car with a HUGE trunk because this walker is not easy to transport because of the shape.  It does collapse by pulling up on the seat handle, but is still rather bulky.   It JUST fits in my trunk.   It is NOT the type of walker you can just shove in your back seat for transport.   A girl friend picked me up for lunch recently, and she had her car, which is somewhere between a car and a van.   It would not fit in the back without dropping the seat.   


One other piece of information - Medicare will only pay for a walker for you once every 5 years, so you are wise to keep that in mind when shopping for one.  In my estimation, that is fair, and quite frankly I was surprised that they even paid for this one.


I know this sounds like a product review - well it isn't.  I'm just so happy to have the mobility to go into stores without having to worry if I'll find a cart of some type to hold on to and, most importantly, I can sit down when I feel the need.     


It is a great invention, and you don't realize how great until you really need one.


Hope you'll come back next week because Debra, human mom to @Manxmnews will be a guest blogger again.  She's been doing lots of research too on PD, so came up with an excellent post you won't want to miss.


Mary  

Parkinson's In The Elderly, by Human Kathy of @Meow_Girls

Tippy grooming Pops!

Dear Readers,


It is with great pleasure that I introduce our guest writer, Human Kathy of the @Moew_Girls.   Kathy and I have been good Twitter friends for about three years now.   Knowing that her dad (Pops) had Parkinson's, I asked her to do a guest post.  I was so delighted when she said yes.  Here's Kathy in her own words......


"Our Dad was diagnosed with Parkinson’s Disease in 2009 by......me.

No, I am not a doctor, nor am I arrogant. That’s just the way it was. We had noticed he was getting more nervous but attributed it to his normally anxious nature.

One summer afternoon he called me from his daily walk to ask me if I would be able to pick him up. That’s unusual, I thought. I was not prepared for how I found him. He was trembling and had wet himself. Now, understand, Dad was always fastidious about his appearance. This old man I saw could hardly lift his feet to walk. His clothes were hanging on him. I immediately went home and made a doctor’s appointment for the same day. Our doctor said Dad was suffering from Congestive Heart Failure....and he was. That was true. We went directly from the doctor’s office to the hospital where Dad was admitted.

His CHF was pretty well resolved that day. But because he was so weak, it was decided to keep him in the hospital for observation. One problem our family noticed was the trembling. It was not just his hands but his entire body. He was shaking so badly that the bed was moving. The staff gave him a tranquilizer and the trembling continued. One evening his regular MD’s partner examined him and called us into the hall. We asked her what could be causing the violent shaking. Her answer to us was that he is old and his body is breaking down. She wanted us to put him into a nursing home.


Now you and I know that a person does not go from fully functional to being in need of a nursing home so quickly. Next day we contacted his regular doctor and he said that Dad could come home. Dad was now only shaking and nervous.

Oh yes, while in the hospital, Dad was seen by a Psychiatrist. This doctor gave Dad some anti-psychotic medication which when he took it. put him in another world.  He was off that medication within a week.

The shaking and slow walking went on through several doctor’s visits. I kept asking the doctor what was causing it. The doctor’s answer to me was “I don’t know”.

A few months and a lot of Internet research later. I put the puzzle together. Pop was walking slow, his face was nearly expressionless and he trembled. To me that could only be one thing. Parkinson’s Disease.  Knowing I could be wrong, at Pop’s next check up, I asked the doctor, “Could it be Parkinson’s disease”? His answer was something like “there’s a strong possibility”. I said to him, “you have been treating him for awhile now and you are saying a strong possibility”. He explained that Parkinson’s is not always easy to diagnose. Ok, that is sometimes true. I asked,” should I take him to a Neurologist?” His answer to me was” yes you should.” So why didn’t he tell me this before?

In another week, we went to the Neurologist. I was standing by the doctor and Pop was coming out of the men’s room when the doctor said to  her nurse: “That man has Parkinson’s”. That day she gave him the most common medication used for Parkinson’s which is Carbodopa/Levodopa.  His trembling has since decreased. He now takes five pills spread across the day. But he is pretty weak. He has a hard time picking up his feet to walk and still trembles some but the Neurologist does not want to increase his dose. Dad also has developed leg movements at night so he is now taking Mirapex, which really helps.

He is eighty six years old and has apparently developed some form of Dementia. He is afraid to be in a room by himself. He does not like my sister and I to go out shopping. He is starting to repeat himself and sometimes gets confused. The most difficult part of the Dementia to deal with is what I call his “Meltdowns”. He will start saying things which are completely untrue. Such as we don’t care about him, we don’t feed him. he is crazy, etc. He will try and leave the house even if he is in his pajamas. He has thrown himself onto the floor. Thank goodness he has never hurt himself. The reason I am writing about the Dementia is that the Neurologist has told me that at least 60% of Parkinson’s patients go on to develop some form of Dementia. That is a large percentage.

This is where we are with Pop and his illness now. All we can hope for is that his symptoms get no worse."

Kathy

Thank you so much for this post Kathy.  Being a caregiver to someone elderly with Dementia and Parkinson's is not easy.  You and Anne have your hands full.  Pops is blessed to have you both watching over him.

It's very hard to separate what is a normal part of aging and what is Dementia.  I will be doing more research on Dementia and PD in about a month, after I've seen the psychologist for my own 6-month followup the day before Thanksgiving.   

Mary

Comments on Brand Name versus Generic and Clarification on RLS Syndrome

Dear Readers,


There were so many interesting comments to my last two posts regarding Generic vs Brand Name Drugs.     I knew when I published that post it would lead to controversy, and that is healthy.   I would never steer you away from trying a generic drug, if they work for you, because they are so much cheaper.    The post was merely to make you aware that generics are not always identical to the brand name.   As one reader said "I think this is especially the case with drugs that work with brain chemistry and the nervous system."   My feelings exactly and that has been my experience.  


I was not surprised to read from some of you that you too have had problems with generics, yet they work well for others.   I have had generic antibiotics, and they worked fine.   It guess it depends on your own body and how the drugs react in you.  We are all unique and "one size does NOT fit all."  Sometimes it's the fillers they put in some of the generics that cause the problems.   You might have a sensitivity to the filler.   


I found this interesting article in the National Parkinson's Foundation post on the subject of Generics vs Brand Name.   Too bad I didn't read this first because I could have saved myself a lot of time.   They too warn against PD patients switching to generic drugs after taking the brand name PD drug.    You might also find it interesting.  

http://www.parkinson.org/Parkinson-s-Disease/Treatment/Medications-for-Motor-Symptoms-of-PD/Generic-vs--Branded-Drugs-for-Parkinsons-Disease


Another reader wondered if I really had/have RLS or could it be Dyskinesias (Involuntary movements provoked by medications, especially Levodopa).  This one I'm sure of - It's RLS.   My mother had it - long before they had a name for it and it often runs in families.   At the time I was diagnosed (some 15+ years ago) I was only on Thyriod medication, an acid reflux drug,  and some harmones, none of which contain Levodopa.  But in researching this, it was interesting to learn that either too much or not enough Levodopa in your brain can cause Dyskinesias, which is similar to RLS only the movements are somewhat dance like and fluid, versus jerky as in RLS.   My movements are jerky.


It's also interesting to learn that RLS appears in 3 to 8 percent of all the population, and may be even more frequent in those of us who have PD.  


I'm happy to report that I'm back on Mirapex - and what a difference!   No more RLS problems like there were with the generic version of the drug.   It took a few days of being back on the Mirapex for the problem to settle down, but that particular problem is now history (until the next time something causes it to kick in).


There is so much to cover yet that I'm not sure what the subject will be next week.  Guess it will depend on how much time I have to do a the research.


One final note.  Some of my local friends think I spend too much time dwelling on this subject because of the research that I do.  Nothing could be father from the truth.   I spend approximately 2 - 3 hours a week in research and writing this post, if even that.   And, I rarely ever talk to anyone about it in person or on the phone.   Anyone who knows Mario from Twitter (and most of you do) you know how many things he's involved in.   It also takes me much longer these days to do anything in comparison to a year ago.   More on that subject later.


Until next time dear readers,


Mary



  

Day 2 of Brand Name Vs Generic

Dear Readers,

Sorry to bore you again on this same subject, but something happened in the wee hours of this morning and I just had to document it.


My Mirapex came late yesterday afternoon.   It was too late in the day for me to take it for the 2nd pill of the day, so I waited until bedtime.   Good thing I did too.


Now usually I take my last pill around 11:00 and immediately go to bed.   Well, apparently I fell asleep while reading in bed and missed my 11:00 p.m. pill.   I woke up at 1:00 a.m. however and discovered my pill still in the container waiting for me to take it.   I did take it at that time.


It is now 8:30 a.m. and I'm a drunk!!   I mean a staggering drunk!   I have a doctor's appointment in 1 1/4 hours and I know i don't dare drive like this.  It's a good thing Don is home today because he'll have to take me and pick me up, even tho the doctor's office is only 2 1/2 blocks from our house.    And I'm very thankful for my walker.  


I'm telling you this because there is that much difference (in my body anyway) between the generic and the Brand Name drug.   Parkinson's drugs are quite potent and work on the brain to replace the dopamine, which is lacking in PD patients.


I should have remembered this this reaction when they increased my dosage a a few short weeks ago.   Now I don't dare take my morning dosage or I'll be flat on my  back in bed.   I will have to delay first pill of the day until 1:00 this afternoon at least and then perhaps only take a half a pill.  Then try to get back on track with a full pill at bedtime tonight.      


Who would ever think that going from a generic to Brand Name or Brand Name to generic could ever make that much difference.


I remember when I first met with the neurologist concerning Parkinson's.  He did explain that we'll be going through lots of periods of medication adjustment.   


Next week we'll cover a different subject, I promise.


Mary

Brand Name versus Generic

Dear Readers,

How many times has your doctor said "the generic drug is the same as the brand name?"   I was under that impression until I started taking medication for an under-active Thyroid many years ago.   One year the family doctor forgot to specify "Synthroid only" on the script, so a generic was sent.   I was an emotional basket case after trying the generic for 1 week.  When I called the doctor's office, they immediately wrote a new script for brand name only. My symptoms were that of being a nervous wreck and crying at the drop of a hat.    Once I got back on the brand name drug, things were fine. 


I've been taking Mirapex for RLS for years and now Parkinson's, as I've mentioned before.  When the Nurse Practitioner ordered the new drug dosage for me, she did not know I needed Mirapex only (although it should have been on my chart).   I forgot to mention it to her, so I can't blame her.    But, why didn't the pharmacy question it due to the letter they had received from the doctor one month earlier, which they had requested?    


The generic drug does an okay job of managing the Parkinson's symptoms.  But, it makes my RLS (Restless Leg Syndrome) worse -much worse.  It is for this reason that I need the Mirapex brand only versus a generic version.   I'm about going nuts when I sit longer than a half hour.  The legs have a constant need to move.  Apparently the gal that I talked to last Thursday didn't really put a rush on mailing the Mirapex like she said she would.  The gal today assured me it would be shipped tomorrow, marked for overnight delivery, at no charge to me.  At least they are taking some responsibility for the snafu!


Because my RLS has kicked in big time and my Arthritis has also kicked in, I made a trip to Walgreens to pick up another bottle of Tylenol (can't take the other types like Alieve, Naproxin, due to Colitis).  There was not a box of Tylenol anywhere in the entire store.   I'm stuck because apparently the Tylenol manufacturer has recalled all the Tylenol - AGAIN!  I did buy Walgreens private label Tylenol, came home took 2 and it's done nothing for me, except make me feel hyper!   


I wonder if they make one of those medical alert necklaces that could say "Brand Name Only."  If I had remembered to tell the NP that I needed Mirapex instead of generic, I wouldn't be in this "holding pattern."  Hmmm, I think we still have my mother's antique cow bell in the basement.   That might work!   "Brand Name Only" could be engraved on it.   It could be worn around my neck and always be with me.  he he - wouldn't that be stylish!


I'm always willing to try a generic - it does cost me less.    But once I have tried the generic, and if the generic doesn't work, I NEED THE BRAND NAME!!!    


Have you noticed a difference between brand name and generic on any of your drugs?


Sorry if I'm sounding grumpy - I am.  The fact that you can't buy any Tylenol presently just pushed me over the edge because my entire body hurts.  (added note just before publishing: The Walgreen brand Tylenol made me hyper last night.)   


I shouldn't complain because some people today can't even get a prescription drug that they desperately need because there is a drug shortage, brought on by the drug companies themselves I hear, so they can raise the price of the drug even more.   Hmmm, now I wonder if this is what Tylenol is doing!   Food for thought!


I hope you will come back again next week.  I promise to be in better humor.  
   
Mary


Update at 4:00 EST- YAY - the Mirapex came.    I'll be a happy camper tomorrow.   

Thank You To Debra

Mariodacat whiffin the leaves

Dear Readers,

First a public thank you to Debra of http://manxmnews.blogspot.com for sharing her knowledge and first-hand experience with PD in the blog post of 10/8/11.    I am so happy @AdmiralHestorb's mom introduced us on Twitter or we might not have found each other.  Debra, you have been so helpful to me already with your sharing, caring, and support in emails.  This is exactly the type of thing I was looking for when starting this blog - a way to learn together and share.

There have been so many great comments and suggestions left by you dear readers.  I've learned from each one and will take time now and then to address them in a blog post.

One of the first comments left was from @jbkitteh.   His human/staff person had just lost her mother to Parkinson's and dementia and was headed out of town to be with her family, but took time to read my blog and share.   She is the one who suggested I pick up the book The Parkinson's Disease Treatment Book, by J. Eric Ahlskog., M.D. (PD expert at Mayo Clinic).   I'm so happy she did too because it's a great book.  A little thick perhaps, but it has just about anything you would want to know in it.    She also mentioned that there are drugs out there that can cause PD symptoms.   Needless to say, that comment peaked my curiosity and I had to do some research on that subject.

Page 57 of The Parkinson's Disease Treatment Book by J. Eric Ahlskong, M.D. does indeed list Drugs that cause Parkinsonism.   I will list those drugs that are mentioned in his book.   IMPORTANT:  I want you to promise me that you will NOT stop taking these drugs without talking with your doctor first.  Most of the drugs mentioned are used to treat psychiatric disorders, psychosis, etc. The purpose of this list is to make you aware only so you can check with your doctor to see if the benefits of the drug outweigh the risk.   I am no doctor.   I'm simply sharing my very limited knowledge with you.

The medical field knows that when your brain is lacking in Dopamine, you may exhibit Parkinsonism symptoms.   Some of these drugs are known to "Block Dopamine Receptors,"  

Aripiprazole, Chlorpromazine, Haloperidol, Loxapine, Mesoridazine, Mesoridazine, Molindone, Olanzapine - in highr doses, Perphenazine with Amitriptyline, Thioridazine, Thiothixerne, Trifluoperazine, Ziprasidone, Amoxapine, Metoclopramide, Promethazine, and Chlorpromazine.

The book also lists:

Valproic Acid - used to treat Migraines, Seizures, Psychiatric disorders;    It's unknown how this relates to Parkinsonism.

Amiodarone - used to treat heart rhythm disturbances - again unknown as to how this relates to Parkinsonism.

Some of the comments received have been from people indicating they have a relative with PD.   If you ever wish to share your knowledge on the subject, please just leave a comment stating that.   The more input we have on this subject, the more we learn.

On a lighter note - this morning Don and I went to Sam's Club for a few items.  Well, that store is gigantic!    Instead of taking my walker, I decided to push a cart because we were picking up several items.  I did not remember that a cart gets heavy as you pile things in it.   I was wiped out by the end of the excursion and wondered if I'd make it back to the car (which was parked in a handicapped area).  

What really makes me feel bad is that Don had already spent about an hour this morning mowing up a large bunch of leaves to drag to the curb (we could hear the truck used for picking up leaves navigating the streets near us).    Because it's supposed to rain on Thursday for sure and maybe tonight and/or some tomorrow, he wanted to get as much picked up as possible while it was dry.   Anyway, he was breezing thru Sam's Club like he was 20 years younger.   I'm happy he's doing so well, but I feel badly much of the time that I can't do more to pull my weight around here.  

Until next time,

Mary