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

Guest Blog Writer @Manxmnews' Mom

Photo provided by Debra, Guest Writer, taken at the beach near their home in Florida

Hello,

I am Abby's Mom from Manxmnews.blogspot.com. Mary has graciously asked us to guest post on her blog and share our story with you about Parkinson Disease.

When your life partner and husband is diagnosed with Parkinson Disease you realize how dramatically life changes.

Several years ago my husband who was in his mid-50's noticed his left hand was having sudden slowing movements. He wasn't sure what was wrong so he went to see his primary care Doctor who in turn referred him to a Neurologist. The Neurologist confirmed he had a form of Parkinson Disease. The Doctor explained at the time that PD is like ice cream flavors, and that when the medical field refers to PD they are categorizing it as 'vanilla'. He explained that my husband had another flavor of PD and he was diagnosed with Parkinsonism.

Parkinson's disease is a progressive disorder of the nervous system that affects movement. It develops gradually, often starting with a barely noticeable changes. Most people are familiar with seeing people with tremors but I think that some people may not know that Parkinson's also covers a slowing or freezing of movement too.

The symptoms of Parkinson's disease will vary from person to person. Early signs may be subtle and can go unnoticed. Symptoms typically begin on one side of the body and usually remain worse on that side even after symptoms begin to affect both sides.  In my husband's case it started affecting the left side of his body. It began in his left hand and has now progressed to his left arm and leg. It has also affected his speech, voice, and the ability to swallow.


For many many years my husband refinished antique furniture. He had to work with some very strong chemicals. In researching PD I found that there is a very strong correlation between PD and farm workers who have been exposed to harsh chemicals and pesticides. This has made me wonder if there is also a cause and effect between the chemicals used in refinishing and PD. I can't begin to tell you how important it is to use caution when working with strong chemicals .


He has always been so active and it's been hard on him to know he has limitations that are beyond his control. Parkinson's  has impacted his stamina as well as his ability to move easily. Parkinson's is a progressive disease and it will have a greater impact him as he ages. It has meant changes in the things he can do that we both once took for granted.  But we are fortunate and we can work around these obstacles. Parkinson's is hard because there are physical inabilities, and mental ones as well.

There's no cure for Parkinson's disease, but medications can help control some of the symptoms of Parkinson's disease. My Husband takes a carbidopa/levodopa drug called Sinemet which has been his lifesaver. He has had to adjust the dosage over the years to keep it working in his system.

Living with any chronic illness can be difficult, and feelings of anger, depression, or simply feeling discouraged are normal. Parkinson's disease presents special problems because it can cause chemical changes in the brain that can make a person feel anxious or depressed. And Parkinson's disease can be profoundly frustrating, as walking, talking and even eating become more difficult and time-consuming.


Debra

You can visit Debra's delightful, beautiful kitties -   Abby, Boo, Gracie, Jinx & Ping at their blog:   http://manxmnews.blogspot.com/2011/10/mamas-cup.html   Wait until you see Debra's stunning photographs.

Thank you so much Debra for your excellent post.   I learned a few new things from you.   I do see myself in some of these symptoms.  But, more on that another time.   Your insight and information is greatly appreciated.   As I have mentioned to you before in emails, it's so sad when a young person (yes, 50's is still young) has this disease.  At least it hit Don and I at an age when we expect to get some chronic disease or illness sometime soon.    Kitty kisses from Mario to Abby, and a big HUG from me for doing the post. 

Readers, please feel free to leave comments for Debra.  I get an email on all comments and can easily forward them to her, or she can visit the blog and see them that way.

Solution II - Help From The Most Amazing Places

Fall in beautiful Wisconsin

Dear Readers,

Having made the big decision to stay in our house led to another problem.   How to find help for some of the work around here.

Don used to do most of the handyman things himself - fixing things, minor plumbing problems, etc.  We started hiring things like that out about 10 years ago after he had a knee replacement.   We have a good list of resources available now for the handyman type of jobs, if needed.

But.... what to do about yard work (mowing, fall cleanup, and the inevitable moving snow around)?   We live in a neighborhood consisting of more retired folks than young families.    We have no neighborhood kids to hire. 

We were discussing our progress with our very good friends at breakfast one morning (2 couples whom we are good friends with,  have camped with,  gone on cruises with, and had breakfast once a week with for 30+ years).   I happened to mention we'd probably need help with some of the yard work: mowing, fall leaf cleanup, snow shoveling, etc.   My thought was to start calling ads in the local newspaper.

Well, to make a long story short, one of the couples called me later that day and asked if we'd be interested in hiring their 13-year-old grandson who was just starting to help with those types of things a home.   Prayers had been answered! We know the grandson, his sister and parents so well too because they are part of our camping group (we gave up camping last year because it was getting to hard for us).  Harrison and his sister were practically born on the campground with us.  (Not really, but they camped as babies still in diapers.)  A very lovely family.

What a blessing it has been to have Harrison's help (and his dad's help too).   There are times Don felt like mowing and there were times he didn't.   Harrison to the rescue!  I don't know what we would do without him, and Harrison is happy to have green papers to spend.  it's a win-win situation, and sure has helped us out. 

Just this past week, leaves began to fall off the trees.  We have 2 old, large trees in the back and one tree in the front.  Harrison just mowed them up last Friday for the first time - now the yard looks like this again, and it's only 6 days later.   By the way, the front yard barely has any leaves on it - that tree is waiting to shed after the backyard is thru.  Sometimes I think the trees talk to each other and plan this on purpose.

Leaf cleanup will extend probably into the first week in November unless snow arrives before then.  (Parish the thought!)

We are so very thankful for Harrison's and his dad's help.   They are a blessing to us. 

So, it looks like all our problems of how to manage the work are solved for this year.  Maybe Harrison will want the job next year too, but we'll cross that bridge when we come to it.

Don and I are so fortunate to have a wonderful support system of good friends that we can discuss things with and have some fun with.   Another blessing in our life. 

Now for some news:  I'm very excited to announce that I'll have two guest bloggers sometime in the next few weeks.  They both have experience with PD, but from a different perspective.   So stay tuned - both are Twitter friends.  But I'm keeping their names secret for now.

Thanks so much for visiting.   I do hope you'll come back again. 

Mary

Solution No. I - Stair Climber

Hi Friends,

I swear Twitter and Blogs are the best places to hash over problems and find solutions.   After we decided maybe an apartment was not such a good idea, the problem still existed of handling the stairs to the basement, and some of the other work.  

A good Twitter friend of Mario (and me too actually) suggested we check out a stair climber.   She even forwarded a link to a site that sells them.   I never thought of this myself, and really didn't even know they existed.  

Rather than order from some web site where they just ship it to you (sounded a little scary to me), I decided to call one of our local home medical supply stores in our city to ask a few questions.   They not only sold them, but would also install and service down the road should there be any problem.   We made arrangements for the salesman to visit the next day to discuss the possibility of one.

Now these gizmo's are not cheap.  In fact, you are looking at about $4,000 installed.   Expensive yes!    And, Medicare would not help pay for it.   Since I'm the one that was having trouble going up and down stairs, Don left it up to me.  In fact, he made it very clear that he did not intend to use it.

Quite frankly, he needs it as much as I do, only for different reasons.  His mobility is good, but he has a habit of carrying things up and down the steps without hanging on to the railing.  He's an accident waiting to happen.  But, it was a macho thing with him.   He can handle the steps on his own, thank you!!!   None of this handicap stuff for him.

Obviously I did decide to have it installed because you are seeing pictures of it. It is the BEST! I'm so happy I made the decision to get one. Now that it's been here for a couple of months, Don does use it - not to ride in himself, but he does pile things on it to haul up and down the steps. I'm so thankful for that. If it prevents him from falling down the steps, it's well worth the investment. I still try to take the steps manually at least once a day and sometimes more. It just depends on the day and what I'm up to handling.

The guys were able to install it in 3+ hours, and I had my first ride to test it out.   When we built this house, little did we think 35+ years ago that the steps should be made wider by an inch or so.  What did we know - we were in our late 30's and wasn't thinking down the road to 60's and 70's.   But the stair climber just fits.   Don's knees don't have more than an inch of clearance from the other wall, but he's able to ride it if necessary.  

I was worried that Mario might be afraid of it, but he just watched it in fascination.  After it was in the house for about 2 weeks, I picked him up one day and put him on my lap for a ride downstairs.   He didn't fight it, but well, he's a cat, and cats don't like to be forced into anything.  Thus, he was more than willing to hop off my lap when we were 2 steps from the bottom.

We are very happy with it and would never hesitate to recommend it to anyone who might be in need of one.   As a friend told me - it's probably cheaper than moving and paying rent.   She is so right.

Stay tuned to see what other problems we can solve.

Mary

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