Saturday, December 24, 2011

Visit With Neurologist - Merry Christmas

Dear Friends,

Wish I could say I have some good news after visiting with the neurologist yesterday, but I don't.   I clearly believe he doesn't know what to do with me.   I did catch him on a day where he had 10 patients waiting in the same waiting room to see him.   Maybe it was a bad day for him.  Usually he takes whatever time you need, but not yesterday.

I am more shaky again.   He wants to add another drug to my cocktail.  Sorry I can't give you the name because he's having it called in to our mail order pharmacy so I can get a 3-month supply.  (Hope it works)!   If i would have been thinking clearly when I saw him, I would have had him phone to a local pharmacy to try for a month, but as usual, I wasn't comprehending fast enough to keep up with him.

He did make the comment tho that if this didn't work, he'd put me back on the Levodopa/Carbidopa combination again.  He asked me what ever happened to various drugs that he had prescribed, and was I taking them.   No, I'm not taking them because they were doing strange things to me - a combination of being dizzy, losing my balance rapidly, and/or making me sick to my stomach and throwing up. Each time I stopped a drug it was because I called his office, told them the side effects being experienced, and he said to stop the drugs, thru the nurse I was talking to.   I would think my chart should have been noted as such, but clearly it was not - or he was too busy to notice.   I am going to sit down and write him a letter on Monday right after Christmas reminding him of all this.  Then I will take a copy of that letter with me on my next visit in 6 months - if I don't call sooner and ask to get in to see him.

I also brought up the fact that I had gotten sick to my stomach about 3 times in the past 2 weeks, and i thought it was from one of my drugs.   I also mentioned to him that my family doctor had prescribed the pain killer for my back along with Tylenol.   I think the added drug is what is making my stomach upset.    

I'll be seeing my family doctor the first week of January, so plan on having a long talk with him on the best course of action.   I'm very tempted to get an appointment in Milwaukee with Don's doctor (not thru the VA tho, because I'm not a veteran).   That doctor is a Parkinson's specialist working out of Froedert Memorial Hospital.  But there is no point in trying to get an appointment with her now because of winter driving.  It will have to wait until spring/summer when there is no worry of a snow storm making a 2 1/2 hour drive into a 5-hour, nerve-wracking trip.  It's nerve wracking as it is just driving in Milwaukee.

The above picture is the front of our house - taken last Christmas.  This year we are minus the outdoor lights and have snow on the ground - thanks to mother nature delivering an inch yesterday.   I have to laugh because the weatherman has been saying for a week that it looked like we would have a brown Christmas this year.   Wrong again! he he - I still think they sometimes predict the weather by shooting darts at a dart board.   

Our daughter and her husband are coming early afternoon today and will spend the night here.  After we give them breakfast Christmas morning, they'll leave for Ken's family.   We were invited to do down there too, but have declined due to the hour's drive back home in the dark.   Neither Don nor I are up to that anymore.   I think we just may take in a movie tomorrow afternoon.  Or, we'll stay home and get ready for the Packer game in the evening.


I hope you all have a blessed Christmas, Holiday Season or Happy Festivis, as the case may be. 

Sorry for the "down beat" post at Christmas, but I wanted to document everything that happened at the Neurologist's appointment last Monday while it was fresh in my mind.

Thanks to you my faithful readers for taking the time this busy season to read my blog.   It is so appreciated.



Sunday, December 11, 2011

Christmas Brain Fog

Dear Readers,

The tree is up, the cards in the mail, and Mario is a happy kitty to be the added decoration under the tree - his favorite hangout place during Christmas season.  All the kudos go to Don for decorating the tree, and doing such a great job.  Other years, the job was usually mine after the tree was carried up from the basement and set in place.   It's amazing how things change in a year.

Getting the cards and letters out was a big job this year.   I've always relied on address labels and keep a current list ready to go in the computer.   This year Avery changed their template numbers - at least for the 8160 that I've always used.  Of course I had bought a new package of labels.  I can't tell you how many times I printed the same set of labels trying to get them to line up correctly.   I fiddled with the margins, changed settings, stood on my head, said a few choice words, called Avery, stood on my head some more, and said more choice words.  The air was turning blue, and even Mario didn't want to be in my office.  After Day 1 out of the 5 I worked on cards, brain fog was setting in, and I really didn't know what I was doing for the remaining 4 days.    

The long and short of the story is that some friends might get 2 cards and some may have been omitted by mistake.  I clearly didn't know what i was doing anymore.  Today Don confirmed one error after talking to his sister, who mentioned she had received our card and letter.   When Don was talking to her he was holding the envelope and card in his hand that we were going to mail out later today.    YIKES!  That's one we know about - how many others were duplicated and how many have been missed!

I hate living with this brain fog and feeling like I don't know what I'm doing.    Yes, it's probably the meds, but I still don't like it.  There are so many days where I feel like i'm mentally losing it.  A Twitter friend once told me 'Getting old "ain't" for the faint of heart.'    How right she is!!

ha ha- so if you are a friend who received two cards, count yourself lucky and save one for next year in case you are missed at that time.  If you were missed this year - well, what can I say...............maybe next year you will get one!


Thursday, December 8, 2011

Random Acts Of Kindness

Dear Readers,

The past two weeks I was out and about more - dentist one day - short shopping and errands on other days.  My faithful companion - the walker - was with me on each of those outings.   

Walkers on wheels are a great invention, but they are a little cumbersome to use, especially when going in and out heavy doors that don't have the automatic opener.  Going in isn't to difficult, but you do have to position your self off to the side of the door, open the door with the right hand, then slowly navigate the walker thru the door while holding the door open with your right hand or body - or butt.

Going back out when the door is heavy is a real challenge.   Again, you have to move yourself to the left of the door, hold the walker with the left hand, use the right hand to pull the door towards you, then swing your butt over to hold the door open while you grip the walker with both hands and turn the walker in the right direction to go out the door.   (Big rumps do help. he he)

I was pleasantly surprised at the dentist's office recently when a gray-haired man (probably close to my age) came over and asked if he could assist me.   I was struggling with that door - a room full of people all waiting to see the hygienist or dentist, and ignored by all except the nice elderly gentleman.   I was very grateful and thanked him profusely.   It was a random act of kindness that was so appreciated.

Then on Saturday we were invited to a birthday party for the granddaughter of a friend.   It was a rainy, drizzly day, so Don pulled in the driveway to let me out.  I didn't bring a walker because I knew it would be crowded in the house, and I usually don't need it in a house anyway.   Much to my surprise, the son of my friend walked out to greet me, offered me his arm for assistance, and helped me up the steps to his home.   Their entry way has wooden steps leading to a deck like platform - there is no railing.    That was another random act of kindness that was so appreciated.

When we got ready to leave, the other son of that friend asked me if he could assist me to the car where Don was again waiting in the driveway.   Another much appreciated random act of kindness.   I mentioned it to their mother the next day and told her she could be proud of her sons for their willingness to help.  So very thoughtful of both young men.

Then this morning I was attempting to get into Barnes & Noble's store and again was faced with big heavy doors that had to be manually opened.  Along came a lady who appeared to be my age and perhaps even a year or two older.   She said "Here, let me get that door for you!"  Another random act of kindness!

Thru the years I have tried to do the same for people struggling with a door and a walker or wheel chair.  I guess what goes around eventually comes around.

You never know when an opportunity will present itself so you too can perform a random act of kindness.  I do hope you will take the opportunity and "make some one's day" because, in time, you too will be in need of the extra help.   These wonderful people certainly did "make my day" and I'm so appreciative.


Monday, December 5, 2011

Chance Encounter

Photo from Blog of Dr.  Jefferson

Dear Readers,

I'm always amazed at the chance encounters available in the Blog World and Twitter World.   You just never know who you will meet along the way and from what country.

I'd like to introduce to you today Dr. Duncan Jefferson who lives in Australia.   I was searching thru the blog world a couple of weeks ago and happened on Dr. Jefferson's blog  I immediately took a liking to his blog and followed it.   He writes on medical issues and non-medical issues, and i have found his blog most helpful and easy to read.  

There have been times when I've touched on a subject, and a couple of days later he has expanded on that same subject.   I'm honored that I can provide him with some post ideas, and he certainly has helped me with valuable information.   So thank you Dr. Jefferson for reading my blog and taking an interest in the subject matter I have talked about.

Please go over and take a look around his blog - I think you'll like what you see.

Stay tuned later this week for my next post on "Random Acts Of Kindness."


Thursday, December 1, 2011

Dementia - Not Yet

Dear Readers,

The last of the leaves have been cleaned up, lawn mower put away, and snow blower ready to go, thanks to Don.   The above picture was taken about 10 days ago, the leaves have since fallen and the tree is bare.   Tonight we are to have snow!  Mentally, I'm not ready.

Well, there is good news and bad news for the week.   My 6-month checkup with the psychologist  was this week.   After testing, he asked me how I felt I was doing.   I said, "mentally I've slipped a notch - just in some areas".   He said he agreed with me.   I did slip a little in some parts of the test, but remained good on other parts.   It's an exhausting test as you are mentally challenged on every question or problem.  He didn't do the entire battery of tests.  Only did those that I scored poorly on 6 months ago.

Now 6 months ago I clearly remember the psychologist saying that I have a little Dementia.   This time I brought it up and he said "Oh, you don't have Dementia."   Now I know mentally I have declined a little since 6 months ago and the tests indicate I have declined, so did he make a mistake when he said I had the start of Dementia 6 months ago?   I can only suspect that was the case or he didn't clarify enough as to what he did mean, and I didn't question enough and accepted what he said. 

Why is this important to me?   Well, my mother's side of the family is full of Dementia/Alzheimer's history - starting with my grandfather (Dementia), followed by my mother, two of her sisters, and her remaining brother - all diagnosed  with Alzheimer's.  Because of this history,  the psychologist wants to see me every 6 months just to keep a handle on things and I agree.

The bad news is that I have declined a tiny notch mentally, but the good news is that clinically speaking, I don't have Dementia!    I can tell you that I'm in a mental fog a good share of my day, which I believe is from all the drugs that I'm on - most of which make me tired.   I can't seem to even prioritize things that need to be done.  Yes, I've tried making a list, but never am able to check off more than a couple of things a day on that list.   Several times a day I can wander into a room and wonder why I went in there.   I know this is somewhat normal as you age, but I think with me it happens more than what would be normal.  I'm talking several times a day.

The other thing I've noticed is that I've slowed down to a snail's pace physically too.   It takes me so long to accomplish anything.  Much of the time I feel overwhelmed at all that needs to be done around here leading up to Christmas.    The slowing down is no doubt the Parkinson's kicking in, and the drugs only magnify the problem.

To complicate matters, my back has been painful lately.  The MRI taken a week ago showed the arthritis in the spine has increased since 3 years ago.   My family doctor said I'm not a candidate for surgery (nor would I want it at this stage of the game), and the back doctor yesterday confirmed everything.   He did offer to give me a shot in the spine, but I'm not sure I want to go thru that.   I know it's risky to start fooling around with the spine.  I really can't stand upright for very long - about 3 minutes is max, then I have to lean on something or sit down.   So trying to accomplish anything standing up is about impossible.  Walking from the far bedroom into the kitchen is tiring on my back.   Don has been wonderful and has assumed so much of the physical work around here.  He does it willingly and without complaint, but i feel guilty not being able to do my share.  The spine doctor feels the weakness in my back and legs is due to the Parkinson's.    He's probably right.

Now on a good note - I bought a Nook, color, touch e-reader yesterday.   It's not the tablet, but one step down.  I'm able to navigate around it quite well, but typing on that tiny keyboard takes awhile as I keep making mistakes.   Kim says I'll get adjusted more after I've used it several times.   I do like it tho.   Now if i can only stay awake longer at night when I try reading.  Why don't I read during the day you ask?   Well, any time of day when I try to read, it puts me to sleep.  So, there is no good time of day for reading.

I called Kim for help and she walked me thru the process of getting the WiFi set up, something I've never had to do before.   She gave me some mini instructions, and now I should be able to read tonight.   It will be fun playing with a new toy!   I spent the extra money and bought the hard covered book that was available because I have trouble remembering things after reading.  All the information is on the device, but you have to remember what you read, leave the page, and do the steps involved.   It was just easier to buy the book for $8.00.

Stay tuned - next week I have an appointment with the Neurologist (I think it's next week).

Wednesday, November 23, 2011

We Are Grateful - Happy Thanksgiving

Dear Readers,

Just a quick update on my last post about the episode I had with freezing.   I'm sure now it was the drugs, so I've stopped taking the Gabapentin.  I'm sure that drug, combined with my Mirapex (which makes me sleepy) and with the Tramadol (which also makes me sleepy) I was just over drugged.  By noon on Saturday I was back to myself once again.     I believe the doctor prescribed that drug to help with the RLS problem, which is what the Mirapex also does, but wasn't quite doing the job any longer.   For now the Tramadol is helping with the RLS, so we'll leave things alone for now.

I'm so looking forward to dinner today.  We're invited to our daughter and son-in-law's house for Thanksgiving.   Our son-in-law loves cooking this special meal for his parents, his brother and girlfriend, and this year the girlfriend's parents, and, of course, Don and I.   He does a fantastic job, and this is his 12th year to treat us with this wonderful dinner.    We all bring a dish to help  out, but Ken does the basic meal along with special pies.  (Can't wait to see what pies he bakes this year - usually there are two kinds and sometimes three).   I always tell him that Kim's marrying him was better than marrying a doctor because he not only cooks, but keeps our computers in top shape too, and is so very good to our daughter and to us.

I'm very grateful for my wonderful family (especially Don who has been taking over with so much of the household duties and our wonderful daughter and son-in-law, and of course Mario.   I'm also very grateful to for our dear local friends and those wonderful friends I've met on Twitter and the blog world.  I am truly blessed.

Thank you dear readers for reading my blog and leaving your great comments.

Happy Thanksgiving to all of you.   I'm so blessed to have you in my life.


Saturday, November 19, 2011

OMC - That Was So Scary!

Permission received from KokoroPurrs to use this Cartoon
Dear Friends,

What a horrible night I had.  So, to cheer myself up and my readers, I just had to post this delightful cartoon by @KokoroPurrs.    His mom is a cartoonist and does wonderful work.  Her cartoon drawings of her cat  always makes me giggle.    Please take a minute and go over to their blog site and look thru some back issues of the blog.    She very graciously gave me permission to use some of her delightful cartoons in my blog.  (Mario is going to be so jealous).   

Now back to last night.   I went to bed at the normal time of 11:00 p.,m.   Some time during the middle of the night I felt the need to make a bathroom trip.   I tried to turn over on my side to get myself out of bed.   My body would not move.   I couldn't roll over nor could I sit up.   After struggling for a few minutes to get myself up, I started yelling for Don (who sleeps in the room next door).   He's hard of hearing, so he didn't respond immediately, but did finally come in to help me.   He had to help me up out of bed, and it was all I could do to lift my body with his help and to grab on to the walker.   Then my legs didn't want to move.  I felt like my body was frozen in time.    Finally I got them to take tiny, tiny baby steps to get myself to the bathroom.   After I finished what I went in there for, I had all I could do to raise my body to start walking again - well not really walking but taking tiny dragging steps to get back to bed.  Talk about scary.   If it would not have been the middle of the night I would have suggested going to the emergency room.   Something was drastically wrong.

This morning when I woke up, I could move enough to get myself out of bed, but my feet were still taking the tiny steps, and I really had to hold on to the walker for dear life.   After choking down some cereal, I went back to bed and slept until 11:00 a.m, and was more like my old self when I got up.  Still not real stable on my feet, but at least I could take my normal, usual steps.

I began to wonder if I was experiencing Bradykinesia that Debra discussed  in my last blog post.   Or was I progressing to the next level of Parkinson's?    It really scared me and I think it scared Don too.  

Then I happened to think today that I had seen my family doctor on Monday for back problems.   After getting the results back from the MRI and finding my back had worsened since 2008 (no kidding - I knew that before the MRI results were in), he gave me 3 new drugs to add to my cocktail!!   One of those is Gabapentin 300mg 2 x day.   This drug is sometimes used to treat seizures and used for RLS (of which mine has been getting worse).  I'll be calling the doctor's office Monday morning to tell him of these latest developments, but in the meantime, I dropping that drug.  

He also prescribed Clonazepam 0.5 mg 1 x day at bedtime.   This is used to treat panic attacks (I don't have that???).  The PAL says it clams your brain and nerves.  YIKES.     Now I'm not sure which one gave me the immobile symptoms, but I'll be stopping that one too until I talk to the doctor.  Fortunately, I had only started those drugs on Friday and it was Friday night when I had the problem.  So at least I don't have to go thru withdrawal symptoms.

The other drug he prescribed was Tramadol  HCL 50 mg 3 times a day with Tylenol - used for pain.  I'm sure Tramadol didn't give me the symptoms I experienced, so it has to be one or both of the other drugs.   I will take Tramadol before bed tonight along with Tylenol.

Oh how I wish I didn't have to be on all these drugs.   "They shoot horses - don't they?"  I've tried to maintain a sense of humor thru this entire time since being diagnosed with Parkinson's - but I must be honest - the humor is running out.