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.


Mary

OMC - That Was So Scary!

Permission received from KokoroPurrs to use this Cartoon
http://kokoropurrs.blogspot.com/2011/11/why-cat-need-faster-computers.html

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.

Mary

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