Hey y’all, for those that read my blog, I’m sorry if this first part is a no brainer.
My name is Joanne aka as Camsgranny, I am the daughter of a Parkinson’s patient. My Momma was diagnosed with Parkinson’s about 4-7 years ago, it is really unclear at the time, because she was mis-diagnosed several times.
So what is Parkinson’s? The official definition is it is a chronic and progressive movement disorder that involves the malfunction and death of vital nerve cells in the brain, called neurons. Some of these dying neurons produce dopamine, a chemical that sends messages to the part of the brain that controls movement and coordination. As Parkinson’s progresses, the amount of dopamine produced in the brain decreases, leaving a person unable to control movement normally.
Over the year’s I have done a lot of research on the topic, simply because I had no idea what the Farmer (My Dad) and I were looking at. Momma has gone through a progression of symptoms.
The Farmer and I are her main Caretakers. In recent events where things had gotten pretty bad and Momma was in ICU for about 1 1/2 weeks, and then sufficiently recovered to go to a Nursing home and she participated in TONS of therapy. Momma is now at home, and we have some people come in and assist us with her home life.
Through my blog I have met some other people who, while are not in MY shoes, they are in their own shoes. Spouses, Sons, and some really young people who have been diagnosed with this disease.
The biggest thing about this disease, is that it affects everyone differently. Parkinson’s Disease is a neurological disorder. The cause is not known. It is also not necessarily an inherited disease. Researchers have found that people with an affected first-degree relative, such as a parent or siblings, have a four to nine percent higher chance of developing PD, as compared to the general population.
How many people have Parkinson’s? To me the number is staggering. An estimated seven to 10 million people worldwide live with Parkinson’s. In the United States alone, as many as one million individuals live with PD, which is more than the combined number of people diagnosed with multiple sclerosis, muscular dystrophy and Lou Gehrig’s disease. Approximately 60,000 Americans are diagnosed with Parkinson’s each year, and this number does not reflect the thousands of cases that go undetected. Incidence of Parkinson’s increase with age, but an estimated four percent of people are diagnosed before the age of 50. Statistics have also shown that men are slightly more likely to have Parkinson’s than women. (Someone forgot to send THAT memo to Momma).
Parkinson’s does not have a cure. It is mainly controlled with medication. Levodopa is the most widely prescribed medication, with often several other medications to manage the disease.
The symptoms vary from person to person, but there are four key motor symptoms. Tremors in the hands, arms, legs or jaw; muscle rigidity or stiffness of limbs and trunk; slowness of movement (bradykinesia); postural instability (impaired balance and coordination). (I’ve seen this one first hand). Other common symptoms may include pain; dementia or confusion, fatigue, sleep disturbances; depression; constipation; cognitive changes; fear or anxiety; and urinary problems.
The next question (at least to me) is Can people die from Parkinson’s? Parkinson’s is a progressive disorder, and although it is not considered to be a fatal disease, symptoms do worsen over time and make life difficult. People with Parkinson’s experience a significantly decreased quality of life and are often unable to perform daily life activities. (In our case, Momma is unable to get out of bed, nor perform bathing, getting dressed or walk without assistance. She is also no longer able to swallow, and has a feeding tube that was surgically put in her stomach for her to get a food supplement and also all of her medications. ) There is a progression of the disabling symptoms. People have died from Parkinson’s related complications, such a pneumonia.
While some may look at Momma’s circumstance and say that’s not a life, believe me, she has days that she will charm the socks off you, and is the life of the party. But we also have days where Parkinson’s grips her and it gets rough.
The Parkinson’s Quilt Project is the first global quilt project to focus the world’s attention on the nearly one million people in the US and seven to 10 million people worldwide living with Parkinson’s. The project aims to raise awareness of the impact that the disease has on people living with Parkinson’s – along with their families, caregivers and friends – and on our continued urgency to find a cure.
Over the past year, more than 600 people created quilt panels, each of which measures 2’ by 2’. Panels include photos, illustrations and items that express each quilter’s experience with PD.
After finding out that April is Parkinson’s Awareness month (ok, I may be a little late but someone forgot to send ME the memo). I am trying to raise awareness for this nasty disease. I’ve experienced it first hand, as the Caretaker of my Momma. Somedays are frustrating, some days are outstanding. It wears on you at times. Somedays you want to throw your hands in the air and say I give. But then you look at the person suffering from this disease, and you realize, if I feel like this, I can’t imagine how they feel. Momma has expressed her feelings to me, and sometimes it’s painful to remember these conversations. She is scared, terrified, frustrated, depressed, sad, mad. She has good days, and bad days. But then out of the blue, she comes around and it’s kinda like it was in the days pre-Parkinson’s, and we laugh and giggle and she’s full of piss and vinegar. But folks, that’s My Momma, and the Farmer and I are in this for the long haul.
Today was a little different. Today is our long day with Cam-Man. Momma had a doctor’s appointment though, so the Electrician went and picked up Cam-Man, and spent the day with him, while I went over to the Farmer’s and gave Momma her meds, breakfast, and then loaded her up for her “road trip”. Momma was “excited” about her road trip. We don’t have a wheelchair ramp yet, but the Farmer located some ramps that we used. (They are for loading up a lawnmower or such into the bed of a truck). We made them work, and it was a nice roll out to the car. I had been apprehensive about this part, because I was not there when the Nurses assisted Momma into the car last Friday.
Whew, it took a few minutes but it was fine. Off down the road we went with Momma singing and humming to the music that filled up the car. She chatted with the Farmer and then suddenly after about 20 minutes, Momma went straight up Parkinson’s. The type where her lips disappear, and she starts shaking. I reached around the seat to her, I was in the back, she was sitting in the front seat, and hugged her, and tried to get her to settle down. She calmed for a bit, but not much. She was due another dose of medicine but not for another 45 minutes. I think that a lot of it was Momma was out of her “friendly” environment.
When we got to the hospital, I went and got a wheelchair, and assisted Momma out of the car, with the Farmer. We went in the elevator up to the 6th floor and into the Doctor’s office. We got into the exam room, and seriously, I do not know what happened. One minute Momma was ok, but when the Dr. came in she got a panic attack and stared coughing, and nose running and almost choking. She has NEVER done that before. We got her calmed down but it broke my heart because there were tears falling from her eyes. Momma was scared.
All in all the appointment went well, except for me. I had been so diligent in mixing up Momma’s meds and the appropriate amount of water to flush her tube before and after the meds, except I forgot one thing. (Insert head smack here) I forgot the syringe. I thought about it half way there, to far to go back and the only thing to do was finish heading down the road, but I thought that the Doctor’s office might have one (heck it’s a friggin Hospital). The Doctor’s Nurse and the Doctor did try to find us one though, and for that I say they went above and beyond. But unfortunately, one could not be found that was the right size. So, off down the road we went. The trip home, was pretty much the same as the way there, except I told Momma, “Hey, close your eyes and snooze until we get home ok?”. Well, I did, but she didn’t.
I woke up before we got home, and asked the Farmer “how is she?” “The same” was the reply. We pulled up in the driveway, and Momma kinda sighed, I think she knew she was home. Out of all of the “transfers” I had done today, this one was the hardest. Momma tried to help, but at one moment I was sitting in the wheelchair holding Momma up, ok, call me crazy I don’t even know how it happened, but we got turned around and Momma ended up in the wheelchair.
The Farmer wheeled her back up the ramps, and we were back in the house. Momma seemed to relax a bit. I went straight for the syringe and the meds, and promptly gave them to her. The Farmer left again to go vote (today is Election day here in Illinois).
While he was gone, I sat and calmed Momma down, went and threw the laundry into the dryer (that I had started this morning). Then asked Momma how she was feeling. I felt so bad when she started crying and said “I’m so sorry Jo, I do love you”. I talked to her for a bit and explained to her, that I loved her too, and I only wanted to make her happy and feel comfortable.
We got that all straightened out and I asked her if she wanted to sit in her chair or go lay down and take a nap. To which she replied, “What would make you happy?” “Whatever makes YOU happy, will make me happy” is what I told her.
She looked at me, grabbed my hand and then said with a little smile “I wanna take a nap ok?” We both started laughing and I took her into her room, and laid her down in bed, tucked her in and gave her a kiss, and “sleep well ok?”
The Farmer came back and remarked at how much better she looked. She smiled at him, and then I left. I flew home, and joined Cam-man and the Electrician. They were outside watering the new grass the Electrician had planted, and then both the Electrician and Cam-Man took me to the park.
I can’t tell how much the 3 of us laughed at Cam-Man going down the big boy slide, to a 50-year-old woman swinging on a swing right next to her Grandson. To the Grandson and Granny riding on the thing that makes you dizzy (it just goes round and round, and man, the Electrician gave me and Cam a ride!) We both kinda wobbled after that.
When we got back to our house, Cam-Man had a bowl of sherbet and then the Fisher dude showed up to take Cam-Man home.
My day has been full of loved one’s and events. Me, I’m kinda tired. I thank the Electrician for picking up some of my duties, and Momma, tomorrow will be better. To the Farmer, uhm..it was an adventure, and I promise to PACK everything that we will need in future roadtrips…to everyone else, hope your days are good too. Night y’all
Ok, I was in the middle of making my post last night when WHAMMO, lights out everybody. Yup, here it is in 10″ weather and there was ice on the road, the Electrician and I were sitting here in the comfy warmth of our house. Ok, so we may have been gone in some uhm 80′ weather and coming home to this well…it leaves A LOT to be desired.
Apparently, someone slid on the ice and hit a power line so my small town, and surrounding area was without power for uhm…about 6-8 hours last night. Us? Well we lit some candles downstairs and shut all the doorways, except we forgot Ms. Baby who was lounging in the garage. She promptly made her presence known on the other side of the door. We let her in and she ran straight to the bedroom and cuddled on the covers.
The Electrician and I sat here in the dark, and just talked. We talked about the Cruise, we talked about our adventures, and then…it got cold. I heard a noise, and started laughing. The Electrician heard it to and he started laughing to. You see, this past summer, my neighbor decided that since last winter was so rough and they had enough, they bought a generator and had it hooked up. So, while we were freezing in our house, my neighbor had his generator hooked up and was the only one within a 15 mile radius that had power AND heat.
The Electrician and I decided to heck with it and we went and cuddled up in the bed with Ms. Baby warming our feet because she was at the foot of the bed and WOULD not move.
So, when the phone rang this morning at uhm….7am (DAMN don’t our kids EVER sleep?) We both sat up in bed and said what the Heck? It was the Nursing Student, she was bringing both boys over at 8:30 so we could watch them this morning while they went to a seminar.
Don’t get me wrong, we all had a blast…uhm..let me back up a bit….The boys arrived, and Papa (AKA the Electrician), took off to go Grocery shopping leaving ME with 2 little people under the age of 3….OK…the last time I did this I was uhm…age 20, hey 30 years isn’t that bad right? There is a lot to be said with having kids early. Being a Granny at age 50 is ok too, I did fine. I may be pretty damn tired right now, but we made memories.
The boys and I made cookies, and my hope is that someday they remember that. We had fun and ate some pretty damn good cookies too. Plus, the look on Brayden‘s face when he told his Daddy and the Nursing Student that “Him and Cam-man” had made the cookies with Granma’s help was Priceless.
The Nursing Student and Fisher dude took home a BIG bag of cookies, – hey I kept some too, and the Electrician said they were pretty good.
So all in all it was a really good day with the Granbabies. But I forgot to tell you what I did when the Babies left. I went to see Momma.
Momma was laying down in bed when I got there. The Farmer was sitting by her side, and they were “sharing” a moment. There was a concert going on in the Rec room, there was a lady in their playing the accordion and playing some good music. I brought in Momma’s laundry that I had taken home and washed and brought back, hung it all up. And then the Magic started.
There were songs being played by Elvis, Frank Sinatra, Dean Martin and the likes. Momma and I started singing full hilt. I grabbed her hands and we “Bed danced” Momma smiled and giggled, so did I and I think the Farmer enjoyed it too, although he kept talking about “The Ring” (it’s an Opera). I asked Momma about the Opera and found out something new about her and the Farmer, I’ve never seen an Opera and I’m not quite sure about it, but they both have attended and enjoyed it.
I hung out for a bit and then it was time for me to go. I made sure Momma had exercised her vocal cords, (which she did) her voice is getting stronger and that makes all of us happy.
Tomorrow, is Movie with the family and the Farmer is going to take Momma to the Movies to watch “Dolphin”. I think both of them are excited about it. The Electrician and I are going to visit Momma in the morning and leave the afternoon for their time.
Me? I will probably be taking a nap to recover from today with the Granbabies, and catch up on some sleep. Hope ya’ll have a good night!!!
Well….today was….special. Per a previous agreement between the Electrician and I, I was going to carry on today as normal, and we will celebrate our anniversary on another day (Uhm…Saturday).
So, I was a little sneaky and left him a card next to his coffee cup, and cereal bowl. I woke up to a lovely letter on the desk. (I told you guys I love this man). I started my day off pretty normal, until I logged onto Facebook and I guess alot of people pay attention to that little reminder thingy, because I had quite a few Happy Birthday posts. My first response was to say “Bite Me” on them but well, I said thanks instead.
As you can tell I’ve had a few reservations about this birthday, but ya know what? Like the Electrician told me, it’s just an age, it doesn’t change you, and besides, fine wines get better with age. (see why I love him?).
So with all that being said let me tell you why today was special. I got ready and went to the Farmer’s, and had a little chat with him (uhm it was really short cuz I was late, and NO, I did not sleep in, I played words with friends on Facebook, did a load of laundry and drank 4 cups of COFFEE..hehehe). And I had to stop for gas, and visit with my “twin sister” Jill who told me to go back home and look in my mailbox (she lives right around the corner from me, and next to the Electrician she is my “best friend”.) So, I drove back home and checked the mailbox, (probably a good idea before the mailman saw what was in it.). I laughed and smiled, she had left me a card and a present….enough said about that one. I love her.
Anyhoo, I got Momma up, bathed and dressed, and we exercised, she is getting really good at doing the bicycle with her legs, and then she gets her arms moving and whammo, she’s flying. We got her dressed in the last of her new duds and she really looked spiffy. When I woke her up and got her up she said to me who’s taking a picture? I had just shown off my birthday present from the Electrician, to the farmer…..yup, I got one of those new fangled cellphones that takes pictures. (Uhm, watch out when I figure out how to upload or download those suckers…). And then she grabbed my face and gave me a kiss and told me “Happy Birthday Honey”. AWWWWW….
I cooked breakfast, today was a Special day so it was bacon, eggs, and fried tator’s (I love anything potato). Then proceeded to make brownies (for the Farmer’s Christmas party this evening), make (okay open 3 cans of Bush’s Bourbon baked beans and put them in the crockpot) baked beans with bacon (ok I fried the bacon and the kitties got a couple of pieces too, HEY it’s my Birthday I can do it…hehehe, they needed to celebrate too). Laundry was accomplished and then…down the road I went.
Where you ask, uhm CAM-MAN, I scooped him up from the Nursing Student’s house (where she was already down for a nap, because she works tonite and I had to wake up Cam), We snuck out of the house and down the road we went to my house, where I thought he would take a nap, uhm…yea ok, who am I kidding? He slept for about 30 minutes and then started yelling. So, I went and got him up, changed his pants and downstairs we went . We played for a bit and then the Electrician called me, did I need anything and did I buy ice? Nope I forgot to buy ice, uhm sorry. He said he would be home in 5 minutes. Mind you, he did not know Cam was there.
When the Electrician pulled up to the house (he didn’t pull into the driveway because he knew I had to leave again) Cam-Man was sitting in Ms. Baby’s spot in the Garage window. Cam was smacking the window screaming “HEYYYYYALDKGIFGPRPR”, and then Poppa saw him, and broke into a grin. Cam-Man was waiting at the door when his Poppa came in the door, and there ensued a major hug and kiss scene. (Seriously kids, it’s only been about a week since these two have seen each other, but you would have thought it was years.) Cam-Man helped Poppa (AKA the Electrician) bring all his stuff in and then the playing started in earnest.
What can I tell you? To watch my husband play with his first Grandson and watch on the sidelines, knowing that Cam-Man will ask for his Granny at some point…well….My cup runneth over.
Time was spent playing, laughing and learning. the Electrician bundled Cam-Man up and I returned him to the Fisher dude, and then went back to the Farmer’s.
The Farmer had a Christmas Party to attend, and I was watching Momma. Momma wasn’t so good when I got there and I understand what he’s been telling me about the evenings. They don’t pick up until about 6:30 and then decline about 8:30. Don’t get me wrong, I had a really good time with Momma, but I really don’t like Parkinson’s, at all. She is there, sometimes, but then it’s like her mind is GONE, and I’m not sure where she is. She told me some stuff tonite, and well….enuff said.
I got home to the Electrician and well.. folks, I married my soul-mate and on the night of my 14th Anniversary (being together for 16 years). There is something to be said for all of this…it’s called a Blessing.
Hey y’all, this would be Brayden….He’s the top gun dude in the family. Brayden is one of our many grandkids (ok we have 4 but hey who’s counting?)… We just spent the afternoon and evening with this dude. He came over and then promptly went down for a nap, cuz well…it was nap time and we have kinda gotten used to putting the kids to bed and having an Adult dinner. (If that’s what you want to call it .) hehehe…
This lil dude really REALLY likes, Mickey Mouse. Apparently the thing this year is Rock Star Mickey, or so Brayden told me. We found it on the computer and we watched a couple of video’s of “Rock Star Mickey”. Hmmmmm Santa, you might want to pay attention to this one. The funniest thing tho…he whispered to Papa that he REALLY wanted this thing, and then yelled at Granny he REALLY wanted this thing. For some funny reason, I think he WANTS THIS THING. Hmmm… I’ll have to think about this. Because a couple of months ago it was the Dancing Elmo that caught his attention, until he got it. He still plays with it, but, I guess that Elmo has been replaced by Mickey. In the words of the Top Gun, Granny I really, really, really, REALLY want this. Play it Again, play it again was heard numerous times for the video.
Then there is this one, life is good. Cam-man, that is his name, his brother even calls him Cam-man. This kid is just straight up full of life, not wanting to stop for NOTHING! Make you laugh, not a problem, help everyone with giggles, not a problem. For the first time, he had a problem with taking a nap at Granny’s house. Uhm, I think that might be due to not having his favorite and best buddy…..
Yup, it’s his blankey, I refer to this child as Linus (there is no insult there, just truth.) This kid carries it around ALWAYS and when I take him from his home it is always part of the luggage. If he doesn’t have it then there is sure to be some sort of chaos to ensue. I have a blankey that is sorta like the one he cherishes but ya know what, it’s not his blankey and he knows when he is being fooled.
Today was a really good day, it was spent with the kids and grandkids, the kids MAY have been over shadowed by the grandkids but hey…sometimes that happens.
The Collage kid is home right now, and it was So good to see her….. I really love this kid altho, lately her and I have been fightin…..but….sometimes family does that but I want her to know that I love her with all my heart. Part of today was finalizing our Thanksgiving day menu…hehehe… The nursing student and I have split up the menu and that is so one person is not doing all the cooking. She has her list and I have mine. But the college student (not to be outdone) has volunteered to bring a cake to the festivities… I’m kinda excited about what she is bringing. She stated it is a better than sex cake….. Uhm…ok…BRING it girlfriend….hehehe…
Hey ya’ll… see this cute lil kid’
I have still been taking care of Momma, and today was a fun one. It is a long Tuesday, I went and picked up Cam-Man, and headed over to the Farmer’s house. Cam-man still doesn’t feel well, he’s teething and has snuffles, and gave his Granny a full-blown out cold. (Ok the Electrician says I’m a whinny butt, but when you can’t breathe uhm…it sucks). Anyway, we got to the Farmer’s house and uhm, well, the Farmer got upset cuz Cam-Man went full-blown crying to have to leave his Granny.
So, the Farmer went into his den and waved by-bye to Cam-Man, and Cam-Man waved bye to him, and then proceeded to eat a whole bowl of raisin oatmeal (YUCK), and a big mug of milk and then proceeded to get off the couch and go throw open the door to the den and say “Hey Gpa..qheuytsxrsfb” (Ok, he still speaks his own language but I think you get the drift.) He then climbed up into Great G’pa’s lap and sat there for a while talking to the Farmer…(I think the farmer liked it).
Momma had a good day, she watched “Sid the Science Guy” with Cam, and I made breakfast. It was a good day. We all enjoyed the time spent together.
Sorry kids, the Vick’s Vapor rub is getting to my eyeballs, I still can’t breathe, but I think I might start to be feeling better because ok, Thera-Flu is starting to work….
Ok folks, let me bring you into the picture….first off I am NOT techno savvy in any way shape or form. It took me FOREVER to learn how to use a cell phone and also to text someone. I live in tracphone era….I don’t want a contract because well… I just don’t use my cell phone that much.
Well, while the Electrician was on the road, the cellphone became our only mode of contact, texting each other about 1000 times a day and talking to each other 500 times a day, because he was on the road and that was his only mode of contact. He used his phone as his alarm clock and to contact me, his beloved.
Well…his phone should be in a graveyard, because well…it’s been used and abused, half the buttons are broke off, worn off and otherwise. So, The Electrician bought a new phone. I LIKE that phone, it takes pictures, and is really cool.
We have been trying to figure out his new phone together, and we sent Sissy a picture and a text (or so we thought)…uhm…whomever we sent the picture to “HI:…uhm…sorry….
Okay, I may be showing our age on this one, but I really LIKE this phone, so much that the Electrician just bought me one like his……well….I don’t want to be left behind….it may take me awhile to figure it out, but watch out peeps, Granny‘s got a new phone and well….hehehe…I’ll figure it out and WHAMMO ya’ll are gonna get texted (ok kids watch out, Momma‘s on a roll, call me butter) and Good times are a comin’.
My day has been wierd….ok.. I don’t know what to say.. My morning with Momma was fine. We did the regular thing and I got her up, bathed and dressed, and today was a GOOD day with her. I’m tired and I know it.
I came home, and read my stats on my blog, and then proceeded to read other blogs….I have to give this lady a shout out…that would be… Lifeintheboomerlane.wordpress.com , I read her blog every time she posts…. I can’t tell you about all the people I have met through my blog and friends I have made.
She posted a blog about Momma in laws today and funnily enough I got a call from my Momma in law today. She requested the year of my birth…uhm..ok…I am exactly 1 year and 3 months younger than her son, but she called me today to ask me the year of my birth, that ensued a 1 1/2 hour conversation..In the poll…uhm…I LOVE my Momma in law, and I consider her my friend.
So I’m not sure where I fit into the poll…but… gotta say I really like blogging and really like all the friends I’ve met and ok ya’ll this is just straight up cool…..
Okay Kids, sorry, but I’m excited, tomorrow is Thursday. For me that means the hardest part of my week is over, and I made It!!….WOOHOO….
It might sound silly, stupid or otherwise but the last 3 days have been a little long for this Granny. I love my Momma and I love Cam-man, but ok, I give, I’m a little bit older than I was uhm……30 years ago, and I’m straight up tired. I’ve missed the Electrician too…
I did ask the Electrician a favor tonite, and (head’s up Farmer) he said yes, so Momma will be going to the Doctor sometime in the next month. You see, the Farmer and I had a talk today (well we do everyday, but today was different).
Momma needs to see the Dr. more than every 6 months, Momma is getting worse and the Farmer and I see this, and maybe it’s just us but we see the progression alot faster now. I don’t understand why, how or whatever, but it is really sucking twinkies.
I can personally see the change just by looking and I don’t want the Farmer to have to deal with it all the time, and that’s why I’m there. I can’t Imagine being in his shoes, for I am in my own and I don’t like the view.