This one is off the cuff, and I promise not to delete it in the morning. I’ve done that a bunch lately. I have made a post and then wiped it off the face of the earth, because it left me feeling vulnerable..
Before I get into what I really want to say, I just have to mention, I truly had have a wonderful day. Today was Cam-Man’s 3rd Birthday, and the Electrician and I decided we are not moving anytime soon. It’s ok, because I truly need to be here for other reasons. Besides, that Cam-Man dude has wormed his way into his Papa and my hearts.
A friend, or shall I say Brother, has had a hard time lately. His Momma was affected with something kind of like my Momma is. Her time was up, and she was surrounded by her family, and she crossed over. So to speak. His pain is great, and I feel it, because at the same token, I am dealing with some of what he did.
I look at death with a different eye these days. It should not be a means for “selfishness”. Because we are truly selfish for our reason’s for keeping someone who has suffered enough to be here, simply because it will crush us, to have them go away.
It has taken me some time to get to this point. Why do we want our loved one’s to suffer, because we cannot let them go? At the point I am at, let them go. Let there be no more pain, let there be no more, what if’s. If they are suffering and have no quality of life, Let them go.
I truly believe there is a ‘Rainbow Bridge” for animals, and I believe there is a Rainbow bridge for humans.
I truly haste the suffering, and I hate the disease’s. Any of them, be it Cancer, be it Alzheimer’s, be it Parkinson’s. Any of them. I don’t like what they do to a person, nor do I like what we, as family members have to deal with. It ain’t pretty by any means, way, shape or form. Sometimes the pain for the person suffering through “whatever” they have just hits us smack in the face, and Man does it hurt.
I know what is expected from me, I deal with what I can, but sometimes, on this road, I stumble and fall, but I get right back up and go with it. That’s all I can do.
So, while y’all are out there dealing with whatever you deal with, just stop and think for a moment. Do I really have it that bad? Because 9 times out of ten you don’t.
It’s taken me a LONG time to realize all of this. I have a roof over my head, I have food to feed my belly, I am in control of all my body parts, (so far), Before I even begin to think I have it rough, I sit back and look at others. I’m not judging, I’m simply saying….Momma is still alive, and doing good. I have my health, I have peeps I love beyond all recognition, and God is smiling on me.
If nothing else, hug your kids and give them extra kisses, if your Mom and Dad are still alive, LET them KNOW how much they mean to you. Don’t ever look back and say “I wish I had…” Do it now,.
I may be 6 days late in advising that this month is dedicated to Parkinson’s Awareness. But…better late than never.
I have plans for this month, to try to bring awareness of this disease to my Community, and anyone and everyone that will listen.
I am a Caregiver to my Momma who is in Stage 5 Parkinson’s, I have watched the progression of this disease for about 10 years now. At times, we were never sure what “Stage” Momma was in, We are very clear now, though what stage she is in.
The funniest thing about this disease, is it, does not affect every person the same. There is no manuscript or instruction manual on how to proceed. Most times, we fly by the seat of our pants, especially at this stage.
I have talked with many different people about the disease. Most people, who have never dealt with it, and are under the “assumption” that is just “tremors” of the body. It is so much more than that. Parkinson’s disease is a degenerative disorder with no known cure.
Parkinson’s disease is the second most common neurodegenerative disorder and the most common movement disorder. It is characterized by progressive loss of muscle control, which leads to trembling of the limbs and head while at rest, stiffness, slowness, and impaired balance. As symptoms worsen, it may become difficult to walk, talk, and complete simple tasks.
The progression of Parkinson’s disease and the degree of impairment vary from individual to individual. Many people with Parkinson’s disease live long productive lives, whereas others become disabled much more quickly. Premature death is usually due to complications such as falling-related injuries or pneumonia.
In the United States, about 1 million people are affected by Parkinson’s disease and worldwide about 5 million. Most individuals who develop Parkinson’s disease are 60 years of age or older. Parkinson’s disease occurs in approximately 1% of individuals aged 60 years and in about 4% of those aged 80 years. Since overall life expectancy is rising, the number of individuals with Parkinson’s disease will increase in the future. Adult-onset Parkinson’s disease is most common, but early onset Parkinson’s disease (onset between 21-40 years), and juvenile-onset Parkinson’s disease (onset before age 21) also exist.
What causes Parkinson’s disease?
A substance called dopamine acts as a messenger between two brain areas – the substantia nigra and the corpus striatum – to produce smooth, controlled movements. Most of the movement-related symptoms of Parkinson’s disease are caused by a lack of dopamine due to the loss of dopamine-producing cells in the substantia nigra. When the amount of dopamine is too low, communication between the substantia nigra and corpus striatum becomes ineffective, and movement becomes impaired; the greater the loss of dopamine, the worse the movement-related symptoms. Other cells in the brain also degenerate to some degree and may contribute to non-movement related symptoms of Parkinson’s disease.
Although it is well-known that lack of dopamine causes the motor symptoms of Parkinson’s disease, it is not clear why the dopamine-producing brain cells deteriorate. Genetic and pathological studies have revealed that various dysfunctional cellular processes, inflammation, and stress can all contribute to cell damage. In addition, abnormal clumps called Lewy bodies, which contain the protein alpha-synuclein, are found in many brain cells of individuals with Parkinson’s disease. The function of these clumps in regards to Parkinson’s disease is not understood. In general, scientists suspect that dopamine loss is due to a combination of genetic and environmental factors.
There is also something called Parkinson’s Dementia, which is a whole other ball game.
Early in the course of Parkinson’s disease dementia, mental slowing is
seen. Another sign (In medicine a sign is what a physician finds by examining
a patient. )For example, a patient with the symptom of pain might have signs of a
fast heart rate, a pale face, a clammy touch and tenderness. is
mental inflexibility. Compared to people with Alzheimer’s disease, those with
Parkinson’s disease dementia have somewhat worse visuospatial function, although
at the early stages, this is usually demonstrated better by formal testing (such
as the clock drawing task) than is seen in everyday life. Hallucinations are
often seen in Parkinson’s disease dementia. The hallucinations typically consist
of seeing things that are not there. In Alzheimer’s disease, hallucinations
generally occur late (e.g. in the severe stage), but in Parkinson’s Disease
dementia, they usually occur early (when the dementia is in the mild stage. )
In fact, in Parkinson’s disease dementia, hallucinations can be an
early sign of dementia. Even when seen as a reaction to too much dopamine, they
can be a sign of dementia to follow later.
Symptoms that are more specific for Parkinson’s Disease dementia are a mild memory impairment that at first responds to hints and cues. just as in Lewy Body dementia, patients with Parkinson’s Disease dementia can show large changes in attention and alertness from day-to-day (one day they are able to hold conversation, next day the cannot). Other manifestations of fluctuation in symptoms are episodes of staring blankly, especially if occurs to such an extent that you find
yourself touching or even shaking the person you care for so that they will
“snap out of it”. Daytime sleepiness can be another sign of fluctuation.
Sometimes, for reasons that are not clear, the fluctuation in alertness can be
made better by making changes to medications that smooth out the level of
Parkinson’s Disease dementia is a progressive Progression
A disease that is increasing in severity; going from bad to worse over time. disorder that has an average length of several years from the beginning of symptoms. The cause of Parkinson’s disease dementia is still unknown, but it is thought
that there are many genes which contribute to the development, including some
that are also thought to cause Alzheimer’s disease.
In the course of the 10 years, I have dealt with this disease, I have done a BUNCH of research on the subject. If only to find a way that will make the Road Momma is travelling easier for her. It is not an easy road to travel, and my heart goes out to other Caregiver’s that are dealing with this disease.
If I can get the word out and help at least one other person who has questions, then I feel good. If my experience on this road helps someone else on the journey they are on, then I am not on the road by myself.
I do have to say, I have found friends through my blog, and we have helped each other, y’all know who you are, and I thank you, for making my road easier to travel, because I have found I am not alone.
I read an article in a magazine last month, and I was truly engrossed. As a Caregiver to Momma, I am all about finding out tips, or suggestions, from other’s that also occupy “my sort of world”. The article was very informative, with the exception, the article was written for an Alzheimer’s Caregiver.
Momma does not have Alzheimer’s, although I am familiar with that disease too. My Cousin/Aunt Kay had it, and it wasn’t pretty either. It seems to me that there are a lot of Diseases out there, and they are given a lot of time in the news, or front-runner of charities.
Momma has Parkinson’s. (I know you all know this, but go with me on my train of thought for the moment). While I acknowledge that Alzheimer’s is a very nasty thing, I would like to add that Parkinson’s rates right up there too.
But again, I digress, and I am famous for that. My mind is going so fast that I am having a hard time keeping up with what I originally started out to say. That happens to me sometimes.
The article that I read, gave some idea’s on how Caregiver’s could retain their well-being. It’s hard to be a Caregiver, especially if you are a Caregiver to a member of your family. There are so many dynamics that enter into the picture. You hurt just not for the person going through it, but also for all of the family members going through it with the person. Be it, Mother, Father, sister, brother, or you, the person that has it.
I am a unique person and I acknowledge this (I am not patting myself on the back here, I am letting you into my world). When I look at Momma, and I know momma. I see what she see’s. I put myself into her shoes, and I realize to an extent how it feels.
I would not like the fact, that I am no longer able to any thing by myself. I am at every one’s mercy for my well-being. I used to be able to get up by myself and go to the restroom and wipe my own butt, I could give myself a bath, I could dress myself, and walk by myself into the other room. I could grab my car keys and drive myself anywhere. I could form a sentence and carry on a conversation with anyone. I did not see things that are not there, I was able to carry on and eat anything I wanted. But now? Now I am reduced to not being able to do anything myself. I cannot even roll over in bed by myself. I am fed by a tube, and I so crave a simple piece of pepperoni pizza. I’m scared of the night-time, and I don’t like the dark. I have so many thoughts going on in my head, and I cannot make my mouth say them. Sometimes, I get the words out and I let my husband and daughter know how much I love them, but my mind is clouded and I cannot form my words. I choke on my own spit, and get scared. I had so many dreams of when I got older, this was not one of them.
These are some of the thoughts in my head, when I put myself into Momma’s shoes. I’ve talked to Momma, and these things are true. While Caregiver Beth and the Farmer, get some good things, Momma shares with me her innermost thoughts at times. I’ve carried this inside me for so long, that I am erupting in emotions about now.
I guess, as the Daughter of a Momma with Parkinson’s it is important for me to know these things. I only have my Momma’s best interests at heart. While I cannot easily say this does not hurt, because it does, maybe, it is something I was meant to do. Simply because of events in my life have led me to this point.
With all of the above being said, my true reason for writing this post was to put into motion that Caregivers, need Caregivers as well. There are times when I am so low that I cannot even see daylight. When I feel that the burden is too much for me to bear. But you know what? There is daylight, and there are great memories, and it is what it is. I am a very lucky girl. I have a family that loves me, and will not let me do this by myself. I have a wealth of Caregivers, who give me care. From the Electrician, who supports me and lets me do this, even while we may not have enough money that we need, to my kids, who just call me to say what’s up, to my friends I’ve met through my blogging world who keep tabs on me.
Life is a journey, embrace every moment, enjoy everything, tell each and every person that you Love, you love them. And at the end of the day, know that you have given your all. Sometimes life throws us some curve balls, just be ready to catch them, and above all, believe in your heart, and go with it.
I have been nominated for the One lovely blog award, by letstalkaboutfamily.wordpress.com. First off I would love to say Thank You. When I am nominated for awards, I kind of go mushy inside, and realize that people are really reading my blog, and sometimes my inner most thoughts.
letstalkaboutfamily, My friend Terry introduced me to her blog. It is a woman who is dealing with her Father who has Alzheimer’s. I have brief knowledge of this disease as well, as some of my family have dealt with it.
Since, I have received this award before, I already have the logo in my sidebar, For those of you that have read my acceptance “speech’s”, you know I don’t necessarily like to nominate other people, because so people do not like to get awards.
But I will tell you, that if I find a blog that I really enjoy, I usually try to share it with people that read my blog.
Yes, I am the daughter of a Momma who has Parkinson’s. I am no different from the Sister of a Parkinson’s brother, or the Wife of a husband who has Parkinson’s or the Husband of a wife that has Parkinson’s.
Our lives are filled with daily care, or hopes that something will change. It doesn’t. We have voices and we use them. But unfortunately our voices are not heard.
Everyday, Cancer, Alzheimer’s, and other Diseases have the privilege of being heard on the radio, and the television, brought into the fore front of the news. Us? We are a very large group of people who fight on a day-to-day basis, for some sense of normality, in a Disease that is not normal.
We are the by-standers , we watch what this Disease does to our loved ones, we cannot help them, other than to make them comfortable and offer some sense of normalcy in their lives, and pray.
We do the best that we can with what we have, but sometimes that is not enough. Sometimes our hearts are broken by the progression of this Disease, of which there is no cure.
While we, the by-standers try, and help the one’s gripped with this Disease, we do what we can and we pray a lot. But ya know what? This Disease is not deadly. It can carry on for years and years and the decline goes further and further, until the person gripped with it, looses dignity, and becomes like they first came into this world.
The only thing we can do, is pray, and hope our loved one’s know how much we love them, and try to give them some type of dignity. This is a very rough Disease to deal with. Unfortunately, it does not get the recognition it deserves, and the money to fund some type of cure. There are more people with this Disease than you would think possible.
The strangest part of this Disease though, no one actually dies from it. The deaths are attributed to “side effects”, as in pneumonia, aspiration, and a common cold. Go figure that one. A Disease that will totally transform your life, but will not kill you? I’m not sure I quite understand that one. If this Disease will not kill you, then there surely has to be a cure?
I guess I am just frustrated, please bear with me for a second, but Alzheimer’s, Cancer and the like have T.V. time, and a lot of new’s time, but when was the last time you heard something about Parkinson’s on the news?
Folks, I believe I am going to start a Revolution, because I think we need to be heard….
My world is turned upside down a little. So, before I get into what turned it upside down, I need to ask a question. This question actually came from Momma, who has had Parkinson’s Disease for 9 years now.
There was a “news story” on the 5:30 “National News” . It was a story about a woman who had done extensive research on Alzheimer’s Disease, and had found a possible cure, or at least a drug that would help, only to be diagnosed with Alzheimer’s.
I’ve spent the better part of this evening (after I got home from the Farmer’s, Hey it’s Wednesday and y’all know he has a regular Wednesday night “out”.) I’ve researched on the internet, and ya know what?
Alzheimer’s Disease is widely known, and researched, but ya know what? Parkinson’s is not. Sure, Michael J. Fox, brought Parkinson’s into the news, because he suffers from it. He started a Foundation, that has tried to bring awareness of it.
I must insert a disclaimer here, because this is solely my opinion and everyone has them.
Momma asked me tonite, “Why doesn’t everyone know about Parkinson’s? I know a lot of people have it, but it is not on the 5:30 News tonite?”
So, my question is this, Why doesn’t everyone know about Parkinson’s Disease? I have found that since I started my blog, and also contact with people I knew in my “working world”, There are a lot of people out there that either have it, have dealt with it, or are living with it, be it a Caregiver, a spouse, a family member, or whatever.
After Momma had asked me this question, she went straight up Parkinson’s on me and Joyce. This was probably the worst I have ever seen her. Mind you, I usually get her up in the morning, and then hang with her until about 2 pm. Last night she was fine. Tonite not so much.
I really don’t know what triggered this, other than the news story at 5:30, because folks, she was fine up until that point. You see, that’s the thing. Sometimes, she’s just like you and me and then WHAMMO, she goes straight up Park’s and there is no coming back.
Between Joyce and I, we finally got her in the bed, (the Farmer came home early and he helped to). We got her pants changed, and then tucked up, but by then, (I hope Momma was in her happy place in her mind), because the rest of her sure did not co-operate, and then she told the Farmer that Joyce and I were torturing her.
I tried to explain, we were not torturing her, but she was having none of my conversation at that point. So I did the only thing I could, I gave her a kiss and a hug, (which she gave back to me, damn, she’s strong sometimes). I told her, “I’ll be here in the morning to drag you out of bed ok?” she replied “I love you Joanne”.
The Farmer and I talked for a bit before I left, and HEY Farmer, I counted 12 before I hit my driveway, pfft….you really need to quit jinxing me ok?
I’m sorry if this post is all over the map, but ya know what? I’m all over the map too. The brave Camsgranny posted last night she’s not scared of nothing, but guess what, I think I am.