Living with Parkinson Disease

 I came to realize I hadn’t written anything since August, 2017, and I still have Parkinsons-disease and fibromyalgia. Sometimes I feel like the doctors don’t know what you have. I’ve been taking the medications for Parkinsons-disease carbidopa/Levodopa, and for fibromyalgia Gabapentine. I don’t feel any different. Doctor’s say I have severe arthritis, osteoarthritis, they won’t operate.

I started seeing a new neurologist who specializes in Parkinsons-disease.  I really like her. She was very thorough with all the test, and decided to increase my medication to 1 1/2 pills 3 times a day. Reason? My balance issue is really bad. I hit walls, fall off three bed and then can’t get up.  I’m having incontinence and loose bowels. Makes things more miserable.

I’m going to try to blog as much as possible, but my memory is squashed.

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Fibromyalgia – The Chronic Demon

Painless World

I’ve talked about the diagnosis, now, Fibromyalgia is now my story.  I call it “The Chronic Demon.”

You never know when this demon will sneak up on you.  But I do know it’s worse in the morning.  I’m an early riser, because I go to bed pretty early.  Just so tired of holding my body up all day.  Pain is exhausting.  The numbness in my hands and feet are undeniably cruel.  Lately my wrists have decided they want to join this rest of my joints.

My memory and brain are confused.  I lose things chronically, forgettable, and there’s a lot of times I just stare into space.  My motivation is lacking.  And, f I work on one of my projects I’m tired within 30 minutes and wait until the next time.

I also have ADHD and bipolar.  These days I don’t know who I am or what I am.  I don’t have any support.  I live alone and try my best to take care of myself.

Lately everything is getting hard; laundry, vacuuming, cleaning house, and even making my jewelry.  My poor dog isn’t getting he’s walking in.  He doesn’t understand.

And having other people help is embarrassing to me.  My mom who just passed away was the same.  Even though she had vertigo and knee problems wouldn’t dare get into a wheelchair or carry a cane until she got into her late 80’s.  She died this year at 90. Miss you mom.

Fibromyalgia affects people physically, mentally and socially. m one of those people who likes to stay busy.  The literal translation of the word fibromyalgia is pain in the muscles, ligaments and tendons. There is no cure for fibromyalgia. So we’re stuck with this madness. They say Multi-disciplinary approaches for management and relief of symptoms are often recommended.  Medications, cognitive behavioral therapies, and gentle exercise are the most common combinations.  Medications I take  are Gabapentin, Naproxtin, and Cabidopa/Levodopa.  Why can’t they give medication an easy name.  I can’t pronounce most of them.

If there are others with this “Chronic Demon” I’d love to hear your story

Parkinson’s Disease, Fibromyalgia, Cancer

My world came crashing down a month ago.  I lost my best friend and mom.

My mom and me

Mom was 90 years old, but still beautiful.   She had Merkel Cell Carcinoma cancer, and cervical cancer.  I saw her dying in front of my eyes.  It was so hard. I think about calling her everyday, because we talked just about everyday.  I feel like I lost part of me since we were so much alike.  I can see her face and that beautiful smile, laugh, and her wonderful since of humor.  I loved her so much.  Now both parents are gone. I feel so alone.

Having bipolar and depression is difficult in itself managing during difficult times. Within the last few months I found out I have fibromyalgia, and Parkinson Disease.  This has been hard too.  I ask the doctor why do older adults start getting all these bad things.

It took 5 years to finally get a diagnosis. I was going to orthopedic doctors and all they wanted to do is give me injections.  I got sick of it.  So I tried a rheumatologist.  He does not have a good bedside manner, but, he ran a bunch of test and came to the conclusion I have fibromyalgia.  I was in so much pain.  I couldn’t get out of bed in the morning.  But there was other symptoms and he said, ” I don’t do that.”  I hate hearing those words.  I made an appointment with my neurologist, whom I adore. He diagnosed me with neuropathy about 6 months ago, and now Parkinson’s Disease.  He gave me some new medication, Carbidopa-levodopa that I have been taking for a few days.

My neurologist was able to see sympthoms;  tremors, my posture , walking, and other symptoms of Parkinson’s disease since I was having a bad day..   I had all of the following symptoms:

PARKINSON’S DISEASE

• Tremor. A tremor, or shaking, usually begins in a limb, often your hand or fingers. You may notice a back-and-forth rubbing of your thumb and forefinger, known as a pill-rolling tremor. One characteristic of Parkinson’s disease is a tremor of your hand when it is relaxed (at rest).
• Slowed movement (bradykinesia). Over time, Parkinson’s disease may reduce your ability to move and slow your movement, making simple tasks difficult and time-consuming. Your steps may become shorter when you walk, or you may find it difficult to get out of a chair. Also, you may drag your feet as you try to walk, making it difficult to move.
• Rigid muscles. Muscle stiffness may occur in any part of your body. The stiff muscles can limit your range of motion and cause you pain.
• Impaired posture and balance. Your posture may become stooped, or you may have balance problems as a result of Parkinson’s disease.
• Loss of automatic movements. In Parkinson’s disease, you may have a decreased ability to perform unconscious movements, including blinking, smiling or swinging your arms when you walk.
• Speech changes. You may have speech problems as a result of Parkinson’s disease. You may speak softly, quickly, slur or hesitate before talking. Your speech may be more of a monotone rather than with the usual inflections.
• Writing changes. It may become hard to write, and your writing may appear small.

My writing has become scribbly and small.  It’s gotten hard. I’ve always had speech problems, but it’s gotten worse.  I fall off balance and also fall. When I fall I don’t have the strength to pull myself up.  My walking is bad. I walk stiff and baby steps.

I hope this is helpful to someone else.  I will talk about Fibromyalgia in another post.

ADHD Kicking My Butt

My parents feel I had ADHD when I was young and that was in the early 60’s through high school and most of my life. However, back in those days they didn’t know what ADHD was.  We just know I had a learning problem.  I couldn’t focus, hyper and my attention span was short. I couldn’t go to college because I could never past the TASP.

Today I feel much smarter.  I google everything I don’t understand like definitions. What is certain lingo on photography, etc.  However, the ADHD is still there.  I had some testing done and it seems it has gotten worse in age.  Things are so much harder. Things I use to know I don’t know.  Like making a square knot.  I can be sitting at a red light and go off in space then wonder where I am.  The only time I’m in focus is photography.  I couldn’t buy one of those Expensive Nikon or Canon cameras with all that computer jigs on it. Too much trouble.  I just want to take a good picture, with great composition and lighting.

I have to deal with ADHD everyday – what day is it, where is my keys, I know I put it there, etc.  I hate it. I don’t drive as much as requested by the doctors.  My car can sit parked for days.  I just do a lot of walking.  I do attend to be anti-social.

I have to deal with my life with no help from anyone as far as support.  I’ve gotten by since the 70’s, living alone.  I’ve had to figure things out myself and it’s hard but it makes me stronger.  I actually feel smarter today because I’m a very curious person, a need to know person.  I google everything.  I can’t read a book but I can google.  Hum…

Don’t give up on life. Pick a hobby and stick with it.  Do the best you can that’s all you can do.

Fibromyalgia Syndrome

I’m still struggling with depression and anxiety.  Just when you think you feel okay you relapse.  Another interference is my physical problems., which I’ve been told can cause physical problems. Does it every end?

I’ve been going to doctors for 6 years now with this pain that controls my body.  I’ve received x-ray’s, mri’s, ct scans, injections, nerve conduction study, you name it.  No one could figure out where the pain was coming from.  Well except, I do have osteoporosis, neuropathy, and arthritis.  LOL!   The orthopedic talked about surgery on my neck, but when I heard of the risks, I declined. I went to a neurologist for the study and found out about the neuropathy, and was given Gabapentin, which helps the nerve pain, especially restless legs.  He then recomended a Rheumatologist.

The Rheumatologists ran a ton of blood test and came to the conclusion I do have some rheumatism, but also gave it a name “Fibromyalgia”.  I guess that’s what they call it when they fcan’t igure out what it is.

The pain I have can be intense everywhere especially my legs and feet. I have spots on my fingertips that can really hurt when I touch them. My hands go numb and feels like needles all over even my arms.  I could never get out of bed at lease 30 minutes after taking the Gabapentin .  I couldn’t move!  I had no strength in my body and still don’t. Walking was an adventure stumbling all over the place.  Even my brain feels confused and disoriented.

The rheumatolgist prescribed to start with Predinisone, a steriod.  For the first month I could actually get out of bed and go walking.  I could drive longer distances without pain. He told me I couldn’t be on it forever.  I’m now on my second prescription with lower doses and it’s not as productive.  So I don’t know what comes next.  I just don’t want to go back to the beginning.

I paint and do photography so this has been disabiling for me. Below is some of work in my Etsy shop for sale.

Etsy Shop

 

Lucky With with God

Being lucky is what I feel.   I  accepted GOD into my life by being baptized again not long ago.  I was feeling lost, and nothing seem to be going right.  Actually, I’ve felt lost most of my life.  

But, I decided no more.  Even though Arthritis and Neuropathy has taken over my live.  I’m unbalanced, can’t walk without stumbling, and in extreme pain all the time. My memory and vertigo is intolerable. Then I said, “I’m not going to sit here and feel sorry for myself anymore.”  The doctors didn’t seem to care. They tell me, “I don’t know.”  Or, “It’s not in my job description.”  I asked God for help, and he answered by giving me strength.

I’m trying to walk more, by not using my cane.  I stretch and exercise more. I have delved into learning how to paint.  Luck has it, I got accepted into a art show, asked to photograph a fashion show, and I feel stronger.

In the Later Years God Is There

This is about me turning to the Lord for help.

I’ve been through so many emotions;  lot of physical pain,  emotional pain, loneliness.  It gets to a point when it just has to stop.  This is not a normal life, in fact, I can remember when I’ve had one.  I guess when I was a teenager.

My emotions changed after the marriage and abuse. The divorce was a start of a new life, but I chose the wrong path into drugs and alcohol and the wrong men.  All this lead to abuse and rape.  Ending up in mental institute for depression and attempted suicide. I found out then that I have Bipolar (A disorder associated with episodes of mood swings ranging from depressive lows to manic highs). Also, I’ve had ADHD  (A chronic condition including attention difficulty, hyperactivity, and impulsiveness), since I was real young.

My life never got better. For some reason as we get older our bodies go through changes. For me I think my past life was hard on my body and mind, so now I’m suffering the mental and physical effect.  My emotions are very sensitive where my feelings get hurt easily, and on the other side when someone is rude to me I speak up.  I don’t take crap from people now like I did all my life.

Physically, I’m a complete mess, that’s what the doctor tells me. I have what they call  Osteoarthritis (called degenerative joint disease or “wear and tear” arthritis), in the back, well all over.  I had a shoulder replacement and it hurts still.  My neck will need an operation after the first of the year.  And then there’s this embarrassing symptom call incontinence.  I’m back to buying pads for my nightly accidents.  When I had a full hysterectomy I was actually happy since I would have no periods and no pads.

And then there the depression, and loneliness.  Feeling alone when  you don’t see your family as much as you like.  You feel abandoned.  It’s not easy when you’re a senior to meet friends.

I changed that by moving into a senior living complex and made some friends. Then I met this nice 84 year lady with a dog so we walk our dogs.  When she ask me to go to church with her I stumbled on my words, but said that would be nice.

Now, I’ve been going to church twice a week now for 5 weeks.  The people there have been so nice and warm and they make me feel special.  I’m now thinking about joining the church.  I was baptized when I was 13 or 14, but I didn’t know the importance of having GOD in your life-like I do now.  Now, I never wanted anyone in my life as much as I do now. God is my savior.

God, the Father Almighty, Maker of heaven, and earth, and the sea, and all things that are in them; and in one Christ Jesus, the Son of God, who became incarnate for our salvation; and in the Holy Spirit.