I was disappointed tonight. I was invited with two friends to go to a church and watch a play and then have ice-cream sundaes afterwards. I got all dressed in casual and went downstairs to the community room.

I sat down and began chatting and instantly got the burn on top of my head. I thought to myself, Oh no, I don’t need this now! I immediately took some pain medicine but within ten minutes I had the burning on the crown area, top front and back of head close to the neck.

I knew immediately I would not be able to go on the outing. I explained to my friends and I hope they understood backing out at the last minute. I just couldn’t do it, even though I saw the disappointment on my friend’s face. I knew I would be sick to my stomach and if I didn’t rest’ the burning would get worse.

This is all caused from my Dystonia. Something triggers it and it always causes pain in the neck and shoulder but the burning on my head is not fun at all. I have heard it compared to cluster headaches and Migraines.

I put some information here so you can better understand what I have. My diagnosis is actually; Parkinsonism/Ataxia/Dystonia.

The Parkinson’s part has affected my split-second thinking and short-term memory. I have internal tremors also. My head sometimes tremors and can be seen. The Ataxia part is what I deal with on a daily basis. Falls and balance. Once I am up and standing for about ten-fifteen minutes; I totally become weak.

If I am walking, it doesn’t seem to do this as bad. Baking, doing dishes, cleaning the tub, housekeeping, all cause me to lose my balance. I have already explained the Dystonia. I wish I didn’t have any of this. My brother had Mulitple System Atrophy. My Neurologist has suspicions about me having some of this too, although it is not hereditary. There is more information proving that environmental. Things like electrical towers, pesticides are something that my brother and I were surrounded by. The true test is taking, Sinemet. I have refused thus far because I am not ready to see dancing flowers or quit driving as my brother had experienced. If I do take the medication and it works; I have the Parkinsonism. If I take it and it doesn’t work, I have the Multiple System Atrophy. I don’t know if I really want or need to know. What difference would it make? It wouldn’t fix me, so far now, I am not taking it.

The headaches will leave. They usually last from one-five days. They are coming a little more often, so I may have to break down and try something else stronger. The neurologist is just waiting for my call to say I am ready. For now, I am going to do what I usually do. I will turn on the television and lay down and ask God to heal me once again.

(carbidopa levodopa) Tablets


SINEMET® (carbidopa levodopa) is a combination of carbidopa and levodopa for the treatment of Parkinson’s disease and syndrome.






One of the most common types of dystonia found in Migraineurs is cervical dystonia, also called torticollis. Torticollis can be primary or secondary. This type of dystonia can involve one or more of the muscles of the cervical spine, neck and upper body including shoulders and upper chest.

In the end, it is hard for people to understand how in five-to ten minutes, I can do a complete turn-a-round. I don’t look sick unless you see me weeble-wobble and headaches don’t show on the outside. I just know me and I know how those burning headaches feel. So for now, I will talk to you later. I’m going to turn the TV on and rest.


barn 2


The word for today is Patience

Do you have different levels of patience for different people? Maybe you have more patience with a close friend, or family. What about your level of patience while being put on hold over the phone?

Mine is certainly stretched when waiting for a representative to come on the phone to talk to me, especially if it has to do with the government. I have all the patience in the world if I am going to my doctor for test results. Go ahead, slow that line down. Let those other patients go before me.

I have middle of the road patience for little kids. They are so innocent but I am getting older. Running, yelling, screaming sets me on edge. I don’t have patience for television characters who don’t see the box directly. They are playing the dumb part; I get it, but I would rather snap the TV screen and make them disappear.

I don’t have patience when it comes to finding cures for cancers and other illnesses. I want the cure today, right now.  For God’s sake, I see a new prescription strength medicine on the boob tube at least every two weeks. If we can have new medications every few weeks, can we not then find a cure to those that take lives? Sorry, but I am not going to be the guinea pig for your new product. I could end up with a swollen throat, chest pains, itching, headaches or worse yet, death. What’s wrong with the good old medicines that really work? You know, Vicks on the chest, tea and honey, a shot of whiskey, a towel over the head and leaning over a steamy sink of  hot water?  I realize we want fixed, but sometimes it just can’t be done, because we are waiting for more donations for cures. We need answers, not instant fixes that cause so many side-effects. How do you think we got that Super bug in the hospitals and other medical places? Because we want to put something in our mouth right a way for a quick fix, when most times these generalized illnesses just have to run their course. Let’s stick some of that doctor’s office money into a donation and find more cures. Let’s cure the cancers and rare illnesses. Let’s leave the smaller stuff to fighting itself inside us and our old-fashioned smarts.



Where’s The Answers?

Where’s The Answers?

What is this game called?
Life you say? Do I get some say
In the decisions made about me?
Or is today; not my day.

Tired of my control
Taken out of my hand
Some say life is hard
Some say it’s grand.

For me, the pain
Of waking up
Is definitely not fun
Nor a buttercup.

Doctors scratch their heads
Questions go in space
Feel like quitting
What a waste.

But there’s a big part
Of me that cares
I will keep searching

There are answers
From some doctor’s voice
I want the freedom
To hear all choice.

For those of us
Who live with pain
Although we are tired
We have much to gain.

We shall search
And we shall try
We will keep asking
And find out why.

Written by,
Terry Shepherd


Terry 2

I Really Didn’t Fall off the Earth

I didn’t want you, my friends to think I fell off the earth, I haven’t, but I admit, I haven’t been on the computer too much. I have a tablet I read and play on when I am in bed, but it is very difficult to write a post on it with a smaller keyboard.

I have thought of you so much, but I just haven’t felt well the past few days. I think Parkinson’s has something to do with it and the fact that I have been trying to keep the thermostat down in my house. I am finding out quick that this little house is quite expensive to heat.

The pay-off wasn’t good though. I was freezing. Every piece of my body was freezing. I did learn through the Parkinson’s web sites that being cold is a symptom, so this was easy to understand, but my blood pressure went up too.

At first I was taking my BP too often and I knew I was; but I was worried. It was running high, not  high enough to cause me danger, but much higher than my usual. This in turn caused me to stress more. Finally I made myself just check it in the am and pm. I also made me an appointment for the doctor right after the new year, when my insurance will kick in.

I learned that if our bodies get too cold along with my age the cold bothers us more and therefore our BP goes up. So I gave in and turned the thermostat up a little but will turn it down at bedtime and keep it low through the day, using my electric fireplace, then back up over the supper hour.

I already feel better. I still have a dull headache around the temple but I feel better emotionally after talking to the nurse at my new doctor that I wasn’t in a danger zone. I feel even better than that knowing I now have an appointment.

I am not interested in getting a neurologist for my Parkinson’s. I know too much about it after my dad, his mom and her sister and my brother Al, all had it. I can get an official diagnosis on paper but what good will it do me? I already know about all the PD medications and the big side-effects. I know there is no cure too. Unless my new doctor strongly advises me I won’t deal with a specialist at this point.

But the doctor can help me get new prescriptions for my blood pressure and check it instead of me doing it. He can also check my sugars, so it will feel good to be back in a doctor’s care.

When I moved to Kentucky, my health insurance was no good here. I think I told you that already. I am on straight Medicare right now, so going to a new doctor will be quite expensive for the first visit, so I wanted to wait until Jan 1, plus I had enough refills of my medications to get me to that point of my appointment.

So, I jabbered enough. Time to take a shower, turn the heat back down and climb into my bed layered with lots of blankets. I will talk to you all very soon. Love and hugsindex

Talk About Your Medicines Month


The other day I made a post about Marijuana, pain pills, and natural alternatives. Since that day I have been contacted by a very nice lady named Judy Cohen. She works with the American Recall Center.

Half of her job is educating individuals on recall updates. The other half is connecting with individuals to help spread awareness online. I find the work that she does is outstanding.

The goal?

The American Recall Center provides drug and medical device recall information alongside practical healthcare information and support. They aim to build the most comprehensive resource on the Internet for timely and trusted material regarding healthcare topics that matter to the consumer. The team at ARC is dedicated to helping consumers find accurate information with ease.

We, the patients  go to our professionals but did you know you  have choices? We listen to what they say but many times we believe and do not ask questions. I felt very honored to be asked to be a part of this team to let others know that we all need to talk about our medicines along with helping to spread the word of American Recall Center.

Here is a link that I am providing to you so that you may better understand what this is all about. If I can help in any way about  questions you may want to write down to ask your provider, please ask me or contact Judy Cohen.

I also want to share with you the latest report on a new medication that is available to you. The title is called:

Problematic Findings in New Xarelto Study

The link I will provide for you is:



Xarelto is;

XARELTO® is a prescription medicine used to reduce the risk of stroke and blood clots in people with atrial fibrillation, not caused by a heart valve problem. For patients currently well-managed on warfarin, there is limited information on how XARELTO® and warfarin compare in reducing the risk of stroke.

XARELTO® is also a prescription medicine used to treat deep vein thrombosis and pulmonary embolism, and to help reduce the risk of these conditions occurring again.

XARELTO® is also a prescription medicine used to reduce the risk of forming a blood clot in the legs and lungs of people who have just had knee or hip replacement surgery.

Thank-you dear friends for stopping by my post and taking the time to read this.