I was thinking of attitudes and how we express ourselves to others. It is really a choice. I have always liked the saying, “Your attitude is a reflection of your gratitude.” If we are grateful for things and have an optimistic outlook, we tend to act one way versus the way one who is pessimistic may behave, feeling they have no hope or they are beat down.

We all have minutes, hours, and even days were we don’t feel the best and life has just ‘bit us in the butt’, but the journey is much more pleasant when we decide to think positively and look ahead with hope.

So here is my alphabetical choices of attitudes we can have. The choice is yours to make, and I hope your outlooks tend to be more like those in the second column!!!

Accusatory vs. Accepting

Bent-out-of-shape vs.Blessing

Critical vs. Complementary

Dismal vs. Delightful

Emptiness vs. Expectant

Flaming vs. Forgiving

Gossiping vs. Genuine

Hateful vs. Happy

Loathing vs. Loving

Jerks-are-me vs. Jovial

Knave vs. Knight

Insulting vs. Inviting

Mad vs. Motivating

Needy vs. Nourishing

Overbearing vs. Open-minded

Pouter vs. Proactive

Quitter vs. Quickener

Rebellious vs. Reaching out

Seething vs. Soothing

Terrible vs. Terrific

Unlovable vs. Understanding

Vile vs. Victorious

Wicked vs. Wonderful

XYZ– Don’t’ you think this is enough? If you don’t, you can do XYZ for me!!

Thanks
Judy

I have a new doctor. No, I didn’t dump mine and contend for another. As most of you know, mine lost his practice because of lack of funds, and cutting back on Medicare closed the doors. I can say with certainty that he was most likely the best in the west.

A patient never waited more than ten minutes, tops. His nurse was the best. He spent time with you as if you were all that mattered on his list of patients for that day. You knew he cared and could understand first hand what you were dealing with, having a similar physical fight of his own to deal with. He explained things in such a way so that you felt educated when leaving and could understand yourself what was going on inside of you. He was compassionate and so kind. And he’s not there anymore.

So, I have a new doctor. And while he was ‘okay’, the difference between the old and new was blaring. This new doctor (new to me but near retirement) was kind, smiled at the right times and all the rest, but he was not Dr. Anthony Santiago, MD. MDS. VIP. Didn’t even come close.

Today’s doctor wasn’t bad – he just wasn’t Dr. Santiago. I didn’t know him and he didn’t know me. I am quite confident that I am not going to enjoy these ‘new’ visits, unlike those I had with Dr. S- who always had a smile, a laugh, a genuine concern for his patients. And, I NEVER had to strip down to my skivvies for an exam. What is up with that?

Survey: How common is that (for PD patient exams)? I’ve been to three other neurologists and have never had to do that. (Leave a comment, please.) Weird.

I came home and cried. I just want Dr. Santiago back but I know I have to face this. Problem is – I don’t want to.

Meanwhile, another reason I want my doctor back is for another situation the doctors are looking at. They’re wondering whether the lupus that they thought was a brain tumor and then MS and then ruled it all out by mere lack of evidence and then thought perhaps it was the PD starting in my early 30’s instead of 2004 – well now they’re back to looking at lupus since my ANA is off the charts. I’m curious, however, to find out what it is and if that’s what’s causing so much of the pain. Time will tell.

Until then, we are promised today only and I am so grateful I know Jesus and the unrelenting fact that we don’t go through anything alone.

A friend so timely emailed a link to a beautiful song today. It was waiting in my inbox when I arrived home after my appointment. I clicked on it and listened. God is sovereign and knows just what we need, just when we need it. I hope you’ll listen to it and be as blessed.

http://www.youtube.com/watch?v=diUhGip85U8

What’s on my mind of late……

It seems like alot of people I know are in what I call a ‘funk’ right now. And it’s not too surprising. I mean it’s the middle of winter, and here in East TN we’ve had an unusual amount of real cold and snowy weather. A couple of days it was so cold I could not even make myself sprint from the warmth of inside the house, across about 20 feet, to the warmth of the hot tub.

If you haven’t figured it out by now, I love my hot tub. People ask me if it helps with my Parkinson’s symptoms and all I can say is “It really helps while I am in there!” There is only one problem: I can’t stay in it 24/7!

There are lots of other contributing factors to the ’funk’ mode so many of us find ourselves in, such as…

~We may be having health issues or someone we know may be ill. I don’t know another time past when I know so many with seriously ill family members.

~The economy is in a major down-turn. We may have family members unemployed or know more friends having to deal with economic crises.

~As if those two are not enough…then the Tiger Woods thing happened….

~The Colts lost the Super Bowl, and I couldn’t make it to Kentucky to see Sherri while she was there….L .

But don’t give up my friends…just as the seasons cycle, so do there dreary times in our lives. Personally I am starting to feel some better because:

~My daughter’s basketball team won their regional championship and my so very talented and athletic daughter was MVP!

~The sun was out for 2 days in a row recently

~Girl Scout cookies just got here. I love those shortbread cookies and a cup of milk!

~Survivor is one with a new group and this time it is former players of “Heros’ vs. Villans”, plus college basketball NCAA tournament is coming up soon, and the winter Olympics are on TV as well.

And in the PD world, excitement is building for the Unity Walk in April and a fundraising climb with the Regulars up Mt. Washington in late July.

Let us know what is happening in your world that is helping you out of a ’funk’!

I’ve been looking through some old pictures and found this random set. You can view my eclectic group of pix in the slideshow:

http://www.flickr.com/photos/70487584@N00/sets/72157600409561823/show/

And I’d be curious as to what traits you can see of me from them!!

Here’s to leaving funks in the dust!
Judy

I’ve been gone. Gone to Kentucky for a week, to be with my brother through his hip surgery and hopefully I was some help afterward. Three weeks ago, I was in Montana helping my mom with my dad after his back surgery.

A lot has happened in between then and yesterday. For example, I broke my toothbrush. What?! you may ask. Yes, I broke my toothbrush. It was one of those electric kind that run on batteries and my hand was refusing to cooperate and the harder I pushed, the harder I scrubbed, well… it broke.

And, that was the last straw. I broke down. For the (I think) first time since being diagnosed five years ago, I was angry and grieving. Through that melt down, I learned several things (not in any particular order).

1. I am tired.
2. I cannot do what I used to do.
3. I can’t cope with disorganization in my life.
4. I am frustrated that I get distracted so easily.
5. I want my doctor back.
6. I came home seeing improvements in the people I cared for, while nothing inside me got better.
7. I know that things can always be worse.
8. No matter what does or doesn’t happen, it will not catch God by surprise.

I started this blog about four years ago as more of a journal. During my melt down, I realized I miss that. Sometimes I think I have to be strong and not let others see the struggle within me because of this disease. I have tremors that are becoming more noticeable, but it’s what goes on inside of me that makes others say things like, “You sure don’t look like you have Parkinson’s disease.”

Sometimes, don’t you wish you could switch birth suits so others might have a better understanding? Everyone’s perception of certain diseases is different. Many people don’t realize all the different elements that can be prevalent in Parkinson’s. Depression. Loss of smell. Pain. Loss of mobility in doing basic, simple tasks like tying your own shoes. There’s so much more, but I don’t need to go into that.

The thing is – I love to write. It’s harder now than it used to be. I don’t even attempt handwriting anymore unless it’s signing a card or something similar. Even the computer frustrates me, especially when my ‘mobility’ isn’t cooperating and my mind is racing with ideas.

I love to encourage others because of what I’ve gone through. I believe that God always places someone a little further up on the path of life, so that they are able to help us on our journeys. Someone a little more experienced, a little bit wiser. They come alongside us and there’s an instant camaraderie. The circle becomes complete when we do the same thing for others.

So, even though my discouragement (and sometimes despair) kicks in and beckons me to walk toward the side of the road where discouragement dwells, I’ll remember my list…

1. I am tired, but I’m still kicking.
2. I cannot do what I used to do, but I am doing something.
3. I can’t cope with disorganization in my life, so I am working on simplifying things in my life so I don’t get so frustrated.
4. I am frustrated that I get distracted so easily, so I am making a concerted effort to improve my brainpower any way I can. (Anyone have any suggestions?)
5. I want my doctor back, but I’m willing to go where God sends me.
6. I came home seeing improvements in the people I cared for, while nothing inside of me got better… and that’s okay.
7. I know things can always be worse and just might, but…
8. …no matter what does or doesn’t happen, it won’t catch God by surprise.

So, I guess this is to say, I hope to get back to posting more regularly and more personally as I journey day by day with PD. After all, it’s when we allow ourselves to become transparent that we can do the most good for those coming behind us.

Who’s following you?

There have been many stories coming my way lately, regarding the made up scenarios of Parkinson’s disease. What I mean is this – some are being told by their spouses or other caregivers that their faking it or it’s all in their head (no pun intended). Some are going to the doctor, only to have the doctor (not a specialist in PD) tell them – the patient – that they’re just going through a phase of depression and eventually, they’ll get over it.

Let me tell you a tidbit of my story… At the age of 30 or so, I started having some things go wrong – healthwise. I was getting extremely tired. My eye began being weird. I suppose you could say that was the symptom that got me to the doctor. The eye doctor.

Before my eye exam, I explained what was going on. My eye would burn terribly and hurt and then I was seeing these little ‘fireball’ type objects. I likened them to the fireballs in the Mario Brothers Nintendo games. During an eye exam, my eye doctor slid over to the light switch on his little black stool and flipped the lights on. Something he had never done before.

“Has anyone in your family ever had MS?”

My heart sank. “No.”

At that response, he went down the hall and brought the ophthalmologist back with him. Off went the lights and the ophthalmologist examined my eye (the other doctor was an optometrist. The lights came back on again.

“Your optic nerve is hemorrhaging. What your’re seeing and is making your eye burn is blood.”

According to the two doctors standing there, Multiple Sclerosis, Rheumatoid Arthritis, and Lupus can often begin with what was happening inside my eye. However, there was one other thing it could have possibly been and they immediately had me come back in the morning to have an MRI of my brain done, to make sure it wasn’t a brain tumor pushing on my optic nerve. An MRI would also show if there was any build up of myelin on my brain – another symptom of MS. The MRI came back negative for a brain tumor but showed some slight myelin build up – a symptom of MS if the build had been greater.

Eventually, they called it Lupus and treated me accordingly for it. Ten years later, I was diagnosed with Young Onset Parkinson’s disease. The symptoms have been consistent with all I’ve read about PD. I think they got it right this time around.

The point of me telling you ‘my’ story, is to show you that often times, certain diseases may ravage our bodies and never be seen with the naked eye. No one else could see my eye hemorrhaging and what was causing the awful burning I could feel (and see!). But it was real.

And now I have PD, as do so many others who thought they were signing up for one thing, only to find out they were given another. A life of leisure gone wrong.

What does PD look like? That all depends. First of all, it is different for everyone who has it. Some may shake uncontrollably – all the time – while others shake less but have terrible back and/or shoulder pain. Some can smell the slightest fragrance, while others bemoan the fact that their sense of smell has disappeared completely. Some sing to strengthen their disappearing voice, while others take speech lessons (or talk to themselves).

Some have a difficult time with speech, walking, etc. However, most people don’t and most likely won’t ‘see’ this.

You won’t see the restless legs that keep them awake half the night, pacing the floor to get it to stop. You may miss seeing when your PD person falls and scratches up their forearms and elbows.

You won’t see them struggle while getting dressed because they want to try to do it themselves just one more time. You won’t see how it becomes harder and harder to swallow their medications.

The fact is, you won’t see a lot symptoms common for PD or MS or Lupus, etc.k, even if they are visible, because you may not really understand the disease or know what to look for. But, the PD patient is fully aware of what is going on inside of them and no one believes them because they can’t see it and think they’re faking that they have the disease because they badly want attention..

May I ask a favor? Don’t dispute what they are trying to tell you or are dealing with. To lose the support of a spouse who thinks you’re merely putting on an act can be devastating to the one suffering. If you’re in denial over what your spouse has been diagnosed with, seek out a support group for caregivers.

Whatever you do, don’t push their diagnosis away and pretend nothing’s wrong. Believe them or they’ll seek support somewhere else. Is that really what you want?

And PD person, if you’ve got a doctor that doesn’t believe what you’re telling him, get a new doctor.

About a week ago, I met one of my neighbors. They travel a lot in their motor home and just pulled in from a long stretch. They were gone all winter to Arizona and for the summer, they were camp hosts over at Crater Lake. So, I wasn’t being ‘un-neighborly’. They are just never there.

I had gone to the mailbox and on the way back my neighbor was standing at the back of his motor home with two other older fellows. They were chitchatting or as some say, shooting the breeze.

I had been singing as I walked and brought it down to humming to myself as I approached the threesome and was about to walk by when my neighbor broke the conversation with his two friends to tell me to “Lighten up. Things aren’t that bad.”

Oh good. Another one of those people. Now, I have nothing against ‘those’ people. I’m not even sure what I mean by ‘those’ people, except to say, they don’t get it.

Some people measure happiness and joy by the smile plastered across someone’s face. If they’re smiling, they are doing great. How many times have you put on a smile for the crowds, meanwhile inside, your world is falling apart? Yet, it doesn’t work the same in reverse order. If you look down, people assume you are down. They aren’t familiar with the effects of Parkinson’s disease (PD).

Many think that PD is simply an illness that makes a person shake and it does. However, that’s only the tip of the iceberg. Did you know that PD can include:
- loss of smell
- loss of balance
- stumbling
- depression
- fatigue
- dry eyes
- lack of muscle control
- tremors
- severe pain
- inability to walk safely
- stiffness
- etc

So, when my neighbor, standing across the street, interrupted his friends to make his comment about me putting a smile on my face and added, “Now, isn’t that better?” when I forced it, I was frustrated. I was happy.

So often, we think unless the other person is smiling, something’s wrong. We assume that something is troubling them. People with PD have a disadvantage in this area – being able to show on the outside, how they feel on the inside. A person with PD often loses his or her smile, as the facial muscles in a PD patient has caused their smile to disappear. Many people, who know nothing about PD, don’t understand that reality and make it their lot in life to yell at others to put a smile on their face, if they don’t see one there already. If that weren’t enough, they follow it up with, “Now, isn’t that better?”

Being happy doesn’t mean you walk around with a smile plastered on your face. I see many sad, disheartened, lonely people all over the place who have a plastered smile on their face and inside they are dealing with the darkest places of their life.

The next time you see someone who looks lonely, sad, down – ask how he or she are doing. You might be surprised at their reaction.

Often when you read about those who are suffering with Parkinson’s disease, the article refers to those who are a tad bit older, over 60 usually.   We don’t often see articles, information, etc. on people under 50 who are fighting this little monster (often harder because it tends to hit the younger crowd a bit harder).

Thought you all might enjoy this article…

The Young Faces of Parkinson’s Disease

Enjoy!

Sherri

To: The Regulars
From: Karen Smith

I think it is AWESOME what all of you are doing to find cures for Parkinson’s Disease and Alzheimer’s Disease and I am very excited to be a part of your extended family. It is my hope that cures are found for both of these diseases before you reach the summit of your last mountain!

I had heard of Parkinsons’ and Alzheimer’s, but only that someone else had the disease. My sister, Judy Hensley, was diagnosed with Parkison’s almost seven years ago. She was only 40 years old. Our family was devasted at first, but Judy has shown each of us how to be courageous in the fight for a cure. Judy’s hope is that a cure is found for Parkinson’s Disease in her lifetime. I honestly believe that as hard as she works to make others aware of this disease, that she will be CURED !!

Seems like everyone I speak to knows someone with either Parkinson’s or Alzheimer’s. I have met some wonderful people through my sister Judy and her PD friends: people who have the disease; people who are caregivers or relatives; and people like The Regulars who just want to give Parkinson’s Disease a face. We need to let others know that the possiblity for a cure is attainable. If Judy did not have PD, I would probably have never gotten on a plane. You see, the first time I flew was with Judy to New York City to participate in the Parkinson’s Unity Walk. It was great to see and meet all the people that are associated with the disease. Who knows, maybe me and Judy will climb a mountain together!

My preacher once said in a sermon, that God puts “speed bumps” into our life for a reason. These bumps make each of us stronger after passing over them and more thankful for what we DO have. Judy is determined to flatten her “speed bump”. I believe that God has given each person a specific talent and purpose in life. Judy’s purpose is to raise awareness of Parkinson’s Disease. The Regulars purpose is to inspire others to keep climbing; that nothing is impossible! My own purpose is to support Judy and others in their quest for a cure for Parkinson’s Disease.

World Up!!
Karen Smith (proud sister of Judy Hensley)

You can view a tribute that Judy made to Karen here: My Sister, Karen

It’s Friday; the rest of the world still fortunate to have a job is rejoicing “almost the weekend!” I used to do it too but haven’t in two years now since I ‘retired’ at the age of 44 after 20 years of working in a job I enjoyed. Parkinson’s disease is the cause.

I sit here listening to birds chirp in the early morning dusty light with additional illumination from the laptop screen were I intensely try to capture some thoughts by typing one handed due to the stiffness and tremor in my left hand. Parkinson’s disease usually starts on one side of your body and progresses to the other.

I try to wait and take my meds until 6;30 so I’ll function better during more of the daytime.

I wanted a little snack a few minutes ago, so I scooted (literally) into the kitchen and got out a piece of bread from a new loaf. I hate twist-ties. I counted…it took me 48 secs to fumble with the tie get out a piece of bread and put a clip back on the bag. At least the clip should help the next time.

Parkinson’s disease will slow you down.

Speaking of medications, I have taken 4-5 different ones at a time over the last year. Two of them I take a pill 3-5 times a day. I got the pharmacy to print out my refills the last year. It also included some info on my cost and how much my insurance paid. We are very fortunate to have good insurance at a moderate cost to us, but I was stunned. The cost of 35 different refills was a total cost of $6.600 and my part was $800 plus another couple of hundred dollars of deductible. I just have PD….this is outrageous.

Oh, and I might mention the most effective drug for PD is 40 years old??

And now we sit with constant worry about increasing costs of all health care at incredible rates. And we are helping businesses who pay outrageous salaries to people who help their industry into billions into debt get out of it? Excuse me for being somewhat cynical. Parkinson’s disease can affect more than the way you move, unfortunately.

Speaking of which, an estimated 50% of PD patients experience depression, but I’ll just leave it at that and take my antidepressant with my 3 PD meds a day.

You’ll be happy to know, I just took my meds. I should be almost normal in 40 minutes and do well as long as I take my meds every 4 hours and don’t have anything too stressful going on today….you just never know some days

how well you’ll do.

A cure sure would be nice! How long you think that will take? No telling and I’m tired of guessing.

I have had Parkinson’s symptoms 7 ½ years and had effective treatment for 6 years. They say I’m probably in the honeymoon treatment years of 5-10 years after diagnosis. The honeymoon is wearing off, I can tell and I’m trying to stay positive for the future. That’s why I like this group of people…the Regulars. I describe them as regular people who do something a little out of the ordinary … climb a mountain once a year to help Parkinson’s and Alzheimer’s. I call them my friends.

I’m pretty picky about my friends: they’ve got to motivate me somehow, and The Regulars do. Their passion and belief in some simple but profound truths had reinforced my belief that even I can make a difference in cure for my illness.

I made some words to go in the Christmas tune “Up on the rooftop” and I hope it will encourage The Regulars or at least make you smile and know that I appreciate your efforts and commitment to help those with AZ and PD!

I also look forward to seeing all of you with your turn with ’da coat!

Much love and admiration,

Judy (in10city) Hensley

East TN, USA

While I have been compiling a booklet regarding Parkinson’s Disease, I have been learning a lot about the disease I often refer to as Little Monster. More than I cared to know, I might add. I have been told that PD doesn’t kill you and – that’s true. The part people don’t add to that statement is that although it may not kill you, it can hinder you from fighting off other things that will kill you. Sort of an ‘accessory’ to the ‘crime’, I guess you could say.

My husband and I went for ride yesterday out in the country. It was a gorgeous day. Fields and meadows, a slight breeze. We dreamed our way through the little roads just out of town and oohed and ahhed over homes that were for sale that we were going to buy when we become millionaires. Then as we were driving down a straight stretch, lined with birch trees, I remembered the things I’ve been learning. About the ‘end’ times.

A tear rolled down my cheek and as I wiped it, my husband noticed and asked what was wrong. I told him I’m scared. He didn’t understand. I explained. He tried to encourage me as best he could, telling me that may not be my story and if I do get to a point where I can’t work in my garden or enjoy our million dollar house (we wouldn’t really buy one that expensive, would we?), with its inground swimming pool and waterfalls, then my nurse (I’ve got a nurse?!?) can wheel me out (I’m already in a wheelchair?!?) to the front porch to enjoy the view. I can tell my ‘caregiver/nurse’ what things I want her to do in the garden and watch (but I can’t speak-don’t you know I won’t be able to speak?!?). He did shortly thereafter.

“Oh,” was his reply. Oh?!? Not a good answer.  I’m scared to death.

Does anyone realize how much torture that will be for me? I must make it clear at that point to just take me behind the barn and shoot me.

So, there I sat, pouting. My life was over in a matter of seconds. I was possibly mute and if not, an invalid barking orders to my staff who was working in MY garden, sitting in a wheelchair watching and there was nothing I could do about it. All the while, my husband was doing laps in our swimming pool and enjoying freshly squeezed lemonade on the side, playing with my Boo and all the other grandchildren that had been born and I couldn’t play with.  Super pity party.  Super real.

It’s hard living with a chronic illness. It’s hard to live with any illness – never knowing what the next hour will bring, let alone the next day. It’s scary. It’s like handing over the steering wheel, reluctantly, asking – always asking – ‘Can I drive now?’ It’s like going down a river on a raft without the paddles and wondering if a water fall is around the corner, rapids, or calm water. Each day is different as each moment unfolds. You have no control.

As we continued down a dream, I snapped into reality. I can still dream, I thought. And then I noticed how green the fields around me were. And the view. The views were absolutely magnificent. And it was if God whispered, “You’re alive. Right now. You have today.”

He was right. Right now, I am alive and I have today and it’s a good day. I may hurt, it may take me five minutes to get out of this car, I may still be taking 20 some pills a day – but right now, I have today and I am going to live it to the fullest.

We headed home, and as we drew near, I had another dream. I didn’t have Parkinson’s and I was sipping lemonade on an inflatable giraffe in the middle of my pool, watching someone else pull weeds and you know what? It was a great dream and I smiled.

Journeying with you,

Sherri