God, Are You Opening a Door For Me?


Parkinson's disease patient showing a flexed w...

Parkinson’s disease patient showing a flexed walking posture pictured in 1892.

There is a huge part inside of me that is screaming and jumping up and down. I am filled with excitement and thanking God for helping me to maybe make a dream come true.

To let caregivers and families know more about Parkinson’s Disease. To have the chance of helping others to not have to travel this long and painful journey to go it alone is a dream I have prayed about for months.

Today I received a comment from Melanie Winrow. Melanie and I met each other several months ago here at WP. She is a wonderful and positive person filled with talent. You may visit her website at;

http://www.writing4oneandall.weebly.com

I was so excited to know that God may be  opening a door for Al, others and myself, I just had to share with my precious friends. Below is her comment to me. You may also be able to see it in the comment section of my latest chapter from Al’s Life Journey, Chapter 6.

Comment:
Terry, I’m starting my own radio show next week (guaranteed
4000 listeners).  Would you like to be a guest to talk about your
book?  I still keep all your writing (a grand total of 355 posts since I
first heard about you) and I can tell you that you have talent.

Over the coming months I will be doing a
number of charity shows (radiothons) to raise money for both Alzheimer’s
(first) and Parkinsons (in a few weeks time).  If you’d like to get
involved with any of that, you’d be welcome (I know you have enough on
your plate.  Importantly, is there anything Al/you need that we can buy
if we can raise the money?  If so, I’d be happy to do so (for example, a
hospital where a friend lived lacked, of all things, an MRI scanner.
For lack of that, she was sent to Portsmouth as the nearest place – and
died en route.  We would have raised the money for a scanner if we’d
known.  It doesn’t have to be anything that big – anything at all that
would make your life (or the lives of other sufferers easier.

I am thinking of you and Al.
Take care
All my love
Mel XXXXXXXX

Pain and Emotions


Parkinson's UK balloons

Parkinson’s UK balloons

I got a call from the nurse where Al lives and she told me that the family doctor had just been in and had prescribed an anti-depressant for Al. I freaked and asked her when they were going to give him the first dose and she said the first thing in the morning.

 

I asked her to please wait until I got back with her. I needed to talk to the doctor. I called and left him a message and he returned my call immediately. I told him about how two years ago Al was last on one of those types of medications. I explained how he had a terrible seizure from it and he couldn’t walk for almost six weeks.

 

I told him my fears and asked him if he still wanted to give it to him after my information. (This doctor was not our doctor two years ago)

 

He said, “Terry I just saw him. He is in so much pain and so depressed and sad. He is on the pain patch and now two more weak pain medications. He can’t take anymore. There is nothing I can do but to keep him comfortable. We have to try to lift some of his sadness. I have weighed the pros and cons and the pros are slightly in his favor. He does have the risk of seizures again but we won’t know unless we try, ok?”

 

I started crying right there on the phone. He told me, “Parkinson’s is a rough and dirty disease. It is beating Al up. How can you and I sit here and watch him suffer every single day.”

 

He didn’t know it but I was sitting here nodding my head. I knew I agreed with him but it just seems there is no licking this disease. I told him that I would call the nurse back and give her the go ahead for the medication.

 

I know I am supposed to be strong but here I am once again, a big weak mess. Watching the life disappear out of his life is harder I think than anything I have witnessed in a few years.

 

 

Something New, Something Borrowed and Something Blue


little animals

Something new

Something borrowed

Something blue

Today when I visited Al

He had something new

To say, something

Borrowed from a

Scary movie I once watched

And something that

Made me blue

For the first time

I knew without thinking

That Al is beginning

Another part of the

Nasty Parkinson’s Disease

I took him lunch

Which I try to do

On Sunday noons

As our families

Used to do

Right in the middle

Of eating his fries

He looked at the floor

And then rubbed his eyes

He asked me if I saw

What he had seen

I looked at the floor

And said no it is clean

He said little animals

Were all over the floor

But when he rubbed his eyes

And looked again they were never more………….

Terry Shepherd

04/14/2014

I Cleaned House, No Not My House!


US Navy 110308-N-7491B-039 Surgical technician...

Today I cleaned house. Oh no, not here. I already did my Spring cleaning. I mean Al‘s room. I took in some pairs of shorts and tank tops. He saw me when I entered but I didn’t get a smile or anything for a few moments.

Then he started crying. It was obvious that he had been upset long before I arrived. I put down my goodie bag and sat down beside him to find out what was on his mind. What was the culprit you ask? Good question and I am going to spill the beans right now. Wetting, yep that’s it, wetting his briefs.

For some reason, which I will blame Parkinson’s Disease this past week there has been a change in the bladder area. He was so upset and embarrassed because he had wet himself.

I tried using different reasons as to why this was happening. I was hoping he would reach out and grab one of them but he didn’t. It seems what is happening is that the knowledge of realizing he has to go pee comes late in the connection of the brain.

He realizes he has to go and either he doesn’t remember to put his light on, or he puts the light on and no staff arrive or he just gets late notice that he has to go. I do know that he was sitting there waiting to be changed but there was no call light on.

The light bulb inside Al’s head didn’t go off so I reminded him to push the button. I looked at his clock and it was six minutes until help arrived but it was too late. This in turn brought about more tears.

This is  happening about every time now when he feels the urge to go potty. I think it is a combination like picking the Power Ball numbers. A little Parkinson’s, a little more PD for not using the call light, and a little bit of no staff.

I finally think I found a reason he was able to grasp. I explained that many of his new friends at the Day Program wore briefs and had accidents too. I told him that no one knew they were wearing briefs as it was a hush- hush thing.  I asked him if he knew this information and he said no.

I seemed to be able to help a little so I went about tearing into his closet. I pulled out all long sleeve shirts and heavy-duty pants. I replaced them with the clothes I brought. I took  his winter coats and replaced those with a light-weight Spring jacket. I washed down his bed side table and placed the tower fan for him. Yes, he is still sweating a lot. I learned the heart is causing this excessive sweating.

Without him realizing it I made a trash pile of old newspapers back from when he first went there to live. I found brown paper sacks where he had won goodies at Bingo and they were full of empty wrappers and even one nasty looking banana peel. Yuck!

It was time for lunch then. I had called in and ordered a lunch this morning so we ate together instead of me watching him eat and wishing I was. He did pretty good with lunch and didn’t make too much of a mess for this meal.

His driver appeared and was waiting so she could take him to Day Program for a couple of hours. I pushed him back to his room. He had to go potty he said but he had already wet down in the lunch room he admitted. This caused more tears and again more explanations.

I put the light on for him and seven minutes later someone came in. When help finally arrived I asked her to change his heavy pants into something more appropriate for the weather. He chose shorts over thinner pants. She changed him and he and his driver were off with him in tears, still embarrassed about his accident.

I am glad he was able to go. Hopefully his mind was more occupied with friends than wetting. I was told that I needed to take his two walkers home. The doctors orders had come in and there is to be no more walking and he needs to be pushed everywhere in order to save his heart.

I looked like Santa Clause when I left. The car was stuffed with two walkers and a big trash bag full of winter clothes. I finally got the car packed down and headed for home. When I got  inside the phone was ringing. It was the facility.

There was an appointment waiting for Al to have a scope done for his swallowing issues in the esophagus. I am not sure if I made the right decision or not but I have not heard Al complaining much about swallowing since they changed his diet to puree meat and mechanical soft. I also now know that his heart is working over-time and has been damaged.

The doctors would put him to sleep to look down his throat and I chose not to put him through another procedure at this time. I called the number I was given and spoke to the nurse about my concerns. I asked her for her advice. She explained that at any time if things looked worse we could reschedule.

I felt comfortable with this. He wasn’t going to be turned down for an appointment at a later date, we were just putting it on hold until things progressed more in that area.

I felt good about today’s visit. I cleaned house for him. I tried my best to get him to understand the complications of PD and wetting one’s self. Lastly, he was out on an outing. I can tell he does not feel well but at least he was talking to me and he ate all his lunch today.

Al Fell Again and Still I Was Not Called Right A Way


The Cleanest Floor You Will Ever See

I haven’t posted since earlier this morning for two reasons, maybe I should say three. 1. To give you all a break from my frequent posting. (I’m sorry, I can’t help myself. I guess I am a chatterbox.)

2. I did some remodeling in my living room and that took the bigger part of the day.

3. I received a phone call this morning from a nurse at Al‘s facility. This call has been on my mind all day. Let me tell you something, there is no rest on the weekends for the wicked. Except I am not wicked.

At 1am in the morning someone noticed Al was not in his bed. They went to his bathroom and he was on the floor. The report was that he was on hands and knees so they didn’t consider this a true fall. They said he was fine. She told me he had a small rug burn on him.

I am thinking small as in the small bruises that he received two weekends ago when he fell. Those bruises were the size of peaches. I kept fussing with myself whether to go in or not to see him. I was wrapped up in my home project and they told me he was fine.

I did not end up going but there is part of me that wishes I did. Tomorrow I will be in there for sure. The nurse told me that Al got rude with her. I hear this word quite often, rude. Al’s mood and personality has seemed to change these past weeks. He smarts off they say. He is rude I hear from them.

I called a good friend of mine who has a family member who has Parkinson’s farther along than even Al. I asked her if this could happen, the personality change. She said absolutely yes. Caused from PDD, Parkinson’s Disease and Dementia.

She said that he may have said it and then possible later he wouldn’t even remember it. I know different times I have scolded him for his rudeness and he starts crying immediately stating he never said anything like that at all. I back off because I have no proof one way or another.

The strange thing to me about the call is I don’t like being called 8 hours after the fact. I have told them repeatedly to call me as soon as they know he is stable. I don’t give a hoot if it is in the wee hours of the morning or not. I want to be notified. I want the choice to either go in or not to check it out. This is not the first time this has happened.

His last fall they told me almost 48 hours later. The other thing that bugs me is how in the world did he get a rug burn? The only rug or carpet in the whole building is in the hall. This has me puzzled if he was on his hands and knees. Did he fall and was trying to get up? Did he go head first like he usually does? But still, how did a burn come on him.

The nurse told me that he told her he wasn’t going to  use his call light anymore because he waits so long for staff to help him that he pees his pants, and he gets very embarrassed when he wets himself. The wetting himself is happening more and more often. I don’t think it has anything to do with Al holding it or not. I think it is the PD.

I have asked before about putting a Bed Alarm on his bed and his recliner. They declined my suggestion stating Al doesn’t want it. They think he will become agitated and cause more rudeness or attitude for them. I say get the alarms and use it. The loud noise may scare him enough and remind him to put the call light on. He does forget to use the light. This has been an ongoing issue for some time.

I asked his neurologist about it last week and he said Al doesn’t want to fall intentionally. His Dementia is causing him to forget. In Al’s mind he just assumes he can walk so he gets up and tries.

Monday morning first thing, I am calling Al’s doctor and telling him about the falls that are happening more and more. I am going to ask him to write a doctor’s order for bed alarms. I have no doubt he will do this for me and Al’s safety.

Why did they wait so long to let me know…………Sorry friends, I am still upset over this. Tomorrow a new day, a new challenge, and a promise of hope.

Tin Soldier


Standing Tall

Who is this stranger

In front of me

The one with

The wicked tongue to see

I do not know this person

He is not like before

I want the man I remember

The one I knew before.

The Parkinson’s Disease

Has changed his attitude

Please understand

This guy this dude.

I can not fix it

I don’t have the answers to why

He used to be full of

Laughter and a little shy.

Please don’t ask me more

I have done this for myself

My questions now remain

Over there on a shelf.

I swear he isn’t trying

To be mean and very rude

I promise you

He would rather smile at you.

All I can really say

Is that Parkinson’s is a ball

Of mixed emotions

Being bounced on the walls.

Bud I don’t understand

This I do admit

But I will stick beside you

No matter who’s tossing shit.

Terry Shepherd

04/06/2013

Bright Skies


King Eddie's Restaurant, 1954

This morning I awoke to no snow. I saw blue skies with a touch of pink in the horizons. A good sign of a nice day. It is to be 45 degrees today, a real taste of Spring.

I already have had my shower and my first cup of coffee. I had to get up early today. In about an hour or so I have to go pick-up Al. The transportation driver had too many appointments so I said I would pick him up. He has an appointment with the neurologist.

He  hasn’t seen Al for about six months. He is still Al’s doctor, but doesn’t stay actively involved any longer. All medications have been tried for Parkinson’s Disease. For some reason they never worked for Al. Instead he would have terrible tremors and drool like a kid in a candy store.

He has fought this disease with no help from PD drugs. He has remained on pain pills to try to lessen the symptoms. He and I are still waiting for word to see if he gets to come home and go to Day Program.

It would be so good for him to regularly associate with men and women his age and with disabilities like his. For this I would be grateful. The spirit of the mind plays a big part of an illness I believe. I received a call last evening stating the facility  now has  Nitrogen for Al. They will use this for pains for his Angina. This could save his life if he is actually  having heart problems and help steady his body until he reaches the ER.

I didn’t tell Al that I plan to take him out to lunch after the appointment. I will let him choose where he goes but I bet he says his favorite little place. Today we shall take his wheelchair. With having to walk from the facility to the car and into the doctor’s office and back out and lunch, I don’t think he will make it.

I had questioned him yesterday when I saw him. I asked if he wanted to use his walker or wheelchair and he requested the wheelchair. He told me he can’t walk that far without accumulating more pain. I figured this but I wanted him to have the choice to choose.

So today hopefully it will be a nice day for him and I. Sun, a little warmer a doctor who makes a lot of jokes during our visits and lunch out. Al will probably be worn out and take a nice nap when I return him.

A Bit of Bad News and a Small Blessing From God


Wheelchair seating in a theater (i.e. giving a...

I just received a call from where Al is staying. I didn’t really know whether to cry or just do what I usually do, go numb.

We all go through things in life for sure. Some we know are going to happen down the road, but we play with the idea and then when the road stops, we are blown apart.

Can we really plan on how we are going to react to scenarios that come across our paths?

I had been expecting this call, but I guess not so soon. Al has been in therapy for one week for wheelchair training. The key to the pot of gold is to have him get from a chair or bed to a wheelchair all by himself.

The week went fast and the results were not so good. They tell me that Al’s Parkinson’s Disease is just progressing too quick. He is very stiff and slower than the world’s slowest snail.

I know what they are saying, I just don’t want to face the ugly mask. I tried lifting Al’s leg once a week ago and it felt like it had rigimortis. I know that sounds awful but that is what it reminded me of.

They said there is nothing else they can do to help stop this disease. He is about 85% wheelchair bound now. When he tries to walk he stumbles or falls. I guess I have to take the numbing gel off and realize he won’t walk much longer.

I know to some of you walking a distance of a yard is good, but to me it is so much like watching your child take his or hers first steps in life. I want him to walk all the time. I am not ready to accept this.

My biggest anger comes from the fact he will be 58 in May. 58 and confined to a wheelchair before 59. I know it could be worse. There are other people who have life much rougher.

But please, understand this is my baby brother. He is all I have left in the world a part from my own children. I guess I mean to say he is all I have left from my own original family. The Lord helped Al today. Al also found out the news that therapy was over. As soon as he was given notice of no more therapy, God stepped in and made the phone ring at the facility.

The gentleman that usually goes out on Wednesdays to the day program and a small outing was ill. Did Al want to go in his place? The facility called me to see if it was alright. I asked, ” Did you ask Al yet?”

“Yes, and he said yes”, they replied.

“Then give him what he wants. Let him go! Let him forget this for just a little while longer” I said.

Thank-you God for doing the little things. Others may have not noticed, but I did Lord.

Agitated


Cereal, Bananas and Strawberry

This is one strange day. I am agitated and not really sure why. I have decided to dissect my attitude here on the white board. Then I can go through the day.

I woke up bright-eyed and bushy tailed. Fixed my coffee and played a quick game on Facebook. I am so addicted to Candy Crush Saga. It is a free game that you move through levels. You beat a variety of schemes and I just love the challenge. It was not a downloaded game. It is free to play. If anyone of you play, we can become friends and play it together.

I drank my coffee and was starving so I ate breakfast early. I don’t usually eat breakfast for a couple of hours after I wake up. Last night I had fried sausage and sauerkraut so I don’t know if that did something to push my hunger buttons or what, but my tummy was growling.

I ate and then for some unknown reason I laid back down and went to sleep. I knew I was planning on going to see Al so I don’t know why I did that. I think part of me feels left out.

Although I am no longer married to the mother-in-law’s family, I still carry the pain and hurt of losing someone I loved so much. Because of frictions within the walls of family members I am not at the viewing of this beautiful lady. Of course I would not with good conscience attend the funeral. I am no longer a part of the family because of divorce.

I think it just makes me so sad but maybe I should not feel this way. The divorce was many moons ago but she forever remained in my heart.

I went to see Al after I woke up from my cat nap. He was in a mood. The program that takes him out twice a week cancelled  due to winds and cold weather. He was all over me about he didn’t understand why they weren’t taking him. He was so confused about the temperatures. He was just plain disappointed. So he and I both were having a sad day.

I stayed with him while he ate lunch and had a cup of coffee. He is on his new pain medication which started at 4am this morning. He told me he wasn’t feeling quite as much pain. I thought this was good, but I wish once I would hear NO PAIN SIS. Maybe this is too much to ever hope for with this Parkinson’s Disease.

He kept drifting in and out of sleep. I think his body has to get used to this stronger medication. He told me his pain was so bad through the  night that it ended up making his stomach hurt real bad. He said he was a wake a lot and kept asking the nurse if it was 4am so he could have his new patch for pain. I felt bad for him.

I personally don’t ever remember me having so much pain I vomited, but then again the doctor’s say PD pain is stronger than any medication on the market.

After leaving him from my visit I stopped at the grocery store. I swear I went into shock. I could literally see the jump in prices of regular things I buy higher this week than last time I went to the store.

What are we people supposed to do about food? If you buy organic and good foods they are double in prices. A package of hamburger was almost $4.00. A roast was over $10.00. Forget eating high on the hog and eating a steak. It is no longer in my food budget. A can of salmon was $3.50. I had started giving up red meat around Thanksgiving and I guess this is a good thing.

A jar of my peanut butter was $3.79. Obviously, I wasn’t sure what to buy. I scanned for sale items only. I felt like I came home with nothing for $50.00

After I returned home and unpacked my empty bags. I went through the mail. I then decided to call my old Part D insurance company to see if I was going to receive my refund.

They owe me a whopping $34.00 for a payment I made in Dec. 2012. I have yet to receive it. I have called once per month. Today they told me it is being processed and will take 60-90 days to receive it.

I blew my stack and I am sure she could see my smoke. I asked her,” Um, the next time I have a bill due from a business can I tell them I will send it out in the next 60-90 days? Do you think they would accept that?”

She said, “They would get very upset.”

I said, “Well now you know how I feel. You are keeping my money for a service you did not perform. I will call my lawyer and I will make a complaint in the New York Times paper. I want my money”.

She told me to hang on. tick-tick tick-tick. She came back with, ” We are going to try to send it out in one week. Write this reference number down per the conversation. If you do not get your refund call back and give the number”.

I thanked her for her help and hung up. Now it is 4pm and I am exhausted. I don’t even want to write any short stories or poetry or my Daily Prompts. Maybe I will feel better later on and change my mind.

I just finished off a bowl of Special-K Strawberries and Chocolate cereal and a small cup of egg drop soup. Now I have messed up my eating schedule. I  have to take more diabetic medication at 6pm and I won’t be hungry.  Oh well, I think I will hold off until 7pm and maybe have some eggs and toast for supper with a couple of Turkey links, oh and of course my cup of coffee.

Well I am done dissecting. I guess I feel a sense of loss and frustration today. I think this feeling allows me to go to the couch put my feet up and cover my with my blanket and watch TV. Talk later.

I Wished


Book of Answers

Book of Answers (Photo credit: Caro’s Lines)

My spirit is restless this morning. I was awakened by the phone ringing. It was a company I have been working with in regards to  getting Al  out of the nursing home. Al is restless and unhappy. I don’t remember him being like this when he was here with me.

Not that our home is close to heaven; but I believe Al’s attitude has changed towards life itself. I had called to see why he did not go to a certain program last Thursday on his outing.

No one that I questioned at the facility knew the answers. I should not say this but I am thinking it, so why not go for it? How can a facility work together day after day and yet when a question is surfaced not one person in any of the departments knows the answers.

It just floors me or maybe I am too impatient. I ask and I do not receive. I am so bad at handling the unknown. I move throughout the hours and days like a mechanical doll. In the head sizzling, is the question that you try so hard to patiently wait to get the answers.

I may have Al placed and I have more quiet time here at home, but sometimes I wonder if expecting Al to receive better care because there is more staff than just me at home was such a good idea.

Now I am faced with the challenges of going through the linked chain to get help.  It seems that the priorities that need to be worked with for Al can not be done. The state will not allow the staff to become too closely involved. They can admit him, take all of his money, give him medications, make sure he is encouraged to eat three meals a day etc. But, they can not stop the weight gain, the lack of socializing Al needs and wearing the same clothes day after day. They can’t work on issues Al has unless it is through a physical therapy department.

I am just a rambling on mess. I am to the place that I don’t know how to fix things any longer. Should I toss this whole process as if I am putting a dirty dish cloth in the washer? How far do I go before I have dug up the foundation of this staff?

I finally got my answer this morning through the phone call. Al did not want to go to the day program. He was upset. He always knew that when I said the word outing, it meant fun and hopefully buying a coca cola item. He got angry that he could only take a few dollars with him because he wanted to take out all of his money in case he found a coca cola deal. Well maybe I should add another weight to my shoulders and blame myself for trying to make Al smile. I did take him a lot of places. So now I pronounce my own self guilty.

I get it to a point. We all want to get what we want in life. It is our human nature. The difference is when Al was here I could reason with him. No one seems to be able to reason with Al at the facility. I can’t sit here and blame his new home. Maybe it is the confusion of his Parkinson’s Dementia. Or maybe Al is simply throwing a tantrum.

But I do know that he was looking forward to going to the program because as he said, he was going to get to see all of his old friends. Now through babbling on like a blooming idiot, I have finally keyed in on the point.

Al isn’t recognizing the effects of his behaviors. He was asking me why he didn’t get to go to the activity when he is the one who told staff in anger and hurt that he didn’t want to do anything if he couldn’t have some of his money.

Now I see a child throwing a fit. Should I pounce on Al and let him know this is all  his fault? Let him see that his anger and hurt by not getting what he wanted ruined his own trip? Does he get it, or is it too complex for his thought process?

This is where my mind swirls and before I even had my coffee cooking a way, my mind was already a jumbled hurting confused mess.

You see one of the things I love about myself is I can move forward if I choose to. Now I am in constant state of being on hold. When the professionals don’t have the answers, who does? When they don’t have the answers, who does?

I can’t make any hasty decisions because I am dealing with a delicate unbalanced mind. I don’t want to upset the so-called apple cart. I sat on the bed and thought about it for a while. I then decided to go in and talk to my brother today; but I wanted back-up.

Not for the reason of my safety, but for the professional words to help guide me through the explaining process of what I wanted to say to Al. I called the facility and was told the lady I needed to talk to just stepped into a meeting that would last for 15 minutes.

She was going to give her the message to call me as soon as she stepped out the door. It has now been one hour and ten minutes and still no phone call. Instead of tossing this over my shoulder, flipping on my radio to turn my brain on auto, I will sit here and stress because I can not get the answers. Sounds impatient doesn’t it? I may have to admit that I am a little  this morning. But when you had a tiny puddle of mud in the beginning and after months of digging in it, you now are standing in a pool, I tend to lose that good patience quality.

Some things were just so much easier when he lived here at home. It was his and my decisions. It didn’t include 25 departments and hearing too many I don’t knows. Life was simple, when I look back. All I dealt with then was his sadness and depression. Now it is constantly looked at as how to fix it. This includes many meetings with hope built-in to them and walking out still unsettled. The alternative is to keep giving him more and more medications until he is a zombie in a restless mind and body.

I just wish now at one of my weak moments that Parkinson’s would fall off the face of the earth. I wish that I was asking Al what he wanted to do today. I wish that I had not placed him where money became the object. I just wish. Wow, I am tired all ready and it isn’t even noon yet.