Darn Body, Darn Parkinson

Today was and remains Christmas  for about  five more hours .  I have been visiting  my son and his family since Halloween  and will be  returning  home New Year’s  day.

It has been fun and came with challenges  as is expected  when you  have  any  extended  visit. The most fun was watching the kids play, hearing the baby giggle, listening to homework  being done, and remembering  back to those days with my own kids.

I have been able to visit with friends and have many laughs and talks about old times. The weather has been good to me. There was only one day so far, that was pretty  cold.

The bad things that happened  were internal with me. The internal tremors  are slowing me down .  My legs hurt and ache so much quicker  than six months  ago .  My stomach tremors and causes stomach aches and loss of appetite .  Parkinson  makes me more tired than before. I feel like one of those nineteen eighty  toys, weeble wobbles. I get pretty unsteady  and one day here, I  actually  fell, bending over trying  to find something .  I  hate bending over, even for a dishwasher .

Trying to fix the goodies that I  have  done for years, plain wears me out. I make one thing and I  have to rest for a bit before I  start fixing something  eles .  This year I used a couple  of days to fix things for Christmas  meals. It doesn’t  hurt to do this. It just  makes me recognize  I have that invisible  illness.

Tomorrow  my daughter and my other son’s  families will be here and we shall all celebrate  together . I’m  going to do my best not to look lazy, but I  am just drained, and  my body is worn out.

I hope all of you  are enjoying  your  Christmas  holiday. Hugs, me.

Each morning when I wake up; I feel so awesome. I get my coffee and watch the news a little bit, then time to get ready for work. This is when the problems start in. My legs, they are a burden to me. I never thought I would say something so silly like this.

We take our legs for granted. We walk, run, trot, ride bikes, roller skate, feed our pets, grocery shop, go to work, walk great distance in a day without thinking anything about it. Then something happens and all of a sudden we notice those body parts attached from our hips.

For me, once I start moving around, my smile tends to dull. My legs are creeping into a heavy mode, and I have noticed when I trip over things, my feet are not lifting up high enough.

I eat my breakfast, get dressed, brush my teeth, make my lunch, all the while noticing that aching in my legs. I go to my car and drive to work. By the time I reach my six-minute drive, I get out of the car and my legs are trembling or have tremors; as it should be called from using them already too much.

I paste on my smile. I check my attitude as I open the front door to the office and I walk in. Some days I can’t walk in without my cane. Other days I get lucky and have smooth days where I barely think about the cane.

I have already noticed that longer period of drives makes my muscles hurt quite a bit, so when I learned last week that I had a mandatory meeting an  hour away, I was stressed. I wanted to do what the boss stated, but I knew I had a chance of being in more pain for the day than usual.

I finally told myself, the only chance you have of getting around this meeting was to sit with my boss and explain. I did this 2 days ago and today was informed, I do not have to go. I am so thankful that God put the right words in my mouth. Now a transcript will be delivered to me and I can take notes of the meeting tomorrow.

There are many Parkinson’s patients much worse than me. I am still considered a new patient, although I have had symptoms since August 2013. I hope that my gait will always be my worst part of Parkinson’s. I know that doesn’t sound nice ; but I could have worse tremors or lose the ability to stand or become wheelchair bound.

Tomorrow I go to the pharmacy and pick-up my walker. I will try to use my cane so I can retain my strength, but the walker will assist me in gait if I walk a little more distance. I changed my header on my site. It now reads about HOPE. We all need hope. I need hope. I will live with hope each morning I get up and go about my day; whether a day off from work or a work day.

Parkinson’s disease, conceptual artwork

Stop the Train, I Want Off!

I didn’t blog yesterday and I have been debating whether to or not today. I am making myself blog because it is too easy to get out of writing by skipping a day or more.

Yesterday was not a good day for me. The Senior Center went on one of their monthly outings. About twenty minutes from my house in a little town lies a small-time restaurant. I had never been there in all the years I have lived here in Warsaw; so really wanted to go.

When I woke yesterday, I felt like something had happened during the night that I didn’t know about. I felt different. I hurt and my tremors were different. This time they were not only on the inside, they were visible on the outside.

I felt like crap but it was the day of the outing. I made myself get up and get ready to go. When I arrived I wanted to race home but I told myself no. I knew I wouldn’t feel any better being home than here.

I was so embarrassed when my plate was filled from the buffet because my tremors wouldn’t let me carry my plate to my seat. Someone offered to do it and I thanked them. As I started to eat, I couldn’t hold the fork. The food was falling from the fork from the tremors.

I ate some but I think emotions took over and I excused myself, paid for my meal and headed home. I laid down and napped and when I awoke, the tremors were right back. I suppose the tremors are causing muscle pain because although I am not as full of tremors today, I feel like my muscles are falling from my bones.

When my body reacts this way, I instantly think to my daughter who lives six hours away and kick myself for moving back because she is the only person who seems to understand. If she doesn’t understand, she does a good job of faking it.

I moved here, home, because I knew that I was too young to go on to the system, government system. I knew that I could still work. I did get a job through the government program, but if any of you work through that system, it takes a lot of red tape, many visits to the office. I am still not working and yet have spent many trips of gas and time.

Also when I get like this I can’t seem to help myself from visiting the past of when I was taking care of Al, my brother. Of course this makes me sad and then I get depressed and that is another time I miss my daughter. She always had a way of getting me to smile again.

I am beginning to wonder can I do this? Am I really going to be able to work? Should I spend what little I have and give up and get on the system? Am I going to have to face hard, cruel facts that me and my cane are constant companions? Will I stop the questions? I don’t know. I always liked to know a good idea of my future, and anymore, I do not.

Suffering through any type of medical problems are not fun as we all know. Suffering and not being able to talk to anyone who has any inkling of an idea of what I am feeling is a whole other story.

I am meeting my son and his family tonight for dinner so I can see the kids. I haven’t seen them since May 29th. I only hope that it goes well and I don’t embarrass myself or anyone else.

All these symptoms started in August of 2013. It started with running into the walls, which I blamed on being tired from caring for Al during his MSA. After that, I went a long period of pain where it felt like my muscles were being torn away from the bones.

Next, came some slight head and hand tremors, add to that a little bit of confusion, and now my gait is off and tremors are becoming more of an issue. I say, stop the train, I want to get off.

Never did I want to get to the place where someone has to carry my plate, or help me in any way. I am the one who wants to help everyone else. Well, I don’t know at this second if writing this will help me snap out of my sadness; but I am hoping.

Chapter 22

The test was scheduled for the next day. Al asked a lot of questions but I assured him it was not going to hurt. I explained how they were just going to take a fancy picture of him. He seemed content with that.

I was there when the specialist arrived. He set everything up and explained the procedure to  Al and me. After the wires were attached he begin doing his magic. When it was all done, the…

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Chapter 22

The test was scheduled for the next day. Al asked a lot of questions but I assured him it was not going to hurt. I explained how they were just going to take a fancy picture of him. He seemed content with that.

I was there when the specialist arrived. He set everything up and explained the procedure to  Al and me. After the wires were attached he begin doing his magic. When it was all done, the doctor showed me what he had suspected.

Al had some brain damage happen from the seizure he had. He said that I should not be surprised if in the near future Al would begin to show Parkinson’s Disease as it was so strong in the family.

Al didn’t seem to really understand and I explained as briefly as I could. I didn’t want him to get this disease. I had seen the effects of it with three different family members. The specialist unhooked everything and left.

The next day Al was released and we went back to our normal routine of living. I tried to brush the doctor’s words to the back of my mind. Why worry when he showed no signs of it.

About three months went by from that day at the hospital. I started noticing Al was tripping over himself. He fell a few times getting in and out of the truck. I tried telling him to be more careful, to walk slower and not to be in such a hurry, but in the back of my mind, those stored words were starting to surface.

The next time he fell out of the truck was the last time. He not only cut his legs but he was limping. I called the family doctor and made an appointment to take him in. After seeing Al, he sent him to a sports doctor.

The new doctor did x-rays on Al’s legs and he had torn ligaments in both knees. That was the last time Al rode in that truck. We went car shopping and got something that Al could get in and out of with ease.

Nothing stopped for him. The car made it easier but then a slight tremor started being seen in Al’s one hand. It went from there to the upper arm and then on the same side the leg started to twitch.

Once again I called the doctor. After checking him he thought it best to send Al to a neurologist. He told me he was pretty sure Al had Parkinson’s Disease. I smiled at Al as the doctor spoke but inside I was screaming, no, no, no.

The appointment took a couple of weeks. In the mean time Al didn’t have the tremors too often. When he did have them I could see they bothered Al. He always told me he was trying to get them to stop but he couldn’t.

I started researching this nasty disease. Although I had been familiar with the word and had seen some of what it can do, I needed to know more. I didn’t like what I read. I kept reading the same thing over and over, no cure and gets gradually worse. The worst I read was there was no cure and Al could suffer for years with this.

Upon arriving to the appointment he had Al do different tests. Strength and walking, squeezing fingers, and gait. The doctor diagnosed the final words Parkinson’s Disease. He explained about exercise and how Al could benefit greatly from it. He explained how the tremors may spread from the one side to both sides. He said the head could shake or the lips tremor.

I shook his hand and thanked him for the insightful information. Everything was going to be different from now on. My family members had terrible tremors and one of them ended up in a wheel chair. I was going to make sure Al lived life and had as much fun as he could possibly have while he could.

There was nothing really prescribed for Al at that time. There were no special changes that we made. We just waited and dealt with what he was given each day. The tremors did continue. They moved from the one side to both sides.

He didn’t have the lip tremor and he didn’t drool. Other than the shaking of the hands and legs he led a pretty active life. I continued to allow him to go to his adult day care. I wanted him to not have to think too much about the doctor’s visits.

He was scheduled appointments every six months to see if the disease was progressing. Only then did we actually voice the word Parkinson. Al still went on the outings and seemed to be having a good time.

I then started hearing him complain about his hands. I had noticed they were shaking a little stronger than in the past. He was mad because he was beginning to lose control over them. He was beginning to spill things he was trying to hold.

I noticed that he would sit on his hands to get them to stop shaking. For some time that did seem to help. The more he seemed to struggle the more I began to spoil him. I took him  out to eat all the time.

We went to the flea markets and shopping. What ever clothes he wanted I tried to buy. We looked for coca cola items even harder. Life was still pretty good when I look back at it now.

He then began to complain of chest pains again. I took him back to the heart doctor and his exam showed him that Al was just stressed out from the shaking. He started prescribing calming medications. Before too long had passed, Al was on Parkinson’s medications along with antidepressants and also  the calming medications.

My God, My God, Hear Our Cries

My God, my God

Please help

With all you can

Let me lean on you

As I am so very tired

Please God please

Let someone hear

My call for help

With Al

Last night the

Tremors were awful

We were both up

Until six this morning

And two hours

Later I am feeding him

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My God, My God, Hear Our Cries

My God, my God

Please help

With all you can

Let me lean on you

As I am so very tired

Please God please

Let someone hear

My call for help

With Al

Last night the

Tremors were awful

We were both up

Until six this morning

And two hours

Later I am feeding him

I can’t do this alone

Already I am

Hearing I can’t eat

This breakfast

I am not hungry

And I turn to look

As his hands are

Beating the table

As the tremors

Move for ever more.

Here I sit at my computer

Tears falling from my eyes

Playing every song

That speaks of God

In hopes he hears

Al’s and my cries

Written by,

Terry Shepherd

 

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Less Tremors, More Naps

Yesterday was another one of those days where the tremors had decided to give Al’s body

parkinson (Photo credit: ibarakaldo)

a rest. Sunday was like that also. He has been more smiley these past two days than any other days. I wish I knew, once again, what it was that is allowing him more calmness, because I would make sure I kept that activity a priority. Again, though, it could be all the prayers, and it could also be the fact that he is now in his final stages of PD.

Parkinson’s Disease, from what I have studied and researched, can prove to have tremors become less and less in the fifth stages. I am not sure what causes this, but there is a part of me right now, that if this is true for Al, I almost wish the tremors would flare up to their normalcy again. This way I don’t have to think of any ending at all. I hope this makes sense to  you.

I love my brother and although he suffers many days, I don’t want to be unselfish. I don’t want to ever say goodbye, but that is selfish, and I have placed Al in God’s hands many months ago. I have to trust in God that he has this all in his control, and is doing what is best for Al and for me.

This morning, I knew that Stanley Steamer was coming to clean the living room carpet and the pathways of both bedrooms. I had put off picking up the small items until this morning, knowing I would have plenty of time. They were not to be here until the hours of 9-11AM.

Al got up at nine and we proceeded to get his breakfast fixed along with medications distributed. While Al eats his breakfast, I go into my bedroom and pick up throw rugs, and shoes, and anything else I see lying around.

I go into his bedroom and  pick up numerous coke items strewn on the floor. Now I tell him constantly not to leave items on the floor as it will cause him to fall easier, but he doesn’t listen to me. I go over to make his bed, and find the bed pad and the sheets soaked.

I was really surprised, because Al is always wet, but never soaks the bed or bed pads. I go ahead and pull  all dirty sheets off and start a load of laundry. I disinfect the mattress that is thankfully, plastic. I place the clean sheets on the bed and make it nice and clean for him. I clean the commode and the urinal, and then I go out to the kitchen where he is still eating, and ask him if he had any problems the night prior, and he says no.

I mention that the bed was a little wet and he says he doesn’t know how it got that way. Alright, whether he does or does not remember, is not a big issue, and I will not bring up any reasons for him to feel more guilty than he already does with the side effects of this disease.

So all is done in his room, and he is all finished eating, so I take him to his bathroom, and do a total wash up and get all clean clothes and a clean brief  on him. I breathe a sigh, as I know for now, he is all taken care of and smelling fresh.

I still have my house robe on and as I start to go to my bedroom to get dressed, the door bell rings, and low and behold, the cleaning company is well on time. I am forced to answer the door with hair unkempt, my pretty blue full length flannel house robe, and I try to divert their eyes by giving them my biggest fake smile I can produce. They both look at me, and smiled, saying, hi, we are from Stanley Steamer. I am thinking uh duh, I see the truck dudes!

I let them in and tell them I was just on my way to get dressed, could they forgive me while they get out their equipment, and they nodded yes. Well, they have come and gone, and the carpets look great! You have to wonder how carpets get so dirty when we both take our shoes off at the door, but they do, believe me!

So here I sit at the computer, Al is dozing on the couch as he is commonly found now, which I still have issues with getting used to. Al is a routine man, and he knows by his own rules, that there is no sleeping until three PM, nap time, so to find him napping mornings and evenings is still new to me. My white socks that I am to wear, waiting for the carpets to dry, which will be about four hours,  are already soaked. My feet are shriveled like prunes, my body is cold from having two fans running on the carpets, when it is only 50 degrees outside, and Al is lying with no covers on, head cocked to the side, sound asleep.

The day is good, Al’s tremors under control, clean bed, laundry working, my two cups of coffee drank, and carpet sparkling once again. Can it get any better???

Calm Tremors

The sleep that I got did me so much good

I’d wish for it each night, if only  I could

I had the energy today of a big  jumping jack

I cleaned the house thoroughly never looking back

The hospital bed and commode are in place

I cleaned his room and also threw the waste

I sorted the summer and winter wear

With his weight loss, now the closet is bare

His tremors were calm, and a smile did show

So I took him to supper and then we did go

To Wal-Mart he headed straight for the toys

To buy a new car, he fitted in with all little  boys

He grinned as he picked it and showed it to me

I smiled at him, as proud as a sister could be

I wish every day was just like today

But I will take what I can and thank God for this day.

 

I Am Sore

When there is a Parkinson’s patient in the house, it is not a good idea to plan many things

Audio baby monitor (Photo credit: Wikipedia)

in advance. I have never been this way. I like knowing what tomorrow holds, and maybe the next week also.

Today, I have not been on the computer much, not because I don’t want to, but because I am so sore. I don’t get too much sleep anymore, because Al stays awake until wee hours in the mornings. Last night was no exception to this now familiar routine. I think I went to sleep about 2am and at 5am, I heard the music of his voice coming through the baby monitor that sits by my head on the night stand.

It is a good thing I am a light sleeper, because I heard a soft voice saying help me, help me. I jumped up like there was a fire, and walked quickly to his bedroom, and there he stood in a half-bent position, clinging to the corner of his dresser with both hands. His knees were bent in half from waiting for me to arrive and from however long he had tried on his own to make it to the bed.

He had to use the restroom, and he is trying so hard not to wet his briefs, that he helps himself to the floor and off he trods to the bathroom, and I keep telling him, please call me when you need to get up, but he does not want to give up his independence.

So, I look quickly around, and there is nothing anywhere to help me. I hold him up with all of my sleep power, while I watch his body tremor, and  his legs will not move. His body is frozen, a part that goes with PD. The mind is not connecting with the legs so when he tries to move, the legs don’t follow, and this is a big reason there are so many falls with these patients. I have seen him rock back and forth on his top half, but the bottom half are frozen to the floor.

I am not kidding, I told the legs to move, I marched in place, trying to get his legs to follow my actions. This went on for about five or six minutes, until finally movement was seen, but it was a battle to walk him to the bed. Now my back and shoulders and neck are throbbing from trying to hold him up.

I called the home health care nurse and told her what had happened and she said it was time to get a hospital bed and a bedside commode. We just happened to have a doctor’s appointment today with his neurologist, so I relayed the message to him.

He had not seen Al since February as he is pretty much a PRN doctor now to Al. He was surprised at the changes that have progressed in him. He spent quite a bit of time talking to me about the different areas of PD and he said that this was a bad case.

He said that the complete brain was being affected by the disease, and that Al could not help talking about death, as this is what Al’s body felt like to him. When the doctor mentioned a sunny day, Al said it was gloomy in his head. The doctor explained that Al was in the fifth and final stage of the nasty disease, and he was more concerned now with what he called , supportive care.

In other words, making sure that what ever Al needs to make him more comfortable, if I can pull it off do it. No more medications can be given for pain, so now two doctors have said no more pain med trial and errors, I am forced to believe it.

He wrote a prescription out for the commode and hospital bed, and it will be delivered here tomorrow at noon. It is sad for me, I have had too much information given to me, although, I need to know what is happening in our lives.

Remember the lady who sent Al the two boxes? Well, she and her husband drove four hours to meet Al and me today. We met up at Al’s favorite restaurant, the soda fountain. It was wonderful to meet them both. God picked the perfect timing for this, as for an hour it got my mind off of Al and onto other things, and she spent a lot of time talking to Al about coca cola. He loved it, but as he tired out, he started crying, and it didn’t stop, so we all hugged and said our good byes, and maybe one day we shall meet again.

We came home and I helped Al get undressed from the warmer clothes I had dressed him in the morning when it was chilly, to his favorite outfit, just his brief. He gets so hot and sweats so easy from the PD.

Tomorrow is a new day and it will be a big day more for Al than me, although, I will have to make sure my house remains straightened up. One therapist will be here at 8:45am, his shower girl will be here at 10:30am. The bed and commode will arrive at noon with complete set up done by them. Another therapist will be showing up sometime during the afternoon, and the home health care nurse will be here at 4:15.

I am not looking forward to all of activities. No nap for Al and no nap for me! LOL

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