If Anyone Is Interested, M.S.A.; A Terrible Disease


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For those of you who follow me I thought maybe you would like to know a little bit about M.S.A. This illness is what my brother, Al has. It is not a fun disease, as most aren’t. This disease shortens the life by years and affects so much of the body.

I have spoken about it but it is a rare disease, so I thought I would share with you what I have learned.

 

Multiple system atrophy (MSA) is a rare condition that causes symptoms similar to Parkinson’s disease. However, patients with MSA have more widespread damage to the part of the nervous system that controls important functions such as heart rate, blood pressure, and sweating.

Causes

The cause is unknown. MSA develops gradually and is most often diagnosed in men older than 60.

Symptoms

MSA damages the nervous system. Symptoms can include:

  • Face changes
    • “Mask” appearance to face
    • May be unable to close mouth
    • Reduced ability to show facial expressions
    • Staring
  • Difficulty chewing or swallowing (occasionally)
  • Disrupted sleep patterns (especially during rapid eye movement (REM) sleep late at night)
  • Dizziness or fainting when standing up or after standing still
  • Frequent falls
  • Impotence
  • Loss of control over bowels or bladder
  • Loss of fine motor skills
    • Difficulty eating
    • Difficulty with any activity that requires small movements
    • Writing that is small and hard to read
  • Loss of sweating in any part of the body
  • Mild decline in mental function
  • Movement difficulties
  • Muscle aches and pains (myalgia)
  • Muscle rigidity
    • Difficulty bending arms or legs
    • Stiffness
  • Nausea and problems with digestion
  • Posture difficulties: may be unstable, stooped, or slumped over
  • Slow movements
    • Difficulty beginning to walk or starting any voluntary movement
    • Freezing of movement when the movement is stopped, unable to start moving again
    • Small steps followed by the need to run to keep balance
  • Tremors
    • May become severe enough to interfere with activities
    • May be worse when tired, excited, or stressed
    • May occur at rest or at any time
    • May occur with any action, such as holding a cup or other eating utensils
    • Finger-thumb rubbing (pill rolling tremor)
  • Vision changes, decreased or blurred vision
  • Voice and speech changes
    • Difficulty speaking
    • Monotone
    • Slow speaking
    • Voice is low volume

Other symptoms that may occur with this disease:

Exams and Tests

Your doctor or nurse will examine you, and check your eyes, nerves, and muscles.

Your blood pressure will be taken while you are lying down and standing up.

There are no specific tests to confirm this disease. A neurologist can make the diagnosis based on:

  • History of symptoms
  • Physical examination results
  • Ruling out other causes of symptoms

Testing to help confirm the diagnosis may include:

Treatment

There is no cure for MSA. There is no known way to prevent the disease from getting worse. The goal of treatment is to control symptoms.

Anticholinergic medications may be used to reduce early or mild tremors. Levodopa may improve movement and balance.

Carbidopa is usually added to Levodopa to reduce its side effects and make it work better. However, for people with MSA the response to medications may be disappointing. Many people respond poorly to treatment with anticholinergics or Levodopa.

Medications that may be used to treat low blood pressure include:

  • Beta-blockers
  • Fludrocortisone (Florinef)
  • MAO inhibitors
  • Vasoconstrictors (midodrine)
  • Vasopressin

A pacemaker that is programmed to stimulate the heart to beat at a rapid rate (faster than 100 beats per minute) may increase blood pressure for some people.

Constipation can be treated with a high-fiber diet and laxatives. Medicines are available to treat impotence.

Outlook (Prognosis)

The outcome is poor. Loss of mental and physical functions slowly get worse. Early death is likely. Patients typically live 7 to 9 years after diagnosis.

Possible Complications

  • Progressive loss of ability to walk or care for self
  • Difficulty performing daily activities
  • Injuries from falls/fainting
  • Side effects of medications

When to Contact a Medical Professional

Call your health care provider if you develop symptoms of this disorder.

Call your health care provider if you have been diagnosed with MSA and your symptoms return or get worse. Also call if new symptoms appear, including possible side effects of medications:

  • Changes in alertness/behavior/mood
  • Delusional behavior
  • Dizziness
  • Hallucinations
  • Involuntary movements
  • Loss of mental functioning
  • Nausea/vomiting
  • Severe confusion or disorientation

 

Bikini And Lots Of Skin


This morning Al woke up in an odd mood. He had refused last night’s supper and the night before supper too. This morning he struggled to eat breakfast. He really didn’t want to go to day program. He told me a couple of things. He said he didn’t have his chest pain but he felt odd all over. He also said that he felt like he was fading, that he was dying real soon.

Now you have to know that this bothers me so much when I hear him speak like this. I laughed and said, “You are not dying, you have a long time to go.”

I talked him into going to the day program as I felt it would be best for him. I also called the company and talked to them again about getting Al out of that wheelchair. They leave him sit in that hard old thing all day long. They finally listened and found a nice rocker for him.

The nurse called me about half an hour before Al got home. She said they were going to get him a new chair. I think I know what they are like. It is like a wheelchair but there is a padded chair inside that tilts back almost allowing him to lay down. Hospice said that they hope he will have it by Thursday.

Have you ever been in a position where you knew the news but it isn’t sinking in your brain? Or maybe worse, you are refusing to believe? As the nurse and I chatted I told her about the constant chest pains, the lack of suppers and him not really wanting to go to Day Program. I told her about Al’s remark about him thinking he was in the process of dying today.

She came back with words I didn’t want to hear. She said, “Terry, you and I know that Al is dying. Two doctors have documented it and obviously this is why he is on Hospice. It is very common to lose the appetite at this point and to also want sweets other than healthy foods. The next time he speaks of dying tell him it is alright to go. Tell him that if he wants to see Mom that it is alright; that you will follow along in your own time.”

I choked, I didn’t cry, but I choked. These are words I can not accept, at least not yet, maybe not until it is too late. Do I want to really tell him that it is alright for him to go? To not be afraid of dying? To go see Mom? How can I do this when I love him and want him here with me?

When he came home he was real chatty. This was nice. He had met a staff that put model cars together. From what he said they hit it off right a way and the staff promised to bring in one of the finished models the next time he worked. This made a complete difference in Al’s attitude. I am so thankful I urged him to go.

Al wants to go half-days. He says he just gets too tired. This may happen but not yet. We want to try the new chair first. We decided to have a pizza party, so I popped one in the oven since he felt better and we had pizza and pop for supper. He ate real well. I was watching him as he ate to make sure he didn’t choke and I suddenly noticed every fingernail was a medium gray.

The color never faded during supper. I have seen his nails go to dark gray and then leave before but never stand strong and stay and although he was eating well I was reminded that he is very sick and thought back to the conversation with the Hospice nurse. What if he mentions he wants to go see Mom? I guess I will swallow my pain and tell him it is alright to go.

It wasn’t a cheery day and I needed a good laugh to break the silence in my heart. I went through some magazines until I found a photo and I immediately started cracking up. I was laughing. Laughing over the picture and crying from the knowledge Al is so sick.

I thought to myself, am I going to be a swinging granny in my eighties dressed like this? Lordy, I hope not. I know men go through the change, will I also???? Oh my gosh what is the next chapter of my life going to be like? Here is the pic I cracked up at.

IMG_0563

Faith, Hope and Friendship


It is Thursday evening,7:30, and all is quiet. I feel like I am waiting for a package to arrive and maybe I am.

I have had some information for a week now but was waiting until I could tell you about it until I knew I wouldn’t break down half-way through the post.

I will say first off that anyone who prayed for Al and me and the situation about Hospice being involved did a great powerful job of praying. The prayer was answered. Hospice is going to be involved all the way.

The hours have been split between Hospice and the Day Care program. Al will have his bathing and dressing done between all of them. He will have 24 hour nurses at his door. He will be checked on regularly.

He even gets to remain active out in the community. I thought this program would end once he came home, but God wants him to be as happy as possible, so it remains.

I had the meeting with the State, the Day Program and the facility this morning. It went well until the administrator spoke his mind. He was considering not letting Al be dismissed because of the pressing debt we owe this place.

I was torn in pieces. My brother wants to come home so bad and yet he still owes over $3,000.00. To have to tell Al that he could not go home was enough for me to want to run and run and run. Just hide, never to have to see Al’s sad face and tears galore. I couldn’t deal with it.

Instead I spoke up and told him what I thought and what the Ombudsman thought and I told him that I would be following the directions of the Ombudsman, and that he would release Al tomorrow as planned or I would call the State back right here in the office in front of all.

He smiled that wicked smile, and then said I better make sure that bill is paid. I have 11 days left if anyone at all would like to make a small contribution. Any amount is helpful. The address is

http://www.youcaring.com/medical-fundraiser/too-much-pain-and-too-little-money/55964

I won’t ask again as the time for this fundraiser is almost expired. I want to thank all of you who have already helped and I want to apologize for asking one more time for help.

At this time, the hospital bed, wheelchair and lift chair have all been delivered. I have his bed made and the door is remaining open to open the room up some.

Excuse me while I choke a little. I told myself I am not going to cry. It is just I get tired. Tired of fighting everyone to get what Al deserves. Tired of the family that is left that never comes to visit. Tired of fighting the system, tired of the nursing facility, tired of seeing bottles and bottles of medicines and tired of sad news.

The news that I learned last Friday was not good. Al has another diagnosis on top of his Parkinson’s Disease. It is called M.S.A. It mimics Parkinson’s very much, but there are changes that happen that can place it in detailed form.

So many things have fallen into place this week. Why Al sweats so bad, why his illness has progressed so quickly. Why he cries more often than not. M.S.A. attacks the spinal cord plus the central nervous system and messes with the electrical system. His heart doesn’t know how to beat properly. He can have heart beats up to 300 per minute. The sweating is involved. Depression is very high. M.S.A. stands for Multiple System Atrophy.

I didn’t realize that the doctor had faxed this new information to the facility this week. I couldn’t figure out why so many were coming up to me and patting me on the back offering, I am sorry’s.

Then someone told me they knew. They knew what I had been running and hiding from. They knew that Al’s life had changed. Now I know for sure why Hospice is involved. Now I understand why Al is coming home on this precise date.  M.S.A. has a much shorter life span, and the news that I had to listen to from the doctor was, Al will probably not be here in six months. I want him to have everything he needs to be comfortable. He will end up aspirating from this. Food will go down into his lungs and this will take his life. I want you to have nurses around the clock for you to utilize.

These words still haunt me a week later. Life is going to be the best I can make it. For Al and for me. I am going to make a new memory out of every single day he has left. God knew all along what was going to happen. His plan was perfect.

So from here on out, it will be all of you, Hospice, Day Program and me, and I will get through this, because God knows I can do it.

Each day I will carry hope, faith and friendship until the very end.

friendshipFAITH-GIANThope

On That Friday Afternoon


I have sort of stayed a way from WP the past two days. I began writing today. I wrote a couple of posts so that I could ease into writing this one.

People always told me that God will reveal everything in his perfect time. I remember just a short time ago when I blogged about the cross necklace appearing in my hand when I was awakened by something urging me to wake up. I know how it got there. It could have been no one other than God. That necklace had been in my jewelry box for almost two years.

Do you remember me telling you that Al was to go to a new Neurologist on this past Friday? I didn’t really want him to go. We had a neuro for some time and I was content with his words that he had done everything he could for Al, but he would remain a PRN doctor, as needed.

The weekend that Al had tried to harm himself the Psyche doctor wanted Al to have a second opinion. To say the least I fought it tooth and nail. What a waste of time I thought. But after speaking to a friend about it, I was reminded that it couldn’t hurt to have a second thought from another professional with many more years experience on him.

Well I met Al over at the doctor’s office Friday afternoon. I hadn’t remembered it but we had seen this doctor  not long after Al had his heart attack. The doctor remembered Al and let us know we had been there prior.

He had so many reports from doctors and ER visits plus Al’s visit prior. He did a thorough exam and then asked me to come to his office. He left Al sitting in the waiting room while the two of us spoke.

He told me he had suspected Al had PD way back when and was amazed at how Al had declined in these few years. He added some more information to Al’s file and diagnosis and then asked me when Al was coming home. He asked me lots of questions.

When it was all done and the room became quiet, he began writing. He handed me one script. He added that there was no medications to give Al as there was nothing more to do. When I took the script from him and read it said, flashing starHospice to be involved. High risk of aspiration.

I looked at him and said,” I have tried to get hospice involved before, but they always say the same thing, there is no ending date for Parkinson’s Disease.

He looked at me and said, “now there is.”

Silence filled the room and I stared at him. He said, “Al is pretty bad. His heart has taken a big toll. I have all of the reports here that confirm it. His central nervous system is out of whack. His next step will be aspiration. You need Hospice now.”

“But you must have six months or less before Hospice will take over.”

“He does have six months or less.”

Tears filled my eyes and I sat there weeping until I could go get Al with dry eyes. As I pushed him out of the office and down the long ramp, everything became clear. God was revealing to me so many things.

1. Al went to the nursing home so I could have a break. God knew that now Al could come home because I have had enough rest I can carry this out to the end.

2. I knew exactly why I had taken the foolish move to Florida. It was for Al, I was able to give him some of his best years of his life doing things he had never done before.

3. I had tried so hard to get a job but couldn’t land one for the life of me. Now I saw, my time will come to work, I need to be here for Al for a while longer.

4. The heavy sweating, the constant tears, the struggling to eat and swallow. The internal tremors, the trips to the ER, everything became clear.

God has been letting me know by all the signs that he was going to take Al home. God knows that Al doesn’t want to die at the nursing home, so now he has perfected the timing and is sending him home. Everything is clear. I can see God’s plan.

Friday of this week Al comes home. He will get his wish and be able to stay here for the rest of his life.

The doctor, specialist, that I fought so hard to not go, was something God knew that I needed to do. The questions that I had asked for so many months, God knew that I would get all of my answers on that Friday afternoon.

Weekly Photo Challenge, Theme of the Week


catching-fly-12919722I spend a lot of time at home. I admitted yesterday on a post that I wrote that I can get deep into my zone by cleaning. Yes, I know it still sounds just as crazy today as it did yesterday.

But, I will have to let you in on a little secret, I don’t get off on cleaning the entire time I am at home. Sometimes I will bake some cookies and take them in for Al to munch on. But that idea is fading a way. Most times when I go in now and check his drawer of sweets, they are still sitting there.

The day I see that Al has not touched Pop Tarts, one of his favorites, I know the Parkinson’s Disease has truly consumed him. They are still sitting there unopened.

Sometimes I like to get on U Tube and listen to songs. If I think they are pretty awesome, I will transfer them to my web blog, Music That Calms The Soul. There are other times that the stress of Al and the sadness he endures just plain old makes me tired, and I will nap my afternoon a way.

But, now, I have someone else to keep me company. Rhino, my 25 pound cat. He is so fat and I have to say lazy, that if he wants something; it has to come to him within paw’s reach.

Last night he shocked me. I heard my antique bells on the front door. My first thought was that my son’s children had sneaked in to surprise me. I flipped around from my computer desk and lo and behold it was Rhino.

The flies must have really gotten on his cat nerves. He had tried to attack them through the screen. Luckily for me he didn’t indent the screen. He just knocked the front door back a bit and made the bells ring.

Gee, I hope he doesn’t find this entertaining and learn that he can make bells go off and make my own bells go off in my head. It was a quiet night. I had Mash on the television in the background. It was just Rhino and me.

I didn’t realize it but for at least a half an hour I watched and waited for Rhino to do his magic act and let me see him in motion. This is something I don’t see often. He either meows for wanting to be petted, or he is eating.

Even you can get some joy from this. As Ma says in the Golden Girls Sitcom, picture it, 2013, a very quiet house. No noise but the keyboard and Mash. Bells go off and as I flip around I see a 25 pound flying cat doing the disco song to , I’m gonna get you nasty fly.

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