MSA: A Weak Week

MSA: A Weak Week

This has definitely been a MSA week.  I normally try to live my life as if I’m no different that anyone else.  Well technically, I‘m not any different, we all know that no one lives forever, I just have a clearer picture of how soon forever is.  So I go about my business as if nothing is wrong, with of course my normal limitations.

This week was different.  As I write this I know, although those who do not suffer from the disease will empathize, it will be hard for them to understand.  For those of us that suffer with this disease or are a caregiver for someone who suffers, it will bring back memories, they will shake their heads in acknowledgment, or for those that are just starting their journey, give them some insight to what they can expect, or at least know they are not alone, others have traveled the road before them.

This has been a week that I have had absolutely no control of my life or my body.  There have been so many things I wanted to get accomplished this week, but found that I have spent every day laying in bed, flipping through television channels, or staring at the ceiling.  Well at least during the time I was not asleep.

I found that I had absolutely no energy to even get out of bed.  And if I could gather enough energy, I was so dizzy and wobbly it was a chore to even get from one place to another.  I have MSA-A, the autonomic part of the disease.  It was formerly known as Shy-Drager Syndrome.  It attacks the parts of your body that automatically works without you thinking about it.  It attacks things like blood pressure, temperature, heart rate, intestinal movement, swallowing, digestion; those parts of your body that you do without even thinking about it.  It’s amazing how many functions our bodies do that we don’t realize until it doesn’t work.

So basically my week was spent sleeping.  I know that now because my family tells me, but I don’t remember the week much at all.  My short term memory is starting to fail, so I finally get away with telling Susan that I don’t remember her telling me something and get by with it!  I think all men should be able to use that excuse.  It’s better than being accused of not listening.  Just kidding Sweetheart!

I do remember one evening being very cold.  Not like a “turn up the thermostat” cold, but a deep in the bone cold feeling.  It felt like it was coming from the inside out.  I reached out for Susan’s hand, and she said my hand was ice cold.  She says that a lot.  She reached over to me to feel my arm, then my chest.  She said my body was cold and decided to take my temperature to find I was at 97.3 degrees.  Hypothermia can set in at 96.8, so Susan, even though she is always complaining of hot flashes or power surges, turned up the thermostat and wrapped me up in a heating blanket and blankets on top of that and warm packs under my arms and in my groin area.  She said if you use ice in those areas to bring down a body temperature with a fever, she was going to add warmth there to increase my body temperature.  I eventually warmed up, I guess my internal thermostat kicked back in and took over.

On Thursday, the next day, I felt even worse.  I know I was irritable, but didn’t really care.  Both Susan and Angelina asked what they could do to help, but I just snapped back that there was nothing.  Honestly, I just didn’t know what I wanted.  I felt full and bloated even though I really hadn’t eaten much for days.  My head had a terrible pain, in an area it doesn’t normally hurt and I just felt so weak and drained.  I feel bad for snapping at them, this isn’t their fault.  I’m not mad at them, I am angry with MSA and I am so thankful they love me enough to put up with me and my mood swings.

I did learn some things this week, or had proof of things I have already known.  Just when you are at your lowest or neediest; God steps in and puts people where they need to be.  I was scheduled for a home visit from the physical therapist, but wasn’t really in the mood to deal with that.  Susan was fussing because she wanted someone to come and check on me.  I finally agreed to let her cancel the PT, but have the home health nurse stop by to check on me.  She left a voice mail for Josh, the therapist, and called Kathy the home health nurse.  Susan was concerned that my symptoms could be the flu and was thinking about leaving work early to come check on me.

Minutes after she hung up, there was a knock on the door.  It was Pastor Pelt from our church.  He had been visiting someone atKetteringHospital, and said since he was in the neighborhood, he would stop by.  Just as he was leaving, Josh, the PT showed up anyway.  He hadn’t checked his voice mail.  He checked my blood pressure to find it was 90/60.  Well that explains the dizziness.  A couple of hours later, Sheila, the on-call home health nurse, stopped by to check on me.  My blood pressure was 104/96 at that time, so I was improving.  I had never met Sheila, and she was not familiar with MSA.  She admitted to Googling MSA before she came.  We talked at length about the disease and the symptoms associated with it.  She also said she never questions where she is sent.  She believed she was sent to visit me and Susan for a reason.  Being a nurse, she was able to assess my condition, giving us her opinion of what our course of action should be and we were able to give her an education on a disease she was not familiar with.

On Friday, I gathered enough strength to get up and eat a bowl of raisin bran cereal.  Angelina on her way to work stopped by McDonald’s and picked up a breakfast wrap and coffee.  She knows I think McDonald’s has the best coffee in the world.  I ate both and seemed to feel a lot better.  Susan had also picked up my prescription of Senna from the pharmacy and I had taken a dose of that at bedtime the night before.  Dr. Apple had said as long as your intestines and colon don’t operate properly, your body will think that it is full; which explains why there are times I don’t want to eat.  The Senna which can be bought over the counter is a laxative that I find is very effective.  To help avoid the constipation associated with MSA, I find the Senna along with Amitiza are very effective.  I was also prescribed by the neurologist at The Cleveland Clinic what she called “Power Pudding.”  It consists of one cup bran, one cup applesauce (I use cinnamon flavored) and one cup prune juice.  Susan mixes it up on Sundays for me and it lasts all week in the refrigerator.  I take 2-3 tablespoons every morning.  It is all natural and can be used for anyone with constipation, not just MSA patients.

I am also finding that when speaking my voice gets weak.  I thought maybe it was due to a deterioration of my vocal chords, but the doctor tells me it is my diaphragm that is getting weaker.  I’m sure you’ve all watched movies or something where the vocal coach presses on a singer’s midsection and tells them to sing from their diaphragm.  The diaphragm is the major muscle of respiration and separates the thoracic and abdominal cavities. The body relies on the diaphragm for normal respiratory function and your voice projection is directly related to the amount of your air intake.

Since MSA causes atrophy to the muscles, both the diaphragm and the heart are muscles are affected.  Any problem in either the neurologic or anatomic processes will result in decreased function. Neurologic problems of the diaphragm occur when a disease process decreases or terminates the impulse of respiratory stimuli originating in the brain.  Since most MSA patients succumb to respiratory failure, I know it’s another step to my final destination.

I am trying to pace myself for the upcoming weeks.  March is MSA Awareness Month and I am scheduled to receive Proclamations fromFairborn,Kettering,Riverside, Beavercreek andXenia,Ohio.  That will be five meetings I will be attending within a short time.  I am also preparing to participate in the 5 Mile/Run Walk for MSA sponsored by the Dayton Barefoot Runners.  You can get more information or register at:

http://www.active.com/running/fairborn-oh/5-mile-run-walk-for-msa-2012

Until next time, take care of yourselves, love one another and special prayers go out to all those who are suffering with this horrible disease and their caregivers.

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17 Responses to "MSA: A Weak Week"

  1. Hi frank, This is Dennis mom,how do I go about getting a walk started for MSA here in indianapolis,in .I am not very wise,and need help. We walk and have since 2005 for Light The Night,for Leukemia,of which my great Grandson died at the age of 23 months old.I would really love to start one for my son,Dennis,and all MSA patients. Sincerely, sandy foster, take care

    Reply
    1. Sandy,

      There should be a contact number on the link in my story for Ray Olfky. He is very active in organizing these types of runs and may know someone in the Indy area that he can refer you too.

      Hope Dennis is doing well. Tell him and Lori we said hi!

      Reply
  2. Hello Frank, thanks once again for your honesty in sharing. So many people love you and pray for you! You are a very special person – maybe it’s because of that wife and daughter of yours 🙂 We love you all!

    Reply
    1. Thanks Bev,

      You have no idea how much MACOG and all of you have helped give me peace through this. And of course I couldn’t do it without Susan and Angelina.

      Love you all!

      Reply
  3. Frank,

    So sorry to hear about your week. I know you can have days and weeks that are hell with this disease. The good news is usually there are some good ones that follow.

    One note, remember on the temperature that if taking it in the armpit (axillary) or with a forehead reader, these can read cool with MSA due to the constriction of the capillaries. The only true reading is rectally or with a good temporal thermometer. MSA patients cannot cool the body, so heating it with the hot packs can be dangerous. I do not want to sound preachy, just sharing some experience.

    Please keep writing, you have a talent.

    I wish you and yours well.

    Scott

    Reply
    1. Thanks Scott,

      We are very careful when we have to reheat me. Susan is very careful about monitoring my temperature while she is warming me.

      You’re right about several bad days finally followed by a few good ones. I dread the time when they are reversed.

      Best wishes,

      Frank

      Reply
    1. Pamela,

      I am so sorry to hear that you and your husband are also on this nightmare journey.

      I don’t know which type he has or how advanced, but I know he appreciates what you do for him as much as I appreciate what my wife and kids do for me. We don’t always say it, but it means the world, especially when I am taking out my frustration with MSA on them.

      Hand in there.

      Frank

      Reply
  4. I hope the good you are doing with your MSA awareness efforts offsets even a little of the suffering you all are going through. You amaze me with the things you are able to do in spite of it. Prayers are always with you, take care as best you can.

    Reply
    1. Bonnie,

      I know of at least 2 cases here localy that have been diagnosed because of my efforts to bring awareness to MSA. I am hoping if we can identify enough people with the disease, maybe they will do more research to find a cure, or at least some comfort medications.

      Thanks so much for your support.

      Frank

      Reply
  5. WOW, you are amazing. You continue to fight the good fight when the rest of us complain about the minor ailments ofthe day. God bless you Frank, Susan and Angelina as you make it through this trying time.

    Reply
    1. Bob and Kay,

      Each of us have our crosses to bear. I’m just more vocal about mine than others are. I guess I believe in the old saying if life hands you lemons, make lemonade!

      Love you guys!

      Frank

      Reply
  6. Dear Frank (and Susan): Today I find myself checking your blog to see how you are doing. Much has happened in a few months. Your recent writings reveal a number of key facts about MSA and the struggles of those who live with it – I include patient and the loving caregivers in that category. (1) Loving relationships and frequent ‘normal’ fellowship is so very important and lets us know what life is really all about – even under such awful circumstances. (2) Guidance & help from visiting therapists and nurses is essential. [But you know all about the ‘overhead’ that comes along with this in order to coordinate it all effectively. (3) Advance directives and health care proxies are absolutely essential. There is no doubt that in emergent care situations the caregiver will be educating the medical staff as to what MSA is all about. (4) You need much prayer – and much prayer will see you through.

    Frank, you spent a little time considering the experience of death. I personally don’t think anyone will ever get their mind around it it on this side. But I do want to share with you something Dreama and I articulated together a few years ago to be inserted in her Living Will. It is this: “I want you to understand that I value my life, and all the relationships that are dear to my heart. I would rather continue to enjoy life. I know that God has chosen for me a most difficult disease to live with in my final years on earth. But I also know that my Heavenly Father has prepared another place and an eternal future for me. I now am able to live daily through the knowledge of God’s love for me. One day He will call and tell me the time has come to go home. When that time comes, I do not wish to delay. I will follow Him with no other assist but His own outstretched hand. And I shall receive a more perfect body for my new home in heaven. [Based on promises from I Peter 1:3-9 and Philippians 3:20-21.

    I will pray for you. I know you both are experiencing life and aspects of real love and commitment that shouts out to all around that your lives are so very, very important and precious.

    — Trevor

    Reply
  7. Hi Frank
    Just read your blog and was wondering how you were feeling. I have not been diagnosed but share all the same symptoms. Did it take long for your diagnosis? Hope you are well.
    Laura

    Reply

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