Howdy Hydrocephalus

Understanding my unique gyroscope


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Fatigue Tips – my ass

images (2)I remember when I attended a support group for ten TBIers like myself. The support group was run by two to three employees who basically ran it Nazi style by shoving their agenda and information down our throats. Instead of facilitating. It was interesting to be a part of in slightly sick and twisted way. I felt like it was a train wreck and I couldn’t look away. I really hated going as it was kind of embarrassing to sit through. It allowed for very little discussion and information was spoon fed to you like you could not understand. It felt that there was a us versus them scenario and we were the broken “thems”.

However, I know one of the facilitators and it was run with the best intentions, but from the intentions of a “normal” person. Because this person worked at a Brain Injury Rehabilitation place, she should have known that brain injury does not affect intelligence but instead affects other cognitive factors that can make us seem not intelligent. It felt like we were not respected as adults.

I remember that that one week of the eight week program was about fatigue. It really irked the information fed out was that fatigue was our fault because of exercise, motivation, eating, and sleeping habits. The suggestions were all well meaning but fucking utterly useless and made me angry that Brain Injury workers had nothing useful to give use. Everyone went very quiet in the room and looked down. There was anger, defeat and pure frustration oozing from everyone. I really didn’t like the suggestions because each one was more of an assumption that it was your personal fault for the fatigue and you were not working hard enough to fix it.

For example, you are experiencing fatigue because you do not exercise enough, eat healthy enough, do not have proper sleeping habits, not motivated etc…. We were not all newbies with our TBIs we have tried all and continue to try to use all the techniques but still are experiencing issues. When I asked about medicines. We were not encouraged to discuss what meds or techniques have worked for us, the TBIers, I was not able ask any of my fellow warriors. We were told that we had to discuss anything with our doctors. Doctors are human and sometimes at a loss too so hearing what other doctors have tried with other TBIers is very important.

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My fatigue level ranges from moderate to the extreme fatigue all the time, even with my awesome new meds. It is no fun, but mid day rests are still mandatory in my life. My energy levels fluctuate throughout the day like anyone else’s but they may wane and fluctuate way quicker.

Fatigue is defined as:

fa·tigue
fəˈtēɡ/
noun
noun: fatigue; noun: fatigue detail; plural noun: fatigue details
  1. 1.
    extreme tiredness, typically resulting from mental or physical exertion or illness.
    “he was nearly dead with fatigue”
    synonyms: tiredness, weariness, sleepiness, drowsiness, exhaustion, enervation,languor, lethargy, torpor, prostration;

    war-weariness
    “his body was slumped from fatigue”
    antonyms: energy
    • a reduction in the efficiency of a muscle or organ after prolonged activity.
    • weakness in materials, especially metal, caused by repeated variations of stress.
      plural noun: fatigues
      “metal fatigue”
    • a lessening in one’s response to or enthusiasm for something, typically as a result of overexposure to it.
      “museum fatigue”

images fatigue-symptoms

600px-Signs_of_fatigue pain sc TR_6_1 fig 1

TBI fatigue is often very hard to manage and is often a long-term affect when adapting with a TBI. I still have a hard time dealing with fatigue. I loath being fatigued. I really could not explain it to anyone until a friend of mine with Lupus posted The Spoon Theory by Christine Miserandino at www.butyoudontlooksick.com. It is the easiest way to explain to anyone about chronic conditions and fatigue.

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The normals methods to help with regular fatigue such as exercise, cutting caffiene, cutting sugar, eating healthy, and reducing stress do not work for TBI or other chronic conditions. I was going to write down my own list of suggestions to help minimize fatigue in daily life, but I found a great blog post by a fellow blogger and TBIer. Simple Tips to Manage Fatigue with Brain Injury, Memory Problems, and Chronic Illness to Self Rehabilitate

I am will not waste my precious energy re-inventing the wheel when this article has some awesome advice.  Cheers to the days with extra spoons and Boo to the days where you boom then bust.

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One List at a Time

Last week I had my first Occupational Therapy (OT) Appointment.  The person who I am assigned to asked me lots and lots of questions.  As soon I was done my session, I went to the main lobby of the hospital and fell asleep on the semi-circle couch while I waited for my ride.  When I got home, I wrote down on my phone the questions, so I could to go through in my head again – I really wasn’t confident if I answered truthfully.  For example, I was asked if I cooked by memory.  Yes of course I always do.  Yup but before surgery I was forgetting key ingredents in recipies that I have known since I was seven.  After surgery…what have I really cooked…I can’t remember.  Pretty easy stuff…put meat in slow cooker and leave it, frozen pizza, chicken nuggets (have to follow the directions on boxes).  I did realize that I forgot how to make gravy.  So I guess I will be using All Recipes or my favorite cookbooks (if I can find them) regularily now. My homework was to make a list of all the steps needed to get the kids to school on time without anyone helping.  So I made a list and the test run still had me missing stuff like getting the kids to brush their teeth and wash their faces.

This week I went in for my OT session and we went through the list again.  We broke it into two lists – things to do the night before and things to do in the morning.  Test run this morning went okay and we ended up getting everyone to school on time without forgetting anything with the help of my dad.  My downfall was that I was not prepared for the rain and in the process of trying to find a pair of jeans for me to put on, I became distracted and started taking out all my summer clothes to put away for the season.  Can you say slightly ADD – yup that is me at the moment and it all normal and will hopefully go away as the brain heals.  I have gotten an Iphone app called VoCal for my Iphone 4.  I love that it will give me a text reminder and then give me voice reminders every minute until I acknowledge the reminder.  This will help me a lot when I am on my own.

I am learning to not get frustrated with me and just accept that it will take time for my brain to heal itself.  In the meantime, I am relearning all the once unconscious steps that were in my life One List at at Time.


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NPH – Normal Pressure Hydrocephalus

On my quest to find out more information about my condition, I have come to the conclusion that there is lots of info for children and older adults.   Normal Pressure Hydrocephalus or NPH it is commonly called, usually affects adults over 65 years old and can be from no known cause or developed secondary as a result of brain trauma (bleed, tumor, infection).  I was fascinated by how NPH can be easily misdiagnosed as  dementia,  Alzheimer’s disease, or Parkinson’s disease.  Approximately 5-15% of the patients with dementia have undiagnosed NPH.  Once treated for NPH their dementia often disappears and quality of life increases.

I haven’t watched Grey’s Anatomy for years, but I will have to watch season six episode eight because one of the cases is thought to have Alzheimers but instead has NPH.

TV Guide recaps season six, episode eight titled New History where

Izzie pops up at Seattle Grace, but reconciling with Alex is not on her mind. Instead, she begs Meredith to ask Derek to examine Dr. Singer, her high school biologist. Izzie crossed paths with him while staying with her mom in her hometown, and because he’s believed to have Alzheimer’s disease, he’s been removed from teaching and put in a nursing home. Izzie, however, believes he’s too young to have Alzheimer’s and believes he could have inter-cranial bleeding due to a fall.

Unfortunately, all of Derek’s tests come back negative, but because everything out Dr. Singer’s mouth is about Izzie at age 15, Derek assigns Dr. Percy to do a full dementia workup. Since Izzie partly blames being fired on Dr. Percy, she is less than thrilled to have him on the case. They argue about Alex and pretty much everything else, including Izzie’s demands that Dr. Percy do a spinal tap. He reluctantly does, but the results are also normal.

Suddenly, however, Dr. Singer is completely lucid. Because of the spinal tap, excess fluid that had been crowding Dr. Singer’s brain was relieved and restored his capabilities. Derek decides all that is needed is a permanent shunt.

During my Internet searches, I did find a closed facebook group called Adult Hydrocephalus that currently has 17 members.  There is a website attached to this group but it does not offer much information as the website is still being developed.  So far in this blogging journey I have met some great mother’s with children who may be pre-disposed to hydrocephalus due to their various neurological syndromes.  I will hope to share some of their experiences in the future.

If you have a parent, partner or friend who is over 65 and is showing signs of dementia, please have the doctors rule in or out hydrocephalus.  Adovcate for your friends and family and educate your doctors on the mimicing symptoms that NPH has to dementia.