Tuesday, October 1, 2013

The Double Whammy

Don Garrett and Billy Jack Knowles

Billy had a special visitor last week. Don Garrett paid him a visit, and I'm sure I enjoyed it as much as Billy. Don and Billy were buddies in college - playing trombone in the Big Purple Marching Band at ACU.  They were also brothers in their social club (fraternity in layman terms), Kinsmen (Gamma Sigma Phi). It means so much to me when friends visit Billy. It's a hard thing to do...it's not easy to see this person who had such a vibrant personality walk along like a stooped over elderly man, saying very little. When he speaks, he says just a few words, but he often gets his point across. I see Billy all the time, and it's hard, so I know when people haven't seen in him in a long time, it's tough on the heart.  But it is so appreciated. 

It's been a month since I last posted, and thankfully, we've not seen major changes in Billy other than his limited mobility. Last December, a new resident came to live in the unit. She was a year younger than Billy and walked constantly, crying and cursing often. Her husband told me she had been diagnosed with young onset Alzheimer's Disease about three years earlier, and in October she had a huge decline. That decline continued in the nursing home, and she went from walking to stumbling and eventually to being wheelchair bound. Because she was no longer a flight risk, she was moved to the general area of the nursing home. Her husband had heard about Normal Pressure Hydrocephaly (NPH) and was looking for a doctor who would see her. My very simplistic definition is that as the brain literally falls apart in areas, those areas fill with fluid. Sometimes the fluid presses on certain remaining areas of the brain that control walking, speaking, and continence. The resident's husband found a neurologist in Arlington who tests for this and determines if a shunt is helpful in relieving that pressure and thus returning some of those skills on some level. I was skeptical about the procedure, but I was also very curious to see how it turned out.  After several tests and a few months, she had the shunt placed at the back of her neck. It took a few months, but she is now walking as much as she did when she first came to live there. Unfortunately, the administration asked her husband to find a new place for her.  Her emotional outbursts and cursing are considered too disruptive. Obviously she is talking more, but her vocabulary is limited to these tirades. 

I did some research on the procedure, and I feel like I must check into this for Billy just to improve his mobility.  That is the skill that is most likely to be restored, and the improvements can be seen up to six months after the shunt is placed. I have no idea that this is viable for Billy, and I ask for prayers on making the right decision. I have no desire to make him go through anything that is harmful or painful. I'm not even certain how he will respond to the tests. He will need an MRI, and insurance will have to approve everything, so I have several hurdles before knowing if this is an option for him. I appreciate prayers for making the best decisions for Billy. 

This post may be one long prayer request, but our family really needs prayers for decisions. My dad has Lewybody Disease, and his dementia has become much worse in the last several months.  Last November we moved Mom and Dad into an assisted living facility in this area.  It is a type A facility which means it is the lowest level of care for assisted living. It is a nice place, but it is not secure, and they are not equipped for my dad. He wanders out of the apartment when Mom is napping or in the restroom, or anytime really. Dementia patients always seem to be searching for their happy place, and it's hard to find, so they wander. Dad can never find his way back to their apartment. He's often on the wrong floor and wrong end. The staff takes him back to the apartment. A few weeks ago, he went for one of his many walks, and after a few minutes, Mom went to find him. She met the activities director in the hall who helped her look for Dad. As they walked past a window, the director saw him - face down on the sidewalk in the back of the facility. I am amazed at how many times Dad has fallen and NOT broken a bone. The paramedics were called, and they checked him out and felt he was okay.  His face was scraped up, but that was all.  However, it was a big wake-up call for my mom.  We are in search of the best place for my dad, and I know Mom would like to keep him with her somewhere, but I don't know that we will find that place. Mom does not need assisted living, but she also cannot handle Dad's increasing needs. She continues to battle ovarian cancer, and we are praying that tomorrow is her last chemo treatment. I feel like our family has dealt with the double whammy twofold. Billy and my dad both have dementia. Mom and her sister both have ovarian cancer. I've never lost faith, but I've had some questions for God lately. Can we get a break?! 

One of the ways our family has chosen to deal with Alzheimer's Disease is to advocate for research. This is the time of year we get our team together for the Memory Walk on October 26th.  It's also the time I seek donations to the Alzheimer's Association for research. If you can walk with us we would love for you to join our team. If you can give ANY amount, that would be awesome. To do either of them, just click on the link to the right at the top of my blog, and it will take you to my page.  There is a place for you to put in my name, Kathy Knowles, and it will take you to my page. I thank you in advance. 

Peace and love to all. 


  1. I am really sorry to hear the situation that you are going through. I feel something has to be done with it and everyone should contribute in this cause.

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  2. Kathy, I am praying for you and your family as you face these decisions. May God provide the wisdom and discernment for you to make each choice, large and small. Thank you for sharing part of your journey with us. Cheryl

  3. Dear Kathy,

    My name is Akshita and I am a post-graduate student studying at the University of New South Wales.

    I am writing a research paper about the early onset of Alzheimer’s and am contacting you with the best of intentions, requesting if you would be able to provide some information regarding daily struggles. In particular, back pain, mobility, body ache, any troubles with garments and getting dressed.

    Although I personally do not have the condition, I certainly understand the sensitivity of the above. Please feel no obligation to reply if you have any discomfort in discussing the matter. However, I hope that you would consider sharing your personal experience and feelings to assist with my understanding of the condition.

    Please note that all information will be kept anonymous.

    Thank-you for considering my request.

    Yours Sincerely,
    Akshita Mohan

  4. Kathy, I was actually just checking out a few of your posts and just wanted to say that my prayers are with you and your family. I had quick question about your blog and was hoping you could email me back when you get the chance -emilywalsh688 (at) gmail.com- Thanks.


  5. Early onset Alzheimer's can often start a lot earlier than many people think. Most of us may think that the Alzheimer's disease mainly affects older people, mainly in their sixties and seventies when in fact it does affect a lot of younger people as well. This disease has been known to affect people in their early forties.

    Alzheimer specialist