Thursday, March 28th, 2013

Ohio State Studies Brain Pacemaker to Treat Alzheimer’s

An FDA-approved study at Ohio State’s Wexner Medical Center hopes to determine if using a brain pacemaker can improve cognitive and behavioral functioning in patients with Alzheimer’s disease.

The study employs the use of deep brain stimulation (DBS), the same technology used to successfully treat about 100,000 patients worldwide with movement disorders such as Parkinson’s disease. In the study, researchers hope to determine whether DBS surgery can improve function governed by the frontal lobe and neural networks involved in cognition and behavior by stimulating certain areas of the brain with a pacemaker.

During a five-hour surgery last October, Kathy Sanford became the first Alzheimer’s patient in the United States to have a pacemaker implanted in her brain. She is the first of up to 10 patients who will be enrolled in the study.

Dr. Douglas Scharre, neurologist and director of the division of cognitive neurology, and Dr. Ali Rezai, neurosurgeon and director of the neuroscience program, both at Wexner Medical Center, are conducting the study.

“If the early findings that we’re seeing continue to be robust and progressive, then I think that will be very promising and encouraging for us,” says Rezai, who also directs the Center for Neuromodulation at Ohio State​. “But so far we are cautiously optimistic.”

The deep brain stimulation implant is similar to a cardiac pacemaker device with the exception that the pacemaker wires are implanted in the brain rather than the heart.

“Basically, the pacemakers se​nd tiny signals into the brain that regulate the abnormal activity of the brain and normalize it more,” says Rezai. “Right now, from what we’re seeing in our first patient, I think the results are encouraging, but this is research. We need to do more research and understand what’s going on.”

The study, which will enroll people with mild or early-stage Alzheimer’s disease, will help determine if DBS has the potential to improve cognitive, behavioral and functional deficits. Sanford continues to be evaluated to determine the effectiveness of the technology, says Rezai. She says she volunteered for the study to help others avoid the angst she has suffered as Alzheimer’s slowly disrupted her life.

“I’m just trying to make the world a better place,” says Sanford. “That’s all I’m doing.”

Her father, Joe Jester, says he is proud that his daughter is participating in the study, and is pleased to see her showing improvements.

“This study seemed to just give us hope,” said Jester. “I guess we were at the place where you just don’t do anything and watch the condition deteriorate over the years, or try to do something that would give us hope and might stop the progression of this disease.”

Alzheimer’s disease is the most common form of degenerative dementia, afflicting about 5.5 million Americans and costing more than $100 billion per year, ranking it the third costliest disease in terms of health care expenditures in the United States. Alzheimer’s disease – which has no cure and is not easily managed – becomes progressively disabling with loss of memory, cognition, worsening behavioral function, in addition to a gradual loss of independent functioning, says Scharre.

The Ohio State neurology team is nationally renowned for expertise in dementia and Alzheimer’s care and research. In addition, the neuromodulation team at Ohio State are pioneers in the use of DBS to treat Parkinson’s disease, as well as exploring the use of DBS for other neurological and neurobehavioral conditions. Researchers at the Neuromodulation Center are completing a study of DBS in patients with traumatic brain injuries, and have initiated a study of DBS for treating obesity. The Alzheimer’s study is scheduled to be completed in 2015.​

Tuesday, February 26th, 2013

A year gone by

Another year’s gone by. Moms’s still hanging in there.

I think about my mom several times a day. I send her a card or letter every few weeks. On special occasions, I send flowers. Sometimes I send a small gift. It’s the very least I can do for her.

I miss mom a lot. I miss the mother I knew 10 years ago, and even the demented mom I knew 3 years ago. If I could go back in time, I would do anything to change the way things happened.

I wish I could visit, but I don’t have the means to do all that would be required of taking a trip.

I daydream about what I’d do if I won the lottery. It’ll never happen, of course, because I don’t buy lottery tickets. But, if I did, and I won, I would create the most wonderful care home for elders. It would be bright and cheerful, and be staffed by the most wonderful people. They’d get bonuses for going above and beyond the call of duty, and they’d love their jobs and the people they took care of.

If only I had the ability to make that a reality!

Friday, October 28th, 2011

About a month

Mom’s been in skilled nursing for a month. Maybe a little longer. I’m going to be seeing her soon. As you know, she is now out of state. The drive for me is a little over 500 miles.

In a way, I hope mom won’t remember that she ever lived with me. I don’t want her to have any feelings of abandonment or to be hurt in any way.

I have an appointment with the Medicaid people there next week. Three years ago, according to a loan application she signed, she had about $500,000 in cash and assets. Now she has none. She has huge debts and owes the IRS. More on that later, after law enforcement has finished their investigation.

Tuesday, October 11th, 2011

Going back in time

I really wish I could go back in time and pretty much do my whole life over again. Of course, I would need to know the things I know now.

I wish I could go back in time and get my mom to exercise. That could’ve been one thing that could have helped forestall this disease.

It’s so hard knowing that the mom I knew when I was growing up and during most of my adult years is gone.

If I could go back and do it again, I would have been more helpful. I would have treasured all the time I got to spend with her. I would have been more nice.

Why didn’t I appreciate her more when she was here?

Friday, September 30th, 2011

Mom’s in SNF

I just got a call from Darlene, at the SNF where mom’s been for about a week.  She’s fallen again.  This is the second time now.  She is being taken to the Emergency Room for an evaluation in a nearby town. They say nobody saw her fall.  They found her in another resident’s room, sitting on the floor. She complained of her head hurting and they felt a knot on her head, so they thought it best to send her off to the ER.  I agreed.  Especially since this is the second fall since she’s been there.  I really feel bad for my mom.  I wish I could be there to help her when she needs it.

I don’t feel well today.  I really feel as though I need to take a long break and sleep for a good long time. Uninterrupted sleep. For a week.

Monday, September 12th, 2011

Anything goes

Mom seems to have slid into another stage or something. Her mood is much better now that she has the fentanyl patch, but her behavior is getting weirder. She’s eating all the time. I’ve seen her try to eat paper products, her hairbrush, dirt from potted plants, her blanket, towels and her own fingers.

We’re trying to keep snacks around for her to munch on so she won’t try to eat these other things. It’s hard to imagine why she does it. Does she think it’s food? Is she that hungry?

She’s also been urinating in places that are inappropriate. An eye must be kept on her every waking moment. That means even in the middle of the night. That means someone’s going to lose sleep. I feel as though I’m operating at about 25% capacity.

I thought she was going to bed now, but she’s up. Gotta go.

Friday, September 9th, 2011

Flipping a switch

Mom saw the doctor today. Dr. S. decided it was ok for mom to stop all her meds now. All she has is something that relieves bladder spasms and a fentanyl patch for pain.

it was as though someone flipped a switch! After applying her new patch and giving her the one pill she has to take, she brightened up within a few hours. Mom was smiling and laughing! She was saying funny things again. We actually drove out for junk food! When we got home, she ate!

I hope things stay this way for a while.

Wednesday, September 7th, 2011

Holy mother of jesus

First, I’m not religious. I just had to write something that clues the reader in on what last night was like.

It was not my shining moment, let me tell you.  I lost my temper and was impatient with someone who’s very ill. I allowed my lack of sleep and the long, tiring hours of being a caregiver get to me.  I blew it.  I did everything I wasn’t supposed to do.  I tried reasoning with an Alzheimer’s patient.  I argued with an Alzheimer’s patient.  I tried to get an Alzheimer’s patient to do something an Alzheimer’s patient did not want to or, more accurately, could not do.

Starting at about 10:30pm last night, mom got up to go to the bathroom.  She never stopped.  She had a frequent urge to urinate, and there was no urine. A few days ago she had experienced that and I called the hospice nurse, who came and did an in and out cath to get a urine specimen.  The result was negative for any bacteria, the nurse said. There was no UTI this time.

During the weekend, we had started mom on pyridium and cipro.  She seemed to get better.  Then the LPN from the doctor’s office called and said we could stop the meds. There was no infection. A few days passed and mom’s symptoms reappeared. Why I didn’t call the hospice nurse again, I’ll never know.  I wish I had.  All three of us were up all night. Mom, with her need to walk to the bathroom 15 times an hour. Everyone else had to keep watch to make sure mom didn’t fall.  She did fall. By early morning, she was so tired she could hardly keep her eyes open or move her feet, but her drive to go to the bathroom was so intense that nothing else mattered.

This was what her brain was telling her to do last night:  Get out of bed. Go to the bathroom. Sit on the toilet for a few minutes. Go back to bed for a few minutes. Get up again. Go back to the toilet. Sit down for a few minutes. Shuffle back to bed. Wait no more than 3 minutes and get up to go to the bathroom.  You get the picture.

I learned that I should second guess myself sometimes. If it walks like a duck and quacks like a duck, it must be a duck. When an elderly person (with or without dementia) has a UTI, the person can become very confused (sudden change in mental status) and that frequent urge to urinate is also a symptom.  Even though the UA said no UTI, I should have assumed that’s what it is.  I still do think that’s what it is, and am going to push for treatment.

I learned that I need to stop myself from getting tangled up in arguing with mom.  She can’t understand what I’m saying when she’s like that anyway, so why did I do it?  I was so frustrated that I had to say something. She was not the person to say it to.  I should have called a nurse. Or, I guess I could have called someone at the Alzheimer’s Association hotline. They’re there 24 hours a day.  I will do that from now on when I find myself in an unbearable situation. Their number is 800-272-3900.

Tuesday, September 6th, 2011

Sleep deprivation

We moved mom’s bed into my room so I can help her during the night if she needs anything. So far, it’s allowing me to sleep in my own bed, which is a little bit less stressful than spending the night half awake listening for sounds from the other side of the house. Still, I’m not getting a good night’s sleep.

Mom’s in a stage where she spends nearly every waking minute walking around the house. It makes me very nervous. Right now she’s just left the room, so I have to go reel her back in.

Mom has a doctor’s appointment Friday. I really hope the doctor has some ideas about how to deal with the latest developments. Those include agitation, combativeness and extreme restlessness. This kind of stuff seems typical for Alzheimer’s/dementia sufferers. Sometimes medications can help.

Mom is still using the Exelon patch. A patch is a good thing when dealing with someone who spits out or refuses pills. I’ve kept her on this medication just in case it helps keep her continent longer. She still uses the toilet, although she usually doesn’t wipe and never flushes. I go with her on every trip to the toilet to make sure she gets cleaned up. I have to confess that I probably miss some of the night time excursions.

Well, mom’s finally sleeping, so now’s my chance to watch TV. Yay!

Thursday, September 1st, 2011

Mom’s home!

Mom’s home. Even though it’s a lot of work, it’s nice to have her here again.

The hospice home people weren’t equipped to take care of someone like her. The other patients were all pretty much bed ridden.  I never saw one of them come out of their rooms. Mom was/is a handful, I have to admit.  She never stays still when she’s awake, and that made it hard for them to monitor her.

Now that she’s home, I can really see how much of a decline there’s been in her mental status. She has lost her verbal skills and she walks very slowly. It reminds me of the “thorazine shuffle.” She still knows who we are. She sticks to us like glue. I have even put her bed in my room to keep her from walking in every 15 minutes while I try to sleep.

Mom has fallen three times since she got home. She doesn’t look down anymore when she walks. If there’s anything in the way, it seems as though she just tries to walk through it instead of around it. That results in falls. So far, she hasn’t been injured, thank goodness.

Well, I’ll fill you in as things happen.

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