Wednesday, July 29, 2009

Our Fight For Our Grandmother

PLEASE TAKE A MINUTE TO READ THIS...I KNOW IT IS LONG...BUT, I BELIEVE THAT THE INFORMATION ABOUT NPH MAY HELP SOMEONE OUT THERE!

Normal Pressure Hydrocephalus: A condition that can be confused by Alzheimer's, according to Dr Robert J. White.

What Is Normal Pressure Hydrocephalus? The brain and spinal cord are surrounded by a clear fluid called cerebrospinal fluid (CSF). This fluid is produced and stored in cavities in the brain called ventricles. It circulates around the brain, moving from ventricle to ventricle. The purposes of the fluid are to cushion and protect the brain and spinal cord, to supply them with nutrients, and to remove some of their waste products. Any excess fluid drains away from the brain and is absorbed by other tissues.


Hydrocephalus is a condition in which there is too much CSF in the ventricles. This occurs when the natural system for draining and absorbing extra CSF does not work right. The ventricles enlarge to accommodate the extra fluid and then press on different parts of the brain, causing a number of different symptoms. Hydrocephalus has many different causes. Some people are born with the condition, while others develop it during their lives. (According to WebMD)


There are few people in life, that you can honestly say have always been there for you, never faltered, and you can count of one hundred percent of the time. My Grandma Driggs is one of those few people that I know I can count on no matter what the situation. Well, we may not always agree with my Grandmother, but, I believe, she was probably always right! My family grew up in Bass Lake Community in Chardon, OH, close to the lake on Overlook Rd. My Grandmother lived at the "top of the hill" on Orchard Rd. We would spend almost every Sunday with her and have dinner, laugh, watch movies, and have a good time! By "WE", I mean the entire family! My Aunt Carrie and her kids, Aunt Ruth and sometimes Aunt Janet, Uncle Karl...when he was home from school, and my Mom and all five of us kids. There was never a dull moment! But, my Grandma took it all in stride...nothing ever seemed to daunt her or move her.


As she grew older, she decided to sell her home and move into a trailer off of Claridon Troy Rd. We made sure everything was just right for her and she seems genuinely happy in her little place. Over time, especially the past three years or so, we began to notice some changes in my Grandma. Mostly in her stride. Now, she is a tiny woman with a little bit of weight on her, which I guess could add to her unsteadiness, but, we noticed that she seemed less sure of herself. So, we decided she needed exercise and we encouraged her to walk the dog, got her a treadmill and some weights. She did try to exercise but, then she fell. A couple of times. Hard. We chalked it up to the dog. Honey must have pulled to hard and she fell. Which could have been what happended. My Grandmother also seems very susceptible to pneumonia. My family found her a couple of times just completely out of it and had to take her to the hospital to be admitted. She also has heart problems. My mother and aunt found her one day...she must have fallen on the floor...she was completely out of it and we found that she was actually having a heart attack. That was one of the most scariest days. I remember seeing my Grandma in the hospital and I held her hand and prayed! I don't think I've ever prayed so hard in my life. To see my Grandma who I love so dearly, who is always so strong, in such a weak and fragilestate....It just places everything into perspective. She is one strong and determined lady. She made it through and eventually went home.


We began to notice that she was having trouble remembering things, having severe headaches, not able to control her bladder, and really having difficulty walking. She would get up to walk and then just stop...I thought maybe she just needed a minute or maybe just needed to catch her balance? The most disturbing moment for me is when she went to put stamps on her mail. I remember watching her pick up one of the envelopes and just look at it. Then she put it down and picked up the stamps. Then she put the stamps down and picked up the envelopes...and so it went on. This was particularly disturbing because my Great Grandmother, her mother, had Alzheimers. So, when we saw her doing these things, we thought that this might be the beginning stages of Alzheimers.


I saw my Grandmother on a Monday for lunch. She was in a good mood. She complained about a headache and that she just did not feel right, but, otherwise we talked and had a good time. On Wednesday or maybe it was Thursday that same week, my Mom found her almost incoherent in her chair, still in her pajamas, and in terrible shape. She was admitted to the hospital and we were told that she had pneumonia. My Grandmother was not herself...she was angry, rude, her speech was slurred (she sounded like a child), could not remember the day, year, who the President was, she had no empathy, and was completely confused. We had noticed these symptoms before she was admitted, just not to such a degree. It was shocking to say the least. The Doctors believed she might have the beginning stages of Dementia. I remember talking to her on the phone and I asked her how she was and told her to hang in there and she said to me "Well, Joy, I'm terrified honey". I have not told anyone that she said this to me because I can't get the words to come out of my mouth withough choking on them. I never, in my entire life, heard my Grandmother say anything like that.


My family prayed for an answer. And, we got it! My sisters husband, Scott, has been in medical school and he took note of all of my Grandma's symptoms and told my Mom to check into Normal Pressure Hydrocephalus. He said she had all the symptoms.


According to WebMD here is a list of symptoms for NPH:


Memory loss


Speech problems


Apathy (indifference) and withdrawal


Changes in behavior or mood


Difficulties with reasoning, paying attention, or judgment


Walking problems


Unsteadiness


Leg weakness


Sudden falls


Shuffling steps


Difficulty taking the first step, as if feet were stuck to the floor“Getting stuck” or “freezing” while walking


Urinary symptoms


Inability to hold urine


Inability to hold stool, or feces (less common)


Frequent urination


Urgency to urinate The following symptoms can be related to increased pressure in the brain:


Headache


Nausea


Difficulty focusing eyes


My Grandmother had ALL of these symptoms! Now, you'd think since we had an idea that this is what she could have that the rest would be easy. WRONG. We had toFIGHT for my Grandmother. She had about four different Dr.s involved in her case. She was put on several different medications including Psychiatric meds. In the process, we found that many of the meds she was placed on were extremely dangerous and could actually make her worse. One being Risperadol. If you suspect that your elderly loved one might have Dementia...make sure you research medications. There are some that they should not be placed on and the medicine could advance the situation beyond repair. We had to fight and constantly check her meds list to make sure she was not put back on it. The Doctors wanted to put her on the Psychiatric floor...not a Geriatric floor...a Psych floor. When I found that out, I nearly hit the roof. I worked in Mental Health for seven years. I was on that floor. I know the restrictions...no phone, strict visiting hours, limitations on family involvement in care (meaning your voice does not count), no TV....this was NOT a place for my Grandma. Yet almost every other day my Mom would get a phone call from the hospital saying they were going to transfer her! Then there was the fight to get the testing for the NPH...my family was on the phone daily...non stop...trying to get these things set in place. I could go on and on...about the fight for my Grandmother. The thing with this diagnosis...you have to act fast. The window of opportunity for treatment once symptoms are noticed is very small. So, you can imagine our frustration!My Grandmother was eventually sent to a nursing home after being cleared from the pneumonia. It turns out that the pneumonia made the NPH symptoms worse and as the pneumonia cleared she regained her speech, was less irritable, and regained some of her memory. But, she still could not walk. We started the ball rolling for diagnosis of NPH, which would be done down at UH. Since my Grandma did not make any progress at the Nursing Home, Medicare would not cover her stay anymore and she had to be sent home with round the clock care. We divided up the times between family members, called in Care Corp, and Home Instead. I can't imagine how difficult this would be for the elderly who do not have family or the resources for care.


The next step after being officially diagnosed with NPH was to have a simple procedure where a shunt is placed in your spinal cord to drains some of the cerebrospinal fluid in order to relieve some of the pressure off the brain and see if there are any improvements in mobility, memory, headaches, and overall basic functioning. Which, praise God, there have been great improvements. She is walking sometimes independently or with a cane. She is coherent and is doing well in all of her basic functioning.


My Grandma is scheduled for surgery on August 5th at the Cleveland Clinic. There, she will have a shunt placed in her brain which will drain the cerebrospinal fluid from the brain so that whe will regain normal to almost normal functioning. This entire process has been going on from the beginning of April of 2009. I am so grateful that the Lord has answered our prayers and my Grandmother has this opportunity to regain her independence. She told me she is very anxious to have this done because she wants to get up and be able to go for a walk, do her dishes, vacuum the floor and all of those things that she could so easily do before. I told her that I would be writing about her experience and that I wanted to make people aware of this condition. My Grandmother was a nurse and cared for the elderly. She has a huge heart for people and the elderly. She did her best to help people at the nursing home while she was there and she said she is very concerned for people who do not have family or anyone to help them.


I had never heard of NPH before and if hadn't been for my sister's husband mentioning that we should get her tested, we never would have pursued it and neither would the Doctor's treating her. I'm asking anyone who reads this that believes in the power of prayer, to pray for Grandmother during her surgery. There is a risk of infection and other complications that could arise during and after surgery.


Please pray for the Doctors involved and my Grandmother health and recovery in the name of Jesus!


Thank you! I hope this will help someone out there who may be dealing with the same issues and searching for an answer!

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