Featured Article | THB Undercover
Beating an Insidious Enemy
Do you often worry about Alzheimer’s or dementia striking in your later years? Perhaps you are even a caregiver for a parent who’s already been affected. If so, I’d like to share with you my own family’s personal story. It may give you some insight into a little-known cause of mental decline in the elderly and even the hope for recovery.
My mother — intelligent, funny, a great conversationalist — and in pretty good health for her 80 years on earth. That is until the early fall of last year, when she seemed to be going downhill at an alarming rate.
Her short term memory which was fine a few months before, was now almost gone — she couldn’t remember what you told her 5 minutes earlier. Her walking was slow and shuffled — she couldn’t seem to pick up her feet. Our frequent long distance phone calls which always lasted 30 to 45 minutes were now less than 5 minutes long and always initiated by me.
She seemed to be losing interest in life and spent far too much time every day napping. When I would ask her if she took her daily blood pressure medicine, a routine she followed religiously for nearly 40 years, she couldn’t remember.
What was wrong with Mom? We didn’t know, but realized we were losing her fast and had better figure it out soon. My Dad took her to the GP and after a routine examination which showed nothing unusual, he administered a mental status test. The results indicated she had mild dementia. He then did what most docs do and prescribed Aricept. Still, something wasn’t right about this quick and simple diagnosis. Mom went downhill too fast and dementia usually proceeds at a slower pace. And would dementia explain her sudden walking problems?
The family was in uncharted territory, but we knew at this rate our mother would be in a nursing home within 6 months. After thinking it over for a few days, I called her GP and said I wasn’t convinced the dementia diagnosis was correct — I wanted her to have a CT scan or an MRI — maybe she had a brain tumor or a mini stroke… maybe something more could be done to help her.
He waffled a bit, saying her age would explain many of her symptoms. But I insisted and he finally agreed to write her a prescription for a CT scan the following week.
My insistence on further testing was one of the smartest decisions I ever made.
After her CT scan, the results showed that my mother had enlarged ventricles. Ventricles are the structures on each side of your brain that continually make brain and spinal fluid. If everything is working as it should, the spinal column and brain use the fluid they need and the excess drains from the ventricles and is absorbed by the body.
But in some people, especially the elderly, the ventricles can become blocked and unable to drain properly. They then become enlarged with excess fluid and cause pressure on vital areas of the brain. This pressure leads to memory loss, a shuffling gait and urinary frequency or incontinence. The condition is known as normal pressure hydrocephalus (NPH).
One week later my mother was in a neurosurgeon’s office to learn what could be done. He suspected NPH but could only confirm it after admitting her into the hospital for a lumbar puncture (spinal tap). A large amount of fluid would be removed from her spine to relieve the pressure on the brain. If she showed improvement in memory and walking after the procedure, surgery would most likely help to relieve her symptoms.
As he explained, there is no “cure” for NPH, but a shunt surgically implanted into her ventricles would drain the excess fluid down into her abdominal cavity and dramatically improve her symptoms. In his experience, the surgical shunt has been successful on 98% of people with NPH.
With that news, we forged ahead. First came the spinal tap. As expected, Mom showed mild but noticeable improvement afterward in her walking and cognition. While the results were temporary, we knew the surgery would most likely work.
On February 2, 2009, my mother had the shunt surgically implanted in her brain. According to the doctor, she came through with flying colors.
For a few weeks after the surgery, while Mom was home convalescing, she was still foggy and unsure on her feet. We weren’t sure how much improvement, if any, to expect. But then the improvements started to become noticeable. About 2 months later, as if by a miracle, my mother was almost back to normal. Her walking was good, she was interested in life again and aside from losing her train of thought once in a while, her short-term memory was what it should be.
My mother and I have had several conversations in the past few months in which I’ve explained her physical and mental decline through the fall and early winter of last year and the surgical procedure that saved her life. I do this because she can remember very little of what happened in that time frame.
She even has no recollection of my brother and his family driving up from Alabama to New York over the Christmas holidays to be with her and my father. That’s how “far gone” my mother was, and that’s why her recovery is so miraculous.
When I shared my mother’s story with a good friend who is a case worker in the health insurance industry, she made a comment that gave me pause. She said, “I’ll bet there are thousands of old people in nursing homes right now that have NPH and everyone thinks it’s just dementia because they never had further testing.”
I think she’s absolutely right and that’s why I’m sharing this story with you.
If you have a loved one that’s “slipping,” don’t accept a diagnosis of dementia or early Alzheimer’s without further testing. Insist on a CT scan or MRI — preferably an MRI — it’s safer and more accurate. If your GP is not receptive to arranging these tests, then ask for a referral to a neurologist or neurosurgeon who understands how to treat this insidious condition.
And importantly, educate yourself about the onset and progression of NPH. Having the facts might just save your life or the life of someone you love. Here are a few helpful links to get you started.
http://www.lifenph.com/
http://www.emedicinehealth.com/normal_pressure_hydrocephalus/article_em.htm
http://www.nlm.nih.gov/medlineplus/ency/article/000752.htm
There’s one final note I’d like to share with you. Last December my mother was too ill with NPH to know it was Christmas and enjoy the holiday with her family. Now, she and my father are making plans to visit us in Florida for the holidays — I couldn’t ask for a better gift than that.
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Not many people are smart or independant thinking enough to question the diagnosis of a doctor, so there are indeed, probably thousands of old people left to suffer this sad state when they could be enjoying far more fulfilling lives and continuing to share their knowledge and experience. It’s a shame that largely, the expectation is for old people to fall apart and die before our eyes, instead of inspiring us all to view our own latter days in a more positive light. My mum is 88 and still enjoying herself, bless her. Long may she and many other surviving seniors do so.
Just want you and other readers to know that in January of this year my mother went through the exact same thing that your mother went through. She displayed all the symptons of Alzheimer’s. Fortunately, her doctor was familiar with the fact that sometimes this condition is mis-diagnosed as Alsheimers and ordered the MRI and CT scan. Sure enough, that was her problem.
The shunt was a miracle. She has regained all motor skills, control of her bladder and her memory is back in tact. Anyone displaying Alsheimers type symptons should go through the tests to rule out this condition.
More and more I am thinking that most doctors are totally clueless. People need to take their lives into their own hands and push for the treatment they need.
This was inspiring and also very scary. Inspiring in that a “non-medical” person could do a better job of diagnosing than a professional, but that’s what family is for, and the internet! Scary in that under the proposed new health care plan she and the family would be given “end of life” counseling and the operation would never be approved. We need to keep health care private and progressive.
Under the Obama Health Care, Seniors will be too old to get
ct scans or an mri, it’s too costly. I doubt procedures like
this would get approval. Government controlled Euthanasia.
This is a wonderful story. I wonder, however, if similar stories will be possible if the government takes over health care. I seriously doubt it. Name one goverment program/process that runs smoothly! Plus, the constraints placed on the delivery of care are a concern.
george
Please let your readers know that this also happens to younger people, often because of brain tumors. This happned to my husband in the past few months. He had the same symptoms and was diagnosed by doctors as being depressed. I finally said “enough” and insisted on a CT scan. The benign brain tumor had blocked the tubes that drain fluid from the brain, resulting in massive fluid build-up and pressure. He was instantly better after his operation. His neuro surgeon later told us that its very common for people to be diagnosed with dementia and/or depression. If someone you love, of any age, declines over a few months, rather than a few years, don’t settle for anything less than an MRI to confirm or disprove the diagnosis of dementia!
I couldn’t believe my eyes when I saw your article on NPH.
I want to Thank You so much for putting this information out for others to see. Back in May of 2005 my dear Mother started falling and shuffling her feet for no apparent reason.
I was very very fortunate to see the commercial on TV that showed an elderly gentleman walking with a shuffling gait.
They mentioned that he had NPH and was successfully treated for it. The commercial also mentioned that some folks can demonstrate symptoms of Parkinsons Disease, Deminta, Alzheimers and/or walking/balance problems. To make a very long story short, my Mother was dignoised with NPH and a shunt was implanted in March 2006. She immediately was able to walk without the use of a walker and was her old self again. What a miracle! I cannot stress this point enough: “Don’t wait for you docotr(s) to make this diagnosis for you or someone you love”. These days we all must take our health problems in our own hands and do research and more research on a problem you may be having. I have seen too many people just take the word of a doctor and unfortunately the patient goes on suffering needlessly. Had I not seen that commercial on TV my Mother would have lived her remaining days in a nursing home. She passed away in March 2008 and we miss her dearly BUT she was able to be at home and back to her old wonderful self for almost 2 years before her passing from cancer.
I CAN’T STRESS THIS ENOUGH: IF SOMEONE YOU LOVE IS SHOWING ANY OF THE SYMPTOMS MENTIONED ABOVE, PLEASE, PLEASE CHECK FOR NPH.
GOD BLESS YOU ALL IN YOUR JOURNEY!
Cathy
Thank you so much for this article. I was the caregiver for my Dad for three years after my Mother died and we were told it was Alzheimers. There are so many conditions other than Alzheimers that we should know about. . .we have to be an advocate for our loved ones and ourselves! I, too, am concerned about our future health care and the “quick to label” a person with this dreaded disease by the medical profession. I passed it on to my entire email address book and hope it saves as many as possible! Jane
Thank you in advance for those who’s quality of life can benefit from this article…even if it is only one person. Personal experience has proven that any diagnosis is to be viewed as only an opinion. Never accept a doctor’s word as immutable fact. Check your facts, research, research, research, follow your gut feeling, and always get a second opinion. (Even doctor’s call it a second “opinion”). Ultimately, the quality and often the accuracy of your or your loved one’s health care lies in your hands.
Thank you for this wake-up. You remind us that our loved ones are behind the seemingly casual (and less expensive for the insurance companies) recommendations of the doctors who are caught up in our current medical model. It’s up to us to learn what we can, so that we can ask the right questions, demand the right diagnostics, and not settle for the common answer.
I loved the article about your mom, Melanie. Thanks so much for sharing!
On behalf of myself, my colleagues and the community of people living with I want to thank you for sharing your story. Your friend in the insurance industry is absolutely correct about the number of people who remain undiagnosed. Perhaps the greatest trajedy of NPH is the number of people misdiagnosed or undiagnosed. One of the great challenges, therefore, is to spread the word and your story is a fantastic tool for doing just that.
Thanks and Kudos
Thank you for this article. This is information that you do not read about nor is it talked about by the medical establishment. My mother is 94 soon to be 95. I wish I had known about this condition 3-4 years ago. I certainly would have asked her doctor to do a CT scan. In December of 2008 she had a massive frontal lobe stroke and was not expected to live but she did. Of course now her memory is really bad. She has regained some of her long term memory but none of her short term memory. I might not be able to use this for information for her but I can use it for my husband. We are currently seeing a neurologist since he had a small mid brain stroke in June 2009 and it seems as his short term memory was getting bad before this stroke. He would get lost and could not find his way home. He is 75. Thank you.
I wish you were in New Zealand. My husband is showing loss of memory and I would love my GP to follow this up.
What interesting reading - I will think of this in my practice as an Osteopath/Cranio-Sacral therapist next time I see a patient with an early diagnosis such as your mothers. I know that CST may well help normalise CSF flow in this situation.
Best wishes
Joe
My Mother had a serious fall to her face, she tripped on a concrete parking stop. Her facial bones healed but 2 months later she couldn’t walk just like you described. She saw her GP, EENT then finally a neurosurgeon. All were baffled and they had no diagnosis. The Neurosurgeon wanted to do a spinal tap, and we decided to hold off and try a cranial massage therapist. After 2 weeks of going twice/week we could see her gait improving. Gradually she improved more and after several months it was like a miracle. I believe the fall created shifts in the cranium that blocked the flow of spinal fluid and with the massage therapy it unblocked the flow.
Cranial massage therapy is a noninvasive, natural alternative and I am so thankful to have discovered it.
Thank you for sharing this….research into finding “cures”
has undoubtedly passed the trillion dollar mark. With all the money, finding a cure is not much incentive. You were thoughtful about your considerations of the rapid timeline for your mother’s decline. Being “thoughtful” made the difference.
Your personal account is “huge”….now how do you get this info to a national awareness level?
A previous comment lamented about the nursing homes being filled with seniors that may have fallen victim to another “status-quo” diagnosis. After reading your account, I sadly, concur.
Thank you for sharing your story for many to learn from. I have a business caring for the elderly in their homes, in a non-medical aspect, but am always available to them for resourceful information. Your story will be added to my resources.
Too often I hear, as in your case, that a GP offers a limited view of aging issues. I ALWAYS reccomend seeing a Geriatric Specialist, and NEVER fear questioning your physician if you are not satisfied with their limited efforts in giving you an answer. There is much known about medical issues related to the Elderly, but if you have a physician not open to further investigation, I concurr…keep looking and asking. I am so pleased to hear what you found by doing so, and hope for more to experience better answers to this difficult time in their lives or their aging parent’s lives. BRAVO I say to your persistance!
This is one of the most useful articles I have ever read. Everyone needs to hear this information. I hope it will be picked up by the large news distributors. Our doctors need to be advised as soon as possible. I applaud you for bringing this information into the light for the lay person to read. Thank you
Thank you for sharing your story. I wander if that is what my father has been dealing with. He was automatically diagnosed with alzheimer but I am convinced it may not be. I will share that information with my mother and see if his doctor wants to go further, Unfortunately sometimes when people are in their 80’s it feels like the medical system does not want to spend nor the time nor the resources on someone that age! Thank you for people like yourself that brings up that type of information.