We’re off on a last minute trip to Boston. We literally just booked our tickets yesterday and here we are scrambling to get everything ready to go! I’m so excited to introduce Little Miss T to her extended family and our friends, show her the fall colors and play in piles of leaves with her. We do have some business to attend to back there but it should be plenty of time for fun in Beantown.
I see a… October 6, 2010
Tooth! We have a tooth starting to poke through! I can feel it, I can see it!
It’s on the bottom front and I think the one next to it isn’t too far away, either.
Ah, how bittersweet… Little Miss T is growing up but I still want my baby 🙂
The greatest degree of inner tranquility comes from the development of love and compassion. The more we care for the happiness of others, the greater is our own sense of well-being.
-Tenzin Gyatso, 14th Dalai Lama
A Week to Remember October 1, 2010
Some of my readers may or may not know, but my dear father has Lewy Body Dementia (LBD). I’m sure many of you are saying What? What is LBD? Well, let me educate you on this little known and widely misunderstood brain disease.
The best way that I can describe this terrible disease is that it’s like taking the worst symptoms from Parkinson’s Disease and the worst symptoms from Alzheimer’s Disease and put them together and you’ve got Lewy Body Dementia. It’s a crippling, progressive brain disease that cuts your life short and robs one self of the ability to think and communicate.
Unfortunately, this is an extremely difficult disease to diagnosis as there is no test you can take. A true diagnosis can only be given once an autopsy is performed. Often times, Lewy Body Disease is mis-diagnosed as Parkinson’s Disease or Alzheimer’s Disease. I’ve found there is very little information about Lewy Body Dementia- even in the medical community. Although this is the second leading cause of dementia in our seniors, very few people have ever heard of Lewy Body Dementia. LBD is tricky, too, because it’s often mis-diagnosed, however, LBDers are extremely sensitive to medication. Only certain medications can be given to LBDers or else a horrible reaction can occur sending one in to a terrible downward spiral. Many doctors think their patients are mentally ill, however, it’s not the case at all- it’s the incorrect medication interacting with the LBD.
For a more scientific description, the Lewy Body Dementia Association describes LBD as:
Lewy body dementia (LBD) is a progressive brain disease and the second leading cause of degenerative dementia in the elderly. The clinical name, “dementia with Lewy bodies” (DLB), accounts for up to 20% of all dementia cases, or 800,000 patients in the US. Over 50% of Parkinson’s disease patients develop “Parkinson’s disease dementia” (PDD), which accounts for at least 750,000 patients. (PDD is also a Lewy body dementia.)
Other names for the Lewy body dementias are:
- Lewy body disease (LBD)
- Diffuse lewy body disease (DLBD)
- Cortical Lewy body disease (CLBD)
- Lewy body Variant of Alzheimer’s (LBV)(LBVA)
- Parkinson’s disease with dementia (PDD)
In the early 1900’s, while researching Parkinson’s disease, the scientist Friederich H. Lewy discovered abnormal protein deposits that disrupt the brain’s normal functioning. These Lewy body proteins are found in an area of the brain stem where they deplete the neurotransmitter dopamine, causing Parkinsonian symptoms. In Lewy body dementia, these abnormal proteins are diffuse throughout other areas of the brain, including the cerebral cortex. The brain chemical acetylcholine is depleted, causing disruption of perception, thinking, and behavior. Lewy body dementia exists either in pure form, or in conjunction with other brain changes, including those typically seen in Alzheimer’s disease and Parkinson’s disease.
There are many symptoms of Lewy Body Disease and the thing with LBD is that each person is different and experiences different symptoms. What seems to be common are the following symptoms:
- Fluctuating cognition- variations in attention and alertness. Changes in their decisions, thinking, and memory.
- Hallucinations- mostly visual but can also be auditory. They are often very detailed and life-like.
- Parkinson’s like features- shuffling gait, tremors, expressionless face, stooped posture, etc.
The Lewy Body Dementia Association has good information about the core symptoms, supporting symptoms and detailed descriptions of each symptom. You can read more about it here.
This year, the Lewy Body Dementia Association has dedicated a week in October as “A Week to Remember.” From October 16-23, 2010, the LBDA, families and caregivers will come together and help raise awareness.
It’s how Lewy Body Dementia will come out of the shadows and into the public eye.
- Awareness for the spouse whose “happily ever after” has been stolen away by LBD.
- Awareness for the primary care doctor whose patient would benefit from referral to a specialist for a specific diagnosis.
- Awareness for the caregiver that she is not alone.
Although we remain committed to increasing awareness about LBD 365 days a year, October 10-16 will truly be A Week To Remember, as the LBDA Family comes together to raise awareness and support across the country. We invite you to join us and countless others who will be participating in grassroots efforts like these, to name just a few:
- Become an Awareness Member on LBDA’s Facebook page.
- Plan a special event like a 5K run/walk or a tennis tournament.
- Download publications about LBD and share them with others.
- Create an online giving page in honor or in memory of a loved one.
- Share your experiences and connect with other LBD caregivers on our online Forums.
Watch for more information on our website, and in e-mails like this one, in the weeks and months to come. To learn more about how you can stand strong with the 1.3 million families affected by Lewy body dementia, please contact us at firstname.lastname@example.org. We hope you will join us in making this A Week To Remember.
Remember, it all begins with Awareness.
Arts and Crafts Gone Wrong September 29, 2010
T Update (another) September 22, 2010
First, I want to say thank you to everyone who has written and expressed concern for Little Miss T. We feel so fortunate having family and friends who care so much. It really means a lot to us.
We went for the ultrasound and it was a challenge to get it done, to say the least. Poor T was rather upset and who can really blame her. During the scan, all she saw was a strange man with some cold, goopy gel standing over her while he waved some wand thing all around her head. T of course wanted her mama to hold her during the scan, but it was best to have her lay flat. So, Daddy-O held her body while I held her arms and we sang, made googly faces, whatever we could do to get her to lay still. We ended up having to take several breaks to resettle T because she wasn’t going to stop crying until Mama picked her up.
Eventually, the tech was able to get the images he needed and Daddy-O and I left the office with a bad feeling about how things went.
Later that day, the pediatrician’s office called with the report and gave us the news that T does have extra fluid around the brain. It’s benign but there is an enlarged space and he wants us to see a pediatric neurologist at Children’s Hospital. I don’t really know what it all means… obviously, benign is a good thing but having extra fluid around the brain isn’t. Why is there extra fluid? Why isn’t it draining? How much extra is there? How big will her head grow? Does she need a medical procedure? These are all questions which are unanswered.
So, we’re waiting to see the specialist and we’ll go from there. In the meantime, T’s head continues to grow and we’re starting to notice that it’s a bit large. It doesn’t look overwhelmingly large but there’s no denying she does have a big head- she needs some hair! But she’s happy, in fact, the past few days, she’s been so unbelievably happy. She’s just a little darling and amazes us every day. She’s so close to crawling, she’s chatting more, she’s just so happy.
Well, if you read all that, thank you. I guess the short of it all is that there is extra fluid and an enlarged space between the brain and skull, but it’s benign, and we have a bunch of unanswered questions. Considering everything we went through with T’s birth, Daddy-O and I are pretty calm about the whole thing. I think if T had been a full term baby and this was the first major medical issue she had, we’d be flipping out right now. Instead, we’re collected and trying not to worry too much. Hopefully all will turn out well in the end.
Again, thank you to everyone and we’ll keep you updated. I promise I’ll respond to your emails soon.
Baby Yoga September 21, 2010
She can touch her toes, yay! T’s high muscle tone prevents her from having the flexibility that most full term babies have, therefore, something simple like reaching for your toes, can be quite difficult for a preemie. Every day, we do exercises to increase the flexibility and loosen up her stiff muscles. So, here we are 8.5 months and we finally have a toe grab, yay!
And, we actually did try a Mommy and Me Yoga class but that was a big FAIL. T is going through some separation anxiety right now so that made it quite difficult for me to do any type of yoga or to help her with some baby yoga moves. She only wanted me to hold her and nurse the entire class. What can I say, she loves her mama! I think we’ll give it more time before we try again.