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I received a call from Nursing home yesterday saying my Mom needs to see an oncologist that her Doctor thinks she has Thrombocytopenia.  I looked it up in Google and found on Mayo Clinic it usually means patient has Leukemia, immune system disorder or medication side effect and is due to a low platelet count.  They want me to go with my Mom to a hospital pretty far away for tests.  What tests I do not know. This is really all the info I have and I do not like it.  My Mom is sick enough and I am not looking forward to stressing her out with this visit or listening if they say she needs chemo.  I am trying to get more information on what they plan to test, why we must go to a hospital far away, etc.  

I picked up a book Brain on Fire at airport about a girl in her 20’s who all of sudden is acting very odd, like she has dementia, schizophrenia, psychosis, bipolar disorder…it turns out she had ovarian cancer that was cured previously and it led to a spike in her white blood cells and it took quite some time for Doctors to figure this out.  She was also having seizures.  Reading her actions reminded me of my Mom and while not the same scenario this author did the make the point of saying if her parents had not kept pressing doctors she could have ended up in mental illness facility or nursing home.  It made me think this could happen to others, and that is pretty scary as many don’t have a lot of money or great health care.  The author was at very good hospitals in New York and they could not figure this out for longest time.  It is scary to think some could be institutionalized that could actually be cured.  It made me sad too, I don’t think a lot of testing was done on my Mom but I really don’t know…I would suggest everyone keep very good notes of all lab work done with results in case a case like this could ever come up – especially with a younger person being diagnosed with dementia.

My husband and I were talking about Thanksgiving and realized this will be the first year we cannot take my Mom out of the nursing home.  She is dead weight, and with dementia thrown into legs that no longer work it is simply unsafe to try to transport her. We are not equipped with a handicapped bathroom and most restaurants are not either.  Besides, if she did have to use the washroom I cannot change her by myself as she will fall down suddenly so that would not work in a public place (if my Husband had to come help). We also don’t have a lift on our van.

It is a sad realization.  We will spend our holidays at the nursing home and visit with her for a couple hours.  

Nov 9 the Apostolic Church of God in Woodlawn neighborhood will offer a caregivers help event.  The goal is to aid caregivers in becoming better advocates for their loved ones.  The focus is Alzheimers but that is the most well known dementia and I am sure the info will apply to other forms of dementia too.

Reading an article on alzheimers and it says African Americans are disproportionately affected by Alzheimer’s, possibly because they have high rates of blood pressure and high cholesterol, which are risk factors.  Well, I am Caucasion, and have high blood pressure so I would assume I am also a risk factor – that and the fact my Mom has frontal temporal dementia, my Grandfather had Alzheimers and my Grandmother had ALS.  

Wow — I am hoping for a quick death when older, like the 80+ year old who ran the NY Marathon then died soon after.  What a way to go, you have a feeling of accomplishment and no long term suffering.

My Mom has been on countless drugs that supposedly will “help”.  Risperdal is one I know she has been on and I just read an article in newspaper that says Johnson & Johnson has to pay $2 Billion in false marketing of this product – they targeted elderly, disabled and young children.  They generated worldwide sales of $24.2 billion from 2003-2010.  The US Gov has been probing Risperdal sales practices since 2004, including allegations the company marketed the drug for unapproved uses.  The FDA approved the drug for “the management of the manifestations of psychotic disorders”.  Since that market is limited, J&J sought to sell Risperdal for Bipolar Disorder, Dementia, modd and anxiety disorders.  Then in 2006 they added marketing to children.  J&J will plead guilty to a misdemeanor criminal charge over misbranding Risperdal for uses not approved by FDA, including treating elerly patients with dementia.  Omnicare is the leading pharmacy provider for nusing homes, and they received kickbacks for promoting the drug to nursing homes.

What makes me mad about this goes back to Day 1 of my dealing with my Mom’s disease.  They want to throw you on a ton of drugs and they all have side effects and really no proof of working and you try to stand up for your loved one and cannot fight the system, they just give them what they want to and then you hear of stories like this — the FDA did not even APPROVE the drug for dementia use!!!!!  Greedy people decided it would be good to generate more sales and market to nursing homes and my Mom was (and may still be on this, i am going to call and find out) for what reason?  To make some rich.  I am disgusted.

this is the first summer i cannot take my mom out of the nursing home.  i cannot take her to my house to sit around outside with us in the backyard.  this stinks.  i did not realize how hard it would be until the realization set in that she simply cannot come to my house anymore.  the nursing home needs a lift to change her, she cannot stand at all and it is too difficult to do this even with 2 people sometimes.  i cannot risk having her fall and not be able to lift her back up.  last summer and all the summers prior she was with us every weekend almost.  i miss those times now, even when they were hard and she was always asking me for more and more I miss my mom.  

My Mom was acting out a lot at nursing home, very emotional and at times combative, and so we decided to raise the dosage of Seroquel back to 100mg from 50mg.  I was against the drug but at the same time I know I cannot have my Mom causing issues every day.  She was also more confused and disoriented I cannot say for sure but maybe it was effect of coming off the drug.  We will see how this increase goes, the staff knows I don’t want her “zombified” and will call later in the week to give me an update.  

I am sure anyone who has a loved one suffering from dementia has experienced this…you see someone who looks alike your loved one, doing something they used to enjoy, and become nostalgic.

I was at a White Sox game in Chicago yesterday and rows ahead of me I saw a lady with hair like my Mom used to have in a baseball cap having a good time. I thought, my Mom would have loved to be here in the old days before she became sick.

Does anyone have a story to share about their experience with something like this?

I just read this article and it is saying (i picked out pieces from FierceBiotechResearch.com)

Scientists have mapped brain pathway that produces abnormal proteins to pinpoint how oligomers–the toxic species that spread easily around the brain to cause the death of neurons–are formed.

Right now there aren’t any modifying therapies for dementia, only limited treatment for symptoms.  They are working to solve what happens with molecules before they progress.

If they can find out how to stop the progression this could lead to treatment for dementia!!!  I love reading articles like this, it shows some signs of hope.

Here is a link to the article:  

http://www.fiercebiotechresearch.com/story/cambridge-scientists-find-molecular-catalyst-behind-alzheimers/2013-05-21?utm_medium=nl&utm_source=internal

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