Thursday, July 30, 2015

The Aftermath of Lost Independence



I’ve achieved numerous milestones in my lifetime from boyhood to adulthood. I got my first job at 16. I got my drivers license at 17. I went to college during my senior year of high school and went on to earn a bachelor of science in psychology and spent a short time in the field. I got married and fathered three children. I’ve been married twice and now to a wonderful wife with a step-daughter who I care for as my own. I spent twenty years in the restaurant business learning the ins and outs of it. I became a pretty good cook doing so. 

I’ve also reached a few milestones I would’ve rather done without. But with the grace of God and His strength I overcame years of alcoholism and anorexia in my past. For years I self medicated my bipolar when my medications wouldn’t work with alcohol that almost cost me my marriage. I went through a nasty custody battle that caused me to feel out of control and as a means to find some form of it I fell victim to anorexia for six years. But by finding my renewed relationship with God He restored me and I can add the milestones of recovery to my list.

With the diagnosis of Parkinson’s and dementia I’m making a new list to mark off. A list of losses. I’m only 40 and I haven’t driven in over five years. February 18, 2010 was the last day I drove. I no longer even have a license. I remember my wife and I having “the talk” with my neurologist about me driving. It was the first step of losing my independence. I don’t drive because it’s too dangerous. I can’t react fast enough and I get lost. I get disoriented and confused. I’ll admit I’ve driven our car a couple of miles illegally a couple of times, but we won’t tell everyone about it. But for me to drive on a regular basis is too dangerous. 

I’ve accepted my diagnoses. I’ve faced reality by now. I can count that on my faith. I have found peace. But it wasn’t always that way. For a while it was depressing. For a while I was angry. The loss of independence is very life shattering. You lose your identity. You are no longer who you were. You are less of the person of who you were. You are broken. Unfixable. Childish. A burden. It is a pain that comes and goes with each and every loss.

Saturday, July 25, 2015

Pick a fight



Each one of us is a unique and unrepeatable miracle of God’s grace. My wife is a miracle to me. My children are miracles.



But I do not always feel like an unrepeatable miracle of God’s grace sometimes. Unique yes. Much of the time I feel alone in this world. I mean after all, how many other people do you know who for years self medicated with alcohol and addiction and had an eating disorder, anorexia for six years and recovered from all and struggles with bipolar, migraine, Parkinson’s and dementia now. But more often I behave as though God puts up with me because He made me and now He is stuck with me. 



Logically I know this is false, but deep, and sometimes not so deep, inside it nags and gnaws at my heart, at the security and love I feel from not only others but also about myself. It creeps into my prayers, into my thoughts, into how I love and relate to my wife, to my kids, and to me.



Bipolar disorder is one of the most elusive illnesses we know of. The lives of those who live with are written like a bestselling mystery novels. The beginning opens in the middle of nowhere and every page is a twist and turn full of surprises never knowing what is going to happen next. Recognizing our thoughts are awry and our judgment is impaired is a risky business for anyone dealing with a mental illness. It all seems so sensible in our delusional state. We need to come to the conclusion there is an impairment in our functioning that prevents us from living life normally. Then again I hate that word, “normal.” Who says what is normal?


Thursday, July 23, 2015

Medication Scare



Medications! Oh how I hate them. Well, I’ll be honest there are some prescription meds that can be fun I’m on but in all I hate them. I’m no stranger to taking medications. I’ve been taking them since I was a young child and as an adult I’ve always managed them myself. I took them for severe asthma on a daily basis as preventive treatment as a child. Carried an inhaler with me everywhere I went. I was a sickly child. Had pneumonia five times which landed me in the hospital three of the times. Of all the sicknesses I’ve had that one I out grew.

But I also grew up undiagnosed with childhood bipolar which later got me diagnosed with Bipolar 1 mixed rapid cycling with psychotic features where I tend to lean on the depressive side. I was diagnosed in my early 20’s. Twenty-four I think. So I’ve been taking meds for that ever since. Almost twenty years as long as I’ve been med compliant. Being mentally ill and med compliant doesn’t always go hand in hand. But for the most part I have been. I’ve had my mishaps with my mental health medications in the past years ago. Some on purpose, some not on purpose. The on purpose times were during dark depressive days I was fighting just to stay alive. The not on purpose days were due to side effects or getting new prescriptions and the meds not mixing well. 

I had a scare the day before yesterday that many of my Facebook friends from my regular page know and my dementia support group already know about. At 8:00am I took my morning meds. Around 10:00am for some reason thought I hadn’t taken them so I took them again. Within two hours I took double the dosages of all my morning meds. Some of them are very dangerous to take too much of. My chest started hurting and I was getting very foggy and extremely exhausted. One med was a blood pressure pill I take for migraine prevention. Another was an anticonvulsant. Another a sedative and a benzodiazepine with a muscle relaxer. Luckily I was talking to my wife on Facebook and told her what was going on. She rushed home and took me to the emergency room where they monitored me for a few hours. My blood pressure was a little low for a while and the EKG was fine. My blood pressure returned to normal and I was released to sleep it off. Needless to say I’m ok and we have already come up with a new system to distribute me my daily meds.

I received wonderful words of encouragement on Facebook with countless words of advice on how to possibly come up with ways to handle my medications all of which my wife and I can glean from. They showed so much love.

Like I said, I’m no stranger to medication. I’ve taken it for almost 40 years. Medications are a two-edged sword. They play a vital part in helping the person with dementia to sleep, in controlling their agitation, or in treating other conditions. At the same time, they are susceptible to overmedication and to reactions from combinations of drugs. 

I don’t know if it was the dementia that caused me to forget I took my meds or if it was a side effect of one my meds. I didn’t take anything new or anything out of schedule. I took my 8:00am meds as usual, with coffee and a Coke. However, I have been more forgetful here lately. 

So it seems I am no longer able to manage my own medications now. I knew the day would come. And I have always feared a dangerous mishap with my medications. So I’m glad it didn’t turn out worse than it did. We left the hospital and went to McDonald’s. 

I handle the loss of independence fairly well. I know it will all come in steps one at a time eventually. I can’t control it. I can’t foresee it and I accept that. I can’t even anticipate the speed of each arrival. I accept the fact that now my wife will prepare my medications each night and prepare for them for me for the next day. I understand it is for my safety and so that it means I will be around longer for her. Rather than getting angry at this loss of independence I have to accept it with grace that I have a loving wife who is here for me to accept me as I am and is willing to care for me as this disease comes.

Tuesday, July 21, 2015

Good Days...Bad Days



Years before my body ever fell victim to the demise of Parkinson’s my mind and sanity was at the
mercy of Bipolar ever since I was a child. As I grew into an adult I was specifically diagnosed as Bipolar 1 mixed rapid cycling with psychotic features. I’m no stranger to unpredictable changes. I’m no stranger to bad days and I’m no stranger to good days. Although my good days could get me into trouble.

In January 2002 I wrote in my journal, “I find myself amidst another attack. It’s odd to refer to it as finding myself since it seems I can never hide from the pain. It always finds me as some late night stalker tormenting me following me everywhere I go only to jump out of the corner to make its presence known. I feel like I have made someone or something mad, to have this pain hurt so badly. Sometimes I wonder what it would be like to have no attacks. To be able to do the things I need to do. Would I get things done? Would I get better grades? Would I be more pleasant to be around? Would others tolerate me more? No pills! No darkness!

Life has become like a storm. The pain arrives either suddenly, like lightening or slowly, as the thunder from a far off storm building its intensity but instead inside my head.”

I liken my Parkinson flare ups and dementia to my bipolar episodes. Much of the time I was not aware of their impending damage that was about to enter our lives. But my wife on the other hand could spot the subtle changes in me on a minute scale. 

I could slowly slip into a suicidal depression before it was too late. Unknowingly I would find myself almost paralyzed bedridden while my mind was plagued with suicidal thoughts. Or I could one night go to bed feeling on top of the world only to wake the next day to have slipped into what I call the “Nothing Feeling,” a state where I only exist completely void of any and all emotions. The same could go for a manic phase.

Monday, July 20, 2015

Dementia and the Five Senses



I have to thank Elizabeth Dunbar for this wonderful topic. Some times as my own body changes due to the Parkinson’s and/or dementia the changes in my senses become second nature and I don’t think of the changes as events and often times I adapt to them without realizing it. Unlike a sudden sly of hand card trick, changes with any of the five senses when it comes to dementia tend to be subtle. For example, when I lost my sense of smell I didn’t realize I was losing the ability to smell the subtle aromas in the kitchen as I cooked. I’m 40 and I’ve been cooking since I was a teenager. I needed my sense of smell. I’d been in the kitchen and restaurant business for twenty years. My taste buds were changing as well. 

Dementia can affect any of the five senses in two different ways; physically which is how they body literally physically transmits signals to interpret a sense and/or how each sense is interpreted by the brain and mind also known as sensory processing. If there some form of deficient behavior going on then it’s known as Sensory Processing Disorder(SPD). Take vision for example. A person can have sight problems in one of two areas, either the eyes itself could be damages (physical) or the brain (SPD). They eyes may be perfectly healthy. Maybe it’s the brain misinterpreting signals. I’ll explain vision more later but the possibility of either cause is the point.

Vision

Since my dementia has progressed I’ve noticed with the last 6 months my eyesight worsen for reading. My normal eyesight is fine. I have no problem with farsightedness. I even have no problem with night vision. I’ve always had very sight at night. Since childhood I’ve spent many countless sleepless night nights awake in the dark helping my eyes able to see better in the dark. But once I try to read I need reading glasses which I didn’t up until I was 37 which was right before I was diagnosed with dementia.

People with dementia may experience a number of changes in visual abilities. For example, they may lose their ability to comprehend visual images. That is they may see fine, but they may lose their ability to comprehend visual images. Although there is nothing physically wrong with their eyes, people with dementia may no longer be able to interpret accurately what they see because of changes in their brain. Also, their sense of perception and depth may be altered. This is one of the reasons I longer drive. Here are few safety concerns:

Sunday, July 19, 2015

Making Memories



I lied to my wife. And the best part was she wasn’t mad at all when I told her what about and why. No I don’t believe in lying and I don’t make a practice of doing it. But I had ulterior motives for visiting my brother and family when I. You see I mainly went to complete a project with my sister- in-law. I just had to keep it a secret from my wife.


Since last year I’ve had this vision of having some photographs made of myself for my wife. I wanted portraits made of me before this illness completely has me in its grips. I wanted her to have photographs to look back on and remember me how I was before it took me over completely.
How I was going to do was easier said than done. I can’t handle the bills and I can longer drive. So I
didn’t know how I was going come with an excuse of missing money to explain the cost of a photographer let alone getting me to one. Then I found out my sister-in-law could do them for free. All I needed to do was go stay with them a few days which is not uncommon for me to do anyway because my mom lives with them as well. 

So one day we trekked the one hundred degree weather and took photos. A lot of photos. And they are worth it. I got plenty of photos to edit and give my wife. The props are me, a suitcase, my Bible, and some photos. We focused on the theme of me saying goodbye to my memories and to those in my life I love. The former me was walking away on a train track. 

We did other poses that I’m fond of. I normally don’t like taking photographs but this was important for me to do for my wife. I want her to have them. Once she viewed them I didn’t know if she was going to make it through them. I expected her to tear up as she did. 

It was a bonus to get to spend the time with my brother. We are a lot alike. The rest of our family joke about how my  brother and I can laugh at things together no one else gets or have inside joke no one else understand. I don’t get to see my brother much and I don’t like that. I want to spend as much time with him as I can because he’s leaving on his fifth overseas deployment to Korea in November for a year. A lot can happen to me health wise in a year.

I enjoyed the time with sister-in-law as well. She’s hilarious in her own way which makes us all laugh. We too tend to have the same kind of humor. And she doesn’t Parkinson’s or dementia but she does have health issues and that has helped us have each other to talk to.


I enjoyed my time with my mom. But my mom wears me out. She’s always on go. I’m not complaining. I would rather push myself and live what life I have and enjoy it than to spend it wasting away. Sometimes it’s just hard for me to keep up. We went garage selling and a few times I had to take time outs to rests. I don’t even like going garage selling but I actually did like going with my mom and sister-in-law. I even found myself a couple of children’s rocking chairs to redo and resell to make a profit. I love to redo furniture.

One of my nieces was with us. I like having her around. I had been watching her when let out for summer but then we moved to another town and I had to stop watching her and that disappointed me. But she is funny and we make each other laugh.

I did have a few rough times while visiting my family. I kept forgetting names and other things. I forgot my sister-in-law’s and my niece’s name a few times. I couldn’t remember the names of some objects. And for the life of I cannot ever remember the names of their pets. A few times I got confused and couldn’t remember some things. And I don't remember Friday at all. But they are all understanding and helpful.

Here are only a few of the pictures my sister-in-law took. And we didn’t even get to finish taking all we wanted to. The one hundred degree heat with no clouds was not in our favor.










Saturday, July 18, 2015

Living With The Thief Of Dementia: Why I'm Not Angry At God for Parkisnon's and Demen...


Why I'm Not Angry At God for Parkinson's and Dementia



Once I was asked, “do you blame God for all your illnesses (bipolar, anxiety, migraine, Parkinson’s and now dementia)?” Another time I was asked I was asked if the Parkinson’s with dementia made me angry. My quick and easy (for me) response was “no, not at all.” I don’t blame God for making me sick, I don’t think he made me sick, and as a matter of fact I think he’s equally sad as I am that I’m sick. I would even dare to say that He himself is angry that I’m sick.

Hold on.

Before I dig deeper here let me make sure you’re fully aware that in no way am I going to make an argument defending God, defending the idea that if God has the ability to heal me and does not he is somehow in the wrong and guilty of killing me, etc. Some of you are raising your hands, shaking your fists, and demanding that God be put on trial (rightfully so maybe). Others of you are standing up, shaking your fists, and are making a list of bullet points to absolutely prove why God is just in slowly killing me ’cause he’s teaching me a lesson (or disciplining me or what have you). Or some may argue I’m getting what I deserve. After all I fought years with alcohol and addiction and even years of anorexia. Some may argue I’m being punished for how I have treated my body as the Temple of God. Well let me say that I’m not going to please any of you because first off I don’t want to attempt to articulately figure all this out. Secondly I don’t believe that it’s my job to defend God. He can do that himself if he so desires. Quite more adequately than what I can if I say so myself. Thirdly, I don’t know if I’m able to make an adequate argument. Nor will I fall into that silly query of, “why do bad things happen to good people?”

So.

I don’t believe that God is responsible for my Parkinson’s and dementia. One of my most foundational beliefs, something that everything else builds off of is that God is good. The clearest
picture I have of who God is, is in Jesus. My belief is that when I see Jesus I am seeing God. Therefore if I want to know how God feels about sickness I look at Jesus. If I want to know what God thinks about humanity I look at Jesus. If I want to know what God would do at a party I look at Jesus. If I want to know about God one of the most clear ways is to look at Jesus…’cause they’re kinda one and the same. When I look at Jesus I see a guy who grieved over the brokenness of the world, who wept over death (to the point that he occasionally reversed it), and who didn’t seem to be satisfied with sickness (and healed accordingly).

Parkinson’s and dementia are reminders that this world is utterly broken. Things have spiraled out of control and continue to do so. War, hatred, sickness, disease, addiction, abuse, lust, and greed (among so many other things) fight to control our world and transform it into what it was never intended to be. These things, as we experience them, remind us that things are not as they should be, things are not right! And in no way do I have space to believe that God is the culprit. Nope. Instead, my belief is that God is the source of all things good, of love, of hope, of peace, of beauty, of sex, of joy, of kindness, of generosity, of gentleness, and of fresh organic strawberries. Those things come from God because that is who God is–he is good. Parkinson’s with dementia is not one of those things. It does not come from God. Parkinson’s with dementia is in opposition to God–hell on earth, if you will. God hates Parkinson’s with dementia because it is in opposition to what he is all about: life.

So do I blame God for my Parkinson’s with dementia? Absolutely not.

The question, though, that we’re all obviously stuck asking is “But God, why don’t you heal me of it?” If he is able to heal me and does not isn’t he still equally responsible? Let me throw out some random thoughts here. This isn’t an attempt to defend things fully, but rather a random collection of my own musings about this question that obviously plagues me from time to time…

At some point every single person is going to not be healed. What I mean is that even if I get healed now, at some point I won’t be…’cause at some point I’m going to be deader than dead. Whether it’s now or later it’s gonna happen. Healing is not the ultimate Band-Aid, it’s only temporary.

Friday, July 17, 2015

Family Time



This week I’m staying with my brother and his wife and my mother who lives with them. It’s
valuable time that I really want to take advantage of. They live about two and half hours away from where I live so we don’t get to see much of each other as it is. I’ve been here a couple of days and I’ve already enjoyed it. I do have to admit sometimes it’s hard for me to keep up with their pace but I’m not complaining because I will push myself just to not miss out on the time with them.
I don’t get chances to spend much time with my mom. We mostly see other in passing if by chance. She tends to stay pretty busy and I think that’s great for her. I’m glad she takes advantage of that. I
hope she keeps up the rest of her life. But think because we tend to see each other in passing she has not had the opportunity to see the symptoms of my dementia firsthand. Since I’ve been here they are noticeable. I forget the very name of my niece who is staying with us. I even forgot the name of my sister-in-law sitting in the front seat of the car as we drove through town. There have other lapses in my memory and fumblings for words and forgetfulness. 

I got to go garage selling with my mom, sister-in-law and niece. I actually hate garage selling but I actually enjoyed it this time. Probably because my sister-in-law looks for items and deals to redo and refinish in order to turn around and make a profit out of. None of this looking for junk. I love redoing furniture and I found two old children’s rocking chairs for me to redo as projects. I was so excited. Plus my mom gave me her early Christmas present to me. A 133 piece set Black & Decker tool set with drill and all the fittings. Of course they gave me “suggestions” for me to do as projects to put in their craft booths to sell. 

The day wore me out. I can’t go like I used to. Even if I’m not active during the day I still require a nap at some point. But the time spent is valuable for both me and for them. If not making memories for me then at least for them. 

Yesterday I helped my brother take out a radiator out of one his new project cars. He’s bought three new muscle cars. Two old Mustangs and I think a Camaro. I don’t get to spend much time with my brother. He’s 5 yrs younger than and in the Army. Has been since he graduated high school. He’s been deployed four times and will leave for another come November for a year.  I want to spend as much time and talk with him as we can before we leave. A lot can change in a year as far as progression.

I still have until Saturday with my family. I miss my wife terribly. We chat on Facebook and text back and forth. And I sleep even less without her by my side. Being without her helps me realize how much I depend on her as my caregiver and not just my wife. Although she hates to be referred to as my caregiver. But I depend on my wife a lot. I feel safe with her around. She knows what to anticipate. She knows what to expect when I don’t know. She’s my solidarity when I’m confused. She’s protective of me. 

I’m having fun and enjoying the laughing. I’m cherishing the laughing that comes from the humor that only my brother and I seem to understand together. I hope I remember most of this time.

Writing with Dementia


When I was in high school I hated to read and write. I was still well proficient in it, yet I still hated doing it. It was boring and coping with undiagnosed with adolescent bipolar that was predominantly
depressive I hadn’t learned to tap into my creative energy at the time. But I focused on college prep classes in high school and even took a college course during my last semester of high school. Even
during my comp classes in undergrad classes I hated to write. But when I started my classes in my psychology program I focused on research and writing.

In college my bipolar was beginning to become out of control so I began journeling in 2002. Once I began journaling it took off with a passion that flowed from the depths of the darkest parts of my mind that included suicidal ideations in the midst of my most darkest hours of depression. Words became like a mixed salad as I ran from one topic to another in a manic phase.

The more I wrote the more of a passion it became. What started as an experiment turned into being a part of my life. I filled journals with my hurts, my laughs, my frustrations and fears. I filled them with the joys of my life. I wrote poems that spoke of the depths of suicidal ideations and the blackness of what I often refer to the “Nothing Feeing.”

Once dementia hit all this changed. I went through a period what I thought was writers block. It took months for it to dawn me that my dementia was eating away at the creative life within me and stealing the very thing I loved to do. The very thing that gave me a voice. But once lasted for more than a few months I thought to myself something has to be more than writers block. By the time I realized it I had already succumbed to apathy and my cognitive functions slowing down.
Writing involves a series of complex activities in the brain. It’s not as easy as having a thought and then putting it down on paper or typing it. The person must determine what they wish to express. Not everyone has good self expression skills in the first place. Complicate that with dementia and it’s worse. They have to find the correct words and grammar. Imagine reverting back to a middle school age language barrier. Then they have to physically write it out. Dementia impacts the penmanship. Mine is mainly due to my Parkinson’s but I can’t even write legibly. I have to type everything I want to convey. Because the damage from the dementia, a person’s ability to perform these activities become affected. If the person affected finds it difficult to gather their thoughts and express themselves, this may lead to shorter or unfinished sentences and paragraphs. Simple sentences are easier to make leading to less colorful and creative writing. Recalling words or spelling of words that are seen as underdeveloped are due to memory impairments. 

Thursday, July 16, 2015

Where's The Research?



I’m finding it very disheartening that I can find more care and support for dementia caregivers than I can for actual dementia patients. Don’t get me wrong, our caregivers deserve all the care and support and love they need and more. But the more I search for support and help for my own dementia the more I come up empty. I can finds mountains of general information that I could fill up books with repetitive information.

I also have Parkinson’s and with all the money and research that has been and is being poured into finding better treatments and cures new wealth of knowledge comes out almost weekly. I even receive frequent newsletters with new promising drugs or breakthroughs in science leading us towards a biomarker or cure.

So why is research and funding lacking so behind while our caregivers get more attention? It seems if we could get better treatment and find cures we would need caregivers less. Don’t get me wrong I’m not harping on caregivers. We need them. I just don’t understand the lack of resources for dementia. Is it because dementia is a byproduct of another illness? Cure the illness and then the dementia will be retarded (slowed to a halt but not reversed)?

There is some research going on in the United States. In 2012, the President announced the National Plan to Address Alzheimer’s Disease, a national effort to expand research in Alzheimer’s and related dementias prevention and treatment and to move the most promising drugs from discovery into clinical drugs. However to date there are still only four drugs approved to treat dementia which only help to improve memory symptoms. They don’t slow down the progress or cure the disease. The plan aims to prevent and affectively treat Alzheimer’s and other dementias by 2025.

It’s foundation is the 2011 National Alzheimer’s Project Act (NAPA), which was developed to create and maintain a national strategy to overcome the disease. The National Plan calls for increase federal funding for AD research, support for those affected by AD and their families, increased public awareness about AD, and improved data collection and analysis to better understand the impact of AD on people with the disease, families, and the health and long-term care systems.

The National Institute of Neurological Disorders and Stroke (NINDS), a component of NIH, is the leading federal funder of research on nervous system disorder. Another NIH Institute, the National Institute of Agin (NIA), is the leading federal funder of research on AD. Together, these Institutes are world leaders in supporting research on the dementias, including Lewy body dementia, frontotemporal disorders and vascular dementia.

For all the research I could find in the United States this is what I could find. The majority of dementia research is found in Europe and Australia. I can tell you the ins and outs of my Parkinson’s and my bipolar. I’ve spent years researching them and living them. I had the mind to absorb the book knowledge that I get my hands on. I’ve had the abilities to assimilate the experiences of each illness. But with dementia I do not have the years to put into adapting. I no longer have the 126 IQ to soak in the book knowledge. 

Most research focuses on Alzheimer’s. I guess because it is the most prominent of all dementias and maybe the most devastating. And Alzheimer’s is one that has no underlying cause from another disease. And according to most recent studies, even with all those research groups I listed Alzheimer’s and other dementias are still lagging behind among other illnesses.
Alzheimer’s and other dementias alone is the most expensive diseases in the U.S. on state health care budgets, personal life savings of millions of victims and their families. But dementia robs more than money. It steals our memories, our independence and finally steals our dignity by eroding the ability to manage the basic tasks of daily life.

Recent studies have shown that the cost of care for dementia in the U.S. has surpassed the cost of cancer treatment or heart disease. Research into both cancer and heart disease has made it possible for their number to decline. Huntington Potter, a neurobiologist at the University of Colorado School of Medicine was quoted saying, If we don’t some control over this disease it’s going to bankrupt both Medicare and Medicaid.”

Earlier this year Washington has committed multi-billions of dollars into the research of cancer, heart disease, and HIV/AIDS while dementia only will receive in the low millions. It’s just a fact that some diseases and illness do have a political agenda that leads to federal funding. 

Why has the federal government been so stingy about funding research on a problem that cost the nation more than any other medical condition? Different possible reasons.

There is still a stigma attached to Alzheimer’s and other dementia. People don’t want to talk about. The cancer advocacy groups, even the eating disorder groups, are extremely well organized, vocal and politically skillful, with their Race for the Cure and everybody is wearing pink or green for a month. But no one wears purple for a month.

Another reason may the fact that in the typical course of Alzheimer’s. It can take years or decades for the protein blockage in the brain to cause diagnosable cognitive problems. Science and doctors are not good at guessing let alone getting ahead of slow-progressing conditions.

Another reason could be because with diseases such cancer or HIV/AIDS, there are high-profile survivors who can tell their own stories in their own words to promote research and personal motivation. But dementia is a disease with no survivors….since there have been no survivors so far, who can personify a campaign for more federal funding?

It’s obvious we need more and better research here in the U.S. As well as support for people with dementias. In my town there are none. Maybe that’s a good for me to get proactive and get one started.