I am going to take a little detour in my Mom’s(Sally’s) story and talk about the disease itself. Everything I will be talking about here I learned from doctors and the internet….
Picks Disease is much worse than it sounds and harder to get info about than most of the types of dementia. No one would ever pick this decease for themselves or their worst enemy. When I was just getting into this with my mother I really knew nothing about dementia or Alzheimer’s disease. I was not sure if one disease led into the other nor did I have any other real way to understand the disease. I really thought they were the same thing and I find most people really do not have a true understanding of what it is. After many visits with doctors and nursing home nurses I think I have a good grasp of what it all means.
First question – What is the difference between Alzheimer’s and Dementia?
Alzheimer’s is an actual disease and it is one of the causes of Dementia. Alzheimer’s is caused by a protein that develops tangles and plaques in the brain that cause the cells to no longer communicate with each other. In advanced cases the brain shrinks.
Dementia is not actually disease but a group of symptoms. These system cause a person to find it difficult to do many mental tasks like remembering things and clear reasoning skills. If a person was always a conservative person when dealing with finances you might notice they make some very opposite risk taking decisions. Early on my mom all of a sudden decided to get into some day trading and bought some Gold that was “held” overseas! SCAM! She was a financial person, she had her series 7 and she was also all about putting her money in SAFE investments. Her financial person even told me (later on) that mom was doing things that were not her norm. (Big symptom)
Second Question – How do you know there is something wrong with your Loved one?
It seams like the disease creeps up on you. If you live with someone full time you might not really notice for quite
a while. It might even be something that is noticed more by the friends of the person with dementia. The disease can start with forgetfulness, time management, and getting lost easily. My mom (Sally) was great at coping with things and still is in her limited capacity. She would cover forgetfulness with a joke, set an alarm to be on time and use her GPS even when it was her ride home from work. She was always super controlling/a perfectionist so even when she was falling apart not many would recognize it. It was her friends that noticed first, they noticed that she would lose words. She would be out for lunch and want to order french fries but could not come up with the right word. She knew it was the wrong word (fingers) but could not find the right one. At my Step Fathers funeral she read something she had written about him being a happy (camper) but she had written (cannibal). Unless we did not know Marvin very well he was not a cannibal! It was not until the depression of my Step Father dying kicked in did it become very apparent that mom was really not behaving normally.
Third Question – What is Pick’s Disease
I had so much trouble finding a good answer to this question. Its sciencey name is Frontotemporal Dementia. The following paragraph of information I am taking straight from a website called NIH National Institute of Neuralogical Disorders and Stroke: (Frontotemporal dementia (FTD) describes a clinical syndrome associated with shrinking of the frontal and temporal anterior lobes of the brain. Originally known as Pick’s disease, the name and classification of FTD has been a topic of discussion for over a century. The current designation of the syndrome groups together Pick’s disease, primary progressive aphasia, and semantic dementia as FTD. Some doctors propose adding corticobasal degeneration and progressive supranuclear palsy to FTD and calling the group Pick Complex. These designations will continue to be debated. As it is defined today, the symptoms of FTD fall into two clinical patterns that involve either (1) changes in behavior, or (2) problems with language. The first type features behavior that can be either impulsive (disinhibited) or bored and listless (apathetic) and includes inappropriate social behavior; lack of social tact; lack of empathy; distractability; loss of insight into the behaviors of oneself and others; an increased interest in sex; changes in food preferences; agitation or, conversely, blunted emotions; neglect of personal hygiene; repetitive or compulsive behavior, and decreased energy and motivation. The second type primarily features symptoms of language disturbance, including difficulty making or understanding speech, often in conjunction with the behavioral type’s symptoms. Spatial skills and memory remain intact. There is a strong genetic component to the disease; FTD often runs in families.)
Wow… Scary stuff, especially the last line that states that is runs in families! I don’t know of anyone in my mothers family that has had dementia, I hope it does not start with us! Lets just say that I spend a great deal of time dwelling on this information. I think long and hard about every instance where I have forgotten a word or name of a show/movie/car etc…. I would bet that anyone who has a family member with any type of dementia has the same worries that I do. I worry most for my family… You know the WHAT IFS!
Fourth Question – Is there a cure or treatment?
Nope…. They say doctors are practicing medicine for a good reason, they don’t know what to do about dementia. Some things help slow things down and some things soften the symptoms but a cure? Nope! The progression of Pick’s disease is quicker than some types, especially when you keep in mind the fact that it hits much earlier than most types of dementia. a person with Pick’s disease generally has between 2 and 10 years. So if a person gets hit with this bus in their 50s they will most likely die in their 60s… Thats not very old at all, it seems younger and younger with each passing year! My mother is one of the youngest people in the nursing home she is in. She is 66 where as everyone else is 75 and older it seems.
Anyway I will get back to my mom’s story in Part 4! I felt it was important to define the disease before going on with our journey!