DEMENTIA OR NORMAL AGING?

Forgive the delay in posting! It has been long, hard year for us, as I'm sure it has been for everyone else. I won't bore you with all of the details, but suffice to say, we've had many hurdles to jump, and by God's grace have come over them (the really big ones, at least)!

Jamey's Parkinson's has progressed as expected. We are managing it as best we can. Although he is only 63, he is in the final stages of the disease because he was diagnosed so early (25+ years now). That is not to say he will leave this world soon--I suspect he will outlive me, and probably many of our friends! He continues to stay healthy other than the PD, which is a blessing!

As we both age, we're seeing signs of memory and cognition loss which prompted me to research whether we need to start being concerned, especially about PD dementia.

PDD (Parkinson's Disease Dementia) is most often diagnosed when a person living with PD, experiences significant cognitive decline after a year or more of motor symptoms. It typically takes place after MANY years of symptoms, which of course, is Jamey's  scenario.

PDD can also present as DLB (Dementia with Lewy Bodies) which is diagnosed when cognitive decline is noticed in the earliest symptoms, or when cognitive decline and motor symptoms begin and progress together. This can also be called Dementia with Lewy Bodies.

Signs for PDD can range from forgetting how to do simple tasks, to difficulty concentrating, learning, remembering or problem-solving. Not to be confused with short term memory loss from medication or age; it's not always easy to tell the difference.

Some of the noticeable changes are:

• Changes in memory, concentration and judgment
• Trouble interpreting visual information
• Muffled speech
• Visual hallucinations*
• Delusions, especially paranoid ideas
• Depression, irritability and anxiety
• Sleep disturbances, including excessive daytime drowsiness and rapid eye movement (REM) sleep disorder.

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*There are generally three stages building up to hallucinations with Parkinson's; illusions, delusions, and hallucinations.

Illusions are what many of us experience as we get older--nothing to be alarmed about. An illusion is something often seen out of the corner of your eye; sometimes mimicking a cat or small rodent. When you turn your head and move your eyes toward the illusion, the illusion disappears and you're able to see clearly that is isn't what you first thought. 

Delusions occur when you see something unusual out the corner or your eye, turn to look at it, and still see it. It may stay for sometime, or go away fairly quickly. The apparition deludes you into believing it is actually there. You might acknowledge or converse with it.

An hallucination is something you see and believe to be real, so much so, you actually interact with it. The hallucination takes on its own persona and may even talk back to you. When full-on conversations take place, that is a major concern.

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Parkinson's Dementia is different from other dementias in several ways. The Person with PDD tends not to forget who the people are in their lives. They don't go back to a certain time period to take care of unfinished business. And they seem to keep their wits about them for the most part (sans the hallucinations). It will primarily affect cognition and ADLs (Activities of Daily Living).

Continue to work with your loved one's neurologist and doctor. Some of the progression can be slowed down and others, managed. PDD is a horrible condition, but likely, much easier to live with than other dementias. However, ask me again in a year and I might tell you something different--we're just beginning now!😄

I want to share this beautiful poem for Caregivers. It really touched my heart because it's so true!

  

"Stutt" Your Stuff

Past research indicated that a stutter in Parkinson's Disease was caused by DBS surgery. But recently PD stutters have appeared in patients who have not undergone DBS surgery. And the stutter can get worse as the disease progresses.  

Stuttering is a speech disorder which causes disruption of speech, and is characterized by involuntary repetitions or prolonging of sounds or syllables. The origin of stuttering is not well understood. There are two different categories of stuttering. The most common form is Developmental Stuttering, which begins in childhood (and can be psychological or physiological). The other, Acquired Stuttering (neurogenetic), occurs after a definable brain damage, e.g. stroke, or other head trauma. Or it can occur in basal ganglia disorders such as Parkinson's Disease. My husband is experiencing the latter on a large scale.

It is not well documented research, but stuttering is said to occur in several cases of Parkinson's, particularly when the individual was a stutterer or stammerer in his or her youth. However, it does not have to have occurred as a child, for the PD sufferer to be susceptible as the disease progresses. My husband does not recall having a stutter as a child, but his is extreme, now.

One of the challenges with stuttering, is that people want to finish your sentence for you. Unless they are educated about PD stuttering, they don't realize that trying to finish a sentence, or find a word for the stutterer, can make the problem worse. It can throw off the patient and cause his/her brain to travel around, trying to come back to his/her intended thought, without luck. The first rule of thumb for friends and relatives of PD impaired, "Don't try and help me with the word. I will eventually find it on my own. Please be patient."

If you have freezing of gait (as a PD patient), or trouble moving your feet fluidly, you will almost certainly have a speech stutter at sometime in the future, or vise versa. The reason is, the same area of the brain that dictates smoothness of speech, also dictates smoothness of gait. A stutter is a stutter!

So, if the above paragraph is true, it stands to reason, improving your speech, will improve your gait. We found this to be true for Jamey. He has been seeing a Speech Therapist and a Physical Therapist for several months now. He has been faithful with his speaking and physical exercise. Though there is a limitation on how much the therapists can do for him in his 5th stage of the disease, the exercises seem to be helping if not a little bit. We got a surprise, though. When Jamey was just doing the speech exercises consistently, he was not only able to converse a little better, but he also got up from the power chair more often and walked around! We didn't realize what was happening until the Neurologist told us about the connection in the brain. What a nice perk! 

We know the importance of exercise for Parkinson's. Exercise, in everyone, produces dopamine and dopamine is the chemical all PD loved-ones lack. The more "Parkies" do physical exercise, the more dopamine they produce and therefore, are better able to function. Exercise is difficult for many of us; far more difficult for the PD affected.

However, when your body is fighting against an unseen culprit, only so much can be done. So, Jamey's Speech Therapist has ordered an evaluation for an electronic speaking device (yes, kind of like Stephen Hawking---I'm requesting an Australian accent 😉). It should allow Jamey to contribute to conversations with groups and family more readily. He has a great deal to offer, but because it takes so long to get out the words, he opts not to attempt it. And that's a shame for him and for others. We're looking forward to seeing what type of device the assessor has in mind for him. What an amazing world we live in, right?

So, as the disease takes away more and more of the Jamey we love, it also gives us more, too. We learn something every day; how to be more compassionate to others, how to live without things we once thought necessary, and how to be thankful to God for the moments we have, now. 

This is an interesting, challenging life, but I wouldn't trade it for someone else's, would you? I didn't think so! ;)

Positivity Prevails

If you have Parkinson's Disease, chances are, you know of Michael J. Fox. Mike was diagnosed with PD about the same time my husband was, and at about the same age (36 for Michael, 38 for Jamey).

Mike is a very positive individual and has a way of looking at the bright side even amidst his struggles with PD. He has brought Parkinson's to the forefront of research and raised millions of dollars for the same, through his website (www.michaeljfox.org) and fundraisers. He has used his charisma to reach people and expose them to information about new research and medication. He is a mover and a shaker for PD. Even his wife, Tracy Pollen, has contributed to PD with her healthy cookbook (Mostly Plants:101 delicious Flexitarian Recipes), her example of a good caregiver wife, and overall support of the cause.

Michael has just published a new book, another volume of his memoirs, that is sure to bring a smile and encouragement to whomever reads it. If you've read any of his books in the past, you'll want to read this one for sure. Here is a list of the books from the heart of Michael J. Fox. They can be purchased at any bookstore, or at Amazon online.

2002 Lucky Man

2009 Always Looking Up

2010  A Funny Thing Happened on the  Way to the Future

2020 No Time Like the Future: An Optimist Considers Mortality

There is no need to start with the first one published, but if you do, it does give you a good transitional reference as you read along. It isn't necessary, however.

I would encourage you to read at least one of his memoirs. They are uplifting and give hope. I know my husband has read them all and he comes away with a better attitude about his struggle, after each one. 

These also make wonderful gifts for the PD sufferer and/or care-partner in your life. Now, if we could just get Tracy to write one from the caregiver's point of view! 

Happy reading and be encouraged!