Day 22: Parkinson’s Disease and Dementia, Part 2

Although Parkinson’s disease is widely known as a movement disorder, people are becoming well aware that it can (and does) include dementia along with its already too long list of symptoms that develop as the disease progresses.  More commonly associated with tremors and rigidity, dystonia and more, people with Parkinson’s have a six times greater risk of developing dementia than others.

Dementia is described as a significant loss in brain function, and can include memory issues, a slowing down of one’s thought processes, concentration diifficulties, apathy, and hallucinations. It also tends to be less common in the initial stages of early onset Parkinson’s (you get to have it longer but at least you may not have to deal with the dementia aspect as soon).  However, as you gain birthdays, your chances of dementia gaining ground increases. So, stop having birthdays. 
 
There are two types of dementia the Parkinson’s patient looks at (why bother with more – two’s already two too many) – Parkinson’s dementia and  dementia with Lewy bodies.  

If a patient with PD develops dementia at least a year after the onset of motor symptoms that are related to PD, this is known as Parkinson’s dementia. If symptoms of dementia appear before or at the same time as Parkinson’s symptoms, this is known at Lewy body dementia. Much like Parkinson’s disease, symptoms vary from patient to patient according to variables present. 

Those who go on to develop dementia in PD, in addition to motor problems, have a greater deterioration in their attention, an inability to judge the environment around them, and struggle with their ability to be flexible. Their memory problems, however, are not as severe as those found in people with Alzheimer’s disease.  

Though those with dementia and having Parkinson’s disease may not endure the severity of memory issues as those of an Alzheimer’s patient, they do have to deal with changes in their attention span, cognition (the activities of thinking, understanding, learning, and remembering) and their ability/inability to carry out tasks. They also frequently deal with having hallucinations and sleep disturbances.

Having symptoms of mild cognitive impairment (MCI) in/with Parkinson’s disease is not uncommon and it is estimated that one-quarter to one-third of people (some research shows a whopping 50-60% but for now we’ll ignore those numbers as 40% tends to be high enough) with the disease have (or will have) MCI. Research also shows that 80% of patients who have had PD 20 years +, will have have developed dementia. Take into consideration that most people are diagnosed after the age of 65… Let’s not even go there for YOPD…

Most all patients with Parkinson’s disease have been concerned at one time or another as to whether or not they will develop dementia. Research has shown that MCI can help to identify early signs of demetia in people with PD, quickening the onset of treatment.

There is evidence that treatment with rivastigmine can greatly improve the symptoms of dementia for a period of time, controling the symptoms of dementia and having a positive effect on them. There are other meds available to control symptoms

In part one of Parkinson’s Disease and Dementia, we talked about those little monsters called ‘Lewy bodies’. It is believed that only a small minority of people with Parkinson’s do not have Lewy bodies. In early stages, they are mainly found in the middle part of the brain – also known as ‘middle brain’ in the Hobbit world. Later, the Lewy bodies spread to other areas of the brain, thus earning the name ‘little monsters’.

Come back tomorrow for part three of Parkinson’s Disease and Dementia where we’ll talk about the havoc those little monsters wreak called ‘hallucinations‘. Shoud be boatloads of fun…

 

 

New Drug Approved for PD Patients with Orthostatic Hypotension

This recently in from:

Yesterday the U.S. Food and Drug Administration approved the drug Northera — the brand name for droxidopa — to treat orthostatic hypotension in Parkinson’s patients.

Learn more about the FDA’s decision.

This approval after a lengthy review process is a true victory for people with Parkinson’s experiencing this common and debilitating symptom. Orthostatic hypotension is a sudden drop in blood pressure when standing, which can cause dizziness, falls and injury.

Since taking Northera can raise blood pressure when lying down, users are cautioned to sleep with their head and upper body elevated.

 

 

Survey Says: Your Experience As A Patient with DBS

Recently, I posed a survey on patients with Parkinson's who had DBS (Deep Brain Stimulation). My reason for doing this was two fold. Number one, I wanted to diffuse any misconceptions someone may have regarding the procedure and its outcome. Second, I wanted people to be certain that this procedure was in no way a cure. It is a procedure that, as a person with PD, is buying you 'quality' time by possibly reducing/eliminating some symptoms, cutting back on current medications, regaining some loss of movement.

 

The survey is below, with the answers averaged/combined to make it simpler to read.

I want to thank all those who so graciously took the time to answer and be a part. I appreciate it.

 

PATIENT'S EXPERIENCE WITH DEEP BRAIN STIMULATION

1. How long since you had DBS surgery? Of those surveyed, their surgery dates were within the last 6 months to 5 years.

2. What were your expectations in having DBS surgery?

– Expectations noted were: gaining the ability to walk normally again without the fear of falling; stiffness would be lessened/eliminated [most popular expectation]; medications would be cut back; dyskinesias would no longer be present; relief from tremor; relief from rigidity; greater mobility.

3. Do you feel your expectations were met, exceeded or fell short? Please explain.

– The majority had a resounding yes, stating improvement in gait, relief of tremors, lessened dystonia and dyskinesia, improvement in handwriting, stronger voice, elimination/relief of tremors. There was one patient who felt it didn't make a difference and they, in fact, feel they have gotten worse.

4. Going into this procedure, were you completely aware that DBS was not a cure?

– All responded with a 'Yes', but some added that they were hoping it might or that it would for certain lessen symptoms at the least.

5. Was the surgery what you expected? Better? Worse? Please elaborate.

– All patients felt the surgery was as expected or better. Three noted they could feel no pain but could hear the drilling and it was unnerving; most patients were only awakened when the placement location was being tested; one patient considered the surgery itself a 'breeze'.

6. What was your experience post surgery? (i.e. took longer than expected to recover, stimulator insertion more painful than expected, etc)

– The main complaint post surgery is the pain where the stimulator is placed into the chest area; no head pain noted by any patients; surprised to be up and driving again so soon afterward; healing was quicker than expected; sleep was better post surgery; back to normal within a week. For one patient, they did note post surgery was very stressful for them and they felt they needed to be cautious regarding falling and being bumped.

7. Given your circumstances with PD, would you do it over again? Why or why not?

A resounding yes by all, even those for whom it wasn't quite what they had hoped for. Comments to the question were: If the patients could have the same surgeon they would do it again [this was mentioned a few times]; patients noted they felt they had ben given extra time to live with a better quality of life; some patients noted that they wouldn't have waited so long to do it.

8. Are you on more, less, or about the same meds as prior to surgery?

– For all but one patient, they are on the same or, as was the case with most responses, medications were cut in half or more. However, some medications have been increased since, still not to the extent as before having DBS. This is due in part to some patients having only one side of the brain done and the symptoms are more noticeable/increasing on the non-DBS side.

9. Do you feel you had adequate support pre and post op and if not, what would have made it better?

– Great support from family, friends, medical staff, Medtronics rep(maker of DBS stimulators), neurologist.

10. On a scale of 1-5, please rate/circle your overall DBS experience:

– Average score was 4.1.

11. If you had any advice/suggestions for someone going in for this procedure, please share.

– Make sure you know what it does and doesn't help. By not knowing, your expectations may be higher than it can meet and you'll only set yourself up to be disappointed; find a doctor you trust; ask questions; don't wait for the right time. Now is the right time; gather any and all info that you can; ask about 'side effects' (if there is a downside); make a list of pros and cons and weigh them carefully.

12. Any other comments/info you think might be helpful/beneficial?

– Experience counts. Find a surgical team with a GOOD track record.

And lastly, especially for caregivers – One caregiver who answered the survey for her husband added these comments: “…Every day is a new day and you never know what challenges you will face. Today may be full of difficult moments and tomorrow may be a great day, you just never know. It is always helpful to have a routine and stick to it. We found that changing anything in the routine made for a tough day or two until we got back into our9 routine. I would also say to any caregiver that you MUST take some time for yourself. In the beginning of our journey that was really hard for me, but now that my caregiving season has ended, I realize that without that “me” time, I would never have been able to care for my husband through the end of his journey. Caregiving is tough work, especially in the last stages, but I can truly say that I have NO regrets in taking care of my husband at home until God called him home to heaven.”

 

Think Big!

I was put on the trail of a physical therapy program by one of our Parkinson's Journey Facebook group members this morning. The trail traveled: LSVT's Think Big Physical Therapy Program.

Our member writes: “I don't know how many members of this group are in the earlier stages of PD but my husband's neurologist suggested that he try this new therapy called LSVT-BIG. It is a very intense therapy but goal oriented to each individual. I live outside the Philadelphia area and there are only 2 therapists that are certified in it so far in my area but we got my husband in with one of them and he has been attending for 3 weeks. I can't get over the difference it is making in his ability to do things such as dressing himself, his handwriting, his typing, even putting his coat on by himself. He is thrilled with the results as am I. It might be well worth looking into in your area.”

So, I went to the LSVT site. One word: amazing!

Their purpose, as taken from their site: “Today, LSVT Global specializes in the development of innovative and effective treatments for the speech communication (LSVT LOUD™) and physical/occupational therapy (LSVT BIG™) needs of individuals with Parkinson disease as well as aging and other conditions including stroke, multiple sclerosis, cerebral palsy, and Down syndrome. Our mission is to provide unlimited access to proven treatments for all who can benefit.”

LSVT offers training, certification, seminars/lectures, DVD's and other resources through their website.

When you watch the numerous videos of this amazing program, you can see why it is rapidly gaining attention. The voice training may be more familiar, as it's been around for a whie, but the physical training is newer and on the rise.

So do that. Read up on it. Watch the videos.Talk to your doctor. Check and see if there's a certifitied therapist in your are. Then let us know how it went for you. I think it's a win/win situation.


LSVT Website Video Page

Find a clincian certified in LSVT BIG

YouTube BIG Video 1

for the voice: YouTube BIG Video 2

YouTube BIG Video 3

LSVT Website

 

Taking Drugs for Parkinson’s Disease

Don't you get tired of taking medicine? I mean, you wake up and you're shaking. You have a shower and can't shower the way you used to because your body isn't listening to what you're brain is telling it to do. You get dressed – or attempt to. Other people we meet in the course of the day smile and say, “You look so good. You don't even look like you have Parkinson's.” So what is Parkinson's supposed to look like anyhow? Recently, a man shared his story flippantly in the local newspaper, saying that at times he is so out of control people think he's trying to choke himself. I think he may need a different doctor, new or different drug at least until he can get some sort of control with his disease and accidentally kill himself.

You've heard before perhaps, that Parkinson's looks different on each person. It's like putting the same shirt with the same print in the same size on five different people. It's going to look different on each and every one. No one will wear it the same. And no one wears the same disease the same, either. So – the people we will encounter throughout our days will say we 'look good'. That makes them feel comfortable. At the moment, there's no shaking for them to stare and wonder all the things they wonder about when we are shaking. Things like 'Do they do it at other times for attention? Have they been misdiagnosed?' and/or 'Are they over/under medicated?'. In all probability, all three scenarios could be a reality, but if they're on medication for Parkinson's disease, the probability of their physical issue being PD is almost certain if they are responding positively to certain drugs they will have to be on. Whether we 'look good' or not, on the inside there is a raging battle going on. A battle to claim my spirit, my will and mind, my joy, my calm and my peace. And on days like today, it gained a bit of ground. Yet, on days like today I also remind myself that I have a God who sees the inside. The places that no one else can see. The places that don't look or feel so good. He sees the battle and He calls for a reprieve – a time out – if only for a moment. A reprieve from those who tease at our expense. A reprieve from stares that you ignore, knowing they stare out of ignorance, like – I must admit – I once did. A reprieve from the weariness, the tiredness, the pain. A reprieve from discouragement and sometimes despair. However, there is no reprieve from the plethora of drugs to be taken and so you take the pills. Three red ones, four orange, thirteen white, one yellow… let's see – we're up to 23 a day now, more if you have pain or a headache. Sometimes they make you tired and cranky and sometimes they make you sick and sometimes they make you sick and tired. And sometimes… they make you feel good. I wonder… If I didn't take my PD pills, would I not 'look good' but feel better? Or would I 'look great' and feel worse? Or – maybe I'd start choking myself like the man in the newspaper. I don't know. I do know that I don't like taking all that medicine, but I do like being able to live life to it's fullest – whatever that might mean for me – and if taking those pills help, then I'll swallow number thirteen, quit complaining, and enjoy an afternoon nap. After all, the house is quiet now and empty, being that I scared everyone away by being cranky.

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