Shake, Rattle and Roll

Tools to Help You to Speak Up and See the Light

Speaking loud enough to carry on a conversation shouldn’t have been so difficult for me. For years, I’ve been searching for a product that would help me strengthen my quiet Parkinson’s voice.  I wanted the product to be easy to use, convenient and it could be used at home, reasonably priced and one that provides feedback. I found just what I was looking for in two of the products that were recently placed on the market by Mary Spremulli of Voice Aerobics—the Hi-VOLT 4PD and the calibrated Hi-VOLT™ Voice on Light Bracelet. Mary is a speech pathologist, who has also become a friend of mine, and because of that, I often get to test out new products before the general public.

The Hi-VOLT™ 4 PD products are easy to use and help me to practice my voice exercises at home. I merely put the audio CD into my computer and, I place the bracelet on my wrist and turn it on.

These products are economically priced, re-inforce the principles I learned in many sessions of prior voice treatment, and now,. I obtain-savings by not having to make co-pays for office visits and eliminate travel expenses because I do my voice practice from home. 

The bracelet with the flashing light provides positive feedback indicating that I am speaking loud enough to carry on a conversation.

And that’s all that I really wanted: to carry on a conversation.

For more information and to watch a brief video visit: http://www.voiceaerobicsdvd.com/hi-volt-voice-on-light.html

 
                      The current voice-on-light has a battery life of 30 continuous hours, so, that’s about one month of daily voice practice. But, Mary tells me that many of her patients are wanting to use the calibrated bracelet all day, so, she is currently investigating options for a rechargeable battery or one that can be easily replaced.

 

Confused about Stages?

I never could grasp the concept of stages in Parkinson’s Disease. With the symptoms of Parkinson’s varying so much from patient to patient, I couldn’t determine what stage of Parkinson’s I was at and even if I did know, how did this impact how long I would live and how well or poorly I would function until I die.

Finally, someone addresses this important topic in the following article. I highly recommend it.  

Staging is Not Important in Evaluating Parkinson's Disease

By Joseph H. Friedman, MD, author of Making the Connection Between Brain and Behavior: Coping with Parkinson's Disease

From: APDA Newsletter Spring 2011

To read article, click on the following:

http://apdaparkinson.org/data/NewsLetterUpload/2011_Spring_News.pdf (article is on page 1, 6, and 7 of newsletter)

Comments on article on staging:

I would like to add that it is especially not relevant for DBS patients because it heavily relies on gait and balance, and DBS might not be very helpful with this issues.
Olga Klepitskaya, MD, Department of Neurology
University of Colorado at Denver Health Sciences Center

 

 

 

 

Groundbreaking New Blog About Parkinson’s Targets the Recently Diagnosed

I wish Diane Cook's and Betsy Vierck's blog was available when I was recently diagnosed with Parkinson's disease (PD). During that stage of my PD journey, I was in the throes of denial.

What does it mean to be recently diagnosed with PD?

Your PD diagnosis was less than 4 years ago.

Your needs for information and support are very different than person's with PD who are in the middle to late stages of the disease.

You are still grappling with the fact that you have a chronic, progressive brain disease.

Groundbreaking New Blog About Parkinson’s Targets the Recently Diagnosed

DENVER, CO, October, 2010 -- www.recentlydiagnosedwithpd.org , a blog for people recently diagnosed with Parkinson’s disease (PD), was launched on September 11, 2010 by two PD patients, Betsy Vierck and Diane Cook. Both women were diagnosed with the progressive and often-debilitating disease within the last two years.  The blog is sponsored by Project Spark, a Washington, DC and Denver-based foundation focused on Parkinson’s disease.

Soon after receiving the news that they have PD, Vierck and Cook, both avid researchers, started to dig into the literature to learn about their disease. The maze of information on the Internet was often confusing and conflicting.  They were not sure whom to turn to for emotional support.

 “Doctors only have a limited time to tell you what you have and write your prescription.  Even the most competent and compassionate physician can’t tell you everything you need to know or give you substantive emotional support as you try to grasp the fact that you have this incapacitating disease,” says Vierck.

recentlydiagnosedwithpd.org  is the second program Vierck and Cook have developed to help fill this gap in information and support and to meet the needs of people in the early stage of Parkinson’s. Their first project is a monthly Denver-based support group established in February 2010 for people recently diagnosed with PD. The group, sponsored by the Colorado Neurological Institute and the Parkinson Association of the Rockies, has grown to 50 members in six months.

 “From learning to cope with the emotional issues associated with a PD diagnosis to the measures we can take to potentially slow down the progression of the disease in the brain, we realized that the information we were gathering for and from the support group is extremely valuable.  We needed a way to get this wealth of information to the 65,000 people diagnosed with Parkinson’s every year.  So, we decided to create recentlydiagnosedwithpd.org as a national forum specifically for this group,” says Cook.

Vierck and Cook’s philosophy is to be upbeat and focus on solutions. The blog’s tag line describes this spirit: A Blog About Taking Charge of Your Parkinson’s with Optimism, Energy, And Action.

Recentlydiagnosedwithpd.org  covers those topics that are uniquely important to people who are in the early stage of Parkinson’s. They also keep track of breaking news in Parkinson’s research and provide interviews with experts in PD and other important areas such as nutrition and exercise.

Dying with Parkinson’s

I’ve been avoiding the taboo subject of dying with Parkinson’s.  However, a blog reader wrote me about her grandfather with advanced Parkinson’s and said, “No one has explained where he is at in his disease, what the next stage to be looking for, or how far he is from the last stage.”

I felt compelled to do some research. This is what I’ve discovered so far:

Advanced Stages of Parkinson’s Disease

Source: http://en.allexperts.com/q/Parkinson-s-Disease-2096/end-stages.htm

Stage IV

· Severely disabled due to the tremor, rigidity and bradykinesia

· Still mobile and able to act independently some times

· Fluctuations, if present, are more severe and may at times be completely disabling

· Dyskinesias, induced from levodopa therapy, may be prominent (including postural defects)

· With advanced disease, some patients will complain of vague paresthesias and discomfort in the lower trunk, low back, and lower limbs. These are often secondary to rigidity and/or severe tremor. Better control of the parkinsonism through medication adjustments may improve these symptoms.

Stage V

· Maximum degree of previous disabilities, including severe postural defects

· Independent mobility is impossible, usually bed-ridden

· Towards the end of the disease there is frequently a slow decrease in the volume of speech, accompanied by increasing dysarthria. Unrelated to the intellectual impairment commonly found in Parkinson's disease, there is the development of word-finding difficulty. Unfortunately, there is very little improvement with therapy.

In itself, Parkinson's is not a fatal condition. However, the end-stage of the disease can lead to pneumonia, choking, severe depression, and death. Sadly, many PD patients spend their last years confined to a Geri-Chair (a medical version of a recliner) with functions similar to an infant. They lose the ability to walk, to talk, to care for themselves, urinary and bowel control and even to turn themselves over in bed.

End Stage may include one, or a combination of the following:

· Progressive decline despite medical therapies

· Multiple hospitalizations/frequent ER visits (often due to falls)

· Agitation that is more difficult to control

· Diminished functional status

· Decreased appetite

· Progressive weight loss

· Increasing dyspnea (trouble breathing)

· Dysphagia (trouble swallowing)

· Recurrent infections

· Severe decline in mental status

· Eventually increased weakness, fatigue, drowsiness

 

Websites on Stages of Parkinson’s Disease:

http://www.pdcaregiver.org/StagesofParkinsons.html

http://www.pdcaregiver.org/Unified.html

Parkinson's Disease - Early Signs Checklist

My posts on the early warning signs of Parkinson's and end-stage Parkinson's continue to be the most popular among my readers. People want to know when Parkinson's begins and when it will end.

Mike from Florida found my list helpful and expanded upon it to develop a more comprehensive list. Needless to say, no two people with Parkinson's are alike, and neither will develop the same symptoms nor exhibit all of these symptoms. This checklist is a general guideline for personal use. Contact your doctor for medical advice, diagnosis and treatment.

Checklist Compiled by Mike from Florida

( ) A tremor when limb is relaxed (about 25% of patients, however, will not have a tremor)

( ) Aching muscles

( ) Anxiety

( ) Change in facial expression (staring, Iack of blinking)

( ) Confusion

( ) Constipation

( ) Depression

( ) Difficulty making decisions

( ) Difficulty standing up (rising from seated position)

( ) Difficulty swallowing (not swallowing food, but just saliva)

( ) Dizziness

( ) Drooling

( ) Excessive daytime sleepiness

( ) Failure to swing one arm when walking

( ) Fatigue

( ) Flexion (stooped) posture

( ) "Frozen" painful shoulder

( ) Joint stiffness and pain

( ) Limping or dragging of one leg

( ) Loss of balance

( ) Loss of sense of smell

( ) Micrographia (small handwriting), and difficulty beginning handwriting

( ) Muscle pain (not caused from exercise), primarily in the thighs

( ) Numbness, tingling, achiness or discomfort of the neck or limbs

( ) Random sharp pain in joints

( ) Short-term memory loss

( ) Sleep disturbance

( ) Softness of the voice

( ) Strange sensations in hands

( ) Subjective sensation of internal trembling

( ) Symptoms on one side of the body

End Stage Parkinson's Disease

I can't write about end stage Parkinson's Disease. With a mother-in-law who died from/with Parkinson's, a mother dying from Lewy Body Dementia, and me with Parkinson's who will eventually die from/with it, it is a topic too close to home (see Stages and Progression of Parkinson's Disease).

But Margot, a nurse specializing in gerontology, has clearly and objectively wrote about end stage Parkinson's on this site:

http://en.allexperts.com/q/Parkinson-s-Disease-2096/end-stage-parkinsins.htm

Death from/with Parkinson's is not pretty. It's a dirty job to write about end stage Parkinson's, but someone had to do it. Thank you, Margot.

Stages and Progression of Parkinson’s Disease

One of my blog readers asked me the following question about the stages of Parkinson‘s Disease (PD).

“We just found out my mom has PD and have had trouble finding the 'stages' of PD we keep hearing about. Is there anywhere we can find them?”

My Response:

The three primary measures of the stages and progression of PD are the Hoehn and Yahr Staging of Parkinson’s Disease, the Unified Parkinson Disease Rating Scale, and the Schwab and England Activities of Daily Living. They can be found at the Parkinson Association of the Rockies website at: http://www.parkinsonrockies.org/progression.html

If you are asking about when your mom might die, that’s an entirely different matter. I could be flippant and say that it is just between your mom and God or that your mom will die with PD and not from PD.

Frankly, my greatest worry is when and how I am going to die. The only blog posting that I started but didn’t finish was about dying with or from PD. Until I’m more comfortable with completing this blog posting, you’ll need to talk to your mom's neurologist and/or do your own research on this matter. Or perhaps this is one of life's mysteries.

Early Warning Signs of Parkinson's Disease

When a reader of my blog asked about the early warning signs of Parkinson’s Disease (PD), I was caught off guard. I know what full-blown PD looks like, but I’d forgotten what PD might look like before it may even be diagnosed. With a little research, here's a list of the early signs and symptoms of PD:

Change in facial expression (staring, lack of blinking)

Failure to swing one arm when walking

Flexion (stooped) posture

"Frozen" painful shoulder

Limping or dragging of one leg

Numbness, tingling, achiness or discomfort of the neck or limbs

Softness of the voice

Subjective sensation of internal trembling

A tremor when limb is relaxed (about 25% of patients, however, will not have a tremor)

Symptoms on one side of the body

Loss of sense of smell

Constipation

Depression

Anxiety