Young onset parkinsonian with severe facial dystonia and Blepharospasm

The attached video link is me working with my speech therapist on a very bad morning. Young onset parkinsonian with severe facial dystonia which effects speech and  and Blepharospasmm a neurological movement disorder involving involuntary and sustained contractions of the muscles around the eyes (click here for video)

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DBS appointment

Back from neurology. No video today. They increased my DBS setting to 3.4v on both sides. Up from 3.0. Monitoring for positive or negative side effects. My neurologist is waiting to hear from the rehab ward about a bed for a few days. She's going to have them evaluate my current intake of ldopa, possubljy add pain pills for my back plus rehab, mental health visit (no problems there), and match wits with the rehab doctor. She will try Botox again on my facial and cervical dystonia Iin 2 months. She had the dermatologist look at the mole on my toe and he said it's a wart. It will go away. My first wart ever. Still looks like a mole to me. Another fun and funny appointment.

Botox Injections: Face & Back

Went to the VA hospital to see my Movement Disorder Specialist for my third attempt of Botox injections to solve my back pain and face spasms. 

Below is video of me getting injected about 14 times in my face and 20 times in my back. Please note the injections are pretty much painless. 

*The face shown here feels like small insect stings and may bleed slightly..

*The back was not painful at all due to the freezing spray they use first.

Since my  Deep Brain Stimulation last year on  July 12th  my Parkinson symptoms have been under control and in some cases *totally suppressed.. With the exception of  my *speech which has worsened as expected,

* DBS will rarely improve balance, prevent falls or enhance thinking or speech. 

Source: http://www.neurology.umn.edu/prod/groups/med/@pub/@med/documents/asset/med_32171.pdf

But the natural progression of my Parkinson disease has evidently continued. I have painful cervical dystonia (lower and upper back), a face spasm in my left cheek, and *Blepharospasm.  

*Blepharospasm is a muscle disorder that causes involuntary spasms of the muscles around your eye. These spasms can result in uncontrolled narrowing or closing of your eyelid. This could impair your vision, and make everyday tasks such as driving or using a computer difficult.

Sample of Blepharospasm

CASE SOLVED: Dark brown to amber urine

First le me apologize for my visual.  Yes it i urine in the toilet..my urine. I thought by psoting this unusual photo it may help somebody who is experienceing the same problem/scare that i did.

It turbn out that the water enhance rMio was turnin gmy urine dark bron to a light amber. I thought I was bleeding internally. My urologist took samples and set it toas lab and me to get a cat scan to lookffor kidney stones.

RESULTS: Labs& Cat Scan both turne dup negative. My urologist said it may be a medication or vitamin doing this.  I have been on SINEMET since 2000 and never haqd brown urine. I did take COMTAN which turns everything orange. Your mouth, hands, clothes, and yes your pee.

The only thuign that i could think of was the MIO Water Enhancer which has become popular.

I stopped drinking it for a few days and my urine rerturned to its normal coloration.  THne i started it again, and low and behold the enxt day i haad darkbron urine.
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Young Onset Glaucoma?!..

I am starting to believe it is impossible for me to go to an appointment and not get bad news.

Early Onset Glaucoma:

Clogged tear ducts:

Bi-focals:

Eye test:

My trip to the Urologist...

My urology appointment began as a routine appointment which ended up as an odd adventure that could have ended badly.

I have had a spastic bladder for years as a symptom of my Parkinson's.  I had grown used to the difficult transition from boxers to diapers.  This was one of the most difficult PD related symptom that I have faced...until the "cervical dystonia" joined the line-up of diseases, symptoms, and side effects that is called "my life".  *See previous blog.

Changes to my body 10 days after Botox...

Before...

After..

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Read the post on my first appointment for medical grade Botox injections on the 28th of January 2011. 

Seven days went by since my last Botox appoitment without any change to the horrible lower and upper back pains due to dystonia in my lower and upper back I started to become a bit disappointed. Then on the 8th day it happened. For the next 3 days I had picture perfect days. Virtually pain free, cramp free, I felt like a zillion dollars! Then yesterday a cold snap hit. My Parkinson's has always reacted badly to changes in the weather and this was a big change. The past two days the wires in my head have hurt, my lower back hurts and nothing sems to be working very well. I'm looking forward to the weather getting back to normal to see if that has an effect.

Dont get me wrong I would not chnae my DBS for all the money in the world! My MDS is wonderful andis giving me 150%. A huge hug for her from me!

Below are some random thoughts and last minute posts.

Parkinson's & Cervical Dystonia

Who knew Parkinson's disease was so easy!

Annoying Parkinson's Symptoms

I remember back in the good old days when I just had to deal with the annoying "symptoms" of Parkinson's disease. The slight tremor, the bradykenesia (slow movement), the muscle stiffness, and in my opinion the worst that Parkinson's brought to my life..the freezing episodes. 

Botox Fact & Fiction:

• Botox is a neurotoxin [neuro means nerve; toxin means poison] that temporarily paralyzes muscles in your face.
• Botox is derived from the same botulin toxin that is found in spoiled foods. Doctors use a sterile and purified form of this toxin when administering Botox injections.
• Botox injections cost up to $500 or more. The effects are not permanent. Over time, the body gradually absorbs the substance and the procedure must be repeated every 3-6 months.
• The FDA has approved Botox for use only on a limited area between the eyebrows. Botox is administered only for wrinkles and does not reduce other age-related symptoms such as age spots and facial discoloration.
• Improper injection has been linked to droopy eyelids. Other reported side effects include nausea fatigue, malaise, Flu and rashes.
• Botox is not recommended for pregnant women, women who are breastfeeding, people with neuromuscular disorders or cardiovascular disease.
• There have been no conclusive studies about the long-term side effects of Botox.