- Sex: M
- Data Quality: 1 star
- Parkinson's: 13 yrs
- Hoehn-Yahr 3 Type: Parkinson's disease Off
- Mouth/throat: mild
- Arms: none
- Chest: none
- Legs: mild
- Male, 70 years
- Windsor, ON
- Primary Condition
- Parkinson's disease
- First symptom
I have difficulty walking (gait disturbance) and balance (Poster instability). My PD causes me to take small steps and a fast scuffle with my feet together, bend forward slightly at the waist (stooped posture).I have trouble stopping and when I do, I hang on to some thing solid (to gain balance) and regain my composer and try to take larger heal down first steps. Then my bad right leg begins to drag forcing me to land on my right front foot and toes, causing discomfort in my calves.
I have a severe walking problem. During my "Off Time", I have difficulty in taking regular steps with the right leg due to pain. My right foot cramps and turns inward, my big toe turns up in my shoe. My right leg calf muscle gets sore & camp; painful. Wrapping the right leg calf provides some relief.
This happens more often during the afternoon evening hours and often. Sometimes I require a walker, especially at night. Pre-diagnosed symptoms leading to my diagnosis of PD My first symptom before being diagnosed with PD was, thinking back about 25 years ago, I was 42 years old when I lost my sense of smell.
One of my favorite loves was my 1980 Honda Interstate motorcycle. I spent many a day traveling around Ontario on day trips, the highlight being the trip Carol and I motor cycling around Lake Superior on my Interstate. What a beautiful country. After about 10 years of riding, in 1990, I began to be uncomfortable riding as I noticed a minor balance problem, which got worse as time went on, until I felt it was no longer safe for me to drive and I sold my bike.
My wife Carol told me time & time again how slow I reached across the table for a Kleenex, I didn't think it was a concern, but it was also an early signal for PD. Then she notice how slowly I walked.
The next clue on my road to being diagnosed with PD was when I started tripping while walking. I became unable to complete a full step using my right foot without my foot catching on the carpet or flooring causing me to trip. It became very noticeable at work. One day while going down a long set of carpeted stairs, my right foot caught and I fell forward head first. With luck I grabbed the hand rail with both hands and stopped my fall. I wrenched my back. My Family doctor told me I had Drop Foot on my right leg. This problem worsened until I was prescribed an ankle leg support where my right foot was supported with a plastic support stopping my foot from dropping and forcing me walk properly with my heel hitting the ground first then my toe.
Around 2002, I started dragging my right leg which steadily worsened with time and then pain. My right foot landed toe first, with my heel staying in the air. It became obvious at work as it was necessary for me to walk in public view. My movement became extremely slow. A fellow department head. After watching me walk unsteadily, told the president of my workplace that he thought I was drinking on the job, we laughed about it afterwards.
My next symptom was having trouble doing things with my hands, cutting my meat at meal time was a struggle. I lost dexterity in the use of my hands. Soon to follow was my hand writing. My hand writing becoming smaller and smaller finally becomes illegible. I eventually was unable to sign my name at work. I struggled with these problems. I talked to my friend and fellow worker John. He told me I have PD and have it checked out. I did and was diagnosed with PD in 2005, by neurologist.
Sleep Disturbance reared its ugly face. First there was every night anxiety caused by fear of not being able to fall asleep. Unsuccessfully trying to twist and turn in bed to find a comfortable position. I was uncomfortable in bed no matter how I positioned myself. This made sleep near impossible. So I had to get out of bed to read a book, take a Sinemet and hopefully begin to get sleepy enough to return to bed.
My numerous symptoms began to take a toll on my ability to properly perform my job. I had a talk with my superior at work. I told him I have PD and could no longer work. I was put on disability in November 2005. I was 63 years of age.
November 2008. I need on occasion use of a wheel chair and a walker as I am unable to walk any great distance. I use an electric cart when available for shopping. I wear my ATO ankle brace more often for support. Pain in my right leg has increased when walking and my quick shuffle walking on my toes, has not changed. I find it hard to believe Parkinson's can cause the right leg problem, sometimes wonder if there is another problem with my leg.
September 2009 my appointment with Dr. Mustafa, he increased my Sinemet to 6 tablets per day (in addition to Stalevo) I now can control my off time.
March 2010. I am participating in a Clinical trial at London, University Hospital for a drug called IPX066.
September 2010. I am continuing my participation in the clinical trial by proceeding with part 2 of the nine month study. Problem is travelling to London Science Center to pick up my monthly supply of IPX066. I am 2 hours away.
I am very pleased with the clinical trial results this medication has dramatically reduced my PD symptoms. Unfortunately, this medication has not reduced my major PD symptom. My walking, gait problem is still a factor. Without medication every 4 hours my right leg will cramp to the point where I cannot take another step without pain or discomfort. It seems to let me sleep without pain. In the early morning I take my supply of medications, try to go back to bed and let the medication do its job. I still have a problem starting to walk when I get out of bed. It usually takes me 15 minutes to be able to walk without my walker.
Dr. Jog is extremely pleased with the results. I have better balance, no stiffness "0". No improvement with my leg.
December 2010. I am well into Phase 2 of the clinical trial which ends in February 2011. The purpose of phase 2 is to determine the lasting beneficial effects of IPX066.
I seem to be well with the clinical drug except it does nothing to improve my leg problem.
Dyskinesia (involuntary movements) has appeared and seems to be getting worse. I am having daily (late afternoon) walking problems where my right leg cramps up making taking another step very painful. A walker is required. I usually get off my feet and go to bed to rest the leg. It usually takes an hour for meds to kick in giving me some relief. Most times the pain gets worse and lasts for hours. At times, I require a sleeping pill to go to sleep for a couple of hours, but the leg pain wakes me up and the tossing and turning in bed begins as I try to get comfortable to get back, usually unsuccessful, to sleep.
I have decided to ask my family doctor if he thought my leg problem could be caused by something other than Parkinson’s. He said yes and aggressively sent me for x-rays of my feet, calves, knees, bone density test, 2 MRI’s (Lower back and neck) all blood work and nerve test for my leg. All tests were normal and showed no problems. I am still waiting for the results of the bone density test and the lower back MRI.
If they show no problems I will get out of the clinical trial and go back to my previous meds, Sinemet and Stalevo. Hopefully the will give me relief with my leg and gait problem.
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|10 mg Daily Jan 02, 2008 - Feb 04, 2010|
|25 mg Daily Feb 04 - Sep 01, 2010|
|25 mg Daily Jan 21, 2011 - Last Update|
|Stopped Did not seem to work Sep 01, 2010|
|Date||Dosage||Sleeplessness Perceived effectiveness||Side Effects||Adherence||Burden|
|Sep 01, 2010||25 mg Daily|
|Feb 25, 2010||25 mg Daily|
- Sep 01, 2010
- Advice & Tips
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