Monday, October 18, 2010
My name is Alyssa Lanagan. I am currently doing my senior year technical exhibition on Parkinson's Disease. I have chosen Parkinson's because my grandfather, James Walters, was diagnosed with it 7 years ago. I have witnessed how it has effected him, and those of us close to him. I have created this blog as a way to document my grandfather's story, and ask others to share their stories as well.
Saturday, November 28, 2009
Carolyn's Story
1. When did you notice you had the symptoms of Parkinson's Disease?
In 1998 began having difficulty bike-riding, noticed slight tremor in right hand. Diagnosed with Parkinson’s winter of 2000.
2. What kind of exercises do you do for your PD?
Swimming, facial muscles, leg lifts
3. How many years have you had PD?
About 10 years
4. What kind of medications do you take?
Carbi/levodopa, mirapex,
5. How has Parkinson's Disease changed your life?
Difficulty swallowing. Difficulty getting around on my own
6. Do you have a caregiver who can help you when you have trouble?
My husband helps
7. Do you have side affects from the medications you take? Such as drooling or ankle swelling.
My blood pressure drops when standing up, making me “white out”. When I was taking comtan I felt too warm all the time.
8. Does your Parkinson's Disease seem to have gotten progressively worse overtime?
Yes
9.Does anyone in your family have or had Parkinson's Disease?
One uncle
10.Has Parkinson's Disease affected your weight in any way?
Lost about 25 pounds
11.Has your Parkinson's Disease been related to any prior head injuries?
no
12.Do you need any special equipment to get around with the Parkinson's Disease?
Cane, walker, sometimes wheelchair
In 1998 began having difficulty bike-riding, noticed slight tremor in right hand. Diagnosed with Parkinson’s winter of 2000.
2. What kind of exercises do you do for your PD?
Swimming, facial muscles, leg lifts
3. How many years have you had PD?
About 10 years
4. What kind of medications do you take?
Carbi/levodopa, mirapex,
5. How has Parkinson's Disease changed your life?
Difficulty swallowing. Difficulty getting around on my own
6. Do you have a caregiver who can help you when you have trouble?
My husband helps
7. Do you have side affects from the medications you take? Such as drooling or ankle swelling.
My blood pressure drops when standing up, making me “white out”. When I was taking comtan I felt too warm all the time.
8. Does your Parkinson's Disease seem to have gotten progressively worse overtime?
Yes
9.Does anyone in your family have or had Parkinson's Disease?
One uncle
10.Has Parkinson's Disease affected your weight in any way?
Lost about 25 pounds
11.Has your Parkinson's Disease been related to any prior head injuries?
no
12.Do you need any special equipment to get around with the Parkinson's Disease?
Cane, walker, sometimes wheelchair
Friday, November 20, 2009
William's Story
1. Symptoms where atributed to other problems such as stenoses, prior to being diagnosed for several years.
2. Two times a week attend exercise class specific to Parkinsons, plus additional workouts in a fitness center during the week.
3. I have PD diagnosed for three years.
4. I have classic type Parkisons.
5. I take Carbidopa/level low dose and Gabapenton low dose.
6. None.
7. None.
8. Having to be aware constantly of this problem, and the requirements of daily life to keep as well as possible.
9. Yes, I have a care giver.
10. No, I do not have side effects
11. No, not yet.
12. No.
13. Before diagnoses I was losing weight, but my weight has stabalized.
14. Non.
15. No, not yet.
Thursday, November 19, 2009
Winston's Story
1. When did you notice you had the symptoms of Parkinson's Disease?
In 2005 - Cramps in my hips. Had X-ray photos.
2. What kind of exercises do you do for your PD?
Exercise class - stretching, movement
3. How many years have you had PD?
Diagnosed in March 2009.
4. What type of Parkinson's Disease do you have?
N/A?
5. What kind of medications do you take?
None
6. What therapies do you go to?
Exercise, Support Group.
7. What kind of medical treatments did you have to go through?
None
8. How has Parkinson's Disease changed your life?
Slowed me down, restricted activities. Zero guitar, zero motorcycles, zero reaching and cooking, etc. .
9. Do you have a caregiver who can help you when you have trouble?
No
10.Do you have side affects from the medications you take? Such as drooling or ankle swelling.
N/A
11.Does your Parkinson's Disease seem to have gotten progressively worse overtime?
Yes - see # 8
12.Does anyone in your family have or had Parkinson's Disease?
Father and Uncle
13.Has Parkinson's Disease affected your weight in any way?
No.
14.Has your Parkinson's Disease been related to any prior head injuries?
No
15.Do you need any special equipment to get around with the Parkinson's Disease?
No
In 2005 - Cramps in my hips. Had X-ray photos.
2. What kind of exercises do you do for your PD?
Exercise class - stretching, movement
3. How many years have you had PD?
Diagnosed in March 2009.
4. What type of Parkinson's Disease do you have?
N/A?
5. What kind of medications do you take?
None
6. What therapies do you go to?
Exercise, Support Group.
7. What kind of medical treatments did you have to go through?
None
8. How has Parkinson's Disease changed your life?
Slowed me down, restricted activities. Zero guitar, zero motorcycles, zero reaching and cooking, etc. .
9. Do you have a caregiver who can help you when you have trouble?
No
10.Do you have side affects from the medications you take? Such as drooling or ankle swelling.
N/A
11.Does your Parkinson's Disease seem to have gotten progressively worse overtime?
Yes - see # 8
12.Does anyone in your family have or had Parkinson's Disease?
Father and Uncle
13.Has Parkinson's Disease affected your weight in any way?
No.
14.Has your Parkinson's Disease been related to any prior head injuries?
No
15.Do you need any special equipment to get around with the Parkinson's Disease?
No
Bill's story
1. When did you notice you had the symptoms of Parkinson's Disease?
My wife first noticed that I was no longer swinging my left arm and was starting to take smaller steps while walking. She did some research, thought I might have Parkinson's, then proceeded to try to convince our family doctor to refer us to a neurologist/movement disorder specialist. The family doctor wasn't convinced and didn't think a referral was necessary which resulted in a change of doctors. The new doctor immediately made a referral to a movement disorder specialist who in turn did testing and diagnosed Parkinson's.
2. What kind of exercises do you do for your PD?
As I have done all of my adult life, I continue to do floor exercises such as sit ups, deep knee bends (holding onto something), upper body turns, weights, etc.. For my mind, I try to read, play games, stay curious. I feel the exercises have helped me keep my body and my mind as strong as possible.
3. How many years have you had PD?
I was diagnosed in 2002, but likely had Parkinson's several years before diagnosis.
4. What type of Parkinson's Disease do you have?
Adult onset, with early dementia (Parkinson's diagnosed in my early 60's in 2002, early dementia diagnosed in summer of 2008)
5. What kind of medications do you take?
25/100 Sinemet, 4 times a day for the Parkinson's, Lexapro for anxiety (as a result of dealing with Parkinson's), Exelon Patch for early signs of dementia, as well as Super B Complex vitamins just in case they help.
6. What therapies do you go to?
I don't currently go to any type of therapy; however, I did go through a rehabilitation program to help me learn to sit and stand from a chair properly, how to get in and out of a bed, how to properly use a walker and cane, how to get up from the floor after a fall, etc. I understand Tai Chi and dancing is very helpful, but I haven't tried them myself.
7. What kind of medical treatments did you have to go through?
While going through the process of being diagnosed, I had MRI's to rule out brain tumor, hydrocephaly, etc. Went through a number of physical activities for the doctor such as walking, sitting/standing, hand/eye coordination tests, balance tests, etc. I also took tests for memory and anxiety.
8. How has Parkinson's Disease changed your life?
It has reduced my mobility greatly. I have balance problems and fall easily; I tire easily, feel weak and at times have internal tremors, and feel I need to nap a couple of times a day. I also fall asleep at inappropriate times; i.e.; while eating, conversing, reading, watching TV, etc. I developed double vision and depth perception problems and am no longer able to drive so have become dependent on my wife to run errands, etc. It has been two years since I gave up driving, and I must have gotten used to my wife's driving as she no longer scares me and I no longer fear for my life!
9. Do you have a caregiver who can help you when you have trouble?
My wife is my Care-Partner and gives me physical and emotional support, as well as a strong hand to hold and sense of humor
10.Do you have side affects from the medications you take? Such as drooling or ankle swelling.
I don't seem to have any side-effects from the Sinemet other than "wearing-off" of the medication and its benefits during the day. Particularly when there is a lot going on in the day. I was taking Mirapax for a couple of years and it seemed to help a great deal at first, but I developed serious side-effects, such as a compulsion to gamble, hallucinations, delusions and paranoia, unexplained anxiety and anger. I was slowly taken off the medication and those side-effects subsided greatly within a couple of weeks
11.Does your Parkinson's Disease seem to have gotten progressively worse overtime?
Yes it has. Initially I still worked, and was totally independent with no limitations and very little evidence of the disease. My Parkinson's has progressed over the past 7 years to the point that I no longer drive, my thinking process is slower and sometimes confused, I fall easily, I need assistance dressing, getting in and out of the bed, and sometimes in or out of a chair. My posture is poor, I lean and list more to the side when standing or sitting, I can no longer hold my head erect or my shoulders back and now have a defined "curving of the shoulders/neck and have a classic Parkinson's "stooped look". I have difficulty with the fine motor skills needed to write, tie my shoes, cut my food, button my shirt, etc. I now use a cane and probably should use my walker. For ease in getting around large stores or sightseeing, I sometimes use a wheelchair (wife powered).
12.Does anyone in your family have or had Parkinson's Disease?
Not that I know of, although in retrospect my Mother may have been developing Parkinson's in her early 80's as she was starting to walk with a shuffling-type gait, her posture was changing, as well as her handwriting, or these could simply have been age-related changes.
13.Has Parkinson's Disease affected your weight in any way?
After a lifetime of maintaining a steady weight, in my mid-60's I gained about 15 pounds (about the time I started Parkinson's medications), then slowly lost approx 25 pounds without explanation. I got to the point of needing a supplement such as Ensure to maintain my weight. I am 70 years old now and no longer seem to have an issue with losing or gaining weight.
14.Has your Parkinson's Disease been related to any prior head injuries?
Not that I know of.
15.Do you need any special equipment to get around with the Parkinson's Disease?
A cane, and sometimes a walker or wheelchair.
My wife first noticed that I was no longer swinging my left arm and was starting to take smaller steps while walking. She did some research, thought I might have Parkinson's, then proceeded to try to convince our family doctor to refer us to a neurologist/movement disorder specialist. The family doctor wasn't convinced and didn't think a referral was necessary which resulted in a change of doctors. The new doctor immediately made a referral to a movement disorder specialist who in turn did testing and diagnosed Parkinson's.
2. What kind of exercises do you do for your PD?
As I have done all of my adult life, I continue to do floor exercises such as sit ups, deep knee bends (holding onto something), upper body turns, weights, etc.. For my mind, I try to read, play games, stay curious. I feel the exercises have helped me keep my body and my mind as strong as possible.
3. How many years have you had PD?
I was diagnosed in 2002, but likely had Parkinson's several years before diagnosis.
4. What type of Parkinson's Disease do you have?
Adult onset, with early dementia (Parkinson's diagnosed in my early 60's in 2002, early dementia diagnosed in summer of 2008)
5. What kind of medications do you take?
25/100 Sinemet, 4 times a day for the Parkinson's, Lexapro for anxiety (as a result of dealing with Parkinson's), Exelon Patch for early signs of dementia, as well as Super B Complex vitamins just in case they help.
6. What therapies do you go to?
I don't currently go to any type of therapy; however, I did go through a rehabilitation program to help me learn to sit and stand from a chair properly, how to get in and out of a bed, how to properly use a walker and cane, how to get up from the floor after a fall, etc. I understand Tai Chi and dancing is very helpful, but I haven't tried them myself.
7. What kind of medical treatments did you have to go through?
While going through the process of being diagnosed, I had MRI's to rule out brain tumor, hydrocephaly, etc. Went through a number of physical activities for the doctor such as walking, sitting/standing, hand/eye coordination tests, balance tests, etc. I also took tests for memory and anxiety.
8. How has Parkinson's Disease changed your life?
It has reduced my mobility greatly. I have balance problems and fall easily; I tire easily, feel weak and at times have internal tremors, and feel I need to nap a couple of times a day. I also fall asleep at inappropriate times; i.e.; while eating, conversing, reading, watching TV, etc. I developed double vision and depth perception problems and am no longer able to drive so have become dependent on my wife to run errands, etc. It has been two years since I gave up driving, and I must have gotten used to my wife's driving as she no longer scares me and I no longer fear for my life!
9. Do you have a caregiver who can help you when you have trouble?
My wife is my Care-Partner and gives me physical and emotional support, as well as a strong hand to hold and sense of humor
10.Do you have side affects from the medications you take? Such as drooling or ankle swelling.
I don't seem to have any side-effects from the Sinemet other than "wearing-off" of the medication and its benefits during the day. Particularly when there is a lot going on in the day. I was taking Mirapax for a couple of years and it seemed to help a great deal at first, but I developed serious side-effects, such as a compulsion to gamble, hallucinations, delusions and paranoia, unexplained anxiety and anger. I was slowly taken off the medication and those side-effects subsided greatly within a couple of weeks
11.Does your Parkinson's Disease seem to have gotten progressively worse overtime?
Yes it has. Initially I still worked, and was totally independent with no limitations and very little evidence of the disease. My Parkinson's has progressed over the past 7 years to the point that I no longer drive, my thinking process is slower and sometimes confused, I fall easily, I need assistance dressing, getting in and out of the bed, and sometimes in or out of a chair. My posture is poor, I lean and list more to the side when standing or sitting, I can no longer hold my head erect or my shoulders back and now have a defined "curving of the shoulders/neck and have a classic Parkinson's "stooped look". I have difficulty with the fine motor skills needed to write, tie my shoes, cut my food, button my shirt, etc. I now use a cane and probably should use my walker. For ease in getting around large stores or sightseeing, I sometimes use a wheelchair (wife powered).
12.Does anyone in your family have or had Parkinson's Disease?
Not that I know of, although in retrospect my Mother may have been developing Parkinson's in her early 80's as she was starting to walk with a shuffling-type gait, her posture was changing, as well as her handwriting, or these could simply have been age-related changes.
13.Has Parkinson's Disease affected your weight in any way?
After a lifetime of maintaining a steady weight, in my mid-60's I gained about 15 pounds (about the time I started Parkinson's medications), then slowly lost approx 25 pounds without explanation. I got to the point of needing a supplement such as Ensure to maintain my weight. I am 70 years old now and no longer seem to have an issue with losing or gaining weight.
14.Has your Parkinson's Disease been related to any prior head injuries?
Not that I know of.
15.Do you need any special equipment to get around with the Parkinson's Disease?
A cane, and sometimes a walker or wheelchair.
Sunday, November 15, 2009
Karen's story
1. When did you notice you had the symptoms of Parkinson's Disease?
8 1/2 years ago when I was 39.
2. What kind of exercises do you do for your PD?
Not near enough due to fatigue and Pain.
3. How many years have you had PD?
Who knows? I can now see signs well before the tremor started 8 and a half years ago.
4. What type of Parkinson's Disease do you have?
Young onset.
5. What kind of medications do you take?
carbidopa Levadopa & amantadine
6. What therapies do you go to?
I have been to physical therapy but now just go to support group.
7. What kind of medical treatments did you have to go through?
Lots of tests. 2 MRI's, a spinal tap or Lumbar Puncture. I had to have a camera pushed down my throat and an ultrasound on my neck.
8. How has Parkinson's Disease changed your life?
PD has changed my life in many ways. I have met some wonderful people that I would have never met. I have been to Washington DC three times to lobby my congressmen and senators re: PD issues. On the downside, I spend a great amount of time watching TV. I no longer Hike, Camp, rollerblade or ride my bike due to Parkinson related pain. I spent almost 30 years working in dental offices as an assistant & office manager. Assisting is impossible with the tremor, and working at the desk for 8 hours a day is out due to pain.
9. Do you have a caregiver who can help you when you have trouble?
I have many people who help me out.
10.Do you have side affects from the medications you take? Such as drooling or ankle swelling.
I don't drool. My ankles are fine. I think my only side affects are dry mouth and the rolling dyskinisa on my right side.
11.Does your Parkinson's Disease seem to have gotten progressively worse overtime?
YES
12.Does anyone in your family have or had Parkinson's Disease?
NO
13.Has Parkinson's Disease affected your weight in any way?
At first I gained, now I have lost but I'm not so sure it isn't just change in my eating habits.
14.Has your Parkinson's Disease been related to any prior head injuries?
Not that I know of. I did hit my head many times as a child. I was queen of the "goose egg". I also had meningitis as a child .
15.Do you need any special equipment to get around with the Parkinson's Disease?
No
Monday, November 2, 2009
Ken's story...
My name is Verle (Ken),
I was diagnosed with Parkinson’s the summer of 2003. I guess that’s six years. When I was diagnosed I did not know anything about Parkinson’s.So had to do some research and find out what I had and how I would deal with it. After some reading up on it.I decided the best approach I could take was to first accept what had happen to me and then get on with my life.I started working out three days a week I feel that has kept any severe problems from taking me down.
I have no tremors as yet. My main problems are my balance, my speech and my hands don’t do small tasks very well such as hand writing and I have trouble typing or I guess now days people would day using a keyboard
Effects its had on my life:
I had to retire from my job as Director of Maintenance of a trucking company at 60 years old.I had worked for the company 29 years.It was tough to leave all my friends and fellow employee’s.
But when you can’t write legibly and I slurred my words as though I had been drinking. And the fact that I had balance problems so working around the truck and trailers and the shop were out of the question.
Effects on my family:
It has put a lot of stress on my wife.She worries about me falling all day while she is at work.
Also she has a hearing problem and she has a lot of trouble understanding me when I talking to her. From my low volume and my slurred speech. And when I am tired its much worse, so by the time she gets home form work. She is tired and so am I it makes it very hard for us to communicate. Everything bothers her much more than me so she is stressed out a lot of the time. She is always trying to help me much more than I need. I am finding out going to our support meeting that this a common thing. When the spouse is the care giver, they are over protective. As time goes on it gets better and better.
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