Aasland, Laurel Gender:
Female
Date of Birth: Nov 27, 1947
Diagnosis: PLS confirmed in Sept 1999 by Dr. Daniel LaChance/Mayo Clinic/Rochester, Minnesota
Has your dx been confirmed by a second neurologist/clinic? No
Were you misdiagnosed prior to getting a PLS dx? No
How long did it take you to get a diagnosis? Three months of testing
Symptoms: Feb 1998 peculiar gait, both sides (people said I was limping); June 1998 falling, I fell quite easily
(about once a monthly); Jan 1999 foot drag, both sides, I noticed shoes were wearing out in toes; Jan 2000 fatigue,
quite lethargic and felt lazy; Jan 2001 spasticity, both sides, especially during cold weather
Treatment or Aids you use: 2001 cane
What bothers you the most in regards to functions or abilities you have lost? Stamina, balance, speed
Are you participating in the NWU study? No
Are you participating in the NIH study? Yes, will go to NIH July 17-20, 2001
Do you have any blood relatives, living or deceased, with a similar neurological disease? No
Is there anything you attribute to your onset of PLS? Yes, back injury in 1996
Family, household, hobbies info: Four children, divorced, working 4 days a week
Employment info: Yes - 4 days a week, Oncology department of medical center, fairly sedentary
Household chores, daily living info: I live on 4 acres, and try to do everything myself. Have no spouse,
live alone.
What new activities or interests have opened up to you because of your disabilities? Internet support
groups.
Where do you live? Scarville, Ia.
Share this data? Yes
Email Address: laurel@wctatel.net
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Aiston, Carla Gender:
Female
Date of Birth:
Oct.
29, 1947
Diagnosis:
ALS confirmed July 2002 by Dr J. Lombard; 90%
sure w/ Dr Mitsumoto's 2001 test, 2001 updated my DX to ALS
Has your dx been confirmed by a second
neurologist/clinic?
No
Where you misdiagnosed prior to getting a PLS
dx?
No, Dr. Lange at Mount Sinai Dx was PLS
How long did it take you to get a diagnosis?
2 1/2 years
Symptoms: Sept 1996 foot drag
on left side and left foot drop; Oct 1996 peculiar gait on left side,
walked slow; 1998 right arm, little strength to open spring loaded door;
1999 arm/hand on left side, very weak atrophy in arm and hand; Sept 2000
falling, while standing still just fell down gracefully; Oct 2000 lost most
of use left arm/fasciculations; 2001 fatigue,
couldn't walk far.
Other Symptoms:
Jun 1972 felt dizzy, bad balance; 1970 loud noises bothered me; Sep 2002
spasms in legs and arms, dull aching pain in extremities, uncontrollable
crying
Treatment or Aids you use:
1979 Prozac; 2002 Neurontin, Klonopin Amitriptylin; 1982 Amitriptylin for
Fibromyalgia; 2002 starting to need a cane; 1998 Cortisone injections in
hips and shoulder for fibromyalgia; 1999 Celexa depression, Propranalol;
1998 Aleve for back pain, still taking to date.
What bothers you the most in regards to
functions or abilities you have lost? Fatigue, being an artist and not being able to
use my hands, no more piano playing, and bladder control.
Are you participating in the NWU or NIH study?
No
Do you have any blood relatives (living or
deceased) with a similar neurological disease?
No
Is there anything you attribute to your onset of
PLS?
Yes, exposure to print shop chemicals and other pharmaceutical chemicals for
20 years, heavy stress.
Family, household, hobbies info:
Did play the piano, intricate 3D art, Graphic
Designer, made 2 and 3 dimensional greeting cards, Illustration on Mac
Illustrator computer; make trellises, arbors and gates from young sapling
trees, home decorating, wallpapering, tiling (hiking, canoeing, rafting
horseback riding), once upon a time.....
Employment info:
Forced retirement in 2000, couldn't move fast enough to keep a job.
People would make remarks about my slowness. I had no idea I had a
disease. Very stressed cause I couldn't keep a job. SSDI in 2001. I was a
Package Designer at Lederle Laboratories Pharmaceuticals for 20 years.
Household chores, daily living info:
I don't have the energy to dust or clean anymore.
I try
to put things away so the house looks neat but with all the paperwork I have
the dining room table never gets cleared off. I just don't have the
energy. Still cook but by the time I am finished cooking and standing in
front of the sink, I have such pains in my lower back and shoulders I can
hardly sit and eat from the pain in my neck and all. My husband does help
with the dishes, shopping and vacuuming. Thank God I can still drive but
had to sell my Toyota stick shift and get an automatic. This was 4 months
ago and I'm glad I did cause I don't think I could drive it now.
What new activities or interests have opened up
to you because of your disabilities?
I spend much
time on the Internet talking to other PLS'er/ALS'ers. Unfortunately
Medicare can't get anything straight so many precious hours are spent on the
phone trying to get it straightened out. I will continue to do as many
outside projects like gardening until I can't get up off the ground and back
into the house. Then I will love my Gods Half acre from my window.
Additional Comments?
I am so afraid to think of my time that is left on this earth. How will I
end up? Will my husband be able to deal with my demise or will he leave
me. My brother and sister have no contact with me since my Mom died in
1999. This has caused much of my stress and deep sadness. I never thought
they could do this. My brother's comment told to me by my sister; was "read
Tuesdays With Morrie." I really have no family except my stepdaughter and
my perception is that she will not be there for me. I do have some
wonderful lifelong friends but they are not close by. Most of the time I am
not too depressed but if I end up in a wheel chair totally helpless with my
head resting on my shoulder I DON’T WANT TO LIVE and will try an overdose of
some kind.
Where do you live?
Ellenville, N.Y.
Email Address:
ccaiston@netstep.net
Share this data? Yes
Return to
Index |
Aliseo-Abel, Grace
Gender: Female
Date of Birth: May 13, 1947
Diagnosis: ALS confirmed in Nov 2002 at UCLS Westwood by Dr. Pazos
Has your dx been confirmed by a second neurologist/clinic? Yes
Where you misdiagnosed prior to getting a dx? No
How long did it take you to get a diagnosis? Two months
Symptoms: Nov 2000 arm/hand; Sep 2002 speech
Treatment or Aids you use: 2003
medications
What bothers you the most in regards
to functions or abilities you have lost? Arms
Are you participating in the NWU or
NIH study? No
Do you have any blood relatives
(living or deceased) with a similar neurological disease? No
Is there anything you attribute to
your onset of ALS? Yes, stress
Employment info: I still teach
Household chores, daily living info:
We share
Where do you live? Las Vegas,
Nev. Share this data? Yes
Email Address:
douglasabel@earthlink.net
Submitted: 02/2003
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Index |
Anderson, George Gender:
Male Date of Birth: Feb 16, 1945
Diagnosis:
PLS suspected June 2003, by Dr. Gregg Blume OSF Neurology Peo.Il
Has your dx been confirmed by a second neurologist/clinic?
Seven times I've been
to 9 neurologist and over 30 docs.
How long did it take you to get a diagnosis? Three plus years.
Symptoms: Aug 2000 speech, son in law thought I had been drinking; Oct
2000 swallowing, breathing, choking on cold liquids only; Nov 2000 falling
(right side), could not run, right leg would collapse under; Dec 2000
arm/hand (right side), buttoning shirt thumb was clumsy; Nov 2001 peculiar
gait (right side), leg wouldn't go where I wanted it to; Aug 2003
swallowing, breathing, losing breath when going up stairs
Other
Symptoms:
Apr 2001 Dr. at Iowa Clinic noted fasciculations in right leg,
later went away; Jun 2003 crying at sad movies, never before; Jul 2003
startle reflex when try to nap, any noise I would jump up. Has gone since.
Treatment
or Aids you use: 2001 dietary supplements, Minocycline; 2003 Baclofen,
had to quit, losing breath, Tizanadine not doing much; 2004 Neurontin
What
bothers you the most in regards to functions or abilities you have lost?
Some days unable to speak good and weakness in my right leg
Are you
participating in the NWU or NIH study? No, I intend to.
Do you
have any blood relatives (living or deceased) with a similar neurological
disease? Yes, mother, they thought had Alzheimer's probable and
sundowners for sure
Is there
anything you attribute to your onset of PLS? Yes, I believe my illness
can be connected to a virus as it all started with a bout with the flu and
PSO.
Family,
household, hobbies info: I have a wife and 2 children ages 34 and 35.
In spite of having this disease I can still function. I have found ways to
cope. I can fix most anything, I'm a fix it guy
Employment info: I was a Licensed Plumber 37 yrs. I retired at the
same time this disease started. Then I had a part-time job giving out
change at a car wash after retirement. They decided they didn't want me
there as I have a disease and may get hurt on the job (giving out change).
I'm on SSDI now and would not go back to work ever knowing how employers
treat disabled workers.
Household
chores, daily living info:
I'm still able to fix things around the
house. When the weather is not bad I get out and do yard work. I hired my
roof done this year and my wife helps me with some things, heavy lifting,
and I can still drive. My cognitive skills are still good, if not better.
What new activities or interests have opened up to you because of your disabilities?
I'm a computer nut. Now I find I'm online a lot in the winter. I do a lot
of house chores now, washing floors etc., as my wife still works.
Additional Comments? I have met a lot of nice people since being
probable diagnosed and joining a support group. I used to fell like I was
alone with this disease especially when docs didn't give me any answers.
Now I feel a bond with these people. All my old so called good work friends
treat me like I have the plague. And I've noticed this is done a lot if
people find out you have a disease. Well I've found new friends who I have
a lot in common with.
Where do you live? Peoria. Ill. Share this data?
Yes
Email
Address:
congeo1@ameritech.net
Submitted:
03/2004
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Index |
Anderson, Gerald
Gender:
Male Date of Birth: Jul 26, 1939
Diagnosis: PLS confirmed in Feb 2000 by Dr. Arazi, Bismarck, N.D.
Has your dx been confirmed by a second neurologist/clinic? Yes
Were you misdiagnosed prior to getting a PLS dx? Yes, knock-kneed, bad vertebrae, etc.
How long did it take you to get a diagnosis? About a month.
Symptoms: Spasticity on right side, going up and down stairs, rising under own power;
stiffness in rising from kneel position.
Treatment or Aids you use:
Feb
2000 baclofen, 60 x, not much help; March 2000 added Zanaflex 4mg. up to 6x.
March 2001 found different mfg of baclofen have different effects, Watson better
oval shaped pill than Schein.
What bothers you the most in regards
to functions or abilities you have lost? Difficulty in walking, not
using cane yet, fear of what's down the road.
Are you participating in the NWU or
NIH study? No, not familiar with them.
Do you have any blood relatives,
living or deceased, with a similar neurological disease? No
Is there anything you attribute to
your onset of PLS? No
Family, household, hobbies info:
Married, three children all married with children of their own. Former
editor and publisher of weekly newspaper which sold nearly 3 years ago. I
am still working in printing industry, hope to semi-retire but still have to
work. Hobbies: tinkering, woodworking, trap and target shooting.
Employment info: Still working
in printing industry in pre-press work, with negatives, some proofreading,
preparing material for offset printing also some bindery work. PLS has
affected my work in that it slows my walking movement, and I have to be
particularly careful with even slightly raised areas even at home, like
rugs, since feet dragging tends cause trips. Steps and inclined areas have
to be watched. Not retired yet, but thinking about semi-retiring--still
have to work even with drawing SS. SSDI doesn't qualify because I can still
work--one Dr. gave me only 15%.
Household chores, daily living
info: Household, daily living pretty normal, yet. Driving o.k.
What new activities or interests
have opened up to you because of your disabilities? None, yet.
Additional Comments? I was
particularly disturbed to find there are different manufacturers of
baclofen. Found out by accident. Have been getting round tablets, and even
from onset, they didn't seem to help any, and the Dr. added Zanaflex. Have
been getting pills through VA since last fall, and they have been the round
ones VA gets theirs through cheapest source, or availability. One month got
a batch of oval-shaped pills, and within a couple of days, perked up
considerably. Found out from my druggist there are different manufacturers,
and even though they're supposed to adhere to FDA standards, found out from
our state pharmaceutical board member our local druggist that there can be
considerable differences. Wow. Anyhow.
Email Address:
jerand@westriv.com
Share this data? Yes
Return to Index |
Auer, Ken Gender: Male Date of Birth: Apr 29, 1939
Diagnosis: PLS confirmed Dec 1999 at the ALS Center at UCSF
Has your dx been confirmed by a second neurologist/clinic? No
Where you misdiagnosed prior to getting a PLS dx? No
How long did it take you to get a diagnosis? About 3 years total.
Symptoms: Sep 1996 falling (right side) slipped on
cobblestone sidewalk; Jun 1998 foot drag on right side; Dec 1998 spasticity
on both sides; Jun 1998 falling; Aug 1998 peculiar gait (both sides); Jun
1996 speech; Jun 2000 arm/hand on right side.
Other Symptoms: Jun 2000 startle reflex; uncontrollable crying
Are you participating in the NWU or the NIH study? Yes
Do you have any blood relatives (living or deceased) with a similar
neurological disease? No
Is there anything you attribute to your onset of PLS? No
Share this data? Yes
Submitted: 02/2003
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Ball, Kathy
Gender: Female
Date of Birth: 06/27/1949
Diagnosis: PLS confirmed on 03/03/2005 by Dr. Kasarskis, Univ. of Kentucky, ALS clinic
Has your diagnosis been confirmed by a 2nd neurologist or clinic? Yes, by Dr Maureen Li, Dr John Quinlan
Were you misdiagnosed prior to PLS dx? No
How long did it take you to get a diagnosis? Two years
Symptoms: 02/2002 fatigue; 04/2002 spasticity, foot drag on left side, cramping,
fasciculations, weakness, tripping a lot, crying; 06/2003 peculiar gait; 06/2004 foot drag on right side; 09/2004 falling; 08/2004 swallowing and
breathing, could not get up without help, difficulty doing stairs.
Treatment or Aids you use: 03/2003 baclofen; 06/2003, B-12 daily and cane; 06/2004, bi-lateral
AFO; 09/2004 bipap, p/t wheelchair; 04/2005 walker
What bothers you the most in regards to lost functions or abilities? Not being
able to power walk and compete in mini walk/runs, not being able to run with my grandkids
Are you participating in the NWU or NIH study? No
Is there any family member (living or deceased) with a similar neurological disease? No
Is there anything you attribute your onset of PLS? Yes, Very stressful first 6 months of 2002
Family, household, and hobbies info: Married
34 years, have 3 sons all married, 3 grandchildren. Love to garden, cook,
antique cars, camping. Love to play with the grandkids, however I can no
longer play hide n seek. My husband has an antique 1953 Chevrolet truck
that has been restored. That definitely gives us something to do
Employment info: Was employed at a local gift shop p/t. I was a cashier, but did floral
arrangements as well. At the time (2002) I had no clue what was wrong, but I was having trouble keeping
up with my work. Had a hard time doing inventory, was tripping enough that I was afraid I would fall into
some of the displays. Could not lift as much. If I was on the floor, I could not
get up. I left my job in Aug of 2002. I applied for SSD in Feb of 03, but
was denied. Applied again in April of 04 and was approved in 5 weeks.
Household chores, daily living info: My husband now does the laundry, since it is in the
basement. He helps with dishes, cleaning, grocery shopping, cooking, yard work, taking care of the
pet. We do not have outside help. Yes I still drive, but limit myself.
What new activities or interests have opened up to you? Now that I no longer work, I have been
able to go on the church trips with our Seniors group. I also plan on getting involved with the walk to d feet.
Additional Comments? At this time Dr Kasarskis has confirmed PLS, but ALS is still a possibility.
But life is good, and I take it one day at a time. Humor is my new best friend.
It has been hard for me to ask for help, but I am getting better. The ALS
support group meetings have been a blessing.
Where do you live? Taylor Mill, Ky.
Share my data: Yes
Email Address: kathyscat49@yahoo.com
Submitted: 4/16/05
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|
|
Beckner, Martin Gender:
Male Date of Birth: July 21, 1930
Diagnosis: PLS confirmed in July 1995 by Richard Lederman, Cleveland
Clinic
Has your dx been confirmed by a second neurologist/clinic? Yes
Were you misdiagnosed prior to getting a PLS dx? No
How long did it take you to get a diagnosis? 2 Years
First Symptom: Feb 1991 arm/hand, left side (hand grew weak); May 1992 falling, slipped in snow/ice frequently; Jan 1994 speech, began to be slurred; Dec 1995 unable to walk without some assistance; Feb 1996 unable to walk, bought my first riding
apparatus; Mar 1997 bought power wheelchair
Other Symptoms: Dec 1993, startle reflex and uncontrollable laughing
and crying; Jan 1995, extreme muscle tightness in legs
Treatment or Aids you use: 1994 cane and walker; 1996 stopped
Rilutek; 1995 Baclofen; 1996, 3-wheel scooter, Pride Legend; 1996
Zanaflex; 1997 power wheelchair, Pride Jazzy; 1996 Rilutek; 1998 LINK
Assistive speaking device; 1996 stopped Baclofen
What bothers you the most in regards to functions or abilities you have
lost? Speech. - that is the most difficult thing from a social standpoint
and also eliminates things.
Are you participating in the NWU or the NIH study?
No
Do you have any blood relatives (living or deceased) with a similar
neurological disease? No
Is there anything you attribute to your onset of PLS? Yes, In 1983 I
had major abdominal surgery with significant complications.
Family, household, and hobbies info: I have my wife, 4 children and 10
grandchildren. None live near us- MN, Pa., Va. and Md. My Pa. driver’s license
expired in 1998 and I did not renew it. I took my N.C. license exam last week
and now am a licensed driver. I retired in 1993 as Business Manager for a
local school district in Pa. where I was responsible for everything of a
non-educational nature. I held that position for 21 years after 18 years in
private industry.
We have a motor home and do extensive traveling. We spend 2 months each
winter in Fla. We also have a son who is a pilot for Northwest and we travel
extensively on airline passes. My PLS has not hindered my desire to travel
thanks to my care taking wife. She has been the family driver since 1998. I
now am able to share driving but don't intend to do much driving.
I have a small workshop in our garage. I am able to walk to it with my
walker using a ramp we had constructed when we built our house in 1996. I
have built 3 dollhouses for my 3 granddaughters since I was PLS
diagnosed. I also do what I can around the house. I made 2
decorative birdhouses in the past 2 years. Although I have what I consider
to be full-blown PLS, I refuse to give in to it and maintain a positive
attitude.
Employment info: See above. I retired before being incapacitated by
PLS. I am on Medicare with Medigap insurance through Blue Cross.
Household chores, daily living info: See above, re: driving. We have
only lawn care help. My wife performs many tasks that I used to do. I am
able to dress and bathe myself. I can transfer from chair to chair at home
but need help outside of the home. My wife or children or friends help me to
stand outside of the home. I have retained my strength and do not get tired
anymore then pre-PLS days. I do not nap except on infrequent occasions. I
do not need help feeding myself. I do not have much trouble chewing or
swallowing.
What new activities or interests have opened up to you because of your
disabilities? See hobbies above. In addition, I now use a computer with
some expertise which did not interest me before PLS. I probably watch more
TV but I have always been a heavy sports watcher on TV. I read more since I
don't have the active lifestyle as before.
Additional Comments? I learned about PLS-Friends by attending the
Autumn in N.C. hosted by Don and Bettie Jo Wilson last fall and have enjoyed
reading about others problems and successes.
Where do you live?
Wilmington, North Carolina
Email Address:
renkceb@aol.com
Share my data: Yes
Return to Index |
B.
Gregg Gender: Male Date of Birth:
Jul 18, 1967
Diagnosis: PLS confirmed in Jun 2003
Has your dx been confirmed by a second neurologist/clinic? Yes
Where you misdiagnosed prior to getting a PLS dx? No
How long did it take you to get a diagnosis? Approximately one year.
Symptoms: 2000 fatigue after extended activity with legs; 2002 spasticity
on both sides but
more in right leg; 2003 foot drag on right side, toe on right foot digs into sole of shoe, fatigue,
foot curls to inside, have twisted ankle.
Other Symptoms: 2002 fatigue in lower back, mild tingling in
fingers.
Treatment or Aids you use: 2002 Zanaflex; 2003 multi vitamin,
vitamin b complex, creatine, doesn't make much difference.
What bothers you the most in regards to functions or abilities you have
lost? Mobility limits activities, had to leave profession.
Are you
participating in the NWU or NIH study? No
Do you have any blood relatives (living or deceased) with a similar
neurological disease? No
Is there anything you attribute to your onset of PLS? No, stress,
work with many chemicals? Don't really know.
Family, household, hobbies info: Live with girlfriend and her son. Used to enjoy going to local dirt tracks for auto racing. No longer
comfortable climbing bleachers. Spend more time lately on computer and video
games. Trying to find new interests and profession.
Employment info: Left work 6/17/03. Was mechanic at new car
dealer, applied for SSDI on 6/18. Not able to stay on feet all day and do
lifting required for job.
Household chores, daily living info: Still pretty good around house
but have trouble with yard work, mowing lawn etc.. Girlfriend does most of
the yard work.
What new activities or interests have opened up to you because of your
disabilities? Still exploring, stopped working two weeks ago. Been
busy with state and federal disability, Medicaid and other matters, many
appointments and phone calls. Was told by doctor to quit smoking- that
should be a challenge. Go for short bike rides to try to stay active. Fatigue sets in fast and legs get very tight afterwards, but feel good hours
later. Trying to keep muscles in condition as much as possible.
Where do you live? Schenectady, N.Y.
Share my data: Yes
Submitted: 07/2003
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Benoit, Gloria
Gender: Female Date of
Birth: Feb 25, 1958
Diagnosis: PLS confirmed in Jan 2002 by Dr. Warren
Has your dx been confirmed by a second neurologist/clinic? No
Were you misdiagnosed prior to getting a PLS dx? Yes, first Maniears
disease, and then MS
How long did it take you to get a diagnosis? Six years
Symptoms: Mar 1996 dizziness, ear infection; May 1996 hearing loss, left ear; 1997 stiffness in left leg, fell, hyper reflexes;
1998 spasticity in both legs, cramps feet dragging; 1999 numbness in hands, left side worse; Oct 2001 tremors in hands and body like epilepsy
unable to write with pen properly
Other Symptoms: 2001 spasms, startle reflex, uncontrollable crying,
memory loss. 2002 pain in both hips and legs even bottom of feet,
confusion.
Treatment or Aids you use: 1999, cane for balance for outings,
baclofen, amitrypline; 2001, walker on bad days, baclofen, amitypline,
Paxil, lipitor, bonamine; 2002, off baclofen, amitypline not working,
on Paxil, lipitor and valium now.
What bothers you the most in regards to functions or abilities you have
lost? Loss of memory, mobility in legs and hands.
Are you participating in the NWU or NIH study? No
Do you have any blood relatives (living or deceased) with a similar
neurological disease? No, don't know fathers side medical
history, nothing on mothers side, she has loss of balance reason unknown.
Is there anything you attribute to your onset of PLS? Yes, stress,
trauma, surgeries hysterectomy, C-sections, back surgery T3 and T4 with
fusion and many more.
Family, household, and hobbies info: Divorced, with two grown children,
live alone but considering moving in with my son. I like to cross
stitch, any other crafts. I used to crochet but unable to now. I
volunteer with a racing club, arthritis events. Reading is a passion
and crosswords.
Employment info: Was a dispatcher until hearing loss made it too
difficult. I'm on AISH benefits.
Household chores and daily living info: Housework done by myself, only
slower get very tired easily. My son helps me at times. Don't
drive.
What new activities or interests have opened up to you because of your
disabilities? Spend more time on computer, just learning
again though. Exercise and do Tai Chi.
Additional Comments? I refuse to let this disease take hold of me
without a fight. I'm a very stubborn person. Most of the meds
that are available, I'm unable to take as I'm allergic to just about
everything, if not allergic then have a sensitivity to them.
Where do you live? Edmonton, Alberta, Canada
Share my
data: Yes
Email Address: kid-herder@shaw.ca
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|
Benwell, John
Gender: Male
Date of Birth: Feb 12, 1939
Diagnosis: PLS confirmed in 2003 by Dr. Siddique
Has your dx been confirmed by a second neurologist/clinic? Yes
Where you misdiagnosed prior to getting a PLS dx? Yes
How long did it take you to get a diagnosis? Three days
Symptoms: 2001 foot drag on right side; 2002 spasticity, both sides; 2003 falling
and speech; 2004 spasticity
Other Symptoms: Startle reflexes, spasms, uncontrolled emotions
Treatment or Aids you use: Clonopin, walker, wheelchair,
scooter
What bothers you the most in regards to functions or abilities you have
lost? Loss of balance, inability to walk unaided
Are you participating in the NWU study? Yes
Are you participating in the NIH study? No
Do you have any blood relatives (living or deceased) with a similar
neurological disease? Yes, older sister has MS
Is there anything you attribute to your onset of PLS? No
Family, household, and hobbies info: Fishing, camping, travel
Employment info: Retired on disability, worked as mechanic for
major airlines
Household chores, daily living info: Attempt some household
chores, no outside help at this time, spouse does duties I used to do, don't
drive anymore.
What new activities or interests have opened up to you because of your
disabilities? None
Additional Comments? am getting progressively worse as time passes
Where do you live? St. Louis, Mo.
Share my
data: Yes
Email Address: bchute1@charter.net
Submitted: 03/2004
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|
Bielech, Jennifer Gender: Female
Date of Birth: 10/11/1972
Diagnosis: PLS
suspected in 11/2004 by Dr. Jeffrey Kramer- Mercy Hospital/Chicago, IL.
Has your diagnosis been
confirmed by a 2nd neurologist or clinic? No
Were you misdiagnosed prior
to PLS diagnosis? Yes, Issac's Syndrome/Neuromyotonia
How long did it take you to
get a diagnosis? Still in process
Symptoms: 07/2004 had
bad spasms in my right leg and back; 08/2004, spasms moved to left leg;
11/2004 fatigue - slept 10 -14 hours a day; 11/2004 peculiar gait,
spasticity, legs were shaking upon standing; 01/2005 arm/hand -
heavy feeling when lifting arms above head and whole body
weakness; 02/2005 speech - admitted to ICU short of breath breathing in, fasciculations are all over my body but can only be seen at
night/or overdone, startle reflex.
Treatment or Aids you use: 12/2004 Baclofen 60 mg a day - got rash didn't know if it was due to
other meds; 01/2005 – 04, Zanaflex, neurotin, tegretol - didn't help;
12/2004 quad cane for short distances; 01/2005, wheel chair for long
distances; 06/2005 back on Baclofen
What bothers you the most in regards to lost functions or abilities? I was a very active person
working a full time job and working out 3 x's/wk....fun with kids
Are you participating in the NWU or NIH study? No
Do you have any family members (living or deceased) with a similar neurological disease? Yes,
Aunt with Fibromyalgia
Is there anything you attribute to your onset of PLS? No, we're not sure
Family, household, and hobbies info: I like to read, garden and chat online
Employment info: I am
applying for Social Security benefits. I used to be a merchandise analyst
for the children's department at Sears' Home office. I no longer can stay
awake or think clearly to do it. I also am not able to awake so early for
my job and be able to get around at work.
Household chores and daily living info: I still do my chores until I shake too much and then I
stop. I don't drive any more because my foot when driving shakes up and
down in that position.
What new activities or interests have opened up to you? I try to paint my
plaster crafts more.
I also read large print books a lot more now (I have had a retinal
detachment that never came back fully).
Additional Comments? I wish they new for sure. But, time is the answer and so far it's scary but I
have a lot of the symptoms that is described. I have been to two
neuromuscular specialists and both tell me they don't know what it is. I
say I quit until I get worse and hopefully I wont. I have had every test
known to man done and I'm not doing any more.
Where do you live? Saint John, Ind.
Share my data: Yes
Email Address:
jbielech1@yahoo.com
Submitted: May 27, 2005
Return to Index |
B L Gender:
Female Date of Birth:
02, 28, 1951
Diagnosis: PLS confirmed in Sept 1997 at the University Hospital in Denver, Colo.
Has your dx been confirmed by a second neurologist/clinic? No
Were you misdiagnosed prior to getting a PLS dx? No, The 1st neurologist didn't offer a diagnosis
How long did it take you to get a diagnosis? Sixteen months
Symptoms: May 1996 speech, tongue muscle affected, felt thick
and sluggish,
falling; Nov 1996 peculiar gait; Mar 1997 arm/hand; Mar 1997 swallowing, breathing;
Other Symptoms: Balance problem from the very beginning, worsening with baclofen, startle reflex
came and went in the beginning, but it now very pronounced and constant.
Emotional liability is also part of my symptoms but I am able to control it
better now
Treatment or Aids you use:
1997, 30 mg Baclofen, 1998 cane and 4 wheel walker with
handbrakes; 1999 increased baclofen to 65 mg., 2000 weaned off baclofen,
switched to Zanaflex; 2000 using shower seat, and handle bars on toilet, AFO's on both feet; 2001 manual wheelchair for long distances
What bothers you the most in regards to functions
or abilities you have lost? The effects on my speech bothers me the most
Are you participating in the NWU or the NIH study? The NWU but not the NIH
Do you have any blood relatives, living or deceased, with a similar neurological disease? No
Is there anything you attribute to your onset of PLS? No, but I had a bad bout of food poisoning 3-4
weeks before I noticed my first symptoms
Employment info: I retired on disability in July 1998 from my job as manager of a small
computer department. I am receiving SSDI as well as supplemental payments
from my employee retirement plan.
Household chores, daily living info: I no longer drive and can do very little household chores. My husband now
does all of the cooking, cleaning, etc., which we used to share doing.
Where do
you live? Colorado
Share my data:
Yes
Return to Index |
Boes, Marilyn
Gender: Female Date of Birth:
Sept 16, 1951
Diagnosis:
PLS suspected in Aug. 2001 by Dr. Boyd Koffman - Medical College of Ohio
Has your dx been confirmed by a second
neurologist/clinic? Yes
Where you misdiagnosed prior to getting a PLS dx?
Yes, most definitely!
How long did it take you to get a diagnosis? Seven years
Symptoms: Jan 1994 peculiar gait on right side; Apr 1995 fatigue; Nov 1995 foot drag
(right side) began use of wheelchair;
Jan 1997 falling; Jan 1999 arm/hand, both sides; Jan
2000 spasticity
Other Symptoms: Jan
2001 began to have swallowing and speech difficulties along with twitches
in upper and lower extremities. Jan 2002 continued extreme leg weakness and severe fatigue
Treatment or Aids you use:
1995 wheelchair, forearm canes; 2001 amputation of 2 toes
right foot because of severe contractures and pain; 1996 bilateral long leg
braces; 1997 bilateral AFO's; 1999 seven tendon transfers in right foot;
2000 eight tendon transfers in left foot.
What bothers you the most in regards to functions or abilities you have lost? Can't play the sports,
which I used to love, even "go for a walk," and cannot be totally
independent.
Are you participating in the NIH or the NWU study?
Yes, have been evaluated by Dr. Siddique one time in 2002 and had a blood
draw for NWU studies. Am not in the NIH study.
Do you have any blood relatives (living or deceased) with a similar neurological disease?
Yes, my only maternal aunt passed away in 1989 from ALS
Is there anything you attribute to your onset of PLS? No
Family, household, hobbies info:
Animals are my passion. I do volunteer work with Paws With A
Cause. My husband also loves animals, and so we are active in functions
having to do with the Humane Society, etc.
Employment info: I was
approved for SSDI in January of 1996. I still do work part-time,
approximately 30-35 hours a month doing medical transcription, but it is
very, very difficult for me because of the fatigue factor.
Household chores, daily living info: I do drive. We recently obtained a
van that we may soon have converted if I decide to get an electric chair. I
do my own grocery shopping from an electric chair. We have had a
housekeeper who has come in for approximately the past 6 years. My husband
does all of the cooking that we do at home, although frankly we have been
eating out more and more! My husband performs all activities that I am not
able to do anymore, plus his own outside chores, and is very supportive of
me.
What new activities or interests have opened up to
you because of your disabilities? Volunteer work
which gives me tremendous satisfaction. There was a time when I didn't know
what was left in life for me to do besides sitting in the house, as I was SO
active prior to the onset of this disease. Volunteer work, and especially
working with animals, fulfills a deep down need for me to feel wanted and
productive, and makes me feel really good about myself.
Additional Comments? I have been misdiagnosed and undiagnosed for many years. I had a serious
spinal surgery as a problem with a tethered spinal cord was thought to be
the cause of all my difficulties. This entailed months in rehab and even an
inpatient stay at a rehabilitation hospital to relearn everyday ADL's. I've
had numerous surgeries on both feet for severe contractures, and we are now
beginning the amputation process as there are no other answers, and the pain
is tremendous. I've also had an extensive surgery on my right wrist back
in, I believe, 1990, due to what was thought to be a "reverse carpal
tunnel," when in all essence it was probably the pain and inability to use
the hand properly was probably due to PLS. I have also been presented at a
medical conference in front of at least 40 physicians from around the state
to see if they could shed some light on this mysterious decline in my
health. This was back in 1995 also before they decided to attempt the spinal surgery. I have been evaluated at NIH back in late 1995, when the
subject of PLS was first mentioned, and then it was a "wait and see" sort of
thing for a few years. I have seen numerous doctors from all walks of life,
none, until recently, who were able to diagnose me. It has been a long and
frustrating experience for both my husband and myself. The doctor who first
suspected PLS at NIH back in late 1995, I was fortunate enough that he
relocated to a teaching hospital/college that is close enough for me to
continue seeing him.
Where do you live? Grand Rapids, Mich.
Email Address:
pawslady@attbi.com
Share my
data: Yes
Return to Index |
Boss, Ralph F. Gender: Male
Date of Birth: Sept 8, 1939
Diagnosis: PLS confirmed in
Jun 1997 by Dr. David Goodenough in Bangor, Maine
Has your dx been confirmed by a second neurologist/clinic? Yes
Where you misdiagnosed prior to getting a PLS dx? No
How long did it take you to get a diagnosis? Appox. one year
Symptoms: Symptoms started in Dec 1995 with falling, foot drag
(right side), arm/hand (right side), spasticity,
fatigue, unable to walk, swallowing, and breathing problems.
Treatment or Aids you use: Many, many meds (was
42 pills a day), cane, walker, power w/c over 3 years, 2 sets of AFO's - left
foot rolls under
What bothers you the most in regards to functions or abilities you have
lost? What was lost is gone. I live for today
Are
you participating in the NWU or NIH study?
No
Do you have any blood relatives (living or deceased) with a similar
neurological disease? No
Is there anything you attribute to your onset of PLS? Yes, stress
Employment info: Retired - New car dealer service
manager
Where do
you live? 5 Charles St. Lincoln, M
Email Address: rboss@telplus.net
Share this data? Yes
Return to Index |
Brand, Flora Gender: Female
Date of Birth: Nov 06, 1946
Diagnosis: PLS confirmed in Dec 1996 by Dr. Michael Franklin-St Petersburg Medical- MDA
Clinic
How long did it take for you to get a diagnosis? one year
Has you diagnosis been confirmed by a 2nd neurologist? Yes
Were you misdiagnosed prior to the PLS dx? No
Symptoms: May 1991 speech, only symptom-dx w/
spasmodic dystonia; May 1995 foot drag, right side, keep tripping;
June 1995 fatigue, could hardy make it through all day;
Aug 1995 falling, loose balance could not catch myself; 1996 spasticity, walk stiff with the right
leg only
Other symptoms: 1995 startle reflux, uncontrollable laughing and crying
Treatments or Aids used: 1996, cane, 1998, walker-four wheel, 1993,
Botox injection-vocal cords
Are you participating in the NWU or NIH study?
No
Do you have any family members, living or deceased, with neurological disease? No
Is there anything you attribute to your onset of PLS? Yes, in May
1995 I fell and broke my left wrist -first symptoms starting showing up was foot
drag
Family, household, hobbies info: I am 54 years old, married for 32 years,
we have one child 28 yrs old. Have always
worked until 1996 I had to retire physically due to fatigue and spasticity.
I still do normal housework, just have to pace myself and figure different
ways to do things. I don't drive due startle reflex and I don't want to harm
someone. My only hobby is reading. I was always a walker, I would walk 10
miles a week so I really miss that. I also love to cook, I still do that.
Employment info: I do not work, when I did work the last five years I was a bookkeeper for a college bookstore. I really miss not working.
I stopped work in August 1996 and went on disability in Feb 1997. I was the
one that decided to end work, it was fair to the other people, they were
always stepping in to help my boss, especially.
Household chores, daily living info: My husband and daughter help
with things like vacuuming and mopping the floor sweeping etc.
What new activities or interests have opened up to you because of your disability? None
Other Comments:
PLS probably started with my voice back in 1991 but I had no other sign until 1995 when I broke my wrist
Where do you live? St Petersburg, Fla.
Your Email Address:
belgium46@aol.com
Share this information: Yes
Return to Index
|
Brown, Richard Gender: Male Date
of Birth: Apr 06, 1937
Diagnosis: PLS confirmed in Nov 2002 by Dr. Swenson
Has your dx been confirmed by a second neurologist/clinic? Yes
Where you misdiagnosed prior to getting a PLS dx? Yes
How long did it take you to get a diagnosis? Seven years
Symptoms: Apr 1995 falling, left side, knee would give way; Apr 1996 spasticity, left side; Nov 1999 speech
Treatment or Aids you use: 1997 AFO; 1998
scooter - walker
What bothers you the most in regards to functions or abilities you have
lost? No sports
Are you participating in the NWU or NIH study?
No
Do you have any blood relatives (living or deceased) with a similar
neurological disease? No
Is there anything you attribute to your onset of PLS? No
Family, household, and hobbies info: Wife: married 42
years, 61 years old. Sons: Mike 41, Patrick 40, Tim 36. Daughter 38.
Employment info: Retired 1996 after using up sick leave, was mail
carrier.
Household chores, daily living info: Still able to do most things,
steps are hard. No stamina. Still drive. Wife does a good job taking care
of my needs.
What new activities or interests have opened up to you because of your
disabilities? Love computer
Where do you live? Louisville, Ky. Email
Address:
db273@hotmail.com
Share this data? Yes
Return to Index |
Campbell, Thurza
Gender: Female
Date of Birth: Feb 26, 1941
Diagnosis: PLS confirmed in Oct 2001 by Martin Bielowski
Has your dx been confirmed by a second neurologist/clinic? Yes
Were you misdiagnosed prior to getting a PLS dx? No
How long did it take you to get a diagnosis? Six weeks for 1st opinion
Symptoms: Aug 1998 lack of balance when hiking; 1999 foot drag on left side;
2000 peculiar gait, both sides; 2000 fatigue; Jun 2001 speech
Treatment or Aids you use: 2001 acupuncture; 1991 swimming 1/2 mile 3x a week;
2001 daily hot tub therapy; 2002 cane
What bothers you the most in regards to functions or abilities you have lost?
People thinking I am drunk due to slurred speech and gait, slowing down physically
Are you participating in the NWU or the NIH study? Yes, both (I went to NIH Feb 2002 for the PLS studies).
Do you have any blood relatives, living or deceased, with a similar neurological disease? No
Is there anything you attribute to your onset of PLS? No
Family, household, hobbies info: Married 40 years, we have 3 married children,
and 6 grandchildren. I am a Landscape Designer - my creative CAD work is my saving grace.
Employment info: I own my business, so set my appointments. Designing is great, as it happens
here at my computer. Supervision of installations is workable thanks to my great installation team
Household chores, daily living info: We have some household cleaning help. My husband is helping
more both inside and outside the house. Driving is not a problem.
What new activities or interests have opened up to you because of your disabilities?
Spending more time at the computer. The connections with others with PLS are very helpful. Trying to
learn more about neurology and stem cell fund and to become a political
activist to be sure stem cell fund and therapeutic cloning continue.
Additional Comments: In reading input from others, I was surprised
at how many were not participating in the NW study - and that 2 never received the packet from
them. I hope they contact NW again. Mine came immediately. I gather that all are needed to make this
work.
Where do
you live? Sherborn, Mass. Email Address:
jimthurza@mediaone.net
Share this data? Yes
Return to Index |
Carron, Dolores
Gender: Female Date of
Birth: May 02, 1942
Diagnosis: PLS confirmed in Oct 1995 by Dr. Marie-Anne DeNayer
Has your dx been confirmed by a second neurologist/clinic? Yes
Where you misdiagnosed prior to getting a PLS dx? No, no
diagnosis was made
How long did it take you to get a diagnosis? More than 9 years
Symptoms: 1985 fatigue, worse in hot weather; 1986 falling, was not previously prone to
falling; Apr 1987 foot drag, right side, episodic with heat or fatigue; 1990 peculiar gait, started "wall walking"; 1995 arm/hand, right side, trouble playing piano, doing needlepoint, etc
Treatment or Aids you use: 1996 started using a cane; 1998
relying on walker and w/c for longer distances; 2002 started using Baclofen
and/or Zanaflex in limited doses to decrease spasticity; both caused weakness
What bothers you the most in regards to functions or abilities you have
lost? Many of my favorite activities have been curtailed--dancing,
walking, needlework, piano playing
Are you participating in the NWU or the study? Yes, (I was only called
for one visit for NIH study)
Do you have any blood relatives (living or deceased) with a similar
neurological disease? No
Is there anything you attribute to your onset of PLS? No,
possibly 1) winter of concurrent unusual viral illness or 2) dialysate fumes
at work
Family, household, hobbies info: Reading
and the computer. I
established a PLS/HSP support group in September 2001, called the
Connecticut Connection. I still speak to groups such as Sr. Citizens, MS
Society, breast cancer support groups, and teen summer programs on various
nutrition topics. I also teach periodic nutrition classes to PT
students at an area university.
Employment info: I left work in May 1995; am a Registered
Dietitian.
Household chores, daily living info: I cook, do laundry and
some cleaning but hire someone to do the vacuuming that I find difficult.
What new activities or interests have opened up to you because of your
disabilities? Increasing public awareness of PLS through media
coverage (newspaper and TV). I also advocate for nursing home patients and
elderly in the community.
Additional Comments: Please contact me if you'd like to be
added to my mailing list for CT Connection activities.
Where do you
live? Newington, Conn.
Share this
data? Yes
Email Address: d.carron@worldnet.att.net
Submitted: 02/2003
Return to Index |
Cockrell, Dorothy
Gender: Female
Date of Birth: May 18, 1932
Diagnosis: PLS confirmed in Feb 2002 by Kenneth Eckmann, M.D.
Has your dx been confirmed by a second neurologist/clinic? No
Where you misdiagnosed prior to getting a PLS dx? No
How long did it take you to get a diagnosis? Less than a year
Symptoms: 1999 falling when turning to the left; 2001 peculiar gait, both sides, legs felt stiff; worse
toward evening; 2002 arm on both sides, loosing fine motor ability in
hands; 2002 peculiar gait, both sides, loosing some
coordination and balance
Other Symptoms: 2001 startle reflex; 2003 increased difficulty in
rising from a sitting position, Tinnitus, periodic lightheadedness; 2005 speech (6 sessions of speech therapy)
Treatment or Aids you use: 2003 use a
Sure Step cane, which has become a good friend; 2005 walker outside of home
What bothers you the most in regards to functions or abilities you have
lost? Having to give up my long, brisk walks, plus the limitations this
has put on my independence
Are you participating in the NWU study? Yes Are you
participating in the NIH study? No
Do you have any blood relatives (living or deceased) with a similar
neurological disease? Yes, a second cousin has MS
Is there anything you attribute to your onset of PLS? No
Family, household, hobbies info: Live alone; do volunteer work for my
congregation and have volunteered here in my senior community; needlepoint,
knitting, recently completed memoir book, currently sorting and organizing
photos. Both adult children have moved from the immediate area.
Employment info: Retired in 1995 as a Legislative funder and
Administrator in County government.
Household chores, daily living info: 2005 - Moved into an independent
apartment in a continuing care, fabulous senior community called Riderwood.
(See www.ericksoncommunities.com) Have
groceries delivered and housekeeping once a month. I still drive.
What new activities or interests have opened up to you because of your
disabilities? I am in a support group for persons living with chronic
illnesses. I do a deep-water running class once a week and a stretching and
weights (4 pounds) routine twice a week. Attended the Berkeley Springs, WV,
Spring Fling for the 4th year in a row - what a great group of friends! Use
the fitness center where I live and I am back to walking in the enclosed,
carpeted, climate controlled hallways/bridges here.
Additional Comments? I plan to get
on the waiting list for a nearby assisted living facility and just hope
that's a move that is a few years off yet.
Where do you live? Silver Spring, Md.
Share this data? Yes
Email Address: DorothyAKC@aol.com Submitted: 02/2003;
Updated: 5/2003 and April 15, 2006
Return to Index |
Cockshott,
Adrianna Gender:
Female Date of Birth: Feb 22, 1947
Diagnosis: PLS confirmed Feb 2000 by Dr Scopa (Australia)
Has your dx been confirmed by a second neurologist/clinic? Yes
How long did it take you to get a diagnosis? One year
Were you misdiagnosed prior to getting a PLS dx? Yes, M.S
Symptoms: Dec 1998 spasticity, foot drag; 1994 fatigue, swallowing,
and breathing;
1995 falling; 1999 fatigue, swallowing, breathing; 2000 spasticity, unable to walk
Other Symptoms: 1995 tight face and neck has never gone
away; 2000 weak hands
Treatment or Aids you use: 2001 crutches for a couple of weeks
What bothers you the most in regards to functions or abilities you have lost? Fatigue and stiff tired legs
Are you participating in the NWU study? Yes
Are you participating in the NIH study? No
Do you have any blood relatives, living or deceased, with a similar neurological disease? No
Is there anything you attribute to your onset of PLS? No, stress? Trauma?
Family, household, hobbies info: Movies, beach
Employment info: I had a career and have had to give it up.
Some days I now only work 3 days a week but find it a struggle but need the
money. I get some disability pension.
Household chores, daily living info: I do house work bits at a time and sit allot.
What new activities or interests have opened up to you because of your disabilities?
Computer
Additional Comments? I wish my doctors understood what I am experiencing.
Where do you live? Perth,
Western Australia,
Email Address: ady@upnaway.com
Share this
data? Yes
Return to Index |
Cohen,
Fern Gender: Female
Date of Birth: Jun 07, 1955
Diagnosis: PLS confirmed Apr 2004 by Dr Mitsumoto -- Columbia
Presbyterian MDA Center
Has your dx been confirmed by a second neurologist/clinic? No
Where you misdiagnosed prior to getting a PLS dx? Yes, ALS
How long did it take you to get a diagnosis? Three months
Symptoms: Jun 2003 falling, left side; Oct 2003 speech; Dec 2003 spasticity, left side;
Mar 2004 fatigue; Mar 2004 swallowing, breathing
Other Symptoms: Mar 2004 startle reflex
Treatment or Aids you use: 2004 baclofen, rilutek, cane, walker
What bothers you the most in regards to functions or abilities you have
lost? I am a teacher and my speech is getting hard to understand
Are you participating in the NWU study? No
Are you participating in the NIH study? Yes
Do you have any blood relatives (living or deceased) with a similar neurological disease? Yes, Parkinson's
Is there anything you attribute to your onset of PLS? Yes, stress, possible virus
Family, household, hobbies info: I live alone, my hobbies include crosswords, reading, paper crafts, collage and other art
Employment info: I am currently still teaching but have applied for a disability transfer. Don't know how
much longer I can keep it up.
Household chores, daily living info: I still drive and I do everything myself
- I have no help
What new activities or interests have opened up to you because of your
disabilities? None... I have lost my bike riding and aerobic dance .. I used
to go for long walks around the city and I can't do that anymore.
Where do you
live?
Rego Park, N.Y. Email Address: fec139@aol.com
Submitted: 5/2004
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|
Covington, Gary Gender:
Male Date of Birth: Sept. 25, 1954
Diagnosis: PLS confirmed Apr 1993 in Melbourne, Australia
Has your dx been confirmed by a second neurologist/clinic? Yes
Where you misdiagnosed prior to getting a PLS dx? No
How long did it take you to get a diagnosis? Four weeks
Symptoms: Mar 1992 spasticity; Apr 1992 peculiar gait; Jun 1992 foot drag; Aug 1992 falling; Dec 1992
arm/hand; Jun 1994 speech; Jun 1996 swallowing and breathing
Other Symptoms: Jan 1996 by then fascics, startle reflex, uncontrollable laughing all existed. Can't
remember exact onsets.
What bothers you the most in regards to functions or abilities you have lost? Lack of speech exacerbates the problems caused by other symptoms e.g. if I fall I can't
call for help.
Are you participating in the NWU or the NIH study? No
Do you have any blood relatives (living or deceased) with a similar neurological disease? No
Is there anything you attribute to your onset of PLS? Yes, prolonged stress caused by career
problems, possible chemical exposure.
Family, household, hobbies info: Wife, Jacqui, finding it very difficult to cope coming up to
10-year anniversary of diagnosis. Daughters Rebecca (19) and Sarah (16) seem to cope well.
I used to do a lot of horse riding, hiking and white water kayaking. Earlier in my life I was a
keen, half decent Australian Rules footballer. Am now pretty much restricted to my PC and reading
magazines and books.
Employment info: Had changed careers about 4 years before my diagnosis from a math/computer
teacher to a computer programmer. Since diagnosis the company I work for (multi-national
American company) has been very supportive so am still working full time.
Household chores, daily living info: I can no longer do any of the outside jobs I used to do
except for mowing our one acre block using a ride-on-lawn mower (we moved to a very flat block of land from the sloping 10 acre horse property we had
before my diagnosis). We now have someone come in regularly to do some gardening for us. I am still able to drive, as my startle reflex is not
severe so causes me no problems when driving. I drive an unmodified automatic car using one foot for the accelerator and keep the other foot
hovering over the brake pedal so my reaction times are still good.
What new activities or interests have opened up to you because of your disabilities? None really,
have just expanded my computer time.
Where do you live?
Melbourne, Victoria, Australia
Share this data? Yes
Email Address: covo@melbpc.org.au Submitted: 12/2002
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|
Croom, Pat Gender:
Female Date of
Birth: Jan 29, 1941
Diagnosis: PLS confirmed June 2000 at Baptist
Hospital, Winston Salem, N.C.
Has your dx been confirmed by a second neurologist/clinic? Yes
Where you misdiagnosed prior to getting a PLS dx? Yes, Parkinson's
How long did it take you to get a diagnosis? Eighteen months
Symptoms: Jan 1998 foot drag, left side; Jun 1998 falling; Jun 1999 peculiar gait; Sep 2000 spasticity;
Apr 2001 unable to walk; May 2002 speech; Apr 2000 startle reflex, uncontrollable laughing or crying
Treatment or Aids you use: 1998 cane; 2000 walker, 30mg Baclofen
daily, anti-depressant; 2001 scooter; 2002 power
wheelchair
What bothers you the most in regards to functions or abilities you have
lost? Speech! Communication
Are you participating in the NWU or the NIH study? No
Do you have any blood relatives (living or deceased) with a similar neurological disease? No
Is there anything you attribute to your onset of PLS? No
Family, household, hobbies info: Married 42 years, no children. We were dancers and we still enjoy music. My husband walks
daily. I enjoy reading and the computer. We are homebodies and enjoy having family and friends over. My husband loves to cook for family and friends!
Employment info: Retired 3/1998. I did PR for a large
bank for 20 years. I started drawing SSDI in Sept. 2000
Household chores, daily living info: My husband does all the cooking and shopping. We work together doing daily cleaning. We
have weekly help. I stopped driving Jan. 2000
What new activities or interests have opened up to you because of your
disabilities? I enjoy reading and the computer. We spend a lot of time with family. I also enjoy PLS Friends.
Where do you live?
Garner,
North Carolina
Share this data? Yes
Email Address:
pcroom@dockpoint.net Submitted: 12/2002
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|
DiClemente, Rita
Gender: Female
Date of Birth: May 25 1936
Diagnosis: PLS confirmed 1986 at the Lahey Clinic, Burlington,
Mass.
Has your dx been confirmed by a second neurologist/clinic? Yes
Where you misdiagnosed prior to getting a PLS dx? No
How long did it take you to get a diagnosis? Two and half years
Symptoms: 1975 arm/hand, both sides; 1976 falling; 1980 peculiar gait, both sides; 1983 spasticity
Other Symptoms: 1986 uncontrolled crying; 1990 spastic bladder
Treatment or Aids you use: 1986 Baclofen; 1992 four-wheeled
walker; 1988 Prozac; 2002 power chair; 1990 Ditropan; 2002 handicap van,
1986 manual wheelchair
What bothers you the most in regards to functions or abilities you have
lost? Loss of balance
Are you participating in the NWU or NIH study?
Yes, both
Do you have any blood relatives (living or deceased) with a similar
neurological disease? Yes, MS-second cousin on father's side
Is there anything you attribute to your onset of PLS? Yes,
extreme stress
Family, household, hobbies info: Flea markets, counted cross-stitch,
love music
Employment info: Do not work. I was in
property/causality-claims processor. PLS forced me to retire 1986, and
collected SSDI right away
Household chores, daily living info: No I do not hire
outside help. Yes, my husband does 90% of the things I use to do.
Yes I still drive.
What new activities or interests have opened up to you because of your
disabilities? Counted-cross-stitching, and reaching
people who are either physically or mentally challenged
Where do you live?
Hollis,
N.H. Share this
data? Yes
Email Address:
ritadfromhollis@webtv.net
Submitted: 05/2003
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|
Dixon, Angela
Gender: Female Date of Birth:
Aug 30, 1937
Diagnosis: PLS confirmed Aug 1997 by Dr. Scott Heller, Northwest University Hospital
How long did it take for you to get a diagnosis? Four months
Has you diagnosis been confirmed by a 2nd neurologist? Yes
Were you misdiagnosed prior to the PLS dx? Yes, ALS - July 1997
Symptoms: Mar 1995 falling, unable to run; May 1997 speech
What bothers you the most in regards to functions or abilities you have lost? The ability to speak clearly
Are you participating in the NWU study? No, I have no sisters or brothers and both parents are deceased
Are you participating in the NIH study? No, I didn't hear of it until it was closed
Do you have any family members, living or deceased, with neurological disease? No
Is there anything you attribute to your onset of PLS? No
Family, household, hobbies info: I spend the majority of my time continuing to work and learning my trade which is computer graphic and digital
photography.
Employment info: I worked for three years after my dx. I retired this August because I was
no longer able to do my job in a timely manner and was unable to participate
in meetings and travel. I applied for SS and Disability. Neither
has come
through yet.
Household chores, daily living info: I do as much as possible, the laundry and meals. I have had outside cleaning service for a number of
years.
What new activities or interests have opened up to you because of your disability? So far I'm able to fill my days with my interest on the computer and digital
photography. I have read a few books that I never had time for. I have to admit I spend some
time in front of the TV; I enjoy a good movie now and then.
Additional Comments: My abilities and talents are available for the asking and I truly enjoy being of help to the PLS community.
Where do you live?
South
Lake Havasu City, Ariz.
Your Email Address: dixsign@earthlink.net
Share this data? Yes
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Dutton, Susan (Susieq)
Gender: Female
Date of Birth: 07/01/1939
Diagnosis: PLS confirmed in 12/2005
by Rajiv Pathak, M.D.
Has your diagnosis been confirmed by a 2nd
neurologist or clinic? Yes, by Dr Layzer, UCSF
Were you misdiagnosed prior to PLS dx?
Yes, thought it was a stroke
How long did it
take you to get a diagnosis? Four and half years
Symptoms: 06/1999 speech; 11/99
falling – left side at first, and fatigue; 02/2003 muscle cramps (had been
going on for some time; 04/2003 anxiety and depression from falling so
much; 04/2003 foot drag; 02/2003 by this time I was having all of it -
spasms, startle reflex, uncontrollable laughing, crying, yawning, etc.
Treatment or Aids you
use:
2003 quinine, Celexa; Tizanidine; 2004 Provigil, cane – then
walker. (Stopped taking the quinine and Tizanidine because didn’t see
enough benefit compared to side effects).
What bothers you
the most in regards to functions or abilities you have lost?
Not
being physically active, my speech, not being able to do the simplest things
w/o a struggle
Are you participating in the NWU or NIH study?
Yes I’m in the NWU – don’t know anything about the other.
Any family member (living or deceased) with a
similar neurological disease?
Yes, my sister has MS
Is there anything you attribute to your onset
of PLS? No
Family, household, hobbies info:
Married; three grown children; reading, computer, bridge
Employment info: Not working.
Household chores, daily living info: Hire someone to come in and clean twice a month. Husband does the
laundry and most of the cooking. I do not drive anymore.
What new activities or interests have opened up
to you? Joined less
physically active groups (use to golf, dance and hike). Now I go to
Newcomer's luncheon, Red Hat activities, and play bridge (played bridge
before though).
Where do you live?
Placerville, Calif.
Share this data?
Yes
Email
Address:
susieq2828@yahoo.com
Submitted:
Oct 27, 2005
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Elder, Chuck
Gender: Male
Date of Birth: Mar 30, 1963
Diagnosis: PLS confirmed Dec 2001 by Dr Jonathan Glass, Emory
Has your dx been confirmed by a second neurologist/clinic? Yes
Where you misdiagnosed prior to getting a PLS dx? Yes, ALS
How long did it take you to get a diagnosis? One and one-half years
Symptoms: Jan 2000 foot drag, right side; 2001 arm/hand; 2002
fatigue and spasticity
Other Symptoms: 2002 fasciculations
Treatment or Aids you use: 2001 oral Baclofen, Rilutek, Provigil,
Zanaflex, Welbutrin; 2002 Baclofen Pump, cane as needed
What bothers you the most in regards to functions or abilities you have lost? Fatigue, not able to be active. Falling down (its not pretty to watch)
Are you participating in the NWU or NIH study?
No
Do you have any blood relatives (living or
deceased) with a similar neurological disease? No
Is there anything you attribute to your onset of PLS? No
Family, household, hobbies info: Three children: son Cary 12, daughter Katie 8, and son Collin 7. Was an avid
golfer (4 days a week at least). Coached all my children’s sports. Involved
in community and school activities
Employment info: Currently working - Industrial Packaging sales. I will file for disability
with my company's carrier this week (2/4/03)
Household chores, daily living info: I still do most things for myself, although I over do it
allot. I cook and help with the kids. I still drive without any problems.
What new activities or interests have opened up to you because of your
disabilities? I’m getting more involved with my children and their activities.
Where do you live? Atlanta, Ga
Share this data? Yes
Email Address:
celder4@bellsouth.net
Submitted: 02/2003
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Emanuel, Joe
Gender: Male
Date of Birth: Mar 09, 1969
Diagnosis: PLS confirmed Jul 2003 at the Cleveland Clinic by Dr. Brian
Tsao. Rediagnosed as Krabbe's disease 2/2004
Has your dx been confirmed by a second neurologist/clinic?
No
Where you misdiagnosed prior to getting a PLS dx? Yes, HSP
Symptoms: 1986 foot drag, both sides; 1987 peculiar gait; arm/hand,
approx; 2002 spasticity
Treatment or Aids you use: 2002 Tizanidine (Zanaflex)
Are you participating in the NWU or NIH study?
No
Do you have any blood relatives (living or deceased) with a similar
neurological disease? No
Is there anything you attribute to your onset of PLS? No
Where do you
live? Hayesville, Ohio
Share this
data? Yes
Email Address: jemanuel@zoominternet.net
Submitted: 05/2003 updated 2/2004
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Erratt, Marilyn (Jan) Gender:
Female Date of Birth: May 30, 1930
Diagnosis: PLS confirmed Sep 2000 by Neuro @ Mayo Clinic,
Scottsdale, Ariz.
Has your dx been confirmed by a second neurologist/clinic? No
Where you misdiagnosed prior to getting a PLS dx? Yes
How long did it take you to get a diagnosis? Three plus years
Symptoms: 1997 arm/hand, right side, tennis serve ball toss; 1998 foot drag on right side; 2001 falling, broke hip, unable to walk, needed walker and assistance, speech; May 2002 falling, broke other hip, extended rehab; Oct 2002
unable to walk, requires wheel chair and assisted transfer
What bothers you the most in regards to functions or abilities you have lost? Communication,
mobility - total inactivity for a VERY active person - tennis, hunt, fly fishing, etc.
Are you participating in the NWU study? Yes Are you participating
in the NIH study? No
Do you have any blood relatives (living or deceased) with a similar neurological disease?
Yes, sister died with Alzheimer’s.
Is there anything you attribute to your onset of PLS? No
Family, household, hobbies info: See above + volunteer with local senior service center.
Employment info: Housewife, unable to do any housework, book keeping, etc.
Household chores, daily living info: Help 3 mornings a week mainly for shower, female stuff, etc - spouse does
every thing else.
Where do you
live? Sanford [Midland], Mich.
Share this data?
Yes
Email Address: rerratt@aol.com
Submitted: 12/2002
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Everhart, Frank
Gender: Male
Date of Birth: Jul 11, 1948
Diagnosis: PLS confirmed Oct 2002 by Dr. Mathews
VA Medical Center, Dayton, OH
Has your dx been confirmed by a second neurologist/clinic? No
Where you misdiagnosed prior to getting a PLS dx? Yes, MS, HSP, ALS, HSP
How long did it take you to get a diagnosis? Four years
Symptoms: 1996 peculiar gait, left side; 1997 peculiar gait,
both sides, getting
a little worse; 1998 feet hurting at angles bad, foot drag, both sides, just enough
to make you think you trip on something, ankle clonus started on right side, could not tap my foot
very fast; 1999 falling
Other Symptoms: 1999 legs got very spastic, startle reflex; 2000 uncontrolled laughing, speech started to slow down,
having bladder and bowel problems.
Treatment or Aids you use: 1999 went on one cane, was taking oral Baclofen; 2000 off Baclofen started Zanaflex, went on
two canes, Diazepam, started using a scooter, Zoloft, got AFO's; 2001 off Zanaflex back on Baclofen; 2002 put on Klonopin
What bothers you the most in regards to functions or abilities you have
lost? The use of my legs and the control of my bladder and bowel and my breathing.
Are you participating in the NWU or NIH study? No
Do you have any blood relatives (living or deceased) with a similar
neurological disease? No
Is there anything you attribute to your onset of PLS? Yes, stress and trauma
Family, household, hobbies info: Hobbies: Building miniature log cabins to
scale
Employment info: Worked in Retail lumber for 31 years, 25 of those in management. In Sept. of 2000 I had to retire due to my
condition. Applied for SSDI in Nov. of 2000 and had no trouble getting it.
Household chores, daily living info: My wife and daughter do about all the things around the house that I used to
do. I still drive but w/ hand controls.
What new activities or interests have opened up to you because of your
disabilities? None as of this time.
Additional Comments? This condition has turned my life upside down, but I thank god every
morning for letting me have another day. Even in my worst day, I always see someone worse. Then I
wonder why am I complaining.
Where do you live? Hillsboro, Ohio
Share this data? Yes
Email Address:
ww1788@dragonbbs.com Submitted: 01/2003
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Flanagan, John Gender:
Male Date of Birth: Nov 23, 1950
Diagnosis: PLS confirmed 1999 at U of M Neurology Clinic
Has your dx been confirmed by a second neurologist/clinic? No
Where you misdiagnosed prior to getting a PLS dx? Yes, M.S., then
Spastic Paraparesis
How long did it take you to get a diagnosis? Four years
Symptoms: 1996 peculiar gait (right side), foot drag, falling, fatigue,
arm/hand, spasticity, swallowing, and breathing
Other Symptoms: Spasms, fasciculations, startle reflex, uncontrollable laughing & crying.
Treatment or Aids you use: Atenelol 1 tab 2 x per day 50mg,
Omeprazole (prilosec) 1 cap per day 20mg, Baclofen 2 tab 4 x per day 10mg,
Oxybutynin 1 tab 4x per day 5mg, cozaar 1 tab per day 100mg, Zoloft 1 tab
m,w,f 1/2 tab t,t,s,s, 25 mg, Dantrium 2 cap. 3 x per day 25mg, 2003 Botox
injections in bladder, Impramine HCL 1tab 2x per day 10 mg, wheelchair full
time
What bothers you the most in regards to functions or abilities you have
lost? Loss of speech and bladder spasms
Are you participating in the NWU or NIH study? No
Do you have any blood relatives (living or deceased) with a similar
neurological disease? No
Is there anything you attribute to your onset of PLS? No
Family, household, hobbies info: Married 26 years, 5 kids and 4
grandkids. Wife, Shirley, is caregiver
Employment info: Yes, still work full time from home doing
computer work for company that I have been with for 30 years.
Household chores, daily living info: Spouse performs all duties
but looking to get help soon with personal care
What new activities or interests have opened up to you because of your
disabilities? None
Where do you live? New Boston, Mich.
Share this data? Yes
Email Address: grammyflanagan@aol.com
Submitted: 03/2003
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Flory, Judith
Gender: Female
Date of Birth: Dec 20, 1943
Diagnosis: PLS suspected Oct 2002 at the Cleveland Clinic
Has your dx been confirmed by a second neurologist/clinic? No
Where you misdiagnosed prior to getting a PLS dx? Yes
How long did it take you to get a diagnosis? Three years
Symptoms: Aug 1999 foot drag, right side; May 2000 falling; Oct 2000
peculiar gait
Other Symptoms: Sept 2001 spasms, 2002 startle reflex
Treatment or Aids you use: 2001 Baclofen, 2001 AFO, 2002 cane and walker, 2002
antidepressant drug
What bothers you the most in regards to functions or abilities you have lost? Unable to travel and
participate activities that my husband and I love to do, my job
Are you participating in the NWU or NIH study? No
Do you have any blood relatives (living or deceased) with a similar neurological disease? No
Is there anything you attribute to your onset of PLS? Yes, only trauma around ten years ago was
head injury on forehead
Family, household, hobbies info: My husband and I have two children...one in Utah and one in
Ga. Hobbies that I enjoyed were golfing and traveling. I love to play
bridge, knit, read and becoming a computer addict!
Employment info: I stopped working as a registered nurse in March 2001. I worked in the Cardiac
Cath Lab. I can no longer walk without assistance. Also I was an organist
for forty years but cannot use my legs to play so I retired from that job in
spring 2002. I applied for SSDI and was awarded disability on the first try
and was paid retro pay.
Household chores, daily living info: I do very little around the house. I can clean about one room
or two and that is it. I rehired my cleaning lady to help out a few hours
every other week. My husband will do anything I ask him but he has enough to
keep our property and our rental property in good condition. I still drive
and just bought a minivan to help me get in and out easier.
What new activities or interests have opened up to
you because of your disabilities? So far I have
found shopping on the Internet has been a lifesaver for Christmas. Now that
my husband is retired he can go with me if I need to go somewhere as I go
very few places by myself. I have started knitting again, which I haven't
done in years due to busy schedule working. I did a lot of work on our high
school reunion through locating people on the computer.
Additional Comments? We
are making the decision whether to move to Fla. or not. We know that we can no
longer live in this house where I grew up due to the steps and the amount of
yard work involved here. Leaving for Fla. in January till April and this will
be our third trip to see if we can find that special place.
Where do you
live? Ft. Thomas, Ky.
Share this
data? Yes
Email Address: putters2@fuse.net
Submitted: 12/2002
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Forcelli, Joan
Gender: Female Date of Birth: Sep 26, 1944
Diagnosis: PLS confirmed Nov 2001 at the National Institute of Health, Bethesda Md.
Has your dx been confirmed by a second neurologist/clinic? No
Where you misdiagnosed prior to getting a PLS dx? Yes, they thought it was MS
How long did it take you to get a diagnosis? Two years
Symptoms: Jul 1999 falling, both sides, Vertigo - unbalanced; Aug 1999 arm, left side;
Jan 2000 spasticity, left side, cold weather effects this more; Jun 2000 foot drag, left side; Sep 2000 fatigue;
Sep 2001 speech; Oct 2002 swallowing and breathing.
Other Symptoms: Sep 2001 uncontrollable crying ~ depressed
Treatment or Aids you use: 2000 started
using cane, Baclofen pills - stopped pills; 2001 started using walker,
no medications - no pills worked
What bothers you the most in regards to functions or abilities you have
lost? Everything bothers me now - I lost all the activities I took for granted.
Are you participating in the NWU or NIH study? Yes, both. I saw Dr. Floeter at NIH - 12/18/01~
and had full testing by her.
Do you have any blood relatives (living or deceased) with a similar
neurological disease? No
Is there anything you attribute to your onset of PLS? No
Family, household, hobbies info: None
Employment info: As of 2/14/2002 I was let
go from my job and went on unemployment. I was a salesperson for hospital
home care supplies; I was in this type of business for 20 years. PLS - I do
believe caused me to lose my job. I have now applied for SSDI as of 12/2002
Household chores, daily living info: I live alone
and I do all my chores with the aid of my walker. I still drive to the
stores to do shopping. I just find that I have to do everything slower, but
I like being independent. I do not have outside help at this time.
What new activities or interests have opened up to you because of your
disabilities? I must say I spend too much
time on my computer now. When the warmer weather comes I will be going to
physical therapy 3 times a week.
Where do you
live? Ossining, N.Y.
Share this data? Yes
Email Address: JoanForcelli@msn.com
Submitted: 02/2003
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Gentner, Linda
Gender: Female
Date of Birth: Feb 08, 1945
Diagnosis: PLS confirmed Dec 1997 by Dr. Anthony Windebank/Mayo Clinic, Rochester
How long did it take for you to get a diagnosis? Four years
Has you diagnosis been confirmed by a 2nd neurologist? Yes
Were you misdiagnosed prior to the PLS dx? No
Symptoms: June 1993 speech, also tingling in upper lip when speaking; June 1998 peculiar gait, wider
stance, pull to left when walking; June 1998 falling, lost balance--I've only fallen a few times; June 1999 peculiar
gait, have difficulty with stairs esp. going down; June 1999 arm/hand, both sides, mainly just a lot slower
Other symptoms: June 1998 exaggerated startle reflex--tossed food/drinks many times when phone rings or dogs
bark; June 1998 uncontrollable laughing or crying--not seriously enough to |
