Inman, Mollie
Gender: Female Date of Birth: 10/21/1950
Diagnosis: PLS confirmed in 10/2005 by Dr. Daragh Heitzman, TX. Neurology in Dallas
Has your diagnosis been confirmed by a 2nd neurologist or clinic? Yes
Were you misdiagnosed prior to PLS dx? Yes, possible myasthenia gravis
How long did it take you to get a diagnosis? One year
Symptoms: 05/2004 speech - inability to say "eligibility" clearly; 06/2004 foot drag -
controllable if I concentrated when I walked; 06/2004 falling, like my "center of gravity" was off;
09/2004 startle reflex, spasms, muscle twitching; 03/2005 spasticity.
Treatment or Aids you use: 10/2005 Baclofen, 10 mg 3X daily
What bothers you the most in regards to lost functions or abilities? I have a
very difficult time talking and cannot use the phone.
Are you participating in the NWU or NIH study? No
Any family member (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: My husband and I have a son and daughter-in-law living in
New York City, and a son living in North Carolina who will be married in May 2006. We love being
outdoors and traveling.
Employment info: I quit working when we moved to South Padre in July 2005. I was a
stay-at-home mom for 20 years and had worked only 4 years prior to our move.
Household chores, daily living info: We are living in a small condo and I am able to keep it clean.
I don't do much cooking due to fatigue and my husband must take care of any daily business
that has to be done by phone. I still drive.
What new activities or interests have opened up to you? I use the
computer much more than I did before the disease.
Address: South Padre Island, TX
Share my data: Yes
Email Address: meloneinma@aol.com
Submitted: January 02, 2006
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Isenhour, Donna
Gender: Female
Date of Birth: Oct 14, 1947
Diagnosis: PLS suspected in May 2002 at Johns Hopkins
Has your dx been confirmed by a second neurologist/clinic? Yes
Where you misdiagnosed prior to getting a PLS dx?
Yes, ALS then MS
How long did it take you to get a diagnosis? Two years
Symptoms: Aug 1999 foot drag, left side, plus slurred speech; Jan
2001 swallowing, breathing; Jul 2002
falling and weak arm
Other Symptoms: Mar 2001 fasciculations; Sep 2001 uncontrollable laughing and crying; Jun 2002
cramps and spasms in foot
Treatment or Aids you use: 2002 baclofen tablet, celebrex
What bothers you the most in regards to functions
or abilities you have lost? Speech
Are you participating
in the NWU or the NIH study? Yes, both.
Do you have any blood relatives (living or
deceased) with a similar neurological disease? No,
but Grandmother had Alzheimer's and ex-husband has PSP.
Is there anything you attribute to your onset of
PLS? Yes, stress
Family, household, hobbies info: I have two wonderful children, and three and 1/2 adorable
grandchildren. The 1/2 one will be here Jan. 2003.
Employment info: I was a Medical Laboratory Technician. I worked in a hospital and an Urgent
Care Center. My work hours were long and became overwhelming to me, so I
quit two years ago. I recently applied for disability.
Household chores, daily living info:
I have a cleaning lady that comes once a week. I do the cooking and
laundry. I also take care of my mother. Grocery day is very tiring for
me. After I carry my mother's groceries in, I come home and carry ours in.
7/19/2004 update: I can still
cook, but it is painful to stand that long. I hyperextend my knees and my
lower back hurts. I can also do the laundry, but my balance is not good so I
don't know how long that will last. I have a lady who cleans for me and my
husband is a big help to me now. I am still able to drive and I am very
thankful for that.
What new activities or interests have opened up to
you because of your disabilities? I have started
exercising and eating better. I have met great friends on the PLS board
too.
Additional Comments? I want to thank everybody who works so hard to
destroy this disease. I want to thank Mark for the PLS site, and everyone
who raises money for fund. Thanks to everyone who work for us. I'm in a wheel chair except
for when I cook or do laundry. My left hand is beginning to curl and it's
hard for me to release things. I am still able to do the bookkeeping for our
business.
Where do you live? Conover, NC USA Share this data? Yes
Email Address:
surfing@twave.net Updated:
07/2004
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Jagan
Gender: Male
Date of Birth: Jul 06, 1937
Diagnosis: PLS confirmed in Dec 1991 at
Bangalore, India
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 years
Symptoms: Sep 1988 peculiar gait; May 1989 falling; Sep 1989 spasticity;
May 1990 unable to walk; May 1993 speech; Sep 1989 arm/hand
Other Symptoms: Dec 1990 uncontrollable
laughing, reduced with passage of years; Dec 1991 startle reflex, reduced
with passage of years
Treatment or Aids you use: 1991 four wheel
walker, 1996, Co-Enz Q-10 100mg/day; 1992 Ativan 1mg/day; 1996 Selenium
100 cgm/day; 1997 beta-carotene 6mg/day; 1997 vit E 400mg/day; 1996 vit C
500mg/day
What bothers you the most in regards to functions or abilities you have
lost? Inability to speak clearly
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, none
Employment info: Retired in 1995 - was a finance
manager
Household chores, daily living info: My spouse
does most of the duties that I used to do.
What new activities or interests have opened up to you because of your
disabilities? Thoughts!
Where do you live? India
Email Address:
cjagan@wilnetonline.net Share this data?
Yes
Submitted: 02/2003
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Jenson, Barbara
Gender: Female
Date of Birth: Mar 22, 1954
Diagnosis: PLS confirmed in Mar 2003 by Dr. Hui-Juan Zhang
Has your dx been confirmed by a second neurologist/clinic? No
Where you misdiagnosed prior to getting a PLS dx? Yes,
fibromyalgia
How long did it take you to get a diagnosis? Four years
Symptoms: Jun 1991 arm/hand (both sides), falling, fatigue; Sep 2000
peculiar gait
Treatment or Aids you use: 2003 Requip (ropinirole HCI)
What bothers you the most in regards to functions or abilities you have
lost? I really looked forward to doing things with my kids when
they were younger.
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, no family history.
Is there anything you attribute to your onset of PLS? Yes, was in
an abusive marriage. Was born with spina bifida?
Family, household, hobbies info: I have two daughters, Krysti
(21), and Bethany (18). I make and sell an all-natural lotion and glass-bead necklaces. Involved in church activities.
Employment info: I worked the last two tax seasons at H&R Block.
Before that, I was a senior secretary at the Hanford Nuclear Reservation. Was laid off due to lack of funding in March 1998. PLS got worse after I was
laid off. In January 2000 I applied for SSDI. SS sent me to their doctor in
April 2000. Was approved in July 2000. I really need to be employable very
soon. In June, my youngest daughter will graduate high school. This means
her SS and child support will disappear, which is half my income.
Household chores, daily living info: House is a pit. I can't
do chores, and girls do as little as possible. No outside help - wouldn't
want anyone to see mess, and no money to hire anyone. I have been divorced
since 1989. Yes, I drive (but don't ask my kids for their opinion on my
driving skills!). I do okay within a 50 mile radius of our area, but only
when I am on meds.
What new activities or interests have opened up to you because of your
disabilities? Lotions & potions and glass-bead necklaces.
Where do you live? Richland, Wash. USA
Email Address:
ravensara@owt.com
Share my data: Yes Submitted: 04/2003
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Johnson,
Steven Gender: Male
Date of Birth: 12/31/57
Diagnosis: No diagnosis yet. I have been seeing Dr Greg Carter at the MDA clinic, Olympia
Wash.
Has your diagnosis been confirmed by a 2nd neurologist or clinic? Yes
Were you misdiagnosed prior to PLS diagnosis? Yes
Symptoms: Apr 2006 fasciculations left eye muscle, only lasted 2-3 weeks,
fasciculations all
over, more left side (arm/leg, hip, chest, shoulder); May and Aug 2006 still with above, now clumsy, occasional
light choking - evaluation showed weak cranial nerves.
Treatments or Aids you use: None
What bothers you the most in regards to lost functions or abilities?
Peace of mind, fear, worry - no known cause of fasciculations and cranial
nerve deficit on swallowing.
Are you participating in the NWU or NIH studies? No
Do you have a family member (living or deceased) with a similar neurological disease?
Yes, on mother's side aunt has Parkinson’s and cousin has MS.
Is there anything you attribute to your onset of PLS? No
Family, household, and hobbies info Work on cars, outdoors, active person
Employment info: Yes, work in hospital processing surgery instruments.
Household chores and daily living info: Do them myself.
What new activities or interests have opened up to you? None - currently not disabled, hoping not to
be.
Additional Comments: Most frustrating is to see symptoms begin and evolve but yet not be bad
enough to fully diagnose, but my docs still cannot rule out ALS, nor figure out what is going on. Thought it
was benign fasciculation syndrome but then swallow/throat symptoms and clumsiness started.
Address: Tacoma, Wash.
Share my data: Yes
Email Address:
steve.johnson@multicare.org
Submitted: 9/28/06
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Jones, Thomas Gender:
Male
Date of Birth: Jan 03, 1954
Diagnosis: PLS confirmed by Dr. Sharon Nations, UT Southwestern Med.
Center
How long did it take you to get a diagnosis? Five years
Has your dx been confirmed by a second neurologist/clinic? Yes
Were you misdiagnosed prior to getting a PLS dx? Yes, primary
progressive multiple sclerosis
Symptoms:1994 peculiar gait on both sides; 1995 falling, both sides
and foot drag, right side; 1995 spasticity on both sides; 1997 arm/hand on
both sides; 1998 swallowing, breathing; 1999 speech.
Other Symptoms: 1997 startle reflex, inappropriate laughing, crying;
1996 cognitive problem solving difficulties like saving a file on the
computer, or gauging lengths; 1998 personality changes, some drooling on
right side of mouth, eyesight failing.
Treatment or Aids you use: 1996 regular cane; 1997 three pronged cane;
1998 walker with wheels, brakes; 1998 scooter; 2000 wheelchair (and walker)
What bothers you the most in regards to functions or abilities you have
lost?
I'm losing my ability to speak
Are you participating in the NWU or NIH study? I'm in the
NIH study but not the NWU.
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, possibly
pesticides used in large quantities?
Family, household, hobbies info: Wife and 18-year-old daughter. We
have a toy poodle. I have applied for a guide dog. Enjoy raking leaves, "working" in the yard, watching TV and playing dominoes.
Employment info: No longer working. Used to do media relations,
prior to that a journalist. SSDI applied for and received in 1996.
Household chores, daily living info: Use an electric razor to shave.
Use grab bars in house, especially the bathroom. Use a grab bar on the
side of bed to assist in turning over. Keep sharp corners covered with
bubble wrap in case of falls. Wife has done the driving since 1996. Use
shirts that don't need to be buttoned a lot. Use high-edged bowls and eat
slowly.
What new activities or interests have opened up to you because of your
disabilities?
Reading with large print books and planting flowers
Additional Comments? Originally from Miami, Fla. Like the beach
very much and miss it here in Dallas.
Where do you live? Dallas, Tex, USA
Email Address:
pathfnd1@ix.netcom.com
Share my data: Yes
Return to Index |
Karwas, Ruth
Gender: Female
Date of Birth: Aug 02, 1927
Diagnosis: PLS confirmed 2002 by David A. Weidman, M.D. neurologist
Has your dx been confirmed by a second neurologist/clinic? No
Where you misdiagnosed prior to getting a PLS dx? Yes, compressed
spine
How long did it take you to get a diagnosis? One year
Symptoms: 2000 foot drag on left side; peculiar gait
Other Symptoms: 2003 spasms, startle reflex, fatigue; 2004
fasciculations
Treatment or Aids you use: 2002 cane, walker, rollator
What bothers you the most in regards to functions or abilities you have
lost? Not walking
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: My husband of 55 years is taking
care of me. Have three children that also give us lots of support.
Employment info: I was a secretary. Retired in 1982 from General
Motors.
Household chores, daily living info: Husband performs household
duties. Yes, I can still drive. However, don't do much because can't walk
without help when I get to the destination.
Where do you live? Waterford, Mich. U.S.A.
Share this data? Yes
Email Address:
karwasaz@aol.com
Submitted: 04/2004
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Keesee, Melissa
Gender: Female
Date of Birth: Aug 7, 1959
Diagnosis: PLS confirmed in Jan 2002 by Dr. Staci Rudniki
Has your dx been confirmed by a second neurologist/clinic? Yes
Where you misdiagnosed prior to getting a PLS dx? Yes, fibromyalgia
and
bad knees
How long did it take you to get a diagnosis? Years
Symptoms: 1989 fatigue; 1995 arm/hand; 1999 falling; 2000,foot drag and
spasticity; 2001 peculiar gait, swallowing, and breathing
Other Symptoms: 2001 slow and slurred speech; 1996 cramps in legs and
hands, 2000 hoarseness.
Treatment or Aids you use: 2002 Oral Baclofen
What bothers you the most in regards to functions or abilities you have
lost? Inability to walk safely or to talk normal.
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: Husband: David. Children: Mendi 30,
Kendall 18 and Jared 13.
Hobbies: Used to include all athletic ventures. Now I read more and play on
computer.
Employment info: I am a
minister to youth and families. PLS affects my work and I will not be able
to continue much longer. I only continue now as the church hired me an
assistant and parents of youth pitch in. Over and over the docs have
recommended a cane and walker but I remain stubborn, as a youth minister
with a walker just isn't very cool. :-)
Household chores, daily living info: My
husband David pitches in to help with the major housekeeping needs and
running of errands. I cook some and do the lighter cleaning. I still
attend children's activities but watch from car or do my best to get in and
out as inconspicuously as possible. My son Jared makes numerous trips up
and down our stairs or around house or in and out of stores to help me out.
What new activities or interests have opened up to you because of your
disabilities? New activities: none. Interests: I seek
out info on walking aids, PLS news, shop for a single level home, etc.
Additional Comments? I despise
this disease. I hate how it does and will affect my family. I also am
learning new things about others and myself. I keep a good attitude. My
character is being chiseled for the better. I have lots of joy.
Where do you live? Malvern, Ark. USA Share my data: Yes
Email Address:
melissakz@yahoo.com
Submitted:: 12/2002
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Kelly, Linda
Gender: Female Date
of Birth: August 26, 1947
Diagnosis: PLS confirmed in January 2005 by Dr. K. Roberts
Has your diagnosis been confirmed by a 2nd neurologist or clinic? Yes, by
Dr. Rowland
Were you misdiagnosed prior to PLS diagnoses? Yes
How long did it take you to get a diagnosis? Two years
Symptoms: Oct. 2002 right foot was dragging and I was falling; 2003
spasticity on both sides and speech was hoarse when I was tired; 2004
peculiar gait on right side; 2005
spasms, sandiness, tearing, reflex when surprised, twitching.
Date of Treatment or Aids you use: 2005 I
took baclofen 10 mg – now I take 90 mg
What bothers you the most in regards to lost functions or abilities? My
steadiness, had more energy before. Feel lost at times. Seems time has
stopped.
Are you participating in the NWU or NIH study? No
Any family (living or deceased) with a similar neurological disease? Yes,
great-grandmother died in 1942 of ALS. Two relatives have Parkinson
disease.
Is there anything you attribute to your onset of PLS? Yes,
stress - youngest daughter injured as a young teen
Family, household, and hobbies info: I have four children, a husband, and a
dog (Airedale). Two of the children are
married - one expecting a baby in fall. Two are in college. I use to quilt
and knit all the time but now hard to use hands sometimes. I like to garden
- see things grow
Employment info: Retiring
- taught preschool for 20 years before that a secretary. PLS has made me
lose my edge - had to walk around the classroom had to use hands for
crafts very stressful when children cannot hear me due to the hoarseness in
voice.
Household chores, daily living info: I still drive - but only in
daytime. Household chores difficult with cooking take longer to do
things. More tired. Spouse helps a lot - looking to hire house
cleaner but cannot afford the expense.
What
new activities or interests have opened up to you? Book
club; reacquainted with neighbors and friends. Dooo not take anything for
granted.
Additional Comments? I wish
there was a cure or relief of symptoms - my youngest son went to Germany and
I could not visit due to the long plane ride, stiffness in legs and walking.
- I really missed out!
Address: Scotch Plains, NJ, Share my data: Yes
Email Address: Lindaschuyler@Yahoo.com
Submitted: April 2006
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Kennedy, Connie
Gender: Female
Date of Birth: Mar 13
Diagnosis: PLS confirmed in 2002 by Dr Neil Holland
Has your dx been confirmed by a second neurologist/clinic? No
Where you misdiagnosed prior to getting a PLS dx? Not sure of
dates
How long did it take you to get a diagnosis? About 3 years
Symptoms: Jun 1999 peculiar gait on left side; Jan 2001 foot drag
Other Symptoms: Fasciculations
What bothers you the most in regards to functions or abilities you have
lost? Was always going, going, going. Not any longer but
keep trying
Are you participating in the NWU study? Yes, I'm waiting for
the "kit"
Are you participating in the NIH study? No, but would be interested
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
Employment info: Retired
Household chores, daily living info: I have my daughter living with
me.
What new activities or interests have opened up to you because of your
disabilities? Talking to PLS-Friends on computer. I feel as
if I have made a new world of friends.
Where do you live? Toms River, N.J. USA
Email Address: CONNEDY@AOL.COM
Share this data? Yes
Submitted: 07/2003
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King, Jane Anne
Gender: Female
Date of Birth: Jan 1939
Diagnosis: PLS confirmed in May 1999 by Dr. Meschia
at the Mayo Clinic
Has your dx been confirmed by a second neurologist/clinic? No
Were you misdiagnosed prior to getting a PLS dx? Yes,
fibromyalgia
How long did it take you to get a diagnosis?
1996-1999
Symptoms: Aug 1996 falling, right side, loss of balance; 1997 spasticity
on
right side, numbness in foot and leg; 1998 peculiar gait, right side - like the tin man from the wizard of
oz; 1999 foot drag on right side but not all the time.
Treatment or Aids you use: 1997 used cane and Synthroid; 1999 used
a walker and wheel
chair and Flexeril; 2001 use NADH and Vitamin E.
What bothers you the most in regards to functions or abilities you have
lost? Horse back riding, dancing, golf, driving car, work in yard, etc.
Are you participating in the NWU study? Yes, have
not heard from her yet.
Are you participating in the NIH study? No, did
that last year.
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: I live with my
husband Gary. We have two grown children. Timothey is 36 and Missy 30. My
cat, 6 years old, and a new puppy, 5 months old. My hobbies were working in
my flowers, driving my car, horse back riding, golf, tennis, bowling, etc.
Employment info: NO, I do not work. Yes I have
applied for SSDI.
Household chores, daily living info: My husband
does most of the house work. I do the cooking because I love to cook but
Gary has to get out every thing I need to prepare the meal. I do not drive
now. I ride my stationary bike, treadmill, pool aerobics, stretch my leg and
arms.
What new activities or interests have opened up to you because of your
disabilities? Computer, working puzzles, and
loving my cat and dog.
Additional Comments? I had to go to 14 different
doctors before my DX. I had so many test run over and over. Some of my best
friends thought I had this all in my head and needed to see another doctor.
Where do you live? Thomasville, Ga., USA Share my data: Yes
Email Address:
gking@rose.net
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Kirk, Alan
Gender: Male
Date of Birth: Apr 14, 1959
Diagnosis: PLS confirmed in Aug 1999 by Dr. Alan Ropper, St Elizabeth's,
Brighton, MA
Has your dx been confirmed by a second neurologist/clinic? No
Where you misdiagnosed prior to getting a PLS dx? Yes, Lupus.
How long did it take you to get a diagnosis? Four years.
Symptoms: Sep 1995 peculiar gait (right side), foot drag on both sides,
arm/hand on both sides, speech.
Other Symptoms: Leg spasms at night, spastic
(tight) bladder, fasciculations on face.
Treatment or Aids you use: 1998 oral baclofen,
2000 cane and AFOs, 2001 power chair for work, 2002 walker, pump, power chair
at home.
What bothers you the most in regards to functions or abilities you have
lost? Walking, coordination of 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
Is there anything you attribute to your onset of PLS? No,
bad luck? Or spinal meningitis at age 4.
Family, household, hobbies info: Daughter born 8/1990
Employment info: Out on disability 12/2/2002
Household chores, daily living info: Spouse takes
care of chores. Looking to hire someone. I still drive (cautiously) using
feet.
What new activities or interests have opened up to you because of your
disabilities? None yet.
Where do you live? Simsbury, Conn. Share my data: Yes
Email Address:
alan.kirk1@atbi.com ;
Submitted: 12/2002
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Lachapelle, Jennifer
Gender: Female
Date of Birth: April 21, 1958
Diagnosis: PLS confirmed
in Oct 2000 by Dr. Nelson, MS Clinic, Ottawa General Hospital
Has your dx been confirmed by a second
neurologist/clinic? Yes
Were you misdiagnosed prior to getting a PLS dx?
No, a lot of uncertainty by Drs. before dx.
How long did it take you to get a diagnosis? Two and a half years
Symptoms: 1995
fatigue, I seemed to be constantly tired, no energy; Jul 1997
unable to walk, right side (one of 1st symptoms was inability to run); Jul 1997
falling, right side, noticed clonus (trembling) in right leg; Aug 1997
spasticity, right side, started tripping while out on daily walks; Aug 1997
peculiar gait, right side, difficulty going down hills, curbs, etc.; Jan 2000
speech seemed slurred a bit on phone; Mar
2001 swallowing, breathing. Some difficulty swallowing, too much saliva
Other Symptoms: Jun 2001
heightened startle reflex; Oct 2001 some uncontrollable laughing/crying,
usually in situations that are funny/sad to begin with; Oct 2001 some
difficulty eating, it's slower and I have a hard time with different
textures.
Treatment or Aids you use: 1997 cane for outdoor use; 1998 oral baclofen;
1998 dantrium; 1999 4-wheeled walker for outdoor use; 2000 stair glides
installed in home on 2 levels, unable to manage stairs; 2000 clonazepam, for
spasticity and depression; 2001 stopped dantrium use, kidney function
concerns; 2002 amitriptylene for laughing/crying.
What bothers you the most in regards to functions
or abilities you have lost? I was very physically
active prior to PLS and miss loss of that, miss being active with my kids.
Are
you participating in the NWU or NIH study? No, have no knowledge of 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? Yes, very high stress, fell twice fracturing
tailbone both times and pneumonia all just prior to onset.
Family, household, hobbies info: Single mom, two teens - daughter 19
and son 15, dog named QD
(part spaniel & border collie). Interests include computer, reading, church
functions, gardening a bit now, playing cards, am going to try para-sailing
this summer and possibly also assisted horseback riding.
Employment info: Am no
longer working as of February 2000. My first neurologist initially (1997)
insisted that I take a leave of absence until they knew what I was suffering
from (they first suspected perhaps brain tumor or stroke). I was off of
work for 9 mos. and returned on a part-time basis in 1998 for 1 1/2 yrs.
until local branch office was shut down. I was a marketing manager for a
land development/home builder. I now receive a combination of long-term
disability payments covered by my work insurance as well as Canada Pension
Plan, Disability Benefit.
Household chores, daily living info:
I do have outside help come in for 1 3/4 hr. per week, this is provided by a
provincial program for people with disabilities. This is mainly for cleaning
of bathroom, vacuuming, washing floors, anything that involves bending. I
do the remainder including laundry, meals, dishes, etc. with SOME assistance
from teens. I do continue to drive. Groceries are done with assistance.
What new activities or interests have opened up to
you because of your disabilities? More leisure
computer use, more time for church activities, reading. The possibility of
becoming involved in para-sailing and horseback riding this summer.
Additional Comments? The
lack of a diagnosis for so long was troubling as well as the lack of
information locally on PLS.
Where do you live? Ottawa, Ont. Canada
Email Address:
jenlach@hotmail.com
Share my data? Yes
Return to Index |
Lane, Marlis Gender: Female
Date of Birth: May 07, 1945
Diagnosis: PLS confirmed in Aug 2003 at the MDA/ALS Research Center, Barrows
Neurological Institute, Phoenix, Ariz.
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?
Five months
Symptoms: Mar 2003 peculiar gait on
left side; May 2003 falling and foot drag on left side; Jun 2003
spasticity on left side.
Other Symptoms: Muscle spasms, fasciculations, heightened startle
reflex, hyperreflexia, Babinski sign all ongoing.
Treatment or Aids you use:
2003 baclofen, started on 30 mg. now
take 90 mg.; 2004 ditropan XL for bladder control; 2003 In Dec. started
using a cane; 2004 use a Rollator almost exclusively since July.
What bothers you the most in regards to functions or abilities you have
lost? Not being able to do the simple things that I used to take for
granted, or go hiking.
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: My husband and I moved to Prescott
almost five years ago from Minn. We have three adult children and five grandkids
back in Minn. whom we see as often as we're able.
Employment info: We're both retired, having sold our business to
our son.
Household chores, daily living info: I still do all of my own
household work, with the help of my wonderful husband. He does the vacuuming
and sweeping and outside yard work, while I cook, do laundry, and light
housekeeping.
What new activities or interests have opened up to you because of your
disabilities? I haven't pursued any new interests. I still enjoy
counted cross-stitch, scrap-booking, and reading. I still am able to drive.
Where do you live? Prescott, Ariz. US Share my data? Yes
Email Address: deutsh45@aol.com
Submitted: 08/2004
Return to Index |
Lanning, Sharon
Gender:
Female Date of Birth: Nov 02, 1943
Diagnosis: PLS confirmed in 1993 at the Eisenhower Center, Mayo Clinic
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? Less than a year
Symptoms: Oct 1992 peculiar gait on both sides and spasticity - both sides
Treatment or Aids you use: 1993 baclofen, 2001 zanaflex, 2003
Botox injections.
What bothers you the most in regards to functions or abilities you have
lost? Not being able to walk like I would like to do.
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, a severe
fall from 17 to 20 feet in 1983
Family, household, hobbies info: Love to garden but can not get up
without pulling myself up on a fence of other structure.
Employment info: I am still working. I am a maintenance manager over
about 500 craft. I can not get out and inspect the job sites like I need to
do. I plan to keeping working (if possible) until 2010. I have not
applied for SSDI or anything else besides a handicap parking sticker.
Household chores, daily living info: I hire my grandson to help
with the yard work in the summers. I do everything else myself. I am no
longer married and utilize my vehicle as my "Legs" a great deal.
What new activities or interests have opened up to you because of your
disabilities? None
Where do you live? Los Alamos, N. Mex. USA Share my data? Yes
Email Address: lanning@lanl.gov
Submitted: 03/2004
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Leach, Teresa
Gender: Female
Date of Birth: 02/21/1949
Diagnosis: PLS confirmed in 09/24/2003 by Michael Epstein
Has your diagnosis been confirmed by a 2nd neurologist or clinic?: No
Were you misdiagnosed prior to PLS dx? No, it's of guesses, but
diagnosis withheld.
How long did it take you to get a diagnosis? Since 1995 - eight years
Symptoms: Jun 1996 peculiar gait, confused situation as to cause
post surgery, falling (left leg would go out from under me), left foot drag
and spasticity in legs and feet - both
sides; Oct 1998 fatigue; Feb 1999 speech, startle reflex with taking
baclofen, leg spasms continuous (5/2004 now starting in arms); Apr 2000 arm
and hand on both sides; Apr 2004
balance is completely gone except brief moments of standing.
Date of Treatment or Aids you use: 1996 cane; 1999 used baclofen
(stopped same year); 2003 walker and electric cart.
What bothers you the most in regards to lost functions or abilities?:
Loss of a very active lifestyle.
Are you participating in the NWU or the NIH study? No, parents deceased.
Any family (living or deceased) with a similar neurological disease? No
Is there anything you attribute to your onset of PLS? Yes, three
surgeries on left knee -specifically the failed high tibia osteotomy.
Family, household, hobbies info: I used to garden, have horses and
breed and show cavies (guinea pigs), none of which I can do anymore. Used to
cook and clean house - can't do that anymore. Used to drive and hold a job
- not anymore. I can't play with my young grandchildren or baby-sit. I do
watch a lot of TV -movies are my favorite. I manage to keep in touch with
friends via the internet. I do a lot of work on the computer including
editing the quarterly newsletter for the national cavy group.
Employment info: I was working for the City of Phoenix in the Water
Dept., Wastewater Division when I fell and injured my left knee. After the
first surgery, an abridgement, I had a high tibial osteotomy done that
basically left me crippled. Post- surgery is when my PLS symptoms first
appeared. It took almost 2 years to convince doctors (I saw 4 or 5) and
Workman's Comp that there was something terribly amiss. I then had a total
knee replacement. I do not qualify for SSDI but do receive Long Term
Disability from the City of Phoenix.
Household chores, daily living info: I can no longer take baths,
only showers. I take up to 40 minutes to dress (jeans and a t-shirt) and
brush my teeth. I can stand without holding onto something, but if I cough
or sneeze, I'd better have support there. I cannot walk without a walker. I
cannot do household chores any longer because I can't stand for long periods
of time and have little, if any, balance. My spouse cooks and albeit, he's
not a good housekeeper, does what needs to be done. I have not driven since
1999.
What new activities or interests have opened up to you?: Husband
and I have 3 Chihuahuas. We breed the 2 females once a year and have our
first show dog, handled by someone else. The Chihuahuas are small enough
they can jump in my lap for attention. Husband takes care of management
chores. Other than that, no new activities or interests.
Where do you live? New River, Ariz. US Share my data? Yes
Email Address:
kccavy@aol.com
Submitted: 10/22/2004
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Ledford, Sue Ellen
Gender: Female Date of Birth: Jun 26, 1947
Diagnosis: PLS suspected in Oct 1999 by Maria A. Palmer MD
Has your dx been confirmed by a second neurologist/clinic? Yes
Were you misdiagnosis prior to getting a PLS diagnosis? Yes, for
three years.
Symptoms: Jun 1996 peculiar gait on left side, stiffness in thigh
muscle when cold; Nov 1996 falling and progressing to right leg, foot drag on left side, progressing to right leg; Jun
1997 spasticity on both sides, weakness first, then spasticity; Sep 1997
fatigue; Jun 1999 arm/hand on both sides; Mar 2001 speech
Other Symptoms: Jan 2001 startle reflex, Jun 1999 emotional
liability, Mar 2000 fasciculations
Treatment or Aids you use: 1999 medications and supplements; 2000
cane; 2001 walker, bars, handheld shower, bath seat; 2002 wheelchair and
raised toilet seat.
What bothers you the most in regards to functions or abilities you have
lost? I lose touch with friends I worked with and can no longer enjoy
hobbies such as skiing and aerobic exercise
Are you participating in the NWU or the NIH study? Yes, both
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, toxic
stress in job
Family, household, hobbies info: Husband, dog and I live by ourselves in house, children
are grown. Enjoy reading, watching TV, using computer, working with plants
and cooking when I'm able to. Visit museums and galleries, go to movies and
go out to eat regularly so I can get out of house. Take naps almost daily.
Employment info: No. Had been a Purchasing Agent for 20 years. Job
very high pressure, lots of people to talk to every day by phone and in
person, deal with angry or tense people daily, lot of overtime work,
complicated negotiations requiring verbal and oral skill and ability to
juggle many projects at same time, walked 8 blocks each way to parking
daily. The tension caused me to cry on almost daily basis, extreme fatigue
was constant, fell a lot going to and from parking lot, messed up files
because of memory loss and anxiety, muscle spasms and pain kept me awake
frequently, had concussion, skull fracture, shoulder dislocation and face
stitched from falls. I retired 01/2002 and qualified for LTD and SSDI on first
try without problem.
Household chores, daily living info: Load and unload dishwasher, put
away dishes, some cooking but limited, mostly help spouse with meals such as
setting table, pouring drinks. Do laundry when spouse brings to laundry
room and takes it back, feed dog, water some of plants, make bed each day
and straighten up. Assist husband with grocery shopping, riding in store
electric cart. Housekeeper does most of cleaning. I used to take all care
of dog, grocery shopping by myself, all cleaning, painting, wallpapering,
minor repairs, yard work, but spouse does most of that now. I still drive,
but limit it to appts, short trips to post office, store as it is stressful
and sets off spasms in my legs and feet. Only drive if it will be less than
one hr.
What new activities or interests have opened up to you because of your
disabilities? I belong to an MDA support group and have many new
friends I met there. I am baking cookies for sale to raise money for NUMS-PLS
and SPF. Bake 1-3 recipes per week. Have enjoyed contact with people and
ability to accomplish something people enjoy.
Additional Comments? I really value the PLS Friends group as it puts
me in touch with people who understand the problems I deal with. Most times
people are just being polite when they ask how you are and really don't want
to hear problems so it's good to have someplace to go where you can talk.
Where do you live? Harvey, LA
Share my data? Yes
Email Address: cvscvs@msn.com
Submitted: 05/2003
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Leon, Bebe (Blanche)
Gender: Female
Date of Birth: 05/28/1936
Diagnosis: PLS suspected 04/2001 by Dr. H. Mitsumoto
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? observing for three years
Symptoms: 2000 falling, right side, 2001 foot drag, on right side; 2002 peculiar gait
on right side
and started to use cane; 2003, peculiar gait on right side, and started to use walker; 2004, spasticity
on both sides use walker, weakness, fatigue
Treatment or Aids you use: 2001 baclofen and rilutek
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: Two sons, two daughter-in-laws,
five
granddaughters, each family has a dog.
I live alone with two tuxedo cats, Frick and Frack. Love to read and do hand work such as sewing etc. I am Jewish and am an
active participant in the East Northport Jewish Center.
Employment info: Retired from Clinical Social Worker because I have PLS
and I was not able to get to work when there was heavy rain, snow, and icy
weather. I had worked with the very poor who were mentally ill and it was
important for them to have the structure of my being at work. I am a senior
and collect Medicare.
Household chores, daily living info: I live alone and have a cleaning
person come in once a week. I am able to do most things in my home. I am
still able to drive. My activities are limited by lack of stamina.
What new activities or interests have opened up to you because of your
disabilities? I give myself the time to read.
Additional Comments? I am amazed at how wonderful strangers are when I
meet one of my greatest challenges, doors. I had one lady go into the
middle of the street and stop traffic when she saw how I was waiting to
cross a street. On a personal note I am learning to swallow my "False Pride"
and ask for help. It is extremely difficult to live alone...when there is
someone else around they usually pick up the slack.
Where do you live? Commack, Long Island, N.Y. Share my data? Yes
Email Address: Social1997@aol.com
Submitted:: 9/10/2004
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LN Gender: Female
Date of Birth: Apr 1, 1950
Diagnosis: PLS suspected in Feb 2003 by Dr. A Chancellor, Tauranga
Has your dx been confirmed by a second neurologist/clinic? No
Where you misdiagnosed prior to getting a PLS dx? No
Symptoms: 2000 peculiar gait on both sides, friends noticed "limping"
when tired; 2002 falling, walk into furniture, fall when bumped; Jan 2003
walking
difficulty more pronounced; Mar 2003 arm/hand on both sides, writing slower, difficulty
opening doors; Mar 2003 speech, slight slurring of speech, drooling at night.
Other Symptoms: 2003 startle reflex, fasciculations, shaking of foot
when trying to direct into shoes.
Treatment or Aids you use: 2003 baclofen 10mg per day,
antioxidants, changed diet to exclude diary products.
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, infection
with human wart virus - maybe. Additional stress.
Employment info: Currently still working as a department manager in
an educational institute. Affect on work minor at this stage.
Household chores, daily living info: Still completing most tasks.
Tire easily and need help. Used to do home decorating now unable to do
this. Unable to participate in outdoor activities such as tramping,
rafting, swimming in surf with family.
What new activities or interests have opened up to you because of your
disabilities? Funding about PLS.
Where do you live? New Zealand Share my data? Yes
Email Address:
dana1@xtra.co.nz
Submitted: 04/2003
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Lockwood, Lavon
Gender:
Female Date of Birth: October 30, 1947
Diagnosis : PLS confirmed in Dec 1999 by Dr. Stanley Appel, Baylor Med. School, Houston, Tx.
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? Three months
Symptoms: June 1997 foot drag on left side, had overall weakness, fasciculations; Feb
1998 fatigue; Nov 1998 arm/hand, on left side, broke right hand- left very awkward; July 1999
peculiar gait; Sept 1999 falling, 3 falls in 2 weeks rather than
occasionally; Oct 1999
spasticity on both sides, clonus, tightness on exam, duration???; May 2000 speech, hoarse speech, cough; Apr 2002
slowing speech.
Other Symptoms: Diffuse
fasciculations, spasmodic dysphonia, exaggerated startle reflex, foot and leg
spasms
Treatment or Aids you use: 1999 cane; 2000 baclofen pump and Botox
injection in larynx; 2001, Vit E, Vit C,
beta carotene,
four wheeled walker, Co Q-10, rilutek,
melatonin, prilosec; 2002 power chair for distances, handicap van.
What bothers you the
most in regards to functions or abilities you have lost? In ability to move quickly, need for walking assistance and
getting up after falls
Are you participating in the NWU or NIH study? Yes, both. I
have a return visit to NIH in Aug 2002
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, ??? symptoms after INH therapy became
noticeable.
Family, household, hobbies info: I live with my husband, Mark. Three adult children - two
married and one away in college. I like quilting, reading, genealogy and
computers.
Employment info: I am a
nursing professor in an ADN program. My clinicals are becoming very
difficult because of my mobility and hand problems can't follow students as
well or demonstrate procedures. Have had to move on campus office because
of stairs, distance to parking. My department chair is trying to find a
purely classroom load for me now.
Aug 2002 Update: Still working- now unable to supervise students in the clinical setting. Applied for accommodation under
the ADA and was told none could be made. Now pursuing and ADA discharge.
Also, under ADA I have been able to get a reserved parking space large
enough to allow me to exit in a power chair from the side entry van.
Household chores, daily living info: Drive with an automatic transmission.
My husband must do most of housework and cooking - we eat out A LOT.
What new activities or interests have opened up to
you because of your disabilities? PLS list. I'm
also doing a C.E. offering for nurses on spasticity.
Aug 2002 Update: Will be participating in a handicapped adult sensitivity training for nursing
students. It's a chance for disabled adults to tell nursing students how
the disabled person copes with the disability and what others can do to help.
Where do you live? San Antonio, Texas Share this data? Yes
Email Address:
Lockwood@texas.net
Return to Index |
Lucas, Donald Gender:
Male Date of Birth: Jan 16, 1936
Diagnosis: ALS confirmed in Sept 2002, at U of Michigan
by Dr. Fink
Has your dx been confirmed by a second neurologist/clinic? No
Where you misdiagnosed prior to getting a PLS dx? Yes, misdiagnosed with PLS
in 2000
How long did it take you to get a diagnosis? Originally one year
Symptoms: Oct 1999 spasticity on left side and stiffness in the cold; Dec 1999 falling
(fell up steps), foot drag, peculiar gait, use of cane; 2000 arm/hand, unable to walk, use of walker; 2001 anger
needing management; 2002 dragging self with four wheeled walker; 2003, speech slurred - swallowing
problems.
Treatment or Aids you use: 1999 cane to to Q cane; 2000 four wheeled walker, manual W/C
for outings; 2002 home health aids, lift modified bathroom; 2003 G tube for fluids, full time power chair, on the
road again with a van.
What bothers you the most in regards to functions or abilities you have
lost? Being dependent on others, others having problems understanding what I say.
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: Wife Bonnie, two
children and two grandchildren
Hobbies: coached girls softball for 25 years. Still enjoy
watching, wish I could be out there. Enjoy fishing, kite flying.
Was an avid bike rider.
Employment info: Retired in 1999 and received disability shortly
thereafter. Was a janitor in a factory - around many chemicals.
Household chores, daily living info: Holds his chair down so it doesn't get away.
Have home health twice daily to get up shower and then to help with putting to bed. Bonnie does most
everything or the children. We do hire outside work done. No longer drive
What new activities or interests have opened up to you because of your
disabilities? Gets to watch as much sports as he wants and that's a lot.
Not interested in new leisure activities much to the dismay of Bonnie
Where do you live? Clyde, Ohio USA Share this data? Yes
Email Address:
BLUCAS@WINESBURG.COM
Submitted: 05/2003
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M
Gender: Male
Date of Birth: Mar 30, 1944
Diagnosis: PLS confirmed in Apr 2001 by a Neurologist
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? Forty-three mo.'s from 1st symptom
Symptoms: Sept 98 foot drag on right side, mild stiffness, right leg & hip; Jan
2000 falling, tripping, fatigue, muscle weakness starts; Dec 2000 peculiar gait
on right side, balance, weakness, fatigue, spasticity worsen; Apr
2002 arm on right side, symptoms worsen, spasticity spreading; Jun 2002 spasticity
on both sides, spasticity in back and neck starts; Sept 2002 spasticity on
right side, arm/hand weak, days I cannot sign name.
Other Symptoms: Sept 98
mild high pitch ringing in head & sense of lightheadedness; Dec 2000
falling causes sciatica, disc herniation, spinal stenosis, continuous back
pain & broken ribs; Dec 2000 cannot postpone bladder or bowel urgency
Treatment or Aids you use: 1998 vitamins, mega doses of E & C;
2000 other supplements and baclofen; 2001 lower extremity
braces both feet, after braces start using canes; 2002 braces and canes or walker, catapres
patch, require some aide just to stand.
What bothers you the most in regards to functions or abilities you have lost?
Balance, falling backwards
Are you participating in the NWU or the NIH study? No, I plan to contact NWU and NIH
Is there anything you attribute to your onset of PLS? Yes, I believe a latent virus triggered apoptosis;
exposed to polio (?) at early age.
Family, household, hobbies info: Married, athletic & slim, a variety of interests.
Employment info: Early retirement, three years after first symptom. Falling, spasticity in
limbs/hands and fatigue did not allow me to continue working. President of
bio-tech company.
Household chores, daily living info: Undertake a daily household chore and mental exercise. Need
some assistance in daily living activities. Can drive, but only drive short
distance, avoiding traffic, if possible.
What new activities or interests have opened up to you because of your
disabilities? Only new
activity is learning about PLS and plan to do some type of volunteer work.
Where do you live? Boston, MA USA Share this data? Yes
Return to Index |
Martinez, Carol
Gender: Female Date of Birth: Jul 20, 1947
Diagnosis: PLS confirmed in Jan 2000 by Catherine Lomen-Hoerth
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? One year
First Symptom: 1995 spasticity, not often just once in awhile;
1996 arm/hand on both sides; 2002 unable to walk, both sides affected, used a
walker but not at home; 2001 fatigue, all the medication and
spasticity; 2002 speech, a little slurred, others don't notice.
Other Symptoms: 2000 can't cross streets or stiffen up when people
are watching, or around even; 1999 legs ache deep into my bones, sometimes
arms too
Treatment or Aids you use: 2000 baclofen 40 mg 3x a day,
cloinpin 5mg 2x a day, walker; 2002 10mg 2x a day, cloinipin 5mg 3x a day
& 10mg at night.
What bothers you the most in regards to functions or abilities you have
lost? Not being able to walk
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: I like to travel and just got back from Italy and England, but may not be
able to go on any more trips, this one was hard.
Employment info: Social Worker -- still working, full time for DSS, part-time at a hospital
emergency room. Have a hard time doing home visits with kids and walking in
general. Have to take extra medication when working at the hospital and
there is a particularly stressful case.
Household
chores, daily living info: I drive,
do all ADLs. Clean my own house, but not very effectively, sometimes have
someone come in and clean.
What new activities or interests have opened up to you because of your
disabilities? None
Where do you live? Daly City, Calif. USA Share this data? Yes
Email Address:
cmbbmjj@hotmail.com
Submitted: 12/2002
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Maser, Bruce Gender:
Male Date of Birth: Nov 6, 1952
Diagnosis: PLS confirmed in 1997 by Dr Hallet and staff, NIH
Has your dx been confirmed by a second neurologist/clinic? No
Where you misdiagnosed prior to getting a PLS dx? Yes, probable MS
How long did it take you to get a diagnosis? Thirteen years!
Symptoms: 1982 foot drag on both sides, stiffness in legs/ankle,
clonus; 1988 peculiar gait on both sides, under stress; 1993 arm/hand on
both sides very minor; 1998 falling, not unexplained! 2000 speech, difficulty on telephone; 2001 fatigue.
Other Symptoms: 1990 startle reflex, especially to ringing
phone, emotional liability.
Treatment or Aids you use: 1990 oral baclofen, diazepam; 1990
numerous antidepressants ongoing; 2000 cane occasionally; 2003 cane
regularly.
What bothers you the most in regards to functions or abilities you have
lost? Physical activities
Are you participating in the NWU study? Yes, father, mother, me
Are you participating in the NIH study? Yes, one of her first -
1997
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, extreme
stress combined with toxic chemical exposure.
Family, household, hobbies info: Single, never married,
computer activities.
Employment info: Work 30 hours per week. Receive partial long term
disability. Architect - cannot visit construction sites, air travel
difficult, lose mental focus easily.
Household chores, daily living info: Independent, no trouble
driving, no outside help.
What new activities or interests have opened up to you because of your
disabilities? None come to mind.
Additional Comments? I am fortunate for a very slow progression,
but am concerned for lack of a future caregiver. There has been no
remittance or acceleration of symptoms, just gradual progression for 20
years.
Where do you live? Norfolk, Virginia USA Share this data? Yes
Email Address:
bmaser@cox.net
Submitted: 02/2003
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McCord, Jane
Gender: Female Date of Birth: July 10, 1931
Diagnosis: PLS confirmed in Oct, 1999 by Harris L.
Bonnette
How long did it take for you to get a diagnosis? Two years six months
Has you diagnosis been confirmed by a 2nd neurologist? No
Were you misdiagnosed prior to the PLS dx? No
Symptoms: April 1997 foot drag; 1997 arm/hand; 1998 falling,
peculiar gait
Treatments or Aids used:1999 cane, 2000 four-wheel walker, 2003, power chair
(used only at home)
What bothers you the most in regards to functions or abilities you have lost? Loss of balance and coordination
Are you participating in the NWU or the NIH study? Yes, both.
Do you have any blood relatives, living or deceased, with neurological disease? Yes
Is there anything you attribute to your onset of PLS? Yes, possibly
stressful job (1963-1994) and family stress off and on.
Family, household, hobbies info: Used to bowl, delivered Meals on Wheels, take water classes, active in
women's club, travel. I have one son, Alan, who lives in Virginia. One of my sisters and two nieces live near me; another
sister lives in Watertown, Wisconsin and a sister who lives in Syracuse, NY. I play cards, MahJongg
and Rummikub, but most of my free time is spent on the computer.
Employment info: Legal Secretary - retired 11/94. Have not applied for SSDI.
Household chores, daily living info: I moved into an assisted
living facility in 2002, where they clean apartment once a week and wash
clothes and linens. I eat my breakfast in my apartment and eat lunches and
dinner in our facility's dining room. I still drive.
What new activities or interests have opened up to you because of your disability? Yoga and Fusion One
(exercise) Classes. The computer keeps me pretty busy in any free time I have.
Where do you live? Fort Myers, Fla. USA Share this data? Yes
Your Email Address:
ejmccord@aol.com Updated: 3/2004
Return to Index |
McDonald, Linda
Gender: Female
Date of Birth: Sept 13, 1951
Diagnosis: PLS confirmed in Apr 2002 by Dr. John Segall
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 7 months
Symptoms: 1990 arm/hand on left side; 2000 foot drag on
left side, peculiar gait, fatigue; Jun 2001 spasticity, loss of balance; Sep 2001 falling.
Other Symptoms: 1990 spasms in left arm; 2000 startle reflex; Jun 2001 loss of balance
Treatment or Aids you use: 2002 medications, cane, phys. & occup. therapy 6 weeks
What bothers you the most in regards to functions or abilities you have
lost? Change of lifestyle, accepting help from others in cooking, eating,
walking, etc.
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: Husband and daughter at home. I used to do crafts, garden, yard
work, housework, volunteer at local school and church but no longer.
Employment info: I had quit working in 1989 to stay home with my
children. I worked in a insurance office as head cashier for 20 years.
I
am unemployable now. I can't even volunteer. Everything I manage to do is
a major struggle.
Household chores, daily living info: I can only do laundry, water my indoor plants, and pay
the bills. Luckily I am right handed. I am still able to drive but I don't travel far and 99%
of the time someone is with me.
My husband does a few duties Iused to do but he does work 12 hrs a day. My daughter does most of the duties I
used to do but she is a full time student with two part time jobs. My son just moved and he works and goes to
school full time.
What new activities or interests have opened up to you because of your disabilities? Getting on the
internet. Probably awareness of the struggles the disabled go through.
There are really no new activities
since I’m very limited physically. I can only type with one hand and what few things I do wears me out and
the zanaflex i take makes me sleepy. I really don't have much energy.
Additional Comments? I try to keep as active as possible.
Where do you live? Monroe, MI USA Share this data? Yes
Email Address: yourdime2@provide.net
Submitted: 09/2003
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Meacham, Roger
Gender: Male
Date of Birth: Oct 09, 1942
Diagnosis: PLS suspected in Oct 2000 by Charles G. Maitland
Has your dx been confirmed by a second neurologist/clinic? Yes
Were you misdiagnosed prior to getting a PLS dx? Yes
How long did it take you to get a diagnosis? Approx. a year or longer
Symptoms: Jan 1999 foot drag on right side, fatigue -
have experienced this trait for a longer period; Jun 2001 peculiar gait, Clonus both feet, falling
- never know when or where
Treatment or Aids you use: 1996 Prozac; 1999 Clonazepam (Klonopin); 2000 AFO-right leg-ankle,
cane; 2001 Zanaflex; 2002 Canadian Crutches (Forearm)
What bothers you the most in regards to functions or abilities you have lost? Loss of
bBalance
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? Yes, MD?
Is there anything you attribute to your onset of PLS? Yes, stress and possibly, PROZAC
Family, household, hobbies info: Married 40 years to Shirlon. Have two
children in their 30's, four
grandchildren. Worked as a two way radio technician all my working career.
Amateur Radio, RV'ing.
Employment info: Retired Sept 27, 2001---- Applied for SS Disability, preparing to appeal denial 1st
round
Household chores, daily living info: I still drive; spouse does most household chores with some assistance from
myself. I solicit help from friends for heavier tasks that I used to
perform. Hire outside help as a last resort.
What new activities or interests have opened up to you because of your disabilities? I use my laptop
more and watch much more television, due to fatigue.
Where do you live? Chipley, Fla.
Share this data? Yes
Email Address:
rameacham@hotmail.com
Return to Index |
Merseburger, Alessandro
Gender: Male
Date of Birth: Mar 25, 1958
Diagnosis: PLS confirmed in Feb 1997 at the University Hospital
in Verona - Italy
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 months
Symptoms: Jun 1996 peculiar gait on left side; Oct 1997 arm/hand on left side; Jan 1998 spasticity
on both sides; Jan 2001 swallowing, breathing; Jan 2002 speech; Jan 2003
unable to walk.
Treatment or Aids you use: 1997 Rilutek – Baclofen; 1998 cane; 2000 wheelchair.
What bothers you the most in regards to functions or abilities you have
lost? Everything :-))
Are you participating in the NWU or the NIH study? Yes to
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
Family, household, hobbies info: Married with Michaela (caregiver). One child, Riccardo 12 years old.
Employment info: I was sales and marketing manager in a small/medium size company and stopped working in
April 2000 when I've declared fully disabled. The Italian social system pays me an
invalidity pension, which amounts to three/quarter of the last salary.
Household chores, daily living info: I quit driving during summer 1999.
What new activities or interests have opened up to you because of your
disabilities? I became press officer of the baseball team where my kid plays. I started playing
chess again. I surf on Internet. I read a lot of books.
Where do you live? Verona, Italy Share this data? Yes
Email Address:
mmenest@tin.it
Submitted: 02/2003
Return to Index |
Monaghan, Janet
Gender: Female Date of Birth: Nov 7, 1943
Diagnosis: PLS confirmed in Aug 2000 by Dr. Dominic Rowe - MND Clinic RNSH Sydney Australia
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? Four years
Symptoms: Jan 1996 speech slowed; Sep 1997 arm/hand on left side; Sep 1998 foot drag
on left side; Sep
1999 falling; 1999 fatigue; 2000 unable to walk; 2000 spasticity.
Other Symptoms: 1998 major depression, uncontrollable crying; 1999 uncontrollable laughing;
2001 since then progressively weaker.
Treatment or Aids you use: 1999 walkers, Prozac; 2000 wheelchair, Gabapentin.
What bothers you the most in regards to functions or abilities you have lost? Loss of speech, loss
of autonomy.
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: I have 3 grown children, 2 grandchildren. Love outdoors, good
company, reading, movies, cafes, and outings. My son lives with me. I have
lots of daily helpers come in to help me with everything.
Employment info: Ten years ago I retired, divorced after 30 yrs marriage - took 3 yrs to settle
everything - then started getting mystery illness and depression. Used to
run cafe with husband for many years. Now have disability pension.
Household chores, daily living info:
Do not drive, have approx 28 hrs per week assistance with personal care,
chores, meals etc from various agencies (Govt. ed)
What new activities or interests have opened up to you because of your disabilities? Interact with
more people - used to be more reserved.
Additional Comments? Have learned to live for today - appreciate every small pleasure.
Where do you live? Gladesville, N.S.W. Australia Share this data? Yes
Email Address: janetmon@tpg.com.au
Submitted: 02/2003
Return to Index |
Montgomery, Pat (Cookie) Gender:
Female Date of Birth: Oct 03, 1945
Diagnosis: PLS confirmed in Jan 2003 by Dr. Dale Lange Mt. Sinai NYC
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 months
Symptoms: Jun 2001 spasticity, read below
Other Symptoms: Jun 2001 started with fasciculations of both legs, hyper reflexes, spasms
Treatment or Aids you use: 2002 celebrex 200mg bid, daily Vitamin C 2000 units, 1200 of Vitamin A,
15 beta carotene
What bothers you the most in regards to functions or abilities you have
lost? Still able to do as before, although I feel like I walk awkwardly
Are you participating in the NWU study? No, would like to
Are you participating in the NIH study? Yes, in process of neuro filling out paperwork.
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: Live with my husband and we care for
my 93-year-old mother who lives with us. Have 8 children and #15 grandbaby
is on its way. Active in our church and help others when we can.
Employment info: I am retired from our local newspaper as an outside
advertising person. I retired early in 1995. It is not necessary to apply for SSDI.
Household chores, daily living info: I drive, and am able to care for
my husband and mother. Husband has had two strokes and two heart attacks.
Both are doing fine.
Additional Comments? I love having the ability to share and read the
challenges of others with PLS. The group has been a huge source of information and support to me.
Where do you live? Kingston, N.Y. USA Share this data? Yes
Email Address: mrsbill@att.net
Submitted: 02/2003
Return to Index |
Moran, Elaine Gender: Female Date of Birth:
11/26/1933
Diagnosis: PLS confirmed in 2005 by Dr Kovac
Has
your diagnosis been confirmed by a 2nd neurologist or clinic? No
Were you misdiagnosed prior to PLS diagnosis? Yes
How long did it take you to get a diagnosis? Four years
Symptoms: 2001 arm/hand on right side; 2002 speech; 2003 peculiar gait on right side; 2004
falling, spasticity on right side, startle reflex, crying; 2005 swallowing and breathing; 2006 fatigue
Treatments or Aids you use: 2005 Baclofen, cane, walker and Botox injections
What bothers you the most in regards to lost functions or abilities?
Not being able to do normal things.
Are you participating in the NWU or the NIH study? No
Do you have a family member (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: Family, household, hobbies info: Husband and handicapped daughter.
Employment info: Stay at home and do what I can. I have a wonderful
husband who does everything.
Household chores and daily living info: I can do laundry because it is on the ground floor. My husband does most of the
housework. I can no longer lift my daughter, so he does that. I change her
and feed her. We will keep her with as long as possible. She is 39 years
old and weighs about 65 lbs so that makes it easier.
So far I have no help with the housework. I do have someone come in for my
daughter to help bath her and take care of her so we can get out. I do
drive but not very often.
What new activities or interests have opened up to you?
I used to line-dance 4 times a week but no more. I wish I could find something
that I could do. I like to read and do crosswords and sudoku but I would
something more active.
Address: Ormond Beach, Fla. Share my data: Yes
Email Address: bugsm330@aol.com Submitted: 9/9/2006
Return to Index |
Moschel, John
Gender: Male
Date of Birth: Feb 21, 1953
Diagnosis: PLS confirmed in May 2000 by Dr. Siva Kumar-Barrows in Phoenix
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? About 2-3 months of tests
Symptoms: Aug 1997 foot drag; Jan 1999 peculiar gait; Mar 1999 fatigue; Aug 2001 unable to walk
Treatment or Aids you use: 2000 Baclofen med; 2000 cane, creatine-supplement
What bothers you the most in regards to functions or abilities you have lost? Frustration in not
being able to walk-problems coping with fulltime work 30 yr. career.
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: Grandchildren; woodworking; hunting; fishing.
Employment info: Yes, about 40 hours/week-Meat Department manager in process of training my
replacement, as I don't know how much longer I'll be ale to continue with the physical nature of the job, i.e. lifting,
back pain, neck pain, and walking.
Household chores, daily living info: Basic yard work-helping my wife with household chores-No
outside help yet except family when they are in town.
What new activities or interests have opened up to you because of your disabilities? Computer
skills; reading; self help books; fund about this disease.
Where do you live? Cottonwood, Ariz. Share this data? Yes
Email Address:
jmoschel1999@yahoo.com
Return to Index |
Myrick, Carolyn
Gender: Female Date of Birth: Mar 31, 54
Diagnosis: PLS confirmed in Sep 1998 by Dr. Connolly
How long did it take for you to get a diagnosis? Fifteen years
Has you diagnosis been confirmed by a 2nd neurologist? No
Were you misdiagnosed prior to the PLS dx? No
Symptoms: 1985 peculiar gait on left side; 1987 foot drag onleft side; 1988 fatigue.
Other symptoms: 1987 spasms after muscles would jump in my legs.
Treatments or Aids used: 1999 started using a cane.
What bothers you the most in regards to functions or abilities you have lost? Not being able to just get up
and go do the things I had been doing like hiking and riding my bike.
Are you participating in the NWU or the NIH study? No
Do you have any family members,
living or deceased, with neurological disease? Yes, just heard my 1st cousin was diagnosed
with MS, but haven't talked to him if it was for sure diagnosis.
Is there anything you attribute to
your onset of PLS? Yes, I herniated my 5th lumbar doing aerobics back in 1984, it healed but I didn't.
Family, household, hobbies info: My husband John and our Sheltie, Boarder Collie Pepper who is our baby at 10 years old. No children.
Employment info: I took care of a friends baby for three years but had to quit
two years ago. I loved my job, but
it got to hard to keep up. I also use to be a school aide, but that got to hard
also. I'm now on disability.
Household chores, daily living info: I still do housework but husband helps me allot. I still drive.
What new activities or interests have opened up to you because of your disability? I swim twice a
week at the pool here at the hospital. I try to stay active as much as I can.
Where do you live? Olympia, Wash. Share this data? Yes
Your Email Address: cmyrick@hotmail.com
Return to Index |
Nagelvoort, Jon Gender: Male
Date of Birth: Jun 19, 1942
Diagnosis: PLS confirmed in Feb 2003 by Dr. Robert Warren
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? Eleven years
Symptom: Jun 1991 foot drag on right side.
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
Where do you live? Fallbrook, CA USA
Email Address: jon723@aol.com
Submitted: 02/2003
Return to Index |
Nichols, Lisa Gender:
Female
Date of Birth: Aug 30, 1958
Diagnosis: ALS confirmed in Mar 2004 at the Colorado University MDA/ALS clinic
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? Twenty years
Symptoms: 1983 peculiar gait; 2001 peculiar gait and speech; Feb 2002
arm/hand; Apr 2002 spasticity; Jul 2002
swallowing, breathing.
Other Symptoms: 2002 fasciculations, leg and arm cramps increasing.
Treatment or Aids you use: 1984 baclofen, amytripline; 2002 restart
baclofen; 2003 Zanaflex and walking stick.
What bothers you the most in regards to functions or abilities you have lost?
Can’t drive.
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? No
Is there anything you attribute to your onset of PLS? No
Family, household, hobbies info: Mother of seven children, love to cook and garden and be a mom. I love
children.
Employment info: I take care of children. Yes, I cannot even manage taking care of my own.
Household chores, daily living info: It is becoming very difficult. My husband lost his job
four months ago.
What new activities or interests have opened up to you because of your
disabilities? Haven’t figured it out yet.
Where do you live? Englewood, Colorado USA Share this data? Yes
Email Address:
lisa.nichols@earthlink.net
Updated: 05/2004
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|
Niehaus, Pat Gender: Female
Date of Birth: Mar 27 1944
Diagnosis: PLS-Confirmed 08/96 Dr. Laura Sams
Has your dx been confirmed by a second neurologist/clinic? Yes
Where you misdiagnosed prior to getting a PLS dx? Yes, M.S.
How long did it take you to get a diagnosis? 4 years
First Symptom: 07/92 falling, twisted my ankle & lost balance on
inclines.
Second Symptom: 10/93 Peculiar gait, Left, walking treadmill leg
would drag.
Third Symptom: 12/94 Arm/hand, Left, lifting more difficult
Fourth Symptom: 05/95 fatigue
Fifth Symptom: 05/95 Spasticity, Both, more frequent falls.
Sixth Symptom: 05/95 Foot drag, Right
Seventh Symptom: 06/00 Speech, Slow speech, tongue thick
Other Symptoms: 06/96 Uncontrollable laughing, 09/95 startle
reflex severe, 06/02 swallowing, choking .
Treatment or Aids you use: 1995 baclofen, 1995 cane, 1998 4
wheeled walker, 1998 wheel chair for long distances, 2000 AFO's, 2001
Baclofen pump.,1996 vitamin C 1000mg,E 400 IU tid, beta carotene 6 mg bid,
20000 B- complex 50 Tid
What bothers you the most in regards
to functions or abilities you have lost? Difficulty carrying on
conversations & cooking
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
Where do you live? Hamilton, Ohio USA
Family, household, hobbies info: My husband & I live in a ranch
home with our Golden Retriever. We have 3 grown children & 1 granddaughter.
We enjoy browsing Antique malls, spring & summer in our yard. Spending time
with family.
Employment info: I am a registered nurse, I was a case manager
for the Workers Compensation System in Ohio. I went on disability
retirement 09/97.
Household chores, daily living info: I can still take care of my
personal needs, I am unable to efficiently perform any chores. I help with
cooking advice. My husband left his job in 2001 to stay home with me. He
performs all household duties. I no longer drive, gave it up due to startle
reflex & slow response time.
What new activities or interests have opened up to you because of your
disabilities? I enjoy observing nature, having the time to reflect on
life, surfing the internet.
Additional Comments? I enjoy life, am grateful for family &
God's love. I am also grateful for all the PLS'er who share so willing.
Email Address:
patniehaus@webtv.net
Share this data? Yes
Submitted: 02/2003
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|
Noren Gender:
Male Date of Birth: Oct 23, 1946
Diagnosis: PLS-Confirmed Oct 1997 Dr. Elloitt Virginia
Mason Medical Center Seattle
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? 5 years
First Symptom: Jan 1992 Peculiar gait, Right, no
thoughts of a disease
Second Symptom: Oct 1992, Foot drag, Right, went
to see a Dr
Third Symptom: Jun 1993 falling, doing all kinds of
tests
Fourth Symptom: Jun 1994 Arm/hand, possible PLS
Fifth Symptom: Jan 1999 Speech confirmed PLS 1997
Sixth Symptom: Jan 2000 Spasticity, Both, right worse
than left
Seventh Symptom: Jun 2001 Swallowing, breathing, Baclofen pump
put in
Other Symptoms: Jan 1997 Startle reflex, Jan 2000 Uncontrolled laughing
not as bad crying
Treatment or Aids you use: 1994 zanaflex, 1995 valium couldn't handle,
1996 calcium injections / a Dr in Germany, 1996 oral baclofen couldn't
handle, 1996 vitamin E and C, 2000 test for pump, 2001 baclofen pump put in.
(July), 2002 coral calcium, vitamin A and D
What bothers you the most in regards to functions or abilities you have
lost? Not being able to work the job I really really liked
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
Where do you live? Tacoma, Washington USA
Family, household, hobbies info: I have a wonderful wife, she is my
caregiver and my support. We have 4 grown children and five wonderful
grandchildren. We also have a dog that keeps us entertained. We keep busy
with family, church and I do some coin collecting.
Employment info: I'm not working any longer. I worked for Air Products
industrial and medical gases as well as liquid. I worked there for 20 years
and the last 11 I traveled the state of WA,, Or., and western Id. to MRI
sites in hospitals and outpatient sites at night filling the MRI magnets
with liquid helium and liquid nitrogen. I drove a small tractor/trailer
spending 2 or 3 nights a week away from home. It was a dream job for me and
I was sorry to have to give it up in June of 2001. I have been getting SSDI
Jan 2002 and some disability from my work since June of 2001.
Household chores, daily living info: My wife does a lot of things that
I can no longer do. I still drive and help out as much as I can. She really
takes good care of me too.
What new activities or interests have opened up to you because of your
disabilities? More reading, church activities, some coin collecting, and
a lot of time on the computer PLS Friends, games etc..
Email Address:
norenlnr@netzero.net Share this data? Yes
Submitted: 07/2004
Return to Index |
Nunn, David
Gender: Male
Date of Birth: 10, 16, 1948
Diagnosis: PLS-Confirmed 1988, Dr. A. Hudson retired & replaced by Dr. M.J. Strong
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? Two years +
Symptoms: 1985 foot drag; 1988 falling; 1990 speech; 1990 fatigue; 1990 arm/hand
Other Symptoms:1991 Startle Reflex & uncontrollable laughing & crying
Treatment or Aids you use: 1994 amitryptiline 10mg, 1994 use cane in crowds, 199, laptop with speech
engine, 1998, scooter if going any distance
What bothers you the most in regards to functions or abilities you have
lost? Speech, ability to
communicate:
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, I had 2 major surgeries on my spine in
1984,for scoliosis
Where do you live? London, Ontario, Canada
Family, household, hobbies info: My wife Sandra & I have 2 sons, Ian aged 28,
& Mike aged 23,and 2 grandchildren, Kelly aged 7, & Ryan aged 2. The 2
grandkids keep us very busy, as we baby-sit most days, and Sandra still
works full time. Other than that my passion is Golf, and our city has a par
3, 9 hole disabled golf course, which I am still able to walk, but
wheelchairs and scooters can be used and are even permitted on the greens,
and the city also has clinics for disabled golfers twice yearly, which pros
attend and they will doctor clubs so you can use them in a wheelchair etc.
Employment info: When I
first came to Canada in 1974, I painted new homes, but in 1979 I became a
city bus driver, which was my job in England: In 1990 I went on long-term
disability, as with my slurred speech & unsteady gait, people thought I had
been drinking. Fatigue was also becoming a problem.
Household chores, daily living info: I try to do as much around the house as I can, but have
learned to pace myself, I do a job for 10 minutes and rest for 15, I find
that way I can last most of the day. I still drive, they pulled my bus
license, but I still have one for a car.
What new activities or interests have opened up to
you because of your disabilities? Sandra & I
became very involved in our local ALS Chapter, and in 1995 began running
Bingos, and the money raised is used for ALS fund (my neuro, Dr Mike Strong,
is a leading funder) and to purchase equipment to be used by ALS patients in
our area, and we run the loaner program which is free of charge. Since 1995
we have raised $140,000.00, of which approx $80,000.00 has gone to fund.
Email Address:
dnunn@sympatico.ca
Share this data? Yes
Return to Index |
Nurrenbrock, Mary Gender:
Female. Date of Birth: 10/3/1956
Diagnosis: PLS confirmed on 12/11/2004 by Rabrindra Kitchner, Neurologist
Has your diagnosis been confirmed by a 2nd neurologist or clinic? No
Were you misdiagnosed prior to PLS dx? No
How long did it take you to get a diagnosis? One day short of one month
Symptoms: July 2004 foot drag – right side, peculiar gait – both sides, fatigue, arm/hand
– both sides; 2004 crying, 2 times at work, unlike me, never unhappy. Hyper reflex, bout knocked
Dr out, fast and swift, he said something wrong on first visit; Aug 2004 equilibrium balance, feeling like I was falling
over while standing; 2005 spasms
Treatment or Aids you use: 2004, tizanidine (zanaflex)
What bothers you the most in regards to lost functions or abilities? My
walking, stares from people, not working, not normal.
Are you participating in the NWU or NIH study? No, but would
Is there any family member (living or deceased) with a similar neurological disease? No
Is there anything you attribute to your onset of PLS? No
Family, household, hobbies info: I have two grown daughters; 2dogs.
Love to garden, play bingo, watch NASCAR
Employment info: I was employed full time but had to apply for
SS disability - last day Sept 29, 2004.
I was a welder made for Honda car, noticed could not lift things I did. My Dr. put me off
immediately,
just to dangerous for me to do it. I would also load parts on machinery for the robotic welders.
Household chores, daily living info: Since last year I would say I do about 25% of what the old me did.
Hard to do everyday things but do it, a lot of broken dishes. I try to keep
positive and
do everyday chores but can't do it like before.
What new activities or interests have opened up to you?: On
line support group new friends
Additional Comments: PLS is changing my life everyday. Simple
things as walking, doing the dishes and proud that I did not break any
dishes. Rolling over in bed hard now, the small things in life is changing.
Gets lonely. I have become more sensitive to the handicapped.
Address: Tipp City (north of Cincy), Ohio Share my data: Yes
Email Address: mary6692405@yahoo.com Submitted: 4/7/051
Updated May 26, 2005
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Penny, Donald
Gender: Male Date
of Birth: Oct 01, 1948
Diagnosis: PLS confirmed in Jun 1999 UNC-Chapel Hill; confirmed by Duke University
Has your dx been confirmed by a second neurologist/clinic? Yes
Where you misdiagnosed prior to getting a PLS dx? Technically
no; strong suspicion of ALS.
How long did it take you to get a diagnosis? Six months.
Symptoms: Apr 1998 peculiar gait on right side, left side soon followed; Nov 1998 foot drag;
Jun 2001 arm/hand.
Other Symptoms: 1999 fasciculations, startle reflex; 2002 trunk weakness.
Treatment or Aids you use: 1999 cane, baclofen; 2001 four-wheeled walker; 2002 zanaflex
(along with baclofen), 2002 scooter (along with walker).
What bothers you the most in regards to functions or abilities you have lost? Inability to walk freely.
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
Employment info: Still working. I teach at the college level. I teach seated
on a stool and write on an overhead projector (rather than pace around the
room and fill up the chalkboard two or three times during a class). Still
carrying a full load. This is probably possible because of the freedom and
flexibility of college teaching.
Household chores, daily living info: No outside help. I am not
able to help much with household chores, so most of this falls to my wife
and whatever she can cajole out of the kids. I can still drive.
Where do you live? Buies Creek, NC USA Share my data: Yes
Email Address: Line not long enough Submitted: 02/2003
Return to Index |
|
Pepson, Gene
Gender: Male Date of Birth: Jun 20, 1954 |
