Who are we....


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Re: Who are we....

Postby RolandInMI » Mon Apr 06, 2015 7:14 pm

NAME:Roland
RELATIONSHIP TO PSP: Husband
PwPSP:Diane
DATE OF BIRTH: Jan. 8, 1938
DIAGNOSED: 3 to 4 years ago
LOCATION Traverse City, MI
BACKGROUND: Diane has a masters degree in Social Work from the University of Chicago. She had a private practice in Ann Arbor, MI, specializing in psychotherapy and psychoanalysis, and was also a Licensed Marriage and Family Therapist.
Diane has an additional frontotemporal disorder, Primary Progressive Aphasia (PPA), diagnosed 6 years ago. She can no longer talk, but retains a good comprehension. Poor memory.
With the PSP, she cannot now walk, has to be lifted with a hoist. Some choking is also apparent.
We live together in an apartment in an Assisted Living facility.
RolandInMI
 
Posts: 3
Joined: Thu Feb 19, 2015 11:22 am
Location: Traverse City MI

Re: Who are we....

Postby HelpingDad » Thu Jan 28, 2016 11:30 am

NAME: Ron, Jr.
RELATIONSHIP TO PSP: Father with PSP
PwPSP: Ron, Sr.
DATE OF BIRTH: Dec. 12th, 1941
DECEASED:
DIAGNOSED: Nov 2015 tentatively at VA. Confirmed Jan, 7th 2016 by consult with Neurology Movement Specialist. Started showing signs in summer of 2012 upon thinking back.
LOCATION: Greater St. Louis, MO area
BACKGROUND: Dad is ex-army, retired security officer. He is divorced and I am his only child. He moved in with my family in Aug. 2014 after a fall. Nov 2014 was diagnosed with prostate cancer, with radiation and hormone treatments PSA levels are normal range now. Dad is now in a wheelchair outside the home and uses walker with help inside.
HelpingDad
 
Posts: 111
Joined: Sun Jan 24, 2016 11:31 pm

Re: Who are we....

Postby flavia » Mon Feb 15, 2016 5:02 pm

NAME:Flavia
RELATIONSHIP TO PSP: Dad with PSP
PwPSP: Bruno
DATE OF BIRTH: 2/24/1945
DIAGNOSED: 2012/2013
LOCATION: Buenos Aires Argentina
BACKGROUND: Sociologist, human resources manager , curious, strong, lifeloving, proactive, intelligent, cultivated.
flavia
 
Posts: 1
Joined: Sun May 05, 2013 5:25 pm

Re: Who are we....

Postby jlercher » Thu Apr 14, 2016 11:54 am

NAME:Julie
RELATIONSHIP TO PSP: wife of 20 years
DATE OF BIRTH: 5/16/54
DIAGNOSED: 2012
LOCATION: Brockport, NY USA
BACKGROUND: (myself) 56 years old, elementary teacher, but took early retirement to care for John

Background for John: Worked 30 years detailing cars around many chemicals... In addition, he suffered two concussions; one at 10 years old and one in his 20's. Noticed first symptom of blurred vision in 2010, drs. could not improve vision with corrective lenses. We even went to a neuro-opthamologist and he didn't have a clue. Shortly after, he started experiencing balance issues. He gave up driving due to vision in 2012. Finally diagnosed late 2012 with PSP. John is currently stage 3/4. He seems to progress through a stage per year. When I look back, I noticed odd things many years ago, especially in his judgement. I would guess he actually started experiencing difficulty 8 years ago. He is a prisoner in a body that is declining week by week. He can still walk limited distances with a walker, but will soon be wheelchair bound. He has great difficulty getting in and out of bed and needs assistance for every task. He chokes often, especially on liquids. He has expressed his wishes to not have a feeding tube in the future. As for me, I experience the same feelings as all of you. The worst is not having any idea how much longer we will both have to suffer through this...what a nightmare. Even he says he wishes his mind would go too. How sad for all of us! We have had great support through the Nursing Home Diversion Program. We have a great social worker who has connected us with many services along the way. He also has 35 hours per week of aide service, but that has been a nightmare getting anyone dependable. Prayers to all of us to give us continued strength to get through this. It helps so much to know I'm not alone...
jlercher
 
Posts: 1
Joined: Tue Aug 26, 2014 9:30 pm

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