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California Institute for Regenerative Medicine - Progress
and Promise in Parkinson's: Website
Movement Disorder Society - "...an international
professional society of clinicians, scientists and other healthcare
professionals who are interested in Parkinson's disease, related neurodegenerative
and neurodevelopmental disorders, hyperkinetic Movement Disorders and
abnormalities in muscle tone and motor control." Website
The Hidden Face of Parkinson's Disease '...[Jim] fought
Parkinson's by participating in clinical trials for a long as he could.
Now in his mid-80's, he spends his days in a nursing care facility and
can no longer speak, eat, or drink...' Read this touching and important
story on PDPlan4Life here: Website
A discussion about the relationship between Parkinson's Disease
and Assisted Living. Assisted Living can offer an important and
viable living and housing alternative for individuals affected by
Parkinson's - a progressive and debilitating disease. Assisted Living
can also provide substantial relief to those who have assumed the
role as caregiver. This article is not to be considered as, or used
as medical advice. Written By: David
Besnette - Founder/Editor for Assisted Living Directory
I receive a fair number
of daily emails to our site about all aspects of assisted living.
Often times, the emails and messages I receive further clarify
to me that assisted living is a confusing subject, and industry
- and that families faced with the need for long-term care for
a loved one may not fully understand what assisted
living offers, or can do for them.
Assisted Living seems to have
embedded a common perception with many of us that it can only
help seniors, or those with memory/dementia disorders. I think
this is a natural assumption, since most of the marketing and
advertising coming out of the assisted living industry is geared
towards seniors, and is usually described in aging/senior terms,
or in terms of Alzheimer's or memory
Parkinson's Disease, and questions
pertaining to Parkinson's, is a common element to many questions
and messages I receive - most often generated by a family member
looking for help or care for a loved one who has Parkinson's
disease. Usually, the family member is a senior, but there are
cases with early onset Parkinson's where a younger individual
may not be able to live on his/her own - thus needing ongoing,
professional care in a long-term care environment.
Here are a few of the questions
we have received from families or individuals asking about assisted
living and Parkinson's Disease.
One of the messages is from
an individual asking about her sister, who has Parkinson's,
and is only 49 years old - which helps to dispel the assumption,
or myth that assisted living can only help seniors:
parents just recently moved to Aston Gardens from their villa
in Boca; I'm not sure a large facility is where they will be
best cared for. My step-father is getting somewhat forgetful
(not overly) and mom has "Parkinson's with dementia."
They need to be together and they both need meds administered
daily: dad, 2x/day and mom, 3x/day. Mom needs assistance with
toileting and getting dressed and undressed . It seems that
these smaller places might not handle such hands-on arrangements.
Can you please let me know more about how your "home"
operates?" - Caron
am a 61-year-old male looking for inexpensive living arrangements.
I have Parkinson's disease and receive SSI. I prefer the coastal
air, as I also have allergy problems, and I am looking for assisted
living or congregate housing with space available in the state
of California. On the plus side, computers have been my life.
I can teach about computers" - Wayne
my mother and my sister live in NH. My mother has Parkinson's;
my sister has MS. I was wondering if you accept MedicAid."
dad has Parkinson's and Lewy Body Dementia and is in need of
long term assisted living because he is losing strength in his
legs and arms. Do you have the capability of housing someone
like my dad?" - Rosemarie
father was living at Belmont Village but his care got to be
too much for them and he is now in a nursing facility. He would
really like to be somewhere with his own room and better food
and I am wondering what your facility offers. He has had Parkinson's
for 40 years, needs incontinence care, is wheelchair bound.
He is most of the time quite mentally competent. He is also
a VA patient....I don't know if the VA would apply any money
towards the cost of a place like yours, but he does have a decent
income as well. Do you think he might fit in there?" -
sister has advancing Parkinson's, yet is only 49. Will you accept
her in your assisted living facility and what is the monthly
cost? Thank you." - Kathy L
Time Management Tips for Those With Parkinson’s Disease with Dr. Maria De Leon
Video Produced by Assisted Living Directory
We asked our wonderful friend and Contributor, Dr. Maria De Leon (who lives with PD), her tips for time management for someone with Parkinson’s Disease.
Very basically, Parkinson's Disease
is a "progressive disorder of the nervous system that affects
movement." This disease develops gradually, and gets worse
over time. There is no cure, but a number of different medications
can treat the symptoms, and help to manage the disease. Some
of the most notable symptoms include:
Tremors: This is one of the most common characteristics - and
many times begins in the hands.
Motion: This is also called bradykinesia, and causes difficulty
with voluntary movement.
posture and balance
of automatic movements
There are a number of suspected
causes of Parkinson's Disease, including genetic factors as
well as environmental. Changes will occur in the brains of people
suffering from Parkinson's, including a lack of the chemical
messenger in the brain called dopamine; norepinephrine levels
(another chemical messenger in the brain); and the appearance
of unusual protein lumps called Lewy Bodies (usually associated
with Lewy Body Dementia).
We (Assisted Living Directory)
don't want to go too far into the medical end of Parkinson's
Disease - as we are not experts, and we are not doctors - so
if you wish to read more about Parkinson's Disease from a reliable
site, we recommend looking at the Mayo
Clinic's description of Parkinson's Disease.
Our goal here is only to offer
a basic synopsis, which will lead into how assisted living can
help someone with Parkinson's Disease.
A Powerful Video by Parkinson's Resources "Ordinary Things"
Assisted Living and Parkinson's:
At it's core, Assisted Living
exists to help those who are having difficulty living on their
own. Assisted Living offers help with day-to-day tasks such
as dressing, bathing, housekeeping, medication management, cooking,
round-the-clock emergency care, and a social/recreational environment.
In addition, some facilities may offer physical therapy, hospice
care, and advanced care for different disorders, such as Alzheimer's
or Parkinson's. Many facilities also offer transportation to
and from medical appointments, therapists or hospitals.
In those same terms, the core
areas that Parkinson's patients need help with on a day-to-day
basis are very similar: help with day-to-day activities, especially
as symptoms get worse; dressing and bathing; avoiding falls
(many assisted living facilities have handrails, and ramps);
management of medication, physical therapy; help getting to
and from doctors appointments and medical services (especially
after driving a vehicle becomes impossible).
In addition to providing a viable,
alternative living arrangement to someone with Parkinson's,
assisted living, in turn, can provide substantial relief to
those loved ones who have had so assume the role as caregiver.
Some Of The Important
Questions To Ask When Considering An Assisted Living Facility:
Is the facility licensed?
facility in good standing with the health department/state in
terms of code or safety violations?
staff adequately trained?
access to physical therapy?
are the costs of the facility, and do additional/specialized
services and amenities incur an additional charge?
facility equipped to handle residents with balance, orientation
and memory difficulties?
facility well respected, and receive favorable reviews?
has the facility been in operation?
facility handle a progressive disease that will get worse over
facility safely and responsibly administer, store, and record
the medications you need to take?
24 hour care on-site care?
personal care services are provided, such as bathing, dressing,
facility accommodate a special diet, if necessary?
is the discharge policy (if there is one)?
Of course, these are only a few
of the important considerations. Your personal preferences,
such as your social and recreational needs will be considered,
as well as location, and size of facility. This is not to mention
the cost of the facility - which is something you will need
to get in writing - including additional or "hidden"
Assisted Living is here to stay,
and the number of facilities, as well as people moving into
them, is growing rapidly. The outdated perception that assisted
living can only serve seniors, or people with memory disorders
is becoming exactly that - outdated....a thing of the past.
Facilities are becoming more and more sophisticated, with ever
more amenities and services available. Anyone with Parkinson's,
regardless of age, may eventually require ongoing, round-the-clock
help that is unreasonable to expect from loved ones or family
members. This is where assisted living can play a significant
and meaningful role in the care, happiness, and well-being to
those who need it.
Help Finding A Parkinson's-Appropriate Facility (Nationwide):
Help Finding Assisted Living for PD
Assisted Living Directory has helped 1000's of families (including our own!) to connect with great care facilities! You can read our personal experience here!
Fall Prevention Tips and Awareness for Parkinson's Disease (by our contributor Dr. De Leon, who lives with Parkinson's Disease)
Join our Google+ Community & Discussion Group! Learn More
References & Other
Important Sites that Discuss Parkinson's Disease and Assisted
I did do a basic search using the term "assisted living
Parkinson's Disease" and a number of important and helpful
sites came up. Here are just a few:
- Article by the
staff at Assisted Living Directory
to this article:
I need help finding an assisted living facility in San Diego county for my widowed 54 1/2 year old niece. She is in an assisted living facility in Florida, but needs to be closer so I can make sure she is being taken care of properly. She was diagnosed last year with Parkinson's and uses a walker. She gets about $800 monthly social security, Medicare, and Medicaid that goes directly to the assisted living facility (ALF).
I am trying to find an ALF that will accept her social security and MediCal (Medicaid) in full. I can't risk moving her to California without first having her approved for a place to go, because then she won't be able to go back to the ALF in Florida if she leaves. Anyone have any ideas on "reasonable" ALF's in these areas and contact numbers or lists?
6 June 2016 at 2:11 pm
hopefully I will live well into my eighties, but now I am 66 and soon I will need help with assisted living. Would you please send me some information about PD assisted living in the Portland area. Thank you David
31 December 2015 at 3:19 pm
I am 59 and I was diagnosed with PD in 2009. I need to live in an assisted living situation with people near my own age in Northern Virginia. Any suggestions? Evelyn
23 October 2015 at 9:21 am
looking for a long term care Parkinson facility in Arizona could you help me?
4 October 2015 at 7:31 pm
David, thank you for addressing this important topic...there are so many people with Parkinson's disease and unfortunately sometimes both the caregiver and patient are elderly and require outside assistance ...they need to know they have options and will be well taken care off...
Thank you for supporting Parkinson's and spreading the word!!!
As you know I just published a book on the topic which addresses some of these issues ..for those that are interested can can more info www.thewordverve.com/Parkinsons-diva/
Have terrific day ! And for all those living with Parkinson's on daily basis there is hope and many resources available like this wonderful site!
1 October 2015 at 9:22 am
I have had P.D. for 15 years and am 58 yrs. young. I, like many others, am in search of an assisted living environment where the residents are between 50 and 70. I currently live in a place where the average age of the residents is 88. I feel isolated and very depressed. Is there ANY assisted living for a person like myself. I haven't any family. Thanks, Lori @ (408) 476-6013
3 August 2015 at 11:22 am
Assisted Living Directory Wrote
I do recommend maybe reaching out to Dr. Maria De Leon - she’s a PD expert, and I work with her a lot on my site, and I am sure she might have a good answer for you - her site is http://defeatparkinsons.com
22 July 2015 at 10:41 am
How do you convince your older brother of 69 that he needs assisted living care. The man has had Parkinson's for approximately 6 years and had the bilateral brain surgeries to help with the tremors. He is still driving and is not of rational mind. 9083426081 elizabeth
22 July 2015 at 10:40 am
While somewhat informative though known throughout the majority, this article did not answer directly the concerns regarding whether or not the majority of assisted living environments address the numerous symptoms of those effected with Parkinson's disease.
7 May 2015 at 11:42 pm
My sister has Parkinsons Disease. She is 68 years young and in great health except for the Parkinsons. She is presently in a nursing / rehab center in Long Beach NY. She needs more care than what they are able to give her.
Can you give me the name of other faciities in NY or NJ that can help her with long term care
6 May 2015 at 12:50 pm
Looking for assisted living for someone who been dianosed with parkinson for 15,years Janice
15 January 2015 at 1:28 pm
My sister is 59 and has Parkinsons. She is in assited living now, she lives with 85 year olds and up. Do you have any suggestions on any facitlies around Orland Park, Illinois that have younger people. kelly
14 October 2014 at 2:33 pm
I am looking for an Assisted Living Facility for a 64 yo with Parkinsons in NE Fl. Can you help? Pam
8 October 2014 at 6.21 am
Assisted Living Directory Wrote
Henry, something tells me that you are a) really lucky or b) full
of it. I hope it is a, but I imagine it is b.
10 October 2012
hello everybody. parkinsons disease is curable!!! in 45 days of
natural treatment, you can be ok!!! henry
10 October 2012
I have a close friend that has an abdominal aortic aneurysm that
needs to be repaired very soon.The problem is that her husband has
PD and the start of dementia.He cannot take care of himself and
she cannot take care of herself and him after surgery so she keeps
putting her surgery off.Are there places where PD people can stay
for a while under these circumstances? There is no famiy and most
of their friends have died of cancer. I have the care of my 95 year
old mom-in-law so I cannot help. In Spokane, WA. Thank you for your
29 August 2012
Assisted Living Directory Wrote
Hi Monica, thank you for writing. I would recommend getting in touch
with a pro about this - I actually used the senior care advisors
I have listed on my site for my own mother-in-law, and it was a
lifesaver. You can read about the experience in my blog, but I recommend
calling them at 866-967-9270. They are great to work with, and they'll
do a lot of the research and legwork for you. - David
21 August 2012
Help! My 90-year-old mother, who has Parkinson's disease and some
dementia, is in a nice assisted-living facility and is paying for
level 3 care; HOWEVER, the staff find her to be too demanding. Mom
is very stiff, cannot bear her own weight (requires a two-person
transfer), and needs help with everything. She was in a nursing
home for rehab after surgery and was MISERABLE there(and, frankly,
she was not getting any more care or attention than she is now getting--she
was just "warehoused" there). I am looking for an assisted-living
facility in the Baltimore, MD, area that would give her the appropriate
level of care. She is running out of long-term care insurance benefits
and money, so it would need to accept Medicaid. Can you help me
find such a place??? Monica
21 August 2012
Looking for assisted living for my sister a 60 year old parkinson
patient in Florida - Broward County (or nearby). Not average age
of 80-any suggestions? Eric
17 February 2012
Would anyone reading this by chance from Northeastern Pa.??? My
name is Dave,,I am 48 yrs.old with Young Onset Parkinsons. Assisted
living facilities for people my age??? HELP David email@example.com
28 December 2011 at 7:45 pm
Do most adult day-care places accept people with PD - to provide
a break for their caregivers - regardless of age?
10 November 2011 at 9:16 am
Can someone provide a list or even names of a couple of assisted
living places suitable for PD persons ages 50-70? I can no longer
live independently, but all the assisted living places I have checked
out have an average age of 80+
25 September 2011
Assisted Living Directory Wrote
Sherri, thank you so much for your wonderful comment - Your www.parkinsonsjourney.com
is such a candid, helpful and honest site for great information,
support, and inspiration (I love one of your little gems of inspiration
on your blog: "I am blessed and I am smiling. What are you
smiling about today?"). Thank you again Sherri!
6 February 2011
Awesome, informative site - great page for Parkinson's disease patients
and their family/caregivers. Sherri www.parkinsonsjourney.com
6 February 2011
My mother finally went into assisted living after many years of
dealing with Parkinson's, and it has been such a relief for her,
and our family.
27 January 2011
Do CNA's or caregivers at assisted living facilities get any sort
of standard training with Parkinson's, or how to the staff and caregivers
at a facility become trained to handle a Parkinson's resident? Is
it even necessary to be trained specifically for this condition
to work as a nurse in a facility?
25 January 2011