SunnyStrong

No Apologies | No Excuses | No Regrets

Skip to content

SunnyStrong
Life as We Know it
Radicava Ridiculousness
Adventures for SunnyStrong
The List
Chronicles of Phil
Ambien Musings
SunnyStrong Store
Erasmus Family Monat

Search

Search for:

Living Loudly and Laughing with Dysarthria

November 29, 2018 / sunnystrongblog

I can hear the ALS in my voice, but I appreciate everyone’s lies that “it’s not that bad”.

via Living Loudly and Laughing with Dysarthria

by Dagmar Munn

Share this:

Share

Twitter
Facebook
Email
Print
LinkedIn
Pinterest

Like this:

Like Loading...

Related

Life as we know it

ALS - SunnyStrong, Awareness, Erasmus, Reading

Post navigation

← The End of the Journey

11.30.18 November is National Family Caregivers Month →

Leave a Reply Cancel reply

Enter your comment here...

Fill in your details below or click an icon to log in:

Email (required) (Address never made public)

Name (required)

Website

You are commenting using your WordPress.com account. ( Log Out / Change )

You are commenting using your Google account. ( Log Out / Change )

You are commenting using your Twitter account. ( Log Out / Change )

You are commenting using your Facebook account. ( Log Out / Change )

Connecting to %s

Notify me of new comments via email.

Notify me of new posts via email.

Follow Blog via Email

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 1,967 other followers

Latest Blog Post

12.3.19 Cheaters for Everyone December 3, 2019

Blog Stats

79,781 hits

Instagram

having #amyotrophiclateralsclerosis has allowed me many, many experiences and today ranks high on the list 🦈 🦈🦈 one thing is for certain: I can not breathe under water, no matter how many times I tried 🤷🏻‍♀️🤦🏻‍♀️ #iamnotafish #minorpanicattack #sharksnorkeling #notseallike #scubasteve #perthfecta2019 #alssymp #alsmndsymp #als #mnd #alssucks #sunnystrong #lougehrigsdisease #motorneuronedisease #endals #kickals #wewillcureals #axeals #talkalstome #alstexas #iamals #fwtx #fwxtbloggers #nowhiteflags

i know many of you have been concerned about this... #perthfecta2019 #drpepper #fiend #peepcarlie #advocare #youaremysunshine

#alssymp #alsmndsymp C80 - Akshay Kulkarni Background: Terminal care includes alleviation of the psychological distress and management of the physical symptoms. With appropriate palliative care services, over 90% of patients with motor neurone disease (MND) can achieve a peaceful death (1). The terminal phase including symptom burden and interventions required has not previously been described in an Australian context. Objectives: To evaluate and describe the management of patients presenting MND in the terminal phase (last seven days of life).

#alssymp #alsmndsymp C78 - Samar Aoun Background: Breaking the news of the diagnosis of MND is challenging for both neurologists and patients. The manner in which the diagnosis is imparted is one of the most sensitive steps in palliative care and it has implications for the way patients and their families move on from the devastating news of their diagnosis to the actions required for support throughout the illness trajectory. Objectives: To identify the patients' and their family carers' perspective on receiving the diagnosis and compare it to the neurologists' perspective on delivering it; to determine which aspects of breaking this bad news were associated with greater satisfaction with the way the diagnosis was delivered; and to highlight which aspects need to align better with best practice.

#alssymp #alsmndsymp C77 - Susan Mathers Background: Models of care for people living with progressive neurological diseases are active and evolving constructs—part intuitive response to gaps in service delivery and part 'workarounds' for barriers created by poor policy or practice. Increasingly, patients as consumers now sit, or should sit, at the centre of this design process. The speed of change, the need for multi-dimensional assessment and a coordinated response from both health and disability sectors have meant that services for people with MND have led the way towards better comprehensive care for people with progressive neurological diseases. A joint statement from Palliative Care Australia and the Neurological Alliance Australia called for 'an education and support program for palliative care staff on neurological conditions including peer support from specialist centres and education on palliative care for people living with neurological conditions, their family and carer/s' (1).

#alssymp #alsmndsymp C67 - Dorothee Lule Background: Pain is reported in up to 70% of patients with Motor Neuron Disease (MND) (1). Shoulder pain is a distressing but under-reported and poorly managed symptom in people with MND. Strong opioids are often required resulting in a range of side-effects. Suprascapular nerve block (SSNB) is a safe and effective therapy for chronic shoulder pain in a range of conditions including rotator cuff disease and following stroke (2). To date there have been no trials examining the role of SSNB in shoulder pain in patients with MND. Objectives: This study aimed to quantify the prevalence of shoulder pain in people with MND and assess the efficacy of suprascapular nerve block (SSNB)(bupivacaine 0.5%, methylprednisolone 40mg, 11 mls injection) for the management of this symptom.

Twitter #endALS

SunnyStrong

SunnyStrong

Search for:

Archives

Archives

Blogs I Follow

#SarahsSoldiers
CAPTIVATING!
Stand Up 2 ALS

Search for:

Archive

Archive

Blog at WordPress.com.

#SarahsSoldiers

Inclusion is limitless

Living with ALS

Send to Email Address Your Name Your Email Address

Cancel

Post was not sent - check your email addresses!

Email check failed, please try again

Sorry, your blog cannot share posts by email.

%d bloggers like this: