Hey there friends! Today I’d like to share my gift ideas for your friends and family who suffer from a chronic illness. If your loved one suffers from lupus, lymes disease, hashimotos, POTS, fibromyalgia, MS, or any other chronic illness causing pain and fatigue, then this is the video for you! I have a bunch of ideas for holiday/Christmas presents for your loved ones!
Have you got MS? how would you know? how could you tell if you have Multiple Sclerosis? These are 5 signs that I got before I was diagnosed with M.S. that I can now see are common among my fellow warriors.
Kayla Schneider
“Getting diagnosed with multiple sclerosis, at first you feel your health is being taken from you,” Kayla Schneider said Monday.
A newly FDA-approved drug tested at the University of Cincinnati is helping her take it back.
Multiple sclerosis is a disease in which the body’s natural defenses begin attacking its central nervous system, potentially causing a wide range of physical and mental symptoms that can cause lifelong disability and even death.
For Schneider, those symptoms included pain behind her eyes and a partial loss of vision. She began researching her condition in hopes of locating a solution, which is when she learned about Ocrevus.
UC Health helped complete a study of the drug, which Dr. Aram Zabeti said is one of a wide variety of treatments available for people with multiple sclerosis.
Read the full article here
Dysarthria
Dysarthria is difficulty speaking caused by brain damage or brain changes later in life.
A child or adult with dysarthria may have:
slurred, nasal-sounding or breathy speech
a strained and hoarse voice
excessively loud or quiet speech
problems speaking in a regular rhythm, with frequent hesitations
“gurgly”-sounding or monotone speech
difficulty with tongue and lip movements
difficulty swallowing (dysphagia), which may lead to constant drooling
As a result of these problems, a person with dysarthria may be difficult to understand. In some cases, they may only be able to produce short phrases, single words, or no intelligible speech at all.
Dysarthria doesn’t affect intelligence or understanding, but a person with the condition may also have problems in these areas. Speech problems can also affect social interaction, employment and education.
If you or your child has dysarthria, you may find it helpful to see a speech and language therapist (SLT). Ask your GP about your nearest speech and language therapy clinic.
The muscles used for speech are controlled by the brain and nervous system. Dysarthria can develop if either of these is damaged in some way.
Dysarthria can either be:
developmental – when it occurs as a result of brain damage before or during birth, such as in cerebral palsy
acquired – when it occurs as the result of brain changes later in life, such as damage caused by a stroke, head injury or brain tumour, or a progressive condition such as Parkinson’s disease or motor neurone disease
Dysarthria in children is usually developmental, while dysarthria in adults is often acquired, although both types can affect people of any age.
Whether dysarthria will improve with speech and language therapy depends on the cause and the extent of the brain damage or dysfunction. Some causes remain stable, while others may worsen over time.
Speech and language therapists can carry out an assessment to determine the extent of the speech problem. They may ask you or your child to:
make different sounds
talk about a familiar topic
count numbers or recite days of the week
read a passage aloud
The therapist may also want to examine the movement of the muscles in the mouth and voice box (larynx), and may wish to make a recording.
A speech and language therapist will work as part of a team of healthcare professionals that includes people from the health, social and voluntary sector.
The therapist will try to improve and maximise your or your child’s ability to talk. They’ll help you find different ways of communicating, and will assist you and your family in adapting to your new situation.
They may recommend:
strategies to improve speech, such as slowing speech down
exercises to improve the volume or clarity of speech
assistive devices, such as a simple alphabet board, an amplifier, or a computerised voice output system
Some speech and language therapists may be able to carry out or refer you for a specialist assessment of communication aids, including computerised voice output systems. For some people, these devices can be used alongside or instead of speech to help them communicate.
See your local speech and language therapist if you’re interested in having an assessment. They’ll be able to provide further information and advice about arranging an assessment and trial of a communication aid.
There’s no guarantee that speech and language therapy can improve the speech of everyone with dysarthria. Whether treatment is successful will depend on the extent and location of the brain damage or dysfunction, the underlying condition causing it, and the individual’s personal circumstances.
The following advice may help you communicate more effectively if you’ve got dysarthria or if you’re communicating with someone with the condition.
If you have dysarthria, you may find it helpful to:
take a good breath before you start speaking
put extra effort into stressing key words
speak slowly, saying one word at a time if necessary
leave a clear space between each word
make sure you’re in the same room as the person you’re talking to and face them
attract the listener’s attention – for example, by touch or calling their name before you begin talking to them
keep sentences short and avoid long conversations if you’re feeling tired
reduce background noise – for example, switch off the TV or radio
repeat yourself if needed
If you’re speaking to a person with dysarthria, you may find the following advice helpful:
reduce distractions and background noise when you’re having a conversation
look at the person as they talk
after speaking, allow them plenty of time to respond – if they feel rushed or pressured to speak, they may become anxious, which can affect their ability to communicate
be careful about finishing their sentences or correcting any errors in their language as this may cause resentment and frustration
if you don’t understand what they’re trying to communicate, don’t pretend you understand as they may find this patronising and upsetting – it’s always best to be honest about your lack of understanding
if necessary, seek clarification by asking yes/no questions or paraphrasing – for example, say: “Did you ask me if I’d done the shopping?”
Fibromyalgia and multiple sclerosis
As some readers will know my background was conducting market research with people who suffer from various medical conditions. The main ones were in fact diabetes, cancer, rheumatoid arthritis and multiple sclerosis.
It was only when we started working with a lot of social media in around 2006 that I became commented with members of the fibromyalgia community.
You might also aware that we run various communities on Facebook and Twitter where we encourage discussion on a whole range of subject which are important to people with various conditions.
Over the years there has been a number of questions which come up from time to time. One of which is the relation between multiple sclerosis and fibromyalgia. After all having more than one autoimmune condition is not uncommon.
Indeed one of our members posted this on our page MultipleSclerosisTalk a few days ago “Hi. I just had a quick question. I am currently diagnosed with Fibromyalgia but with this last relapse, I have noticed many new and worsening symptoms, and I’m worried it may be more related to MS. I have a appointment with a neurologist on Tuesday and I was wondering how I should approach this with him. I’m really sick on this because I feel like they don’t really listen to how you feel sometimes. Thank you for any advice.”
Firstly if you do have any advice for this reader please feel free to use the comments box below to share your ideas.
Secondly I’m wondering how common this situation actually is? So I thought it would be useful to run the following poll to see how our readers have been diagnosed in the past.
It would great if you could take part below.
| Bonnie2405 | I think fibro me CFs lupus Lyme and ms are all the same, like polio, some get it small some get it big. If ritbixin works, they may have a cure for all of it, the virus attacks the autoimmune system that goes into overdrive, ritbixin removes all B cells wipes long term memory and the mitochondria has to start building healthy cells all over again freshly removing the virus from our bodies. The drug will be ready within three years are u ready to start recommending it DR because patients are desperate and want to try it they are that desperate. |
| traceychace | Hi my name is Tracey, I was diagnosed with fibro about 3years ago after suffering for many years before hand. My Dad had MS, my Mom has always said that she thought that’s what I have more than fibro. My neurologist said that I deffinatley don’t have ms as there is no connection & its not hereditary. My health seems to be deteriorating quite quickly, does fibro usually deteriorate quickly? |
| emily89 | My mom was diagnosed with ms in her 30’s & im 24 I was just diagnosed with fibromyalgia, my older sister also has fibromyalgia. All of our symptoms are similar the only difference is that in an mri my mom has visible plaque on her brain. |
| anarivera | Hi my name is ana rivera and i have fibromyalgia and i just cant find thevright medication can someone please help !! |
| RebeccaRaeThomas | Go in with a detailed history of all symptoms over time and voice your concerns. Be assertive in getting additional tests. Don’t let them dismiss your concerns. |
Barb MacLeod – 1 year ago
Diagnosed with IDDM (Type 1 or Insulin Dependent Diabetes Mellitus) in 1984; Diagnosed with RRMS (Relapsing Remitting Multiple Sclerosis) in 2015. My sister has Type 2 Diabetes diagnosed in 2012. My mother has Fibromyalgia diagnosed in 2014. It is tough being female in our family ! 🙂
Ileana Peters – 2 years ago
I was diagnosed with MS in 2011. i have a cousin that has fibromyalgia. Our symptoms are very similar . Its crossed our minds, she might have been misdiagnosed.
Carole mellor – 3 years ago
I was diagnosed with MS in 2008 and just been diagnosed now with Fibromyalgia the symptoms are very similar
linda Barlow – 3 years ago
Iv just fibormyalgy it’s a very painful ms what symptoms for that.