People with Multiple Sclerosis and Parkinson’s Disease – did you have upper cervical trauma before diagnosis? Please take our poll!

Upper Cervical Trauma and MS and PD Patients

Upper Cervical Trauma and MS and PD Patients

Just before setting down to work this morning I was looking through a number of facebook groups to get some inspiration. One of the ones I read is called “Multiple Sclerosis (MS) is the most disabling neurological condition”. If you are not yet a member can I suggestion you join here.

Anyhow this morning one of the members posted the following “This is very interesting – says 78 of 81 people recalled upper cervical trauma before the onset of MS and Parkinsons Disease that were receiving chiropractic care.. I know I also had this happen to me prior to onset as well.. What about you?”

You can read up a bit more on the research written by Dr Erin L Elster DC in an article called “Eighty-One Patients with Multiple Sclerosis and Parkinson’s Disease Undergoing Upper Cervical Chiropractic Care to Correct Vertebral Subluxation: A
Retrospective Analysis”. You can read the article on Dr Lister’s site.

So our question is pretty much the same a Ms Cilders – what about you?

As a point of information the Upper Cervical Spine is defined by the eChiropractic site as “two bones, the Atlas, (C1) and the Axis, (C2) at the top of the neck. Much of your nervous system passes through this vital area. This area is also the most movable area of your spine. Because of this, subluxations in this crucial area are very common.Since this area is in such close proximity to the brain, subluxations here can result in an alteration to a large variety of body functions. Much of the body’s nervous system messages flow past this point. This means that very large areas of the body are supplied by the nerves that pass through or near here.” There is more information on their site.

To facilitate this we have set up a short poll and it would be great if you could take part. If you would like to share more please use the comments box below.

Many thanks in advance.


World Continence Week 2014 – Some facts and figures!


World Continence Week

World Continence Week

As you can probably guess today marks the start of World Continence Week. The aim of the week is to promote knowledge of continence related issues including the medical conditions which cause them and the various therapies which can help treat incontinence.

Indeed as the International Continence Society who support the event say while incontinence cannot always be cured it almost always be managed, in some fashion, to make life bearable again. Right now 400 million people across the glove suffer from some kind of incontinence.

Causes can really vary. Travelling to another country means you can come up against different bacteria in food and water which may causes diarrhea or constipation. Indeed a friend of mine from university lost 40lb ( around 20kg) travelling in India for just over three months. Other causes could be stress or medications. Incontinence can also be caused by medical conditions such as multiple sclerosis or Parkinson’s disease. Interestingly women are more affected than men. It seems 25% of women over the age of 35 have continence issues while it only impacts 10% of men across the board.

As you may know incontinence comes in two main types which are urinary incontinence where there is involuntary leakage. Faecal Incontinence , on the other hand, is involuntary loss of stools or liquid through the anus.

That being said there are loads of useful tips for dealing with continence issues. Do you have any you would like to share with our readers. If so please feel free to add you suggestions to our comments boxes below.

Many thanks in advance.


Living With Parkinson’s – Deep Brain Stimulation as a treatment for early onset Parkinson’s disease. Watch this video on the life of Andy McDowell


Andy McDowell

Andy McDowell

New Zealander Andy McDowell , aged 48 and working in marketing with a young family, suffers from early onset Parkinson’s disease.

Effecting every aspect of his life Andy has opted for Deep Brain Stimulation as a treatment for Parkinson’s disease.

Click on the link below to watch the latest film from Attitude Live.

– See more at: http://attitudelive.com/blog/robbie-francis/full-episode-living-parkinsons#sthash.Ru3ZMUfm.dpuf


Difficulty swallowing? Find out how other people cope with Oropharyngeal dysphagia!

Difficulty swallowing Oropharyngeal dysphagia

Difficulty swallowing Oropharyngeal dysphagia

Swallowing disorders (or more properly called Oropharyngeal dysphagia) can occur at any stage of somebodies life. It can occur for a whole range of reasons and can even be hereditary! Oropharyngeal dysphagia is often associated with conditions like multiple sclerosis (MS), Parkinson’s disease, stokes, brain tumours, amyotrophic lateral sclerosis, Bell’s palsy, and myasthenia gravis.

In this post we are looking at the underlying causes of your swallowing problems, how they were treated and with what success.   It would be great if you could use the comments box below to share your Oropharyngeal dysphagia experience.

Current treatments include surgery, Palatal lift prosthesis, electrical stimulation as well as more general physiotherapy, using a bolus or just a change in diet.

So with that in mind we would like to think about some of the following questions about your swallowing difficulties:-

What was the cause swallowing problem?  Was it a medical issue?

What was the effect of swallowing difficulties on your lifestyle?   In particular how has it impacted your eating habits and diet?

What treatments for Oropharyngeal dysphagia did you receive and dis they actually work?

If you had to give one piece of advice for somebody who has just started to show signs of a swallowing disorder what would it be?

Thanks very much in advance.  It would be great if you could share this with other people who might be interested in sharing their experiences.

 

suzyqw I am seeing a speech pathologist. She has me doing all kinds of mouth & tongue exercises. She also taught me to turn my head to the side & point my chin down to make swallowing easier. That is what has helped me more than anything. I realize that it is common for us as ms patients. I don’t want more drugs to so call fix the problems. My food seems to get stuck in the middle of my throat. It’s random but I can tell when I start eating something if it will happen or not. I have also noticed it seems to intensify with hot foods. See a speech pathologist. They can help with swallowing.
fedupandconfused the most difficult thing is that just when you think you’ve finished with noticing things something else crops up and because its random you don’t know if it’s worth mentioning or even if it’s related and besides you don’t want to sound neurotic. I’ve not been diagnosed as yet but swallowing has been one of those things that seemed odd to keep happening. Initially i thought it was random but over the last year it’s progressed. The first time was when I ate a chunk of tuna and it got stuck I literally lost my breath and thought I would die. I was able to take a gulp of water down inbetween bringing bits back up. At the time I put it down to tuna being fairly dry. Then over time with various different foods on occasion I have managed to swallow but it felt like I’d got it stuck in my lungs and i haven’t been able to cough it up. And recently I’ve noticed I need to let my food completely cool down before I eat it which is strange as I’ve always eaten my food really hot. And now I have to let it cool down, eat a little bit, leave it then go back again when the last lot has gone down. I have also recently noticed when I swallow it seems to stick like a ball in my stomach or inbetween the osophegus and into the stomach. I find myself standing up to get it to “slide down” and once that ball/knot has gone I can start the whole eating process again. It could be coincidence and I never realised it’s another possible symptom til I saw this site.
[…] Since the dawn of humanity, one thing that motivates us on the basest level is eating. Early humans had to learn to hunt to put food in their mouths and stomachs. Modern men go through life, doing their jobs to earn the means to be able to put food on their plate. When it comes to the basic means of survival, being able to eat the food that we need in order to live is one of the very first ones that need to be met. And because this is a basic need, eating of course comes naturally to us. We eat everyday of our lives, from the very first moment we were born. Eating then involves digesting. The first process of digestion starts at the mouth, where food is ground and chew so it can be swallowed. Eating and even swallowing itself seems like such an inconsequential act, made so normally and so innocuously by every human being on earth. So what happens when a person has difficulty swallowing? […]
BonnieLass1 mj1daisy I wish I had a clue. Everyone’s MS is so different. I randomly just forget how to swallow. It’s strange that something that should be so natural suddenly becomes something you have to actually think about doing. I would say that your doctor or a second opinion would be the way to go. Some things are hard to explain when it comes to MS and weird symptoms like not being able to swallow. It is scary though and I always end up choking and throwing up because I can’t catch my breath when it happens. I wish you the best of luck.

mj1daisy I have difficulty with swallowing. It’s kind of sporadic with both solids and liquids. I had a barium swallow done and because I thought I just had acid reflux but it turned out to be “nonspecific motor in coordination of the esophagus” that was before I was diagnosed with MS so they went even ruling an MS symptom out. I wonder what they would say now???
It feels like a rock or somethings hard gets stuck and I have to stop swallowing for 30 seconds or more for it to stop hurting. Could it be esophageal spasms??
BonnieLass1 I have trouble swallowing but I have not received any treatment for it. Mine is MS relapse related and seems to happen randomly. I noticed that it was more when I was fatigued. I don’t have to be eating..I just forget to how to swallow. I panic normally then choke and throw up from it. Tears running down my face and gasping for air. Its something that I can’t seem to predict and normally when I am fatigued it happens more often. The higher dose of solumedrol that I am on the less it happens. Its something that I need to discuss in my next visit I am sure.

Glandular fever! What is glandular fever and what are your experiences with glandular fever? And more on the Epstein-Barr virus

Glandular Fever

Glandular Fever

“Your glands are up!”

How many of us can remember that phrase from our childhoods.  Indeed in each year, according to the UK’s National Health Service 1 in 200 people will contract glandular fever.  That being said, most people who get glandular fever are in their late teens and early twenties.

When I was at school one of my fellow students had a bout of glandular fever resulting in weeks if not months off sick.

So I felt that it could well be useful to produce a brief guide to glandular fever as part of our series of informational blogs.  As with all our blogs your participation is most welcome.  It would be great to hear about your experiences of glandular fever and its impact upon your life and health.  This will, we hope, provide support for others in a similar situation.

The majority of people who develop glandular fever do so in a period of around two months after contracting the Epstein-Barr virus.  This is perhaps the most common virus which has been covered in a previous blog here https://patienttalk.org/calling-everyone-with-an-autoimmune-condition-have-you-ever-been-infected-with-the-epstein-barr-virus/.  I think the comments section is of particular value.

The main symptoms  of glandular fever are:-

1)                       Fever.  As the name suggests of course.  In this case it is likely to be over 38ºC or                           100.4ºF (in old money).

2)                       Swollen nodes or glands in the neck.  Hence the name glandular fever.

3)                       Sore throat.

4)                       Fatigue.  You can read more about the impact of fatigue by checking out our recent patient experience blog.  https://patienttalk.org/fatigue-like-wet-cement-exploring-the-difference-between-tiredness-and-fatigue/

In some cases there are a number of rarer symptoms.  These can include jaundice and swollen adenoids.  Jaundice is more common with people in the older age brackets who contract glandular fever.

Normally the infection lasts about two or three weeks, starting to get better after around one week albeit slowly.  That being said the fatigue may last for up to six months after the other symptoms have disappeared.

In milder forms of the fever treatments are normally painkillers which also help fight the inflammation.  In more serious cases hospitalisation may be required.

It is worth noting that there does seem to be a link between Epstein–Barr viral infection and contracting a number autoimmune conditions and other illnesses.   In particular Parkinson’s disease,  Lupus (https://patienttalk.org/?tag=lupus), rheumatoid arthritis (https://patienttalk.org/?tag=rheumatoid-arthritis), and multiple sclerosis (https://patienttalk.org/?tag=multiple-sclerosis).

So over to you.  We are always really interested in the experiences of our readers of their medical conditions.  It would be great if you could share your glandular fever story in the comments box below.

You might care to consider the following questions while sharing your story:-

a)                        At what age did you develop glandular fever?

b)                       What were your symptoms?

c)                       Do you know what the cause was?

d)                       How you were treated and how successful were the treatments?

e)                       Finally, if you contracted the Epstein–Barr virus did you have any complications afterwards such as an autoimmune condition?

Please just think of these questions as a guideline.  It would be great if you could share anything you think may be of interest about glandular fever.

Thanks very much in advance.