The MS Community

As much as this week should not be high stressed, it is. Mostly because next week is crazy hectic for me with school. So, with that being said, I am going to talk once again about Multiple Sclerosis (MS), statistics, and the common struggles people living with MS go through.

Picture1Who is affected?

MS affects >2.3 million people worldwide, with >400,000 of those being in the US. There are more females than males affected with this disease and the majority of people with MS are diagnosed between the age of 20-50  years old, with Caucasians being the most commonly affected. MS is not a “reportable” disease, which means that the government does not require physicians to inform any central database when they make the diagnosis. Without this report, there is no easy way to count how many people have MS. Though MS has not been proven to be genetic, researchers believe genetics play a role because the risk of being diagnosed with the disease increases 2.5-5% when a 1st degree relative has MS. (From a personal standpoint, I think genetics are involved because my grandpa had myasthenia gravis and his sister and her son both have MS, so clearly there is a messed up gene somewhere!)

Major Health Problems

MS presents itself in every individual differently. Some of the major complications seen with MS are depression (42%), insomnia, fatigue, bowel and bladder problems, gait deviations, spasticity, weakness, vision problems, paresthesias, dizziness, sexual dysfunction, pain, dysphagia/dysarthria, breathing problems, hearing loss, headaches, tremors, seizures, and cognitive and emotional changes. Another difficulty people living with MS encounter is the price of the medications. Without health insurance, it is basically impossible to afford MS medication (Examples: Copaxone: $4,414 for a 10 week supply, Avonex: $9,061 for 1 month supply). Even with insurance it can be very pricey and the person’s deductible is usually met within the 1st month of the insurance year.

Picture2

Stereotypes/Misconceptions

Here is a list of stereotypes and misconceptions with MS

·   MS is a death sentence

·   People with MS should avoid the gym – truthfully, people with MS need exercise just like any non-affected individual

·   Women can’t get pregnant/can’t breastfeed – there are different medications you cannot take if trying to get pregnant/breastfeeding, however, there are medications that are safe – your fertility is not affected

·   Everyone is affected the same – no 1 person is affected the same, making it hard to treat

·   People with MS will need a wheelchair/can’t walk – FALSE!! (Hi! I can walk!)

How can Physical Therapy Help?

We can increase strength and endurance, improve gait and posture, prevent contractures, gait training with or without an assistive device, and pelvic floor strengthening to help with bowel and bladder problems. Working on all of these will help the person return/remain independent in their everyday lives.

What is offered in the Community

Depending on your location, there are support groups in person (MS on the Red in Louisiana), online (MSconnection.org, MyMSTeam, Facebook pages), or over the phone that can give support to people with MS and their caregivers. The National MS Society website is a great place to look if needing information on MS.

How can you get involved?

If you want to participate in raising money or awareness to MS, you can participate or volunteer in any, or all, of the following:

  • BikeMS
  • MS Walk
  • MuckFestMS

The National MS society website, http://www.nationalmssociety.org/, will be your best friend with any information regarding MS, ways to donate, ways to volunteer, or ways to raise awareness.

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Feel free to contact me at petrickt13@gmail.com with any questions you may have regarding MS!

References:

http://www.nationalmssociety.org/

http://www.moveforwardpt.com/symptomsconditionsdetail.aspx?cid=92d87e05-dcb7-4cae-9c0a-4fcbde1b1c02

https://www.copaxone.com/shared-solutions

http://psycnet.apa.org/journals/rep/54/1/116/ –injection anxiety

http://www.health.com/health/gallery/0,,20639276,00.html/view-all -ms misconceptions

http://www.mslivingsymptomfree.com/blog/4-Most-Common-MS-Stereotypes-And-Why-They-Are-Wrong.htm

https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=6&ved=0ahUKEwj_yZSM_PHRAhXCwVQKHYDhDsUQFghDMAU&url=https%3A%2F%2Fmultiplesclerosis.net%2Fliving-with-ms%2Fdisability-stereotype%2F&usg=AFQjCNHJOxCd-ND1n4sTuaTIxWQAEclWVg – Disability etiquette

https://multiplesclerosis.net/ms-in-america-2013/initial-ms-symptoms/

 

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