Multiple Sclerosis! You are not alone – some famous people with multiple sclerosis! Who would you add?

Tie One on for Multiple Sclerosis


I discovered yesterday, somewhat to my surprise, that I have been blogging about healthcare related issues since 2006.  And then, as today, one of my main areas of focus was multiple sclerosis and providing support for PwMS.

One thing I noticed during those early days (and it is trend that is still with us) was discussion about celebrities who have lived or are living with multiple sclerosis.  I always suspected that this was due, in part, to the curious status of MS being a minority condition when compared with, say, diabetes but still with a substantial prevalence.  It has been suggested that there are nearly 2.5 million people across the globe who suffer from multiple sclerosis.  If we take into account family and supporting friends then the MS community is pretty substantial.

But that does not stop many with multiple sclerosis feeling more than a bit of isolated.  This causes a wholly natural interest in other people with MS.  Both in our local communities but also in celebrities worldwide.

The purpose of this blog to share a few of the famous people who have or have had multiple sclerosis who I feel have made a contribution to the MS community in some way.  This can be directly or indirectly, of course.  Second is to ask you to contribute your suggestions of celebrities who have helped the multiple sclerosis awareness cause.  So here are my top five.

a)      Montel Williams.  The famous American talk show host was diagnosed with MS in 1999.  Since then he has pioneered social media as a way of getting the MS message out. In 2000 he founded the MS Foundation which promotes awareness and research.  You can check out his web site for more information http://www.livingwellwithmontel.com/Home.aspx./

b)      Jacqueline du Pré.  The world famous cellist died at the age of 42 in 1987.  She was diagnosed with MS in 1973; a couple of years after the first symptoms appeared.  Important not just for her musical work but because her struggle with MS helped to raise the profile of the condition with the British public.

c)       Richard Pryor.  The break through US comedian who almost single handily invented the new generation of stand-up humour in the seventies and who died in 2005.  Importantly he used his web site to talk about the condition and thus raised awareness.

d)      Jack Osbourne, an English media personality, was diagnosed with MS last year (2012) in his mid-twenties.  A user of stem cell therapy (https://patienttalk.org/?p=1058) his performances on Dancing with the Stars have inspired a new generation.

e)      Heinrich Heine (1797-1856) was a famous German romantic poet.  In truth the MS diagnosis is not certain but he is included in my list to show that MS is nothing new.    To get a feel for his poetry, albeit in English translation, please have a look at http://www.poetry-archive.com/h/heine_heinrich.html.

So who has inspired you?  Please feel free to use the comments box below to share, who in your view, has help the multiple sclerosis community and why.

Thanks very much in advance.

 

SherrieGoldberg Aaron Solowoniuk, the drummer for Billy Talent. After being diagnosed at 24 he quit his job to be a full time drummer. After he had the first song on their self titled album to allow everyone to know what MS patients experience everyday. He started a charity concert which was called F.U.M.S. and a blog site for those in their younger years suffering with MS. Between that and their anti-bullying campaign I have the utmost respect for him and the band.
Kathy Doiron If I’m inspired at all by a celebrity, it’s Shemar Moore, who plays as large a role as he can in this battle on behalf of his mom: “When you’re a kid, your parents are invincible,” added Moore. “I always thought of her as my super mom and MS is her kryptonite. She’s cracked a little bit, but I always say that she’ll never break.” Shemar has watched MS steal more and more of the mama who raised him, and is using his celebrity status to fight her enemy. I’m inspired by his dedication to his mama – by the fact that he has never let his celebrity status lessen what he feels for her. Having said that, however, I have to agree with the person who pointed out that celebrities, while not having an easier time with the disease, do have the resources that most of us don’t have. I’ve struggled to find someone to mow my lawn once every ten days or so, with no success. One of my pastors thought he’d found someone to do it, but it turned out not to be the case. I can no longer shovel snow or care for the lawn, so it would be a huge blessing in my life if I could just offer someone enough money to make it desirable for someone else to do those tasks. As a single woman struggling to work full-time with this fatiguing disease, it’s frustrating to break down and ask for help, and finding no-one willing or able to help. I’m not implying that celebrities don’t struggle as much as the rest of us, but oh, it would be nice to have the financial resources!
Missy Reed MelanieJohnson2  u inspire me. I was a single mom with 4 kids and worked 3 jobs, but I was not diagnosed until they were grown and had kids of their own. So I could not imagine doing what you do everyday. My hat goes off to u
stewartlv Country Music singer Clay Walker who also has MS
BevWashington Many of the Osmond family have it too.
tflinn75 Annette Funicello (sp?)…her story is pretty inspiring…especially the way her husband stayed right by her side and cared for her himself right until the very end.
Just have to Say Janice Dean (Fox Weather person)
Just have to Say JayRaymond Nick Cannon does not have MS.  He has a different autoimmune disease.
MelanyKimblerFarr Neil Cavuto – he memorizes his reports for the days that his eyes act up and he can’t see the teleprompter.
BarbaraSkinner NASCAR driver Trevor Bayne. DX in Nov 2012. Only 22 at the time. Plans on to continue driving as long as he is able.
MelanieJohnson2 People with money.. who can afford proper care and assistance do not inspire me.
I managed all alone, on my own living with RRMS  I am raising 3 kids as a single mother working on a dairy farm to pay my bills and soothe my soul.. and all with little or no Health Care.
I am my own inspiration!
AmyGates clay walker
RuthDickinsonShroyer Also Alan Osmond.
TijanaEder Clive Burr – the first drummer of Iron Maiden. Passed away in march this year 🙁 R.I.P!
jmartella
j
Don’t forget Teri Garr or Annette Funicello (sorry for the misspell) on sweet Annette….
Ozziesmom32 Josh Harding Minnesota Wild 🙂
michelesgibbs Chris Wrght of the Dallas Mavericks! He was my first inspiration to beat this! He was once in a wheelchair and overcame it and became a pointguard
lkpetzoldt01 I was diagnosed in June of 03.  I was having a problems with severe headaches.  So they did an MRI an found white spots in the frontal lobe of the brain.  Dr. sat down by my bed an said I believe you have MS..first reaction what “WHAT”.  Couldn’t believe it. So they did a spinal tap to confirm it in the spinal fluid..and said Yes!  I would like to Thank all my friends an mother for all their support.  They have been amazing an nothing less!  I read the book BlindSided by Richard Cohan.  Very helpful! An Trevis Gleason on facebook has also helped so much with Any Questions!  I find the change of the seasons affect me the most with some joint pain an fatigue.  I have started a Jazzercise Class to give me more cardio, balance an strength, the ladies are wonderful.  I keep in close contact with some girlfriends from High School, Yes even at this age.  They seem to always know the correct things to say..AND mean it! Yes I do have fatigue, joint pain on the right side.  Thank you so much for posting this!  Sincerely, Linda K. Petzoldt
KatrinaScottSmith Ann Romney!  She is such an inspiration to me.
TootseLee Exene Cervenka – X (the band.)
Chrissy Amphlett R.I.P – The Divinyls
JayRaymond Nick Cannon
blogger1962 Dancer/Actress Lola Falana
Janet Fishman Palmer Lola Falana.
ellen79 Annette Funicello
KatrinaScottSmith In reply to KarenPowell1.KarenPowell1 I LOVE Ann!  I have so much in common with her, except my husband isn’t a wealthy politician and I only have 4 boys. 😉
KatrinaScottSmith In reply to InezGilbert.Joyce Pharis InezGilbert MrsKarrieT My maternal grandmother had MS, died in 1947 at age 24 (my mother was only 2).  My older sister had MS, diagnosed at 19, died in 1999 at age 33.  I am 43 and was just diagnosed.  I plan to kick this thing in the REAR! 😉
KatrinaScottSmith Ann Romney!
Linda Marshall In reply to InezGilbert.Joyce Pharis InezGilbert MrsKarrieT
My Daughter was first dx when she was 20 she is doing very well she has not let it get her down she is always in the sun.runs 5 miles a day weather permitting also eats healthy!!  I was dx in 1996 I was born in Pa we both lived in Miami then moved to DE
Joyce Pharis In reply to InezGilbert.InezGilbert Joyce Pharis MrsKarrieT   I was told it was thought to be more about location than genes but the ones who think this obviously don’t have kids with MS. I asked my neuro how many people in my area (central Illinois) has MS. He said many more than I think.  To me its too much of a coincidence that my daughter would have it too.
KarenPowell1 Although our faith beliefs are different, I have been truly inspired by Ann Romney – this is the information copied from Wikipedia:
Ann Lois Romney (née Davies; born April 16, 1949) is the wife of American businessman and politician http://en.wikipedia.org/wiki/Mitt_Romney, who was thehttp://en.wikipedia.org/wiki/Republican_Party_(United_States) nominee in the http://en.wikipedia.org/wiki/2012_United_States_Presidential_Election. From 2003 to 2007 she was http://en.wikipedia.org/wiki/First_Lady of http://en.wikipedia.org/wiki/Massachusetts while her husband served as governor of the state.
She was raised in http://en.wikipedia.org/wiki/Bloomfield_Hills,_Michigan, and attended the private http://en.wikipedia.org/wiki/Cranbrook_Kingswood_School there, where she dated Mitt Romney. She converted to http://en.wikipedia.org/wiki/The_Church_of_Jesus_Christ_of_Latter-day_Saints in 1966. She attended http://en.wikipedia.org/wiki/Brigham_Young_University (BYU), married Mitt Romney in 1969, and in 1975 received a Bachelor of Arts degree in French.
As First Lady of Massachusetts, she served as the governor’s liaison for federal faith-based initiatives. She was involved in a number of children’s charities, including http://en.wikipedia.org/wiki/Operation_Kids, and was an active participant in http://en.wikipedia.org/wiki/Mitt_Romney_presidential_campaign,_2008.
Romney was diagnosed with http://en.wikipedia.org/wiki/Multiple_sclerosis in 1998 and has credited a mixture of mainstream and alternative treatments with giving her a lifestyle mostly without limitations. In one of those activities, http://en.wikipedia.org/wiki/Equestrianism, she has consequently received recognition inhttp://en.wikipedia.org/wiki/Dressage as an adult amateur at the national level and competed professionally in http://en.wikipedia.org/wiki/Grand_Prix_Dressage as well. In 2008, she was also diagnosed with http://en.wikipedia.org/wiki/Ductal_carcinoma_in_situ, a non-invasive type of http://en.wikipedia.org/wiki/Breast_cancer. She underwent a http://en.wikipedia.org/wiki/Lumpectomy in December of the same year and has since been cancer-free.
She and husband Mitt have five sons, born between 1970 and 1981, and twenty-two grandchildren.

Multiple Sclerosis and the Future. Are you upbeat about the future for People with MS?

The future of multiple sclerosis

The future of multiple sclerosis

This year I will have been working in the patient information over for ten years. For those 10 years one of my major areas of interest and research has been the views of the multiple sclerosis community.

One thing I realised was that I know lots about the current situation (and a bunch of stuff about the past) but I have not explored what PwMS think about the future.

So January struck me as a good opportunity to start a conversation asking a very simple question. “Are you upbeat about the future for People with MS?”

There are two ways you can help. First it would be great if you could take the poll below. It asks the question – “Thinking about today are you positive or negative about the future for the multiple sclerosis community in general and yourself in particular?” Secondly please use the comments section to tell us a bit more about how you see the future for the MS community. Good or bad. Or maybe a bit of both.

Thanks I really look forward to reading you comments and ideas.


Life with Multiple Sclerosis. Some tips about living with MS from People with MS.

Multiple Sclerosis Support

Multiple Sclerosis Research

A month or so ago we asked the readers of our Facebook page MultipleSclerosisTalk to share their answers to the question “Have you any advice for somebody who has just been diagnosed with multiple sclerosis?”. The results were so successful we decided to share then om a VoxPop blog called Water and Walking.

A couple of days ago we decided to follow up the blog post with another asking People with Multiple Sclerosis (PwMS) what tips they would like to share about living with MS with our readers.

The results were incredible so we decided to share a few with you. We have got nearly 500 so far so can’t include them all. It would be great if you wanted to share your ideas and suggestions in the comments section below.

Christina’s was the most popular when she said “Take a deep breath and always look forward never backwards. Times will get hard occasionally but you must be grateful for the good times. Never give up and fight for your independence and never ever give up. You got this, even if you think you don’t.” Traci supported this saying “You are stronger than you think you are”.

Laura emphasised the need to take control through research 2Research, research, research. Avoid the DMD’s because they don’t work! MS can be controlled by diet. Food is our medicine! Check out Swanks diet for MS. I have been following this for 9 months and I’m feeling great. I also take LDN and supplements. Recovery and healing are possible if you take the right road. A strong positive mindset is also key….”

Isla said “find yourself a holistic doctor”.

Jackie was very practical “Heat is your enemy. Try to stay cool. Your body will start to feel better once you cool down.”.

Sharri had lots of great ideas “Don’t feel bad for feeling bad. Keep your sense of humor. Increase your sense of humor. Join an MS / chat group, local support group and fun www.meetup. com groups.
Nutritional supplements also help you feel better and the meds to work better. Eat the fish and spit out the bones of what people say who do not have MS. Nurture and do kind things for yourself.
Know that you will have good days, great days, bad days and horrible days. ”

Like many of our readers Christina felt we should listen to our bodies ” Don’t let MS change who you are! Biggest challenge was learning to listen to my body, cognitive issues, and the MS Fatigue (which is not the normal fatigue people have) If you can learn to listen to your body, eat healthy and exercise and most important stay true to who you are and maintain a positive attitude (you may have MS but MS does not have you or define you) then you will see MS becomes more of the “Ah” that is why I feel this way or that makes sense now and can move forward. I took it as a positive when I was diagnosed (March 2012) as I honestly thought I was losing my mind (cognitive is bad for me) and I did not understand the fatigue I was having. It was a relief to know there was a reason for it and now I know what to do to help with these issues. Attitude is the key to MS success (as with any illness). I find if I keep moving I’m fine. It is when I give in to MS that I get bad. It is a choice you have to make every day if you are going to get up or let MS win. I REFUSE to give in to it. There are many days I forget I even have MS and again, that is a choice I make. Make sure your family and friends are aware that you are still you and that YOU will let them know if you cannot do something as only you know how you feel and your limitations (which you learn as you go but always try). I have amazing support with all of my family and friends. I asked them to not treat me any differently and I promised I would let them know if I needed help (which I admit is hard for me to ask for any help, I’m very stubborn) but there are things you will need to say “hey, my body does not react well if I did this, can you help”. You will be amazed by taking one day at a time, one breath at a time how well you will be able to handle your MS and live life just like you did prior to your diagnosis. Research the different types of MS and make sure you understand which level you are diagnosed. Unfortunately, there are more severe cases of MS and I pray for those with the more severe cases. So we cannot dismiss what we have but we can listen to what our body tells us and make the right choice to get up and live! Prayers as you begin learning your new path in life.”

Finally Georgia went the other way and said “Don’t listen to other people’s “advice” that don’t have MS and have absolutely no idea what you may be going through! Only you know your body, no one else does!”

So what do you think about these tips? Do you have any you would like to share? If so please do use the comments section below to add your ideas.

Thanks very much in advance.

Multiple Sclerosis! What are the life lessons have you learnt from being diagnosed with MS. A new Vox Pop.

Multiple sclerosis awareness

Multiple sclerosis awareness

As I’ve mentioned before one of the main purposes of this blog is to allow people with multiple sclerosis to share their experiences of living with the condition.

We hope that PatientTalk.Org will give an opportunity for people in the MS community to learn from their peers and gain support in the battle with multiple sclerosis. As well we hope to help introduce the challenges of life with multiple sclerosis to people who are unaware of its effects on life and health.

This blog seeks to do both. It is part of our Vox Pop series where we provide a voice to people with MS and give a podium for multiple sclerosis awareness.

In this case we use one of our Facebook Pages MultipleSclerosisTalk to ask our readers and contributors a very simple but very important question:

“What have you learnt since being being diagnosed with multiple sclerosis?”

A very open yet key question for PwMS.

I have to say we were overwhelmed by the responses to the question for which I am very grateful. We thought it would be of great value to the Multiple Sclerosis community to share just a few of the comments made!

“I’ve learnt to appreciate really simple things in life”

“Everybody’s ms is different. Thankful for what you’ve got there people worse off than yourself x”

“That people don’t give a Crap because most of us don’t look sick. Nobody says oh, do you need anything, can I come and help. On the good side, if there is one, how to fight and claw your way through life, not to be a quitter. You can only depend on yourself”

“That people don’t give a Crap because most of us don’t look sick. Nobody says oh, do you need anything, can I come and help. On the good side, if there is one, how to fight and claw your way through life, not to be a quitter. You can only depend on yourself”

“That im stronger then i thought”

“Everyone’s MS is different, you find out who your real friends are ,do what you can do when you can do it and don’t over do it.”

“How much it can take from you and destroy, your marriage of 34yrs, job, family and friends. That everyday you need to get up and fight for what you want.”

“Don’t plan your life out! Just enjoy each day as it comes. If its bad, then tomorrow is another day. Always listen to what your body is saying xxx”

” If you need help – ASK! From someone who used to do it all I have become humble and asked for help when I need it!”

“To have more patience, nobody gets MS, but an MSer!”

“That I had been misdiagnosed for over 30 years. Seems I had symptoms as young as 16. When I would be on my feet and legs for extended lengths of time. I would get horrible muscle spasms and even lose use of my legs for periods of time. When I had my first child, my legs went into spasms and pulled to my sides as soon as the Dr put me to sleep after 22 hrs of horrific labor. He came in several times afterwards and checked my legs and walking ability. He told my husband that he’d never had that happen before. If I had anymore trouble see a neurologist. That was 33 years ago. I experienced relapses from time to time. But, was told I have Fybromalgia, osteoarthritis and degenerative joint disease. Which.and all of those I do have. But, the MS was overlooked by these other complications. My MRI showed multiple lesions my new Neurologist said. How long have you had these symptoms. I replied since I was 16 and worked a 16 hour double shift as a nurse’s aid. When I finally sat down. My legs went into spasms and I could walk for days! My Dr back then said it was sciatica nerve pressure from being on m feet so long. I suffered all these years thinking it was something else. Only to find out last July I have Ms and the others as well as Chari Malformations. Uh! Life isn’t always fair.”

“That non MSers haven’t the first idea & that being strong & having a positive attitude are the only options available. I’ve learned to appreciate the little things in life, things which pass you by when you’re healthy …. Oh & to be more patient “

“Be thankful for every day that you feel good…… live life to the fullest, and never give up or give in to the demon of MS!!! Most important. …I’m not alone on this journey. .so many are just like me.”

“Who my real friends are! And get a second opinion if the first doc you see doesn’t believe your symptoms. I actually had a doc tell me last relapse if I cant walk talk or see I dont need treatment what the?”

“That neurologists are nefarious creatures.”

So as you see it varies from the very positive to people who are in the “slough of despond”.

What now interests me is what readers of this blog think is the main lesson they are learnt from multiple sclerosis? Also which of the above comments do you find yourself in agreement.

It would be great if you could share more in the comments box below.

many thanks in advance!

Multiple Sclerosis- natural, alternative and complementary treatments for MS – Part One.


Menopause- the change of life

One of the features of this blog is to look at conventional and alternative /natural treatments for different medical conditions.  For this blog we will focus on natural treatments for multiple sclerosis.  It is interesting to note that People with Multiple Sclerosis (PwMS) are often very receptive to non-traditional treatments.

It is worth mentioning that there are a number of treatments we won’t be covering, such as being stung by bees, because we can’t account for its veracity.  Asl this is the first of a two partpost  we won’t  cover everything so if you do have any ideas you wish us to mention in the next blog it would be great if you could mention them in the comments box below.

a)      Exercise is of course a biggie.  The key issue is “low impact” exercise so Yoga, Tai Chi and swimming all come highly recommended.  We covered yoga for PwMS in a previous blog which you may find of interest https://patienttalk.org/?p=571.

b)      Acupuncture.  This ancient Chinese system of medicine has been found by some people with multiple sclerosis to help with bladder control and spasticity.  Some useful information and very relevant links can be found at the National Multiple Sclerosis Societies’ web site http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/treatments/complementary–alternative-medicine/acupuncture/index.aspx

c)       Massage.  While not in and of itself a disease modifier it certain helps with stress and depression which are side effects of multiple sclerosis.

d)      Evening primrose oil.  Some studies have suggested that it may help with some of the symptoms of multiple sclerosis.

e)      Hyperbaric Oxygen Therapy (HBO).  Simply put this means that the patient breaths pure oxygen.  Some studies have suggested there are signs of improvement while many say it has no effect.

The more eagled eyed among our readers will note that we have not covered a diet at all in this post.  This is because we plan to review various diets in a set of future blogs.

The next stage is really over to you.  It would be great if you have tried any of these therapies we could have your feedback on how they worked.  You may wish to think in terms of some of the following questions:-

1)      How long have you had multiple sclerosis and what were/are your main symptoms?

2)      What treatments have you tried?  In particular which complementary treatments have you used?

3)      How effective were those non-traditional treatments?

4)      Would you recommend any treatments to others to help with the symptoms of multiple sclerosis?

 

Please use the comments box below to add your thoughts and suggestions.

Many thanks in advance.