Jan 5 2009

My wife, Dale Rinehart, has MS (and a great attitude!)

Posted by Joe Rinehart at 10:59 AM
43 comments
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I usually try to keep my blog un-personal (with the exception of occasional silly posts about my dog), but developments of the past 1.5 weeks are going to impact my family, my job, and my side projects.

I'm not sure how much of this floated through the grapevine - Dale and I tweeted it pretty regularly over the holiday.  Those tweets were short, so I'd like to share a synopsis of what's been going on.  Please excuse me if I reply to any emails, IMs, etc. asking about Dale's status with a heartfelt "Thank you" and a simple link to this post.

On Christmas Eve, my wife Dale began to have "strange" aching sensations in her right tricep and everything felt warm (even cold metal) to her left hamstring.  On Friday, our general practitioner drew blood, thinking a vitamin deficiency may be the cause.  After we went for a 2-3 mile walk on Sunday, her entire left leg (navel to toe) felt numb: I pinched her hard enough to leave marks and she didn't feel it.  On the advice of our GP's on-call line, we went to the emergency room to rule out stroke.

After a CT scan to rule out stroke, the doctor in the ER consulted the on-call neurologist who recommended we make an immediate appointment.  They snuck us in the next morning (Monday), performing a 2-hour exam of Dale that resulted in us going straight from the neurologists' office to our local hospital for more testing.  Dale was admitted on Monday afternoon, and discharged late Wednesday night after being diagnosed with multiple sclerosis (using two MRIs, spinal tap, and evoked response nerve studies).  While in the hospital, she lost the majority of her control of her right calf and foot - something very unsettling for a new mother who's used to walk 2-3 miles a day around our neighborhood.  We'll be seeking a second opinion after starting a course of treatment, but the diagnosis is "strong probable / definite" - about as sure as you can be for someone who hasn't shown symptoms for years.

Dale's current state is improving, and we're looking at a mostly full recovery of physical capabilities caused by this MS attack.  She's had a five-day course of IV steroids and its results are promising. Her right arm feels normal, the sensitivity to cold in her left leg is mellowing out, and she's barely limping on her right foot.  She can now stand, raise her right heel behind her, and grab her right foot with her right hand (earlier this week she could barely get the foot off the floor).

MS is a strange disease.  Its cause is unknown, but its mechanics have become drastically better understood in the past ten years.  MS causes the immune system to become hyperactive and results in it attacking "myelin", the fatty protective shielding around the nerves making up the spinal column, brain stem, optic nerve, and cerebellum.  Picturing our nervous system as a series of electrical wires, this is the equivalent of stripping their insulation of and causing them to short-circuit.  While myelin does regenerate, its regeneration isn't perfect, resulting in scar tissue forming on the affected nerve channels.  Each of these attacks and resulting scars may or may not temporarily or even permanently impact whatever those nerves control - the sense of touch, muscular control, or even sight.

MS is also a disease that's cyclic - it'll attack for a bit, then go into remission.  Most modern treatment (interferon-based) currently focuses on increasing the period of remission between attacks (or "flare-ups").

I can't say this isn't going to impact me me professionaly.  Different MS patients' attacks are brought on by different stimuli.  For Dale, we believe stress is a primary cause:  it's one of the most common, and our past few months have been loaded with it, both from my job and from family.  We've had Thanksgiving, Ava's first birthday, and Christmas in rapid succession, and I've been doing fairly frequent trips to California as well as late nights on Skype with coworkers on the West Coast. 

Thank you all for the understanding and support the ColdFusion, Flex, and general Adobe community has shown.  We're trying to be open about everything that's going on, and sharing has helped both Dale and myself a good deal over the past week.  Please feel free to ask any questions you may have.  If you know anyone with MS, we're looking to make as many connections within the MS community as possible.

Finally, my wife kicks ass.  On Saturday, I was feeling in the dumps:  I know I can't control it and it's not my fault, but when I looked in on my wife hooked up to an IV drop in our living room, I felt like a failure, like I had missed something I could've somehow helped, as if I'd let her down.  Despite her own issues, she cheered me up with something she did the moment she came home:  she had decorated her IV pole with Christmas lights.  How could I let it get me down any more when she's facing it with that kind of attitude?

Comments

Rob Wilkerson

Rob Wilkerson wrote on 01/05/09 11:34 AM

All the best to both of you for her speedy recovery. It's nice (and probably reassuring) to see that she didn't lose that holiday spirit. :-)
Ben Nadel

Ben Nadel wrote on 01/05/09 11:43 AM

Joe, this is the first I read of this. I am truly sorry to hear about this. My thoughts are with you and your wife. I am glad to see that her spirits are up.
Eric Pfleckl

Eric Pfleckl wrote on 01/05/09 12:02 PM

Joe, Dale: Hang in there and I would agree with getting a second opinion.

My father has been having trouble moving his left leg and the initial diagnosis was MS. He decided to get a second opinion and a test for Lime Disease returned positive. He has since completed a round of in-home IV antibiotics to (hopefully) eliminate Lime before furhter tests for MS.

Maybe you could ask your specialist to test for Lime?
Paul Carney

Paul Carney wrote on 01/05/09 12:05 PM

Joe - Dale knows how much you love her and that you would never fail her. Is still doesn't help when you hit those low points, so please feel free to contact me any time of the night or day if you want to chat. Support is the key to get through these life events.

We have a friend who has MS, so we can help with some of the support. And don't forget - we have a place in Sunny Florida (about 11 hour drive) if you, Dale and Ava want to get away for a while. The back yard, right off the guest suite, is what we call our Oasis. The sun and pool do amazing things to the spirits!

Paul
David

David wrote on 01/05/09 12:12 PM

Dale, Joe and family. Good luck, know that you are in our thoughts and prayers.

David
Rey Bango

Rey Bango wrote on 01/05/09 12:59 PM

Many well-wishes to you and your wife Joe. Stay strong guys.
JAlpino

JAlpino wrote on 01/05/09 1:04 PM

Best of wishes to you and your family.
John Wilker

John Wilker wrote on 01/05/09 1:35 PM

Joe, sorry to hear that! Tom and I are sending good juju you guys way. If there's anything we can do, just holler!
Vinny Timmermans

Vinny Timmermans wrote on 01/05/09 2:01 PM

Very sad to read this. All the best for all of you.
Bim Paras

Bim Paras wrote on 01/05/09 3:05 PM

Joe, thank you for sharing and best wishes to Dale and your family. Dale sounds like a strong, positive force that will get through this tough time. I can understand the stress your family went through as I too endured and enjoyed my son's first holiday season and birthday these past couple of months. Good luck and hang in there.
Anon

Anon wrote on 01/05/09 3:19 PM

Hey,
Just a short note from another person with MS, if all goes right, you can live with it, get on one of the drugs, do yoga, the stretch is really important as your muscles harden, exercise other ways, don't give in.

After 20 years of "having MS" I don't think about it every day I'm more worried about my kid in school then my health.
J.J. Merrick

J.J. Merrick wrote on 01/05/09 3:56 PM

Joe, our thoughts and prayers are with you and your family. MS is something I know all too well. My mom was diagnosed right after I was born some 29 years ago. She was "normal" for almost 15 years and then started to go downhill. She is still with us but has been in the hospital for almost 4 months now. It is a crazy disease and manifests itself in so many ways. My mom was able to have 4 more kids after me and has lived a full and wonderful life. Up until about 3 months ago she was an avid Facebooker and emailed like crazy thanks to a voice-controlled laptop. She was able to renew her nursing license last year and was hoping to do over the phone consultations. Unfortunately she has taken a turn for the worst but she lived every day to the fullest.

Know that life is a gift and we learn to appreciate it more through these hardships.

-J.J.
Steven Erat

Steven Erat wrote on 01/05/09 4:20 PM

Joe, I'm sorry to hear of what has happened to your wife, but your description here sounds like you both the very positive type of attitude to cope with it. I don't know what I can offer from such a distance, but if there's anything you can think of I'd be more than pleased to help. I wish you and your wife the best.

-Steve in Boston
Julia Kamphuis

Julia Kamphuis wrote on 01/05/09 7:48 PM

My programmer husband just sent me the link to your story.....and my dad had MS for 28 years.....and I have to say.....what a great attitude your wife has,.....it'll be that kind of attitude that will get you and your family through this time.....everyone's experience with MS is a little different.....but it sounds like you have some great friends around you and supporting you.....especially the ones in Florida!
....I know there are many MS societies in Canada.....and hopefully there is one around you there.....they were a big help to our family!
Take care.....
Tony Bommarito

Tony Bommarito wrote on 01/05/09 9:40 PM

Joe, I am sorry to hear about your wife. It will be difficult at times, but will be important to maintain that positive attitude. Sounds like you have a great support system where you live. In addition I am sure there are many on & offline support groups that will be able to see you both through this.

Best wishes
Rachel Lehman

Rachel Lehman wrote on 01/06/09 8:17 PM

My heart went out to you and Dale and Ava when I heard this. I'm sure that kind of news is not an easy thing to hear, and it sounds like Dale's had a rough time over the holidays. But I'm glad to hear she's improving and you're both optimistic. Life is certainly unpredictable but attitude does make a big difference! I wish you all the best.
Luis Majano

Luis Majano wrote on 01/07/09 2:03 AM

My family's heart and prayers go out to your family Joe. Stay Strong!!
Gary Gilbert

Gary Gilbert wrote on 01/07/09 3:48 AM

Joe and Dale,

My thoughts and wishes to you both.
Sam Farmer

Sam Farmer wrote on 01/07/09 9:49 AM

Sorry to hear about this. All the best to you and your family.
Jason Fisher

Jason Fisher wrote on 01/07/09 10:31 PM

Joe, my prayers are with Dale and with you. God bless.
Asif Rashid

Asif Rashid wrote on 01/08/09 12:11 PM

Joe, I am very sorry to hear about this. My prayers are with your family. Let me know anything I could help?
Sam Clement

Sam Clement wrote on 01/15/09 5:30 PM

I'm very sorry to hear about your wife's condition. She sounds like a remarkable person. Good luck to you and your family.
Steve Brownlee

Steve Brownlee wrote on 01/16/09 10:11 AM

Sending lots of positive thoughts to you and your wife, Joe. Having a disease like this in your immediate family can have a devastating effect on everyone, and constantly fighting the negative thoughts and making a daily effort to find the positive in life is what will get you through it.

Go get 'em Joe and Dale!
Patrick

Patrick wrote on 01/16/09 10:55 AM

I am sorry to hear about the MS. My brother's wife has had MS for over a decade. It will take lots of patience, time and love for you to help your wife. Just take one day at a time and lots of prayers.
Troy Pullis

Troy Pullis wrote on 01/16/09 1:47 PM

Joe, I know how tough MS can me. I lost my mother to a 15+ year battle in 2002, unfortunately she had the worse kind of MS. Most MS types can be kept in check with the right meds. We do the MS Walk every year to raise money for the MS Society, a terrific org. Prayers for your wife and family to get through this. God Bless.
Qasim Rasheed

Qasim Rasheed wrote on 01/16/09 8:35 PM

Joe,

I am very sorry to hear about the MS. I pray that you and your wife will have enough strength to go through these difficult times. Let me know if I can be of any help (baby sitting, dr's trip ... anything).
Sid Maestre

Sid Maestre wrote on 01/17/09 1:12 AM

Hey Joe (and Dale),

I'm sorry to hear this news. Dale sounds like an amazing woman. My wife and I hosted my seconds daughter's birthday (Nov 5), Thanksgiving and holidays and understand the stress level.

Keep up the positive thoughts. You've got A LOT of love and support around you and it is directly proportional to what you've given us.
George Murphy

George Murphy wrote on 01/17/09 3:41 AM

Joe & Dale, my heart and prayers go out to you guys. God bless you Joe and your family.
Sandy Clark

Sandy Clark wrote on 01/17/09 10:25 AM

My love to both you and your wife during this difficult time. I just read about this and I just want you to know that my heart and my thoughts are with you both.
Mark Phillips

Mark Phillips wrote on 01/19/09 3:25 PM

Our thoughts and prayers are with you guys. You should have only good news.
Mark Phillips

Mark Phillips wrote on 01/19/09 6:56 PM

Our thoughts and prayers are with you guys. You should have only good news.
Lance

Lance wrote on 01/20/09 8:23 AM

You are in our thoughts and prayers. God bless.
MUSTI

MUSTI wrote on 01/22/09 3:15 AM

I got another sittuation. I met a girl short while ago and today she told me the she has MS . She is a doctor but we both know that there is no cure. She told me if i want to go away fo this relationship , but i am addicted to her more than ever. I decided to be with her lifetime. Who knows that i will not have an accident ? The point is love and respect . This is the destiny . I made choice and i am happy. I do not care of the disase. I care about her. I am ready to be a good husband , father whatever is needed for family. I wish god help me. I wish god help everyone . I love her and i am ready for hard times. I will spend the rest of mylife with her unless God doesn@t want me to.
Just wanted to share here if you love you can do anything. I hope my love will be a best fighter of this shit. We will win i am sure. I want babies from this girl. God bless all of us. Do not worry for anything .Spend a qualty time. Thank you for reading.
Nancy

Nancy wrote on 01/22/09 10:47 AM

Too bad about the MS. As one who has lived with it for many years, a positive attitude goes a long ways. The website http://multiplesclerosissucks.com/ is one that popped onto my radar not long ago and it makes great reading with lots of helpful links. Staying active is a good thing even if it is only 5 min on the treadmill at a time.
Dave

Dave wrote on 01/23/09 3:19 PM

Wishing you all the best Dale and Joe.

My wife was diagnosed with MS almost 4 years ago, right after we got engaged. It came on suddenly and was very severe, with episodes occurring every 2 or 3 months and lasting a month or more, causing her to lose mobility and vision, experience extreme bouts of pain, among other things.

She was lucky to be diagnosed quite quickly, sometimes it can take years, and get on some treatment.

She has responded really well and has regained all her mobility and vision and most of the feeling in her nerves and we are back to doing regular walks and hikes. She is also pregnant with our second child since being diagnosed.

MS is a very tough disease, and though there is no cure, with all the research and new treatments people with MS can live a long and active life these days.

Feel free to drop me a line if you'd like to hear about her experiences or get feedback on some of the treatments she's used.
Jeff Bouley

Jeff Bouley wrote on 01/24/09 10:05 PM

Your family is in my thoughts Joe. One day at a time.
Bash

Bash wrote on 01/27/09 2:01 PM

Just wanted to post a quick note to wish you and your family all the best Joe.
Maxim Porges

Maxim Porges wrote on 01/28/09 12:18 PM

Joe,

I am saddened to hear of the diagnosis, but glad you guys have caught it early enough to do something about it.

All the best for Dale and your family, and best wishes for greatly extended remission periods.

- max
Rupesh Kumar

Rupesh Kumar wrote on 02/03/09 1:48 AM

Joe, very sorry to hear this. Wishing you and Dale all the best.
Javier Julio

Javier Julio wrote on 02/21/09 1:50 PM

Joe, I'm sorry to hear what has happened. I hope things have gotten better and since its been some time I'm sure it has improved. I wish you and your wife all the best! You have such a great attitude and personality I doubt you or your wife will have any hard time at all! Again all the best!
Paul Ellsworth

Paul Ellsworth wrote on 03/05/09 11:21 AM

You and I are in the same boat, except my wife was diagnosed in June of 2006.

There will be good days and bad days. Times when you wonder where "she" went, AKA the person before the MS won't be as apparent as what we call the person with the MonSter (MS). We regular folks don't quite get that -- think of a sensation my wife describes sort of like "short circuiting light bulb with a 60hz buzz sensation inside my head" -- and when they get tired, the buzz makes most MS'ers cranky.

Anyway, as a fellow high energy programmer with a wife in the same condition, if you need to chat, just email me.
Molly - Buy Titanic Movie

Molly - Buy Titanic Movie wrote on 05/21/09 1:03 PM

Oh! think both of you are so nice! Hope that you will never face such problems ever... You are adults, not children, you may just sit calmly and discuss any issue! Wish you all the best!
Mark

Mark wrote on 06/09/09 10:37 AM

Hi Joe,
I stumbled on your blog looking at some other articles. I don't know you but thank you for sharing your personal situation.

I was an IT programmer for many years, touring musician & recreational pilot. A diagnosis of MS a couple of years ago for me was incredibly intense and traumatic on top of the actual illness's symptoms.

I was left numb from head to feet for months and 80% recovery took almost a year. Since then I am not able to do these 3 major things I derived income or pleasure from simply from lost sensation in my hands of all places.

But it was more traumatic for my wife I think to see me go through it and the day to day effects, the mood swings, the fatigue, backwards sentences, brain blocks, walking difficulties, the grief and all the other noticeable & unnoticeable symptoms.

It is very important for you not just your wife to have access to independent support whether it be counsellors &/or others like yourself who may be in a carers kind of role for their partner. Friends will try their best to help & understand but MS is a theoretical concept to most not directly touched by it by no fault of theirs.

My wife & I have separated, for many reasons but the MS has been pretty tough for her.

But I am so so glad that at least before all this eventuated, after trying various injectable treatments that made me sick and sent me downhill very fast I was able to find a local doctor who would allow me to trial an older drug that I researched which has been used successfully for various immune disorders.

It is worth reading up on LDN (Low Dose Naltrexone) as there are many MS Forums where others recount their experiences with the drug. For me it was an overnight improvement in my energy, mental clarity, strength even ability to get out of bed.

It has been over a year now on LDN and although it doesn't generally rewind damage already done, I know in my situation the MS is much more manageable & seems to have stalled. I am starting to forget that I have it. I feel great and able to function all day & night again and my recent MRI scans show the lesions have not increased at all in number or severity.

All the best for your partner & you and a healthy loving supportive relationship for your futures.

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