About Us

Donna and Lynn on left. Our children, Eric, Daniel and Sarah

Hi, my name is Donna and I’m the wife of a MS patient, Lynn, who was diagnosed with MS in 2006.  This is a second marriage for both of us and as with most second marriages it has had its challenges.

BEFORE WE MET

When Lynn and I first met, I had been divorced for a little over a year. I shared joint custody, with my ex, of our two children, a daughter who was around 9 and a son who was a little over six.  My daughter has a medical condition that required a great deal of support and care.  Therefore, a lot of my time was devoted to her.  My son was into various sports and since we lived in the country, that meant a lot of time spent in the van going to and from sporting events.  When my ex had the kids, I worked a second job as a home health nurse to make ends meet.  I also was a girl scout leader, taught Sunday school, was in choir at my church, and attended any special events the children had.  I was very busy and meeting someone was not likely to happen unless I met them at a sporting event, school, or church function.  My single friends had tried the personal ads and persuaded me to do the same.  I did, and that’s where I met Lynn. 

WE DATE

I was drawn to Lynn’s ad because he spoke of how important family was to him and he shared that he was a Christian.  We met at a mall so he could finish his Christmas shopping (on Dec. 23 which should have told me something about him).  We discovered that his son and my son were only three months apart in age and that we had a lot in common. I found out he played guitar and had a beautiful tenor voice which swept me off my feet. 

AND THEN WE MARRY

Lynn and I dated for several years before getting married.  We both were scared to try again and both were reluctant to take on blending our families.  Plus we were both very independent!  We finally got up our courage and on October 11, 1997,

Family Portrait taken at our wedding

we tied the knot.  As predicted our first few years were challenging.  Our parenting styles were different and he was someone who never committed to a particular time to get anything done and I was the type that had to get it done the minute I said I would.  Needless to say, that was difficult for us to adjust to.    But we survived and adjusted through our commitment to each other.

During this time, my daughter continued to need a great deal of support.  Often I spent more time with her than with Lynn and I found it a challenge to give both what they thought they needed from me. 

One of the ways we worked at developing our relationship was through our church activities.  Lynn and I both liked to sing. He was wonderful at it and I just liked to do it.  My talent was more in the line of drama so when our church began a 17th Century Dinner Theater,

Lynn and Donna posing as their Dinner Theater characters

we both joined. We participated from the first rehearsal to the last performance.  We both loved it and made many good friends.  We also became involved in choir and started playing hand bells.  A praise band started and Lynn joined first as a guitarist and later as drummer.  I became involved in a support group, Discover Freedom, whose purpose was to provide encouragement and support to those fighting the challenges of addiction or who needed a group to help them find freedom from whatever struggles they were encountering.  I also became part of a drama team.  Three of us wrote scripts to illustrate sermons and we helped with the production and acting for most of our Christmas and Easter programs.   Lynn and I were very busy.

THEN MS STRUCK

Things were going along very well.  Then a few years after our marriage, Lynn started noticing his foot was dragging after he would run (he was devoted to exercise and tried hard to stay in shape and work out every day).  It came and went so he didn’t pay much attention until his right leg started bothering him and would give out occasionally.  I knew his father had died in his 40’s from complications of MS so I asked him if he thought that could be it.  He said he had mentioned it to his doctor but he didn’t seem to think it was.  He prescribed physical therapy and it did get better.

But it kept coming back and the physical therapy was not helping it improve.  I kept mentioning MS and he kept denying that was it.  One night I saw him testing the speed that he could wiggle this fingers on both hands. One hand was much slower than the other.  That alarmed me.  He still didn’t think it was anything but having a nursing background, I knew something neurological was wrong and I feared MS.

HE GETS DIAGNOSED

I was a little frustrated that his doctor wasn’t finding out what was wrong with him. Plus I was frustrated with Lynn too because if a doctor did ask him how he was, he always said, “If I was any better, I couldn’t stand myself.”   I knew he was not sharing all his symptoms so I told him that from then on, I was going with him to all doctor’s appointment so I would know what was shared and what was said.  His next appointment was with his cardiologist.  He has mitral valve prolapse.  His heart seemed fine, but his doctor asked me if I had any other concerns.  I told him, “not about his heart but he’s got something wrong in his upper back.”  He asked me who I wanted him to see, he got me the appointment I wanted and Lynn was seeing a neurosurgeon.  I thought if it wasn’t MS it had to be somewhere in his spine and it wasn’t in his lower back, it had to at least be in his neck since his hands were involved.  The neurosurgeon agreed with me and ordered a head and neck MRI. 

Lynn and I went to the beach for our anniversary and on our way back, we got the news.  Lynn had MS.  Though I expected it, I still felt like I had been kicked in the stomach.  He of course, felt worse.  He had seen what MS did to his Dad and he didn’t want his son to see him like  that.  He cried outside unloading the car.  I cried inside as I unpacked the bags.  Then we cried together.  So began the testing, the treatments, the years of shots, and the steady decline in his abilities.

The children have now grown up and are out on their own.  Our daughter married a wonderful young man who took my place in caring for her (and does a fantastic job of it).  Both boys are out on their own–struggling still–but doing okay.  It’s unclear if he has now developed a progressive form of MS (secondary progressive) or if his many loses have been due to exacerbations, hospitalizations, or severe spasticity.  Whatever the reason, since 2006 he has gone from being very healthy and able-bodied to being in a wheelchair and unable to do very much without assistance. 

His steady decline in the last 12 months due to three hospitalizations has caused me to have to be home with him full-time.  I’m very fortunate to be able to do my job remotely.  Our three children are wonderful about helping out but for the most part, I’m a full-time wife, employee, and caregiver.  I’m doing one or the other of those roles 24/7.   I often am helping Lynn with his care as I simultaneously try to get “work” done.  My schedule and Lynn’s needs are such that it is impossible to consider attending support groups for MS caregivers.  My world is pretty much narrowed down to home now.

I expect many of you are in the same situation.  Therefore, I offer you this opportunity to share with me as I share with you.  Hopefully by doing so we both will get the support we need to make it through each day and each new challenge.

I hope to hear from you soon.

MS Caregiver Donna

Addendum

In my blog, I sometimes mention medical options, give information about treatments or medications, or explain what I know about a condition, etc.  This information is based on my limited knowledge of these topics and how they have applied to Lynn or me.  Please do not consider this medical advise.  Everyone’s situation is different and the only way to make sure you get what you need for your situation is to have your own healthcare provider evaluate you and develop a treatment plan just for you.  Therefore, please keep in mind the opinions mentioned here are strictly my own and do not represent anyone other than myself and is not a substitute for your own doctor.  Thanks

 

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17 Responses to About Us

  1. Ryan Rivera says:

    Dear MS Caregiver Donna,

    My name is Ryan Rivera and I have been reading your website for a while now. Yesterday, I came across this article – Depression site: http://www.futurity.org – and it really caught my attention because it is related to my area of expertise.

    My area is helping folks with anxiety, stress, panic attacks and related issues (7+ years in the field). So it got me wondering – perhaps you’d be interested in an expanded guest article on the same, or a similar topic? I think I could provide some additional tips. Or perhaps I could cover a new topic altogether? I would be glad to contribute.

    My work has been featured in local radio and TV shows, so I’m sure I can craft something that will work for you and your website. You can always turn it down – no issues. It’d be exclusive to you, around 650 words, but I can make it longer or shorter if you wish. I will also share the story with my 900+ subscribers once published.

    Please let me know if you would be interested.

    Kind regards,
    Ryan Rivera

    P.S. I can also send you some links to previously published articles – just let me know if you’d like to see them first.

    • mscaregiverdonna says:

      I’ve thought a lot about your offer and have gone back and forth a lot on whether to accept your gracious offer. The blog I write is just my way of sharing my experiences as a caregiver to others in the same situation; an outreach mechanism, rather than an actual self-help site. I sometimes offer suggestions just because I have some experience in certain areas that might be helpful. Also when I went to the sight, it seemed to be a e-magazine rather than a personal website so I think I should decline. Thank you anyway

  2. Pingback: MS Caregiver Blog | Adaptive Mobility & Positioning Blog by Rifton

  3. Maggie Danhakl says:

    Hi Donna,

    I hope this finds you well. I represent Healthline Networks, and we were wondering if you could include Healthline’s Multiple Sclerosis Center (http://www.healthline.com/health/multiple-sclerosis) as a resource on your page: https://mscaregiverdonna.wordpress.com/

    Healthline provides a very comprehensive overview of Multiple Sclerosis as a critical starting point for individuals and/or their loved ones.

    Why you should include Healthline as a resource:

    -An educational tutorial on understanding, diagnosing, and treatment for MS
    -Breaking news (ex. http://www.healthline.com/health-news/ms-new-3D-scanning-technique-helps-diagnose-ms-fast-100913) and in-depth, doctor-reviewed content

    For more information about our rigorous editorial process, to view our board of directors and more visit the Healthline about page: http://www.healthline.com/health/about-healthline.

    Please let me know if you are open to adding Healthline’s MS center as a resource. Thank you in advance for your consideration, and I look forward to hearing back from you.

    Warm Regards,
    Maggie Danhakl- Assistant Marketing Manager
    p: 415-281-3124 f: 415-281-3199

    Healthline Networks, Inc. • Connect to Better Health
    660 Third Street, San Francisco, CA 94107 http://www.healthline.com

    • Yes, I will. I went to your website and it seems very informative. As a caregiver though I was a little disappointed in that there was not more there for us but the links to the caregiver sites were helpful.

  4. Sarah Berrie says:

    Donna,

    I just stumbled across your blog last night, and it was an answer to my prayers to find another woman who is a caregiver to a husband with MS. I have been going back and forth about starting a blog myself, and quite honestly the only thing holding me back is that I’m in school full time so I have limited time.

    My husband, James, was diagnosed with MS in February 2008, after about 7 months and 3 relapses. He has dealt with leg spasticity, “numbness” in his hands, a couple weeks of mild optic neuritis, and he is finally in remission after a long 2 year relapse that put him in a wheelchair unable to control his legs. After a year of physical therapy and not working, he is now back up, walking mostly, and his lesions in his brain have stopped growing–some have even started going down.

    It is so reassuring to find another MS caregiver, especially a woman. Thank you for putting your story out there and sharing your experience!

    • Thank you so much for sharing your story. I love connecting with other caregivers. Congratulations on the improvements in your husband’s condition. That is awesome. Take care and check back in anytime.
      Donna

  5. Maggie Danhakl says:

    Hi Donna,

    Healthline just launched a video campaign for MS called “You’ve Got This” where individuals living with MS can record a short video to give hope and inspiration those recently diagnosed with MS.

    You can visit the homepage and check out videos from the campaign here: http://www.healthline.com/health/multiple-sclerosis/youve-got-this

    We will be donating $10 for every submitted campaign to the National MS Society, so the more exposure the campaign gets the more the videos we’ll receive and the more Healthline can donate to MS research, support groups, treatment programs, and more.

    We would appreciate if you could help spread the word about this by sharing the You’ve Got This with friends and followers or include the campaign as a resource on your page: https://mscaregiverdonna.wordpress.com/

    Please let me know if this is possible and if you have any questions. And, if you know anyone that would be interested in submitting a video, please encourage them to do so.

    Best,
    Maggie Danhakl • Assistant Marketing Manager
    p: 415-281-3124 f: 415-281-3199

    Healthline • The Power of Intelligent Health
    660 Third Street, San Francisco, CA 94107
    http://www.healthline.com | @Healthline | @HealthlineCorp

    About Us: corp.healthline.com

  6. My name is Randall hurst , I have MS and its been a battle i am 45 years old, and think god it has not affected my duty where I worked at two years ago when I was forced to quit. All my life since I got out of the army in 91 after desert storm, I was in the car business. I loved it I worked my way up at every place I worked at. I was contacted by huge dealership to open up a store for them . After lengthily discussions I did after I was promised partner. After about one year into it, I was diagnosed with M.S. everything changed for me I was finally denied partnership because they said they don’t know what my future looks like. My case was picked up by the goverment and its fixing to go to trial. The EEOC picked it up, my case is setting a presidence . It is the most watch case on the goverment website in New York and all parts of the states. Randall hurst lubbock,Texas . Don’t let This happen to future people, and please login on the website EEOC .gov and type in my name and help me stand up for every hard working person with M.S thanks rhurst1999@gmail.com this is not for me but it is for every person out there with disabilities. I am married and have three kids and a wife which we have been married 21 years. I never dreamed that people like this could or think they can run over people because they are rich!! Thank you and god bless!!

  7. fleetpen says:

    Hi Donna! I am a writer with Everdayhealth working on an article about the changing demands of caregiving for someone with MS. I was hoping you would be willing to email or speak with me about the way in which your role has changed, what you’ve learned, advice you would give to others and our readers, and more. My deadline is Feb 6. You can email me at madeline.vann@gmail.com if you are interested (and I hope you are!)

  8. Hi Donna ! I am a new reader to your blog. You are amazing for caring for Lynn. I don’t k,ow how people do this. I would be so broken up and sad . I think I would be angry that this has happened to us. I have a dear online friend who has very bad MS and I don’t know how she does as much as she does. Her husband sounds like you. Except he goes to work everyday. She has been home bound for years. And like your Lynn she was very active before she got sick. Another of my down falls is I have a weak stomach, very weak.My husband has open wounds on his legs from circulation problems and being diabetic.If I even get a glimpse of the I start gagging. I try so hard not to but,,,,I do.
    I also ha e health problems, me/cfs &cms. Nothing that would make me sick, until vomit time. That only happens in extreme fatigue. I have had many surgeries they made me so sick Just knowing what had been done that I couldn’t eat until I could forget about it and get it off my mind.Even my scars make me want to lose my dinner.
    Yes I know I am weak. But I try not to be.
    Btw, your wedding dress was beautiful we got married in 96.222nd time for us also, and I began getting sick before our first anniversary..we were on our way back from Key West when I got my call. I started with a brain tumor. Then the flood gates opened on me.
    Any way I wish you luck, strength,peace and love. And an over all grace from God to keep you sane.🍀🙋
    Oh yes, you haven’t written for a while. Is anything else wrong or are you just too busy?

    • Thanks Brenda. Sounds like you have your hands full as well. We’re okay but life has become very busy. My job is really demanding right now, Lynn’s Mom is in the hospital and his fatigue is much worse, I have a new grandson and my 4-year old grandson has been in the hospital plus I’m trying to visit my mom who is terminal with cancer once every 2 months. Just busy with life. Hope to get back soon.

  9. Stephanie Dankwardt says:

    Hi Donna!, I so enjoyed reading your story. Our story is very similar to yours. My husband was diagnosed in late summer 2004. Relapsing remitting type. He worked for almost 2 more yrs & had to quit. Alot of cognitive issues. His younger brother came down with primary progressive type shortly after being married for 2 years or so. He died from complications with his MS. He was about 40 years old. My husband was in the navy before we met so he is lucky enough to go thought the VA for his medicine & such. He has to use a cane most of the time. Has a real hard time with memory issues.
    Our 2 children also are grown. 2 grandsons, 1 granddaughter.
    I understand how hard it can be. Me personally, I scrapbook to save the memories & get my mind off of things. I am going to look for Lynn’s book online. I saw where you said your Mom has cancer. Praying for her & you. I know you have alot on your plate but if you have time to write back to me I would love to hear from you. Take care, Stephanie

    • I am so sorry for the delay in writing you back. I have been off line for quite some time due to being overwhelmed with work and caregiving. thanks for taking the time to drop me a personal note of encouragement. They mean a lot to me. I’m sorry to hear your husband has cognitive issues. I think in many ways that can be more difficult to deal with than physical because even though Lynn and I can’t do many activities together, we can still share memories and stories which keep us connected to our past and we can plan our future and share events which help us to stay grounded as a couple. That helps me not to feel as isolated. I hope you have others you can talk to.
      Take care.

      Donna

  10. Hi Donna!
    I’m glad I’ve stumbled upon your blog. I own a home care company that helps people find great caregivers, and it definitely helps a lot to read your perspective on giving care. Thanks for sharing with us your stories.

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