Sunday, July 22, 2012

Life Goes On With MS

So many emails I receive are from individuals with newly diagnosed MS. They are scared, and have more questions than answers. If they've searched the internet for MS symptoms, just diagnosed with MS, living with MS, etc., they have probably been led to many blogs and websites that give a bleak future for the MS patient. Well, I can only speak from my wife's experiences, but I can tell you that you can have MS and live a very full, active life. The last few months my wife has been working on losing weight, becoming healthier and having more control over her MS. She started with a juice fast a few months ago and has continued to become healthier by losing over 35 lbs, eating better, exercising with care, listening to her body and resting, and being more aware of her stress level and need for chiropractic. Because of this, she has had very limited MS symptoms in months and we have pushed hard with trips, church camps and the heat of summer. This last week alone, she had very little sleep at camp, spent all day working with teens, helped outside in 100 degree heat, and pushed hard from morning till night. She had one morning she experienced a headache and a few times in the heat that she had to step inside and cool off, but outside of that, she did amazing and was able to keep up at a pace with everyone else. I am so proud of her and her efforts the last few months because she has been more consistent and determined than I have seen her in a long time. She looks great, has lots of energy, and is feeling great. She has participated in cycling classes, climbed mountains in New Mexico, kept up with teens at church camp and been more active than I've seen her in a long time. There was a time not too many years ago that we wondered if she was going to be able to walk again, and through a lot of trial and error, we found some very specific ways that she was able to control her MS and overcome any issues she was having. I guess I am writing this today because so many newly diagnosed Multiple Sclerosis patients struggle to have hope for their future, and so many others are fighting for a normal life. Fatigue, headaches, numbness, pain, stomach issues, twitching, loss of movement, leg pain and weakness, MS hug, eyesight issues, cramping, dizziness, memory issues, brain fog and many other symptoms have all been issues my wife has dealt with over the 22+ years she has been diagnosed with MS, but she continues to fight for a better life and has been able to overcome those symptoms. Life can go on, and my wife has worked hard to be healthy not only for herself, but for me and our daughter. Living with MS is not easy, and one thing I have learned from talking with so may different individuals with MS is that not everything that has worked for my wife will work for them the same way. Patience, trial and error and having the hope that there are definitely treatments that will work have kept my wife striving for better health and a better life. Life goes on after diagnosis of MS, and there can be some really rough times, but I know for my wife that she has struggled through those and has continued to become healthier and live a full life. So, please don't let diagnosis or MS attacks stop you from hoping for a better future and a full life. That is one of the main reasons we started this blog, to share our experiences in the hope that it would help someone. We are an open book, so if there are any questions you have please shoot them our way, and don't ever lose hope that there are treatments and ways for you to have more control over MS.

16 comments:

Unknown said...

As always thanks, you are the rarest a caregiver not only involved but somewhat a spokesperson for milder MS progression. Usually it is the person with milder MS using social media, often without a caregiver or not even viewing their spouse as a caregiver. As a caregiver of 22+ years I appreciate your perspective and optimism, MS is unique. Thank you for sharing.

Caregivingly Yours, Patrick

Morgan said...

I just happened to run across your blog tonight after doing a search on MS and losing weight. I read one of your earlier posts from when your wife was having difficulties losing weight. I skipped ahead to your 2012 updates seeing as that article was from 2009. I am so happy that your wife was able to find something that worked for her and was able to lose the weight. I also want to give you a special acknowledgment for standing by your wife through thick and thin. I was diagnosed at the age of 12 and am currently 20. It's hard to remember a time when MS didn't affect me. I hope someday to find someone who will love me even with ms and all that can come with it. Hope you two have a wonderful week. Glad you two are happy in KS. The weather here I think is pretty nice for people who have MS.
Morgan

Mike said...

Hello - my wife is in the early stages of MS diagnosis, things are not looking good, and we have the MRI in just a few hours to confirm.

I wanted to comment that reading several pages and posts of yours has made me more positive and hopeful that even if the new is bad, we can live a happy almost normal life!

I'm sure your posts are informative and important to many. I appreciate your efforts here!

Anonymous said...

Hi! So happy to have found your blog last night. It's very positive and uplifting. I was diagnosed w MS in January. I am 36 years old and a mother of 3. I have been reading a lot about diet ESP the Swank diet. You talk about Swank in a post but also said that your wife follows weight watchers. So I guess my question is does Dr Swank support the WW diet? WW sounds much easier and I would rather follow that diet. Any information that u can share w me is very much appreciated. You and your wife are amazing and I look forward to following your blog.

Many Blessings,
Holly

Jen said...

What a wonderful blog. Thanks so much. I've had MS since 1995 and you wouldn't know it. The whole body numbings haven't happened in years, and I've managed to keep fit and work in a caregiving field. But oh the emotions and fatigue. Hard on relationships. Hard on my children. Hard for anyone to understand because they can't see how impossible things feel sometimes and want me to reason and push my way through incredible walls. What a good man you are. My best thoughts, and gratitude, to you and your wife.

Sincerely,
Jen

Anonymous said...

Hi, I'm sort of in limbo right now, on the verge of a diagnosis. I'm about 98% sure I have MS. I had an MRI and they found some stuff... great. Anyway I just wanted to thank you because this all started when my left arm went numb. It was a heat wave in Chicago and I googled my symptoms and your blog popped up. I had suspected MS for a while, but your post about your wife's arm going numb was like a wave hitting me in the face - I just knew.

Unknown said...

Hey Holly, thanks for the comment. Yes, my wife has followed both diets. She started the Swank MS diet when she was first diagnosed and followed it for 10+ years. The WW diet is something that she recently started to lose weight. The two diets are for different reasons, and WW has nothing to do with MS or Dr. Swank. What the WW diet has done is help my wife to understand portion control, eating triggers and other issues and she has lost 30+ pounds. So, my wife has used the two diets for very different reasons. The Swank Diet definitely helped my wife with her MS, and the WW diet has helped her with weight loss. I hope this helps. Let me know if you have any specific questions.

Unknown said...

Hey Jen, thanks for the comment. It's great to hear that you are doing well with your health, and we completely understand about MS being hard on life. Thanks again.

Unknown said...

I just discovered your blog this morning when I googled MS Wichita. My family is military and moved here this summer, and I am trying to get control of my health. Without searching through all your blogs or the comments of others, have any of you noticed a connection between MSG and all foods containing free glutamic acids and your wife's MS symptoms? I am noticing that eating anything with glutamic acids (super long list!) affects me negatively with headaches, dizziness, numbness in my fingers and feet, inability to think clearly, lethargy and having no patience for my kids. Is there a group that meets in Wichita that can help me talk about these frustrations or anyone that has a similar experience? Thanks for blogging your experiences!

Stephanie

Unknown said...

Stephanie, thanks for the comment. My wife has had issues with MSG when the food is heavy with it. She doesn't have issues with Glutamic Acid that we know of. She can eat other foods like Soy Sauce without any issues. One example of something she has had issues with is a specific sauce at a restaurant we used to eat at. Within minutes of her eating it, she would start to physically feel loopy and light headed. I'm not sure what all was in it, but I know she has had the same effects with other MSG laden foods. Hope this helps. We don't participate in any groups for MS, but I'm sure there are some in Wichita. The MS Society will have a list of groups on their website. My wife hasn't had positive experiences in MS groups so she hasn't participated in them in years. Let me know if you have any other questions.

Stevie said...

I just found this blog. I haven't been officially diagnosed with MS, yet, but with my newest quadricep pain I am confident my next trip to the neurologist will confirm it. I am very interested in the juicing diet you spoke of in one of your past entries. I was gifted a juicer from my sister, who passed away from breast cancer last year and she ordered me to use it, and I haven't even turned it on, so I think it's about time I start exploring eating healthier. I have started excercising a couple times a week and I am taking Interferon once a week, but with this new leg pain, I am not sure what I should do next. Anyway, your blog posts give me hope that I can lead lead an active life and play golf and take care of my 3 young kids. I am so nervous about becoming disabled and losing my job as the sole wage-earner in my household. Anyway, thanks for your blog.

Sue said...

Hi Cory
My daughter who is 25 years old and a mum of a 5 months old baby has MS. While celebrating Father's Day at her place she complained she has leg cramps. It kind of hit me thinking it might be due to her MS and this morning I made a google search and came upon your blog. I worry everytime she has some issues with her health. We started with homeopathy but her neurologist is worried that it is a slow process recovery and wants her to start her daily injection treatment without any delay. I am still in the process of reading all your posts and find it very informative and hoping for the best for my daughter. Thanks Cori.

Unknown said...

Stevie, thanks for the comment. Let me know if you have any specific questions about the juicing.

Bob said...

Hi Cory, sorry I haven't been around in a while, we've had several set backs.
A. My computer crashed, and died.
B. My wife has had several Major Flares.
The computer I don't care about I can and have bought a new computer. How ever, my wife means everything to me. We are hoping and praying the Sue gets feeling back in her left leg. Being disabled myself, it's hard at times but worth it in the long run.
When we got married we took our vows seriously, "In sickness, and in health." The past several months have been a challenge. It got so bad, Sue had to quit working, which hurt her mentally. Though she has been put on SSDI, she has started taking classes on-line thru Colorado College.
Though I am wondering if I'm going to be able to help Sue cause I have knee replacement surgery coming up in November.
We both know that MS one day will be over come by the Lord. Till then Cory, keep looking up.
This lettering (picture) is really hard for a person who is hard of hearing and has problems seeing.

Unknown said...

Hey Bob, sorry to hear you wife has had so many issues. I'm glad to hear that she has started classes, because it is so important to feel like you are growing and still able to accomplish something. Please keep us updated on how you are doing, and we will pray about your upcoming surgery and your wife's health.

Anonymous said...

Hi Cory, thankyou for sharing your beautiful wifes journey in such a public place and being such a supportive husband through it all. I am 31 years of age with RRMS. I was diagnosed with optic neuritis at 17, however although this is generally associated with MS the neurologist at the time couldn't diagnose it at such as it was a single episode... 10 years later, in 2010 i was diagnosed... I lost feeling and control of my right leg, weakness in my right hand/wrist, which plays up now and again. Unlike many people with MS i haven't suffered from physical symptoms so much, however my cognition is quite impaired although working on giving it a feng shui face lift :) Needs something to direct the current in the right direction :) I have been on a raw food diet predominantly for the last year, this has aided with my energy levels quite alot. Right now i'm researching supplements... compared to others, i'm on a limited concoction... I hope you and your wife are happy and well. You've done a tremendous job... My partner tends to help me more emotionally than physically, when it comes down to helping me in the kitchen or with chores, he's a bit on the 'i'd rather relax... ' fence, but that's okay. I'll tell him off one day :)

Thankyou for sharing your story and i look forward to hopefully more updates as to how you are both faring.


Take care

Michelle