Slightly Better - Last Post

Hello Friends & Family,

This will be my last post to this blog. However, I will be creating a new blog, for new beginnings: http://www.copewithms.blogspot.com/. Our trip to Costa Rica was a success. Even though we have not seen complete healing, as we had wished, there is still some improvement. The most important accomplishment was complete acceptance of where we are and what we need to do from here forward.  Until then, there had been an element of denial, at least for me. Our family continues to love and nurture one another, looking to the future, with an acceptance that reality will never be what we had hoped. However, it is still very bright and there is much to anticipate. Please pray for us; this is a tough disease! However, in the Reynolds' Family we are strong and learning to count our blessings, the most important of which are:

1) Strong love and support between Steve and Laura
2) Three smart, compassionate, beautiful, talented and gifted young women in our lives; Alyssa, Julianne & Michelle
3) Two strong sources of income
4) A beautiful home, in a beautiful neighborhood, in a beautiful area of the country
5) Life in the US, the greatest country in the world

For these things we are very grateful and appreciative, as well as for your support and kindness over the last year. My new blog will be about how a family copes with MS, specifically in a marriage. This is something about which I have wanted to write, for more than 10 years, but the pain was too great, until now.  My main purpose is to reach out to other families who are dealing with the challenges of Multiple Sclerosis in their lives, and to encourage them to not let it destroy them. Family is the most important thing!

Thank you again for all you have done over the last year. We are forever indebted.
Laura and Family

Nothing New to Report

We are pretty much at status quo with nothing new to report. Hope everyone had a great Thanksgiving. We had a quiet one here at home with the girls.

Recent Email to a Friend

Personally, I just think any recovery is going to take a very, very long time. Steve has had MS for 23 years now and it has been a very long, slow decline. Even if it takes that much more time, going the other direction, it will be worth it. To look at Steve, he does not seem any better, other than maybe his coloring. It certainly seems that he is not getting worse, although any type of exertion really does wipe him out. Right now, it is very hard to gauge, because we are all getting over a bad stomach virus. Anytime Steve gets anything like that, it takes him a while to get over it. He bought a recumbent, stationary bike about six weeks ago. However, he hasn’t ridden in more than a week, due to getting over the stomach bug, as well as busy schedules with the kids.

He did recently read a post from a guy named Shah, on the stem cell section of the MS Board. He went to Israel and has posted a great deal on that thread. Shah said that the improvements seem to start in the trunk of the body and then move to the extremities. He also said that it takes time. This would be in-line with what we see with Steve. Very slight improvement overall with bladder function, less twitching in his legs at night, and other things. However, it is also important to know that all of these improvements are very, very, very slight.

Encouraging News

Progress is much slower than we would like, but we did get an encouraging bit of news that falls in-line with what we are seeing. Steve forwarded the following email from a gentleman who went to Israel for similar stem cell treatments: "We have to give these cells the time they need to do their magic. I met a doctor who had observed many MS and ALS patients recovery post SCT and made a very interesting observation : areas closest to the center of the body recover first, and then the lower extremeties. So, trunk strength, bladder control, and hip flexion will improve before any significant change in walking or foot drop. This has been my experience being 5 months post SCT."

It is obvious that progress is going to be very slow. The good news is that Steve is definitely not getting any worse, which has been the case over the last 20 years. Maybe we have hit bottom and made the turn toward improvement. The above email was confirmation for us that we have made the right decision.

The other good news is that everyone in the family is well and we are having an absolutely gorgeous fall. The weather is perfect, sunny days, mid-70's, with a cool breeze. Life is good!

Don't Even Know What to Call This Post!

Wow, it has been a pretty rough month! It took me the better part of three weeks to get well... then Steve caught it. Even with all of his health challenges, he hardly ever gets "sick". In fact, we have lived here six years and he has never been to the regular doctor, until now. In addition to the upper respiratory infection, he broke out with a really bad skin rash. He is getting better now and the weekend should help, so he can rest. (By the way, I was tested for the flu and it came back negative. I think the flu would have been a relief compared to what we had!)

As for Steve's MS, we continue to see very, very slight changes. He has noticed that he only gets up once during the night, to go to the bathroom. He used to be up and down all night, at least three times. His legs are much calmer at night, as well. It is difficult to tell how he is doing mobility-wise and energy-wise, since he has been sick. MS patients do not handle stress very well, especially when their immune system is compromised. That has really knocked him down a notch or two, temporarily.

We did purchase a recumbant, stationary bicycle. Steve was just about finished putting it together when he took ill. Once he is able to use it regularly, this should provide cardiovascular exercise, which he is otherwise unable to get. My hopes are that this will relieve stress, increase endorphins, and aid in his improvement. Will post on that later!

Holding on to Hope

Tonight, I asked Steve what I should post on the blog about how he is feeling. His reply was that there is no measurable progress, but also no reason to be discouraged. According to ICM, the changes start to show up in eight to 12 weeks, and we have only been back for seven weeks. It is still early yet, but he continues to do his exercises and climb four flights of stairs every day, three times a day, at work.

As for me, I was extremely sick last week. It is not very often that I am down and out for days on end, but that definitely happened last week. After two trips to the doctor, two rounds of antibiotics, and a rapid-flu test (negative) I am feeling much, much better. It appears to have started as a really nasty virus of some sort.

Thanks so much for checking in on our progress. We greatly appreciate your concerns and would love for you to leave comments when you visit. That is the only way we know you have been here. Take great care and have an awesome weekend! Laura

Maybe a Slight Improvement

Steve and I were discussing the other day that we both think we see a slight improvement, ever so slight, in his physical condition. This is a conclusion at which we both arrived, independent of one another. One thing that is definitely better is his restless leg syndrome at night. He used to keep me awake, shaking the whole bed, throughout the night. Now, I hardly notice it. He also has people making comments such as, "You look like a million bucks!" Whether it is true, or whether they are just being nice, it doesn't matter. We are hearing it from enough different people that it is helping his disposition.

One thing is for sure, the progress will be slow. We have resigned ourselves to that. Last Saturday marked week six (6) since returning. Even though the clinic has said to expect eight (8) to 12 weeks before seeing results, they say it sometimes takes up to six (6) months. Our focus now is on doing what we can each day, without so much focus on the long-term. If things improve a little bit every day, the long-term will take care of itself. We are going to have to eat this elephant one bite at a time!

Thanks for your prayers! We need them and we feel them.