Heuga Center Helps MS Patients with Wellness

I think the hardest part of having MS is the rollercoaster of good days vs. bad days. I prefer to think of the bad days as "not so good" days. I had a few of those this past week or so, and didn't get much done until yesterday. Dad and Ralph moved some old junk appliances out for the trash man and ten minutes later a scavenger came and hauled them away for scrap. That freed up space for me to get Dad and Clint to move another appliance out, which they also promptly took. They also took an old couch to the curb which the trash men hauled off this morning. My garage is finally starting to get to where I can move around a little in it. Can't wait to get it organized!

I found a recipe for Cajun Jambalaya that sounds good. I want to try it out, but first I am going to check the ingredients against where I am trying to go with my diet to see if I need to make modifications. If there are any "Swank"'ers out there, feel free to email me if you have any tips.

(I am not "Swanking" yet, just moving that direction.)

I called the NMSS the other day to talk about a few things, one of them being my interest in attending a wellness retreat, preferably one for MS patients. I was given information on the Heuga Center for Multiple Sclerosis in Colorado. A couple of other MS patients I know had just mentioned them to me last week, so I figured two mentions in one week is a pretty good sign. I contacted them and have been reading up on them. Their October program is full, and their 2010 schedule is not completed yet, but I will keep checking. I need some tine to get things ironed out anyway before I could go, so 2010 is probably ok. I will add links to the center's website to those who want more information- check the links in the sidebar to the right.

The Heuga Center is a 501(c)(3) non-profit organization and they do fundraising to assist MS patients who have a financial needs to attend the center. I have applied for financial assistance. I should mention they also have a separate program for caregivers, family etc. which they can attend.

Using Service Dogs and Assistive Technology with MS

Another patient in my MS Group meeting gave me an article to read that she had cut out of the newspaper recently. The article was about a nurse who was recently diagnosed with MS, and details her coping skills. I liked her advice: be persistent (I am, and I agree), get in a support group (again, I agree) and keep fighting.

She also metnioned that her black lab is a trained service dog. I had read a while back about service dogs for MS'ers and had decided a lab was a good choice. I just have to figure out if Cloe would get along with a new dog. I had a black lab for just a couple of days late last winter. She was a stray that was given to me, but I gave her to the neighbors. I was just trying to find her a good home. She was way too young and had too many bad habits to keep her. If I had known at that time I had MS it I might have kept her.

If you would like to read the article it was in the Indianapolis Star, section C3 on Thursday, August 27, 2009. Read it here.

Clinical Trials for MS: Patients Urgently Needed

Being an MS patient is a full-time job. Really. It is unreal to me how much stuff I have to do and how much I have to keep track of. I spent several hours last night just organizing all of my notes, writing things on my calendar, and writing all of my notes that were on little scraps of paper everywhere into one "To Do" list. My "To Do" list has 18 items on it right now, all of them pretty important.

I had PT again yesterday afternoon. I was surprised when my therapist was doing my hamstring stretches to find that I had a complete lack of sensation in my right leg. I could feel the "stretch" in the left leg, and last time I felt it in both, so I guess that the MS was to blame.

Last night I went to my monthly MS support group meeting. We watched the first part of a video on clinical trials for MS drugs and therapies. I am anxious to learn more, and would be open to participating in one. I was given a guidebook to read and will probably try to work that in tomorrow since it is the weekend.

For MS'ers, you can find a lot of information about clinical trials at the NMSS website here.

There are a lot of trials all over the country, and patients are urgently needed so if you are the least bit interested check out the link.

More Thank You's

Thank you to Roxanne at the MS Clinic, for all she has done so far and continues to do, along with the rest of the Clinic Staff.

Thanks to everyone at Central Indiana Neurology for all they do for me! Dr. Zhang, Dr. Blankenship, Becky, and the nurse whose name I keep forgetting (sorry! :)

Thank you to the staff at Erskine Rehabilitation for all that they are doing!

Thank you to St. John's and St. Vincent's for fulfilling your mission! I don't know what I would do without all the support!

Thank you to all my friends and family for all that you are doing!

Thanks be to God that I finally got a definite diagnosis and am now able to pursue treatment. Amen.

Thinking 'bout Big 'Ol Jet Airliners Lately

Before I get to that, let me just say that this morning I had the most mind-numbing pain in my head I think I have ever had. There literally are no words to describe it. At the time this was going on I literally could do nothing but lay and meditate. After a couple of hours I figured out that doing something else might help so I got up and ate some breakfast and after awhile it seemed to tone down some. When I finally did lay back down to my surprise I managed to fall asleep pretty quickly, thank God, and slept pretty well.

When I awoke a few hours later it was time to go to Physical Therapy. A different therapist worked with me today. She was really pleasant to work with and I had a good workout. Afterwards, I came home and sat outside in my lawnchair for 10 minutes, soaking up some rays (with Vitamin D, courtesy of Mother Nature).

I only have a cupful of energy to use each day, so on PT days there is even less I can get done. But I did manage to write a couple of letters and get my notes organized for the MS clinic, my next Doctor visit, and a grocery list started.

I talked to my Aunt Joan in Phoenix the other night. She was very kind, as always, and genuinely concerned after finding out about my MS diagnosis. She invited me to come visit this winter. While I hate to impose on anyone, even family, I know she was sincere and it wouldn't be an imposition. I will keep this on my short list of places to getaway. I have several ideas, but for now I have to concentrate on my current treatment and get some things squared away on insurance and a determination on disability before I can even try to getaway. And a "wellness retreat" needs to happen even before a getaway.

Finally, since I have been sharing music recently, check out this: (full album version with long inro):

The Sun: Better Source of Vitamin D Than Food Is

While I knew this already, an article I was reading in the September/October 2009 issue of AARP Magazine highlights just how true this is: One example, to get the vitamin D value of just ten minutes in the sun you would have to eat 6 1/2 pounds of shitake mushrooms!

According to the article, some doctors are recommending 10 to 15 minutes of sun exposure, a few times a week. With the weather we are having here (Indiana) I can start working this into my day a little more often. I have pseudo-exacerbations in any kind of heat at all, so I wasn't able to get much sun this summer. With temperatures moderating now it should be do-able.

There was another interesting article in that same issue I will go ahead and mention, about a man who was diagnosed with abdominal cancer in 1970 and given a year at most to live. He returned to his native Greece, and is still alive today, having outlived his doctors. A team of researchers is looking into why so many on the Greek island of Ikaria live so long- a third of the islands inhabitants are 90 years of age or older, and dementia is unheard of. It was an interesting read.

Ok, I just went and looked it up and the article is available here:

http://www.aarpmagazine.org/health/more_good_years.html

Listen to the Music

I heard from the Myelin Repair Foundation shortly after I blogged about them the other day. They were very gracious, and pleased to have been mentioned. Fot the MS'ers, I am sorry I haven't yet provided more information about their work. As I learn more I will provide updates.

Now, about my blog: Sometimes it turns out that you don't really know where you are going until you get there. While I never intended (and still don't) for my blog to have anything to due with music, it is inevitable that there will be some sprinkled in here and there, simply because music has been an important part of my life.

While the stuff I have shared so far has been somewhat ancient, they have been selections that I think are important for the MS community, not necessarily my music friends or my friends in general. I assure you I listen to plenty of today's music as well and as the opportunity arises I will probably share that as well.

I am off to continue what I am always doing: taking care of my needs, keeping positive, and staying as well as I can mentally and physically. Oh, and I will probably be listening to music.

Myelin Repair Foundation is Speeding the Way

There is a foundatoin I recently became aware of that has a new research model for Myelin repair I wanted to share. It is called Myelin Repair Foundation, and they are searching for an accelerated cure for the demyelination that occurs with MS. I am putting a link in a sidebar at the right. You can read more at http://myelinrepair.org/index.shtml .

I Am Now In Rehab (not that kind)

I started phsical rehabilitation Tuesday. I was so thankful to be getting started. The first appointment went well. The therapist seemed to be very familiar with Multiple Sclerosis and was very helpful. She started me on a few therapies and also measured some things as a baseline to check improvements by.

We also talked a little about swimming and was told that the YMCA is a United Way agency and may have funds to help with the membership etc. I hadn't thought about that, but sure will check into it. I was sent home with a printout of 6 diferent exercises to do at home, with a caution to not overdo it. They are going to be adding therapies as time goes on.

My temperatures seem to have leveled off a little the last couple of days, only swinging about 2 degrees per day. I sure hope it lasts this time. I still am having some trouble going to sleep, and seem to only be able to fall asleep when exhausted. If I liked the sleeping pill better I would take it more often, but I don't particularly like either one that was prescribed, so I only use them when I feel I have no other choice.

Creative Custom Canes

My new friend Tara (one of my followers who has MS) has found a niche for herself creating custom walking canes. The canes are interesting, and most are quite colorful. She even has one with Harley-Davidson logos on it. Makes me want her to make one for me! Not too flashy, though. Her website also has a lot of information for MS'ers, including how to support someone with MS, a Faces of MS page, and links. I told her I would give her a mention here.

Her website is at http://www.creativecustomcanes.com/ and her blog is at http://livingdaytodaywithmultiplesclerosis.blogspot.com/ if you want to check her out.

I am happy to be starting physical therapy tomorrow.

Come Sail Away: Keeping Your Spiritual Center With MS

Suddenly being diagnosed with Multiple Sclerosis was nothing short of shocking in every sense of the word. It has been a little over 3 months now, and I can tell you that it has been a rollercoaster of emotions ever since. Having read everything I can get my hands on since, I can tell you that I am not alone in this regard. Many MS patients, if not most or all, go through various stages of grief, denial, acceptance etc during the course of their disease.

While I am currently in an accepting stage and trying to be proactive in getting the best care I can, I was surprised to learn recently in an article I was reading that often with each new exacerbation an MS patient endures, the grieving process begins anew.

I know that there probably isn't much that will change this, but I nevertheless would like to remain positive as I move through my disease. I will be adding in the weeks to come to some resources for MS patients to find some positive things to focus on- inspirational, spiritual etc.

If you are on Facebook, check out the Multiple Sclerosis Group. Gemma Young, Administrator of the group, sends a daily email called the Daily Vitamin- an inspirational quote from various figures, along with her own message. It is a quick read, yet important. Gemma's messages help me keep my frame of mind in the right place.

I urge anyone with MS to be involved with counseling and support groups that are available, and offer a reminder that MS Friends is just a phone call away (link in right sidebar). I choose to stay focused on my own course, provide information for others along the way, and when possible provide a little inspiration. Speaking of inspiration, here is a video along those lines. Yes, it dates me a little. But it still rocks, and I do too.

Updates on MS Cognitive Games, Retreat Info

It has been a rough few days for me. I have had a few spasms and other complaints. I am hoping it all settles down. I am very thankful for the much cooler weather, however, and managed in between it all to actually get outside to enjoy the weather for a few minutes. I worked on the front deck for a short while today, then headed to the back yard to sit at the patio table soaking up some rays of sunlight. I hadn't been able to do that for the longest time due to the heat.

Speaking of sunlight, it is a great source of vitamin D. I have been taking supplements to get my Vitamin D. In addition, I am also taking Co-Q 10, and triple-strength fish oil capsules along with flaxseed oil. I checked with the MS clinic about all of these, and I also advise my neurologist in writing each visit. Please check with your medical professionals before starting any supplement regimen, as your case may be different.

I had a few minutes to look around at the MS World Memory Game and MS My Way Links (right sidebar). The MS World Memory game is in collaboration with the National Multiple Sclerosis Society. I played the game a couple of times to get a feel for it, and it was a handy little game to challenge your cognitive abilities. The MS World website does require registration (the usual basic info), but there is more there than just the game. The game has 3 levels of play (easy, medium, hard), but I only played the easy one just to get a feel. It was a decent game. When you first click on it, be patient though-it does take a minute or two to load. While it is loading you will see the deck of cards flipping by.

There is a lot more to the site to explore- chat rooms, message boards, and care pages are just some of the features. I found the MS book reviews to be interesting and can't wait to dig into the Living MS magazine. It is only available as an online read.

The MS My Way site has several different games to try and lets you keep track of your scores to see how you are doing over time. I only played the first one (you have to make your man jump up to catch balloons or squat down to duck under them as they float by). I am pretty sure the other games from their descriptions are very different.

MS My Way seems to be geared more toward introducting those living with MS to assistive technologies to improve living- vision, cognition, dexterity and speech are covered, along with staying connected, treatment and research, and affordability. I am sure I will visit again and again as my needs dictate as it seems to be very well put-together.

Finally, the National Multiple Sclerosis Society is sponsoring a Wellness Retreat weekend entitled "Refresh. Renew. Balance." at the Park Hyatt Beaver Creek Resort in Colorado on October 10-12, 2009. This is too soon for me to be able to go to the wellness retreat I so desperately want, but I thought I would pass this on in case anyone else is interested.

http://www.nationalmssociety.org/chapters/COC/programs--services/refresh-renew-balancing-your-life/index.aspx

Remember, I am passing on all of this just because I found it interesting and thought others might too. I have no affiliation with any of these groups and encourage you, as always, to evaluate all events and websites, the benefits and risks (if any) with your medical team.