Update in MS Research, Genetics and Clinical Trials

The National Multiple Sclerosis Society offers free educational programs on a series of different topics through September 2010. Offered on the second Monday of designated months, each is about an hour long. On January 11, 2010 the keynote speaker, Dr. Patricia O'Looney, VP of Biomedical Research for the NMSS, will speak on Updates in MS Research, Genetics and Clinical Trials as part of this Midwest Teleconference Series. To register, call 1-800-344-4867. To see all upcoming topics click the title of this post.

Advance Directives Available from St. John's Center for Spiritual Care

From a flyer at Erskine Rehab: Advance Directives including Living Will, Appointment of Representative, Power of Attorney for Healthcare and more available from the Center for Spiritual Care. 765-646-8182.

Special offerings at St. John's

I am passing on this information to my friends in the area. I am not affiliated with St. John's, just sharing. Medical Nutrition Counseling is available from registered dieticians and is provided to individuals in various diet situations. Call 765-646-8197 for more information. How Do I Go On? grief support group meets the second and fourth Thursdays of each month from 10 a.m. to 12 noon at Lindberg Road Church of Christ, 2625 Lindberg Rd. Free. Call 765-646-8179 for more information. Better Breathers, a free program for individuals dealing with any lung condition. Information, education, and fellowship conducted on the third Thursday of ech month at 3 pm in the St. John's Pulmonary Rehabilitation. For more info call 765-646-8499. Please call about the offerings to confirm details..

Vitamin B12 Added to My Supplement Regimen

I have added B12 (sublingual dots) to my daily supplements. Many MS patients get B12 shots. I just started so I will let you know if I notice any difference. I heard they go well with donuts so I should do good. Just kidding, the donuts are just because :)

December Update on Heuga Center Goal

Well I just got off the phone with Can Do Multiple Sclerosis (formerly the Heuga Center for Multiple Sclerois). I will go in 2010 if they have a spot open for me. I have to complete the application for the program and submit it, which I am going to try to work on this week. I am hopeful they will grant me a scholarship for the program. I see that they have one scheduled for May 2010 in California. If there isn't anything else scheduled I would gladly take that one, but I will have to figure out how to get there. I will not fly on an airplane anymore unless I am fleeing for my life from some calamity- the last few times I have flown I have had excruciating head and ear pain to the point of involuntarily crying. A lot. To the point of embarassment. This was before I knew I had MS. I thought I was just a weenie. Turns out I wasn't. I would imagine I will look at Amtrak to get out west unless someone want to drive me that far.

Merry Christmas Everyone!

I have been busier than, well, a one-and-a-half-legged man. Sorry for no updates for such a long time. I wanted to wish everyone a very Merry Christmas! I hope your holiday season is joyous and blessed. I hope you can find time to work with church groups and other organizations that help the needy. Food pantries always need food. The Salvation Army always needs funds especially this time of the year. There are many more people out of work this year than we have seen quite some time, so the needs are great this year.

I will post soon about my diet progress and more.

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.

MS World Memory Game

I found another online memory game to help those with MS who have cognitive difficulties. It does require registration at the MS World site. I do not yet know anything about the site, but I am getting ready register and go look around. I will give a future update once I explore the site.

It is at http://www.msworld.org/html/memory.htm and I will aslo add it to the MS Links in the sidebar of this page.

MS Cruise Questions

If anyone has been on the MS Cruise in the past I would be interested in hearing from you so I can hear some personal experiences. I won't be able to to in 2010 (I don't think) as I am still uncertain about my progression and prospects of either getting disability or gainful employment, and my debt load beyond those issues pretty much rules it out. But I have it on the back burner for future vacations, as it would kill two birds with one stone the way I see it. I am interested in finding out if the information is truly valuable and informative, if there is plenty of interation between the MS'ers and the medical staff presenting the seminars, and accomodations for dietary and medical neeeds. I have been told about this several times by different sources and would like a trip review if you have been. I can be emailed at fallcreekfun@gmail.com or you can reply to this posting.

Looks Like I am Going to Try a Modified Swank Diet

I have been reading the Multiple Sclerosis Diet Book for awhile now. Although it has its proponents and detractors alike, I have to do what I feel is best for me. And for now, I am pretty sure I am going to try a modified version of the diet as soon as circumstances allow. I like it for several reasons I won't go into right now. I first have to study some more, source ingredients, practice preparing dishes, etc, so it will be some time before I am able to convert over to the diet, nevermind weaning myself off of the customary ingredients in most recipes. And with so little energy it will take awhile before I can even tackle it head on, so for now I am going to find one recipe at a time to try, and as I learn them I am going to slowly switch over. I found an interesting internet message board about the Swank diet here if anyone is interested:

http://69.5.2.192/cgi-bin/yabb/YaBB.pl

I have to contact the rehabilitation center on Monday. They called Friday while I was sleeping and my neurologist sent them an order for therapy. I am excited. I have been asking for this for some time.

Musician with MS Jams On

In light of my posting earlier about MS Friends and the guitar pick merchandise they have available as part of the "MS Rocks" campaign, it dawned on me that I had read an article a few days ago in Neurology Now (I subscribe) about singer Victoria Williams, who has MS. Her MS problems started and were diagnosed around the same time she was breaking into the limelight as a talented musician opening for Neil Young on a nationwide tour. At one point she had to stop playing her instrument and sing acapella to finish the song.

She talks about a bunch of musicians banding together to form "Sweet Relief", a benefit album to help with the bills. It is an interesting article and is in the July/August 2009 issue of Neurology Now if you have it. I found it an interesting read.

Here is a link to the online article.
http://www.neurologynow.com/pt/re/neuronow/fulltext.01222928-200905040-00014.htm;jsessionid=KYhhBGKBlPl0j2S6fPhTgnnQTnzY9N1RQh9SLqLLkKTJyy33qsYn!1642465697!181195628!8091!-1

Friends and MS Friends

MS Friends is another resource to check if you have MS or are a caregiver. I am adding their link in the sidebar. They have been referred to me repeatedly by my medical team as a resource if I just need to talk to someone. It is a 24 hour a day support hotline, staffed entirely by MS patients. I haven't called them yet for any reason, but I am not opposed to it. Right now I am relying on friends and family for support and they have been fantastic about taking care of things. I appreciate everything everyone has done. Having a support system is absolutely vital.

Headed back their now to check out their "Rock for MS" Guitar picks. Hmm, ...

http://www.msfriends.org/index.php?pg=home

Or you can check out a short video about their work here:

RSS 2.0: http://blogname.blogspot.com/feeds/posts/default?alt=rss

My MS Diet Plans

Yesterday when I went to the MS Clinic, I worked with them on some issues with my diet which I haven't mentioned. I had been made to understand several weeks ago that for some reason increased Vitamin D (1200 I.U. daily) is beneficial to MS patients, I just can't remember why.

Then this evening I heard from Lisa, who told me the same thing. I asked her to get me some source information so I can check it out and understand it a little more.

I had been taking supplements for awhile, but then stopped when I was having some issues with my arm, and just never restarted them. I am going to restart them however. I could also get Vitamin D from the sunlight, but since I have a problem with overheating this is not really an option until the weather cools down enough. We are getting closer, but not there yet.

We also talked about increasing my protein. Sources mentioned included beans, peanut butter, dairy. All these are good with me. A tip they shared with me is to add powdered milk to a regular glass of milk, shakes etc. I wouldn't have thought of that, but it is a fantastic idea.I do have some powdered protein from the health store that Dad bought me, but it is rather pricey. If for any reason you are using the powdered proteins be aware they come in different formulations. The ones used a lot among body builders etc contain a lot of carbs and there are some without so many. I chose the one with fewer carbs, as I am a whole lot more sedentary and am not trying to gain weight or put on mass.

As long as I am more aware of what I am eating it need not be difficult. I like several kinds of beans, and some dishes with beans like chili and red beans and rice, so I will just tailor my menu a little to include these items as well.

The interferons (the shots I am taking) are supressing my immune system to control the MS, so it is important for me to take control of my diet and nutition to minimize any risks.

A Cohesive Plan for the MS Battle

On Monday I had another episode that I can not describe. I was sitting in my recliner because I just felt funny and then I started having what can only be described as "waves" of some kind. I think they were in my head and it was actually quite frightening. I tried to lay real still and was concentrating on determining exactly what was happening. Like so many sensations that come with MS, this was yet anothe strange and unidentifiable one. Luckily the sensation passed after several minutes, but I can say that my thoughts were rather jumbled during the episode.

On Tuesday I had an appointment with my neurologist so I brought it up with him. I don't know for sure if it could have been a seizure or not, but it is not unheard of. I sure hope not. Perhaps it was muscular in nature.

I had an appointment at the MS clinic today. We discussed numerous subjects, including vitamins and diet as it relates to my particular situation. They are finally going to see about getting me into physical therapy and/or occupational therapy for some of the problems with my right arm and leg. We also talked about swimming for exercise. I will have to check around, but I suspect the YMCA will end up being the option. I just don't know yet what kind of programs they might have or the cost.

I also was loaned a dvd called "You Can Do Yoga, for MS". It is by a certified yoga instructor who aslo happens to have MS. Although I haven't viewed it yet, my nurse tells me that it is designed specifically for MS patients and has some tips for doing yoga in your chair. I am excited about this and anxious to start learning.

Adult Stem Cell Tranplants Show Early Promise in MS Treatment

Dad brought me a letter cousin Kay had sent me in care of him about developments in Adult Stem Cell Transplants for treatment of MS. Researchers at Northwestern University's Feinberg School of Medicine are studying the stem cell transplants as a treatment for Multiple Sclerosis (MS). Although the trial was small, and only a first step, patients in that trial had some very encouraging results. Patients showed marked improvement with deficits such as walking, incontinence, blurred speech and blurred or double vision. Some patients are had complete reversal and are completely normal in all functional exams. It is one of several articles in the July/August issue of Saturday Evening Post starting on page 46 if you want to check it out. Actually, I just found the article here:

http://www.saturdayeveningpost.com/2009/06/29/wellness/general-health/research-front/breakthroughs-brink-turning-tide-ms.html

Assistive Technolodgy and Multiple Sclerosis (MS)

At my last MS group meeting, another MS patient passed out some information on a new website with a game for MS patients to help with cognitive skills. I just went there and registered and spent a few minutes looking around. The registration asks some very basic demographic information such as age and date diagnosed and what stage you are in and zip code. Once that is done you can play the game. It does not ask for any personal information. I did poke around for just a minute and I see there are other areas with information on Assistive Technology resources for telephone and computers, for example. I will try to report back after I have explored a little, but wanted to pass this on to others. My understanding was this may be part of a registry project, but I haven't seen anything about that yet.
The flyer says "MS Technology Collaborative Cognitive Game". Here it is if you want to check it out.

http://www.myMSmyWAY.com

Thank You, Everyone!

Just a quick shout out to Dad, Ralph Clendenin and Rob Gillum who has really jumped in there to help me get some household repairs done. Thank you Dad, Ralph and Rob!

Thank you to everyone who is doing so much for me! I could not do it without all the support!

Spiritual Retreat: Time For a Cool Change

I have some folks working on getting me into a retreat. While I am anxious for this to happen, there are a few things I have to take care of first. While checking out some of the options, I recalled a night a couple of weeks ago when I was having problems with the medicine. I was riding with Clint on his route just to get out of the house and feel half way human since I can't drive right now. My mood was depressed anyway and I was thinking about how drastically and suddenly MS came into my life.

I heard a couple of songs on the radio while I was riding along, lost in my thoughts, and this one really struck me. It has always been one of my favorites, from way back when I was a kid. Yes, it's an oldie. But it was so appropriate. I think I will try to learn this one if my hand improves enough to take up my guitar lessons again.

Cauliflower, Broccoli and Squash- Oh My

This has nothing to do with anything, just thinking about it. I have been trying to eat healthier for a LONG time, way before I got the MS diagnosis. It is a challenge though, especially when you have been a finicky eater throughout life. My tastes have grown somewhat over the years though, and lately I have been stepping up the pace on trying new foods. I have recently had squash on a couple of different occasions, and while it isn't something I would think about cooking, it actually wasn't bad. I put it on my "so-so" list for now, but will probably add it into my diet for variety. The same with cauliflower. They served me cauliflower on my first hospital stay in May. I ate it because it was on my plate, and I needed nutrition. I can't say I particularly enjoyed it, but again, it was so-so. On my second hospital stay they must have got a good deal on it, because I got cauliflower every day. And I ate it every day. I will probably add it to the rotation as well.

Broccoli I have eaten through the years, but only cooked. And it has to be chopped. Preferably in a casserole or something. I have tried it raw, at salad bars and such but that just doesn't do it for me. I guess I don't like the texture, it seems dry and crumbly and tastes like weeds?

For the MS'ers I am going to be adding some resources and links about diet going forward. Don't be afraid to research diet and I urge you to include dietary needs with your medical team to get their advice regarding your own particular situation.

A Phone Call From Afar

Tonight I received a surprise phone call from one of my step-brothers, whom I haven't seen or spoken to since high school. It was wonderful to talk to him after so many years. We talked about 30 minutes. I am sure I could have talked for hours. Hopefully we will be able to remain in touch now. This surely was the highlight of my day, if not since I don't know when.

I also spoke to a high school friend who works for a Neurology group at IU and told him about my condition. He filled me in on the group and their work and advised me it is generally a 6 to 8 month wait for an appointment. I have no complaints about my treatment here thus far, just communicating with everyone and keeping my options open.

I received a letter Friday from FSSA telling me I had missed an appointment. This is the only letter I received about the appointment-I was not notified I had an appointment or I would have been there. Not only that, but neither of people authorized to act on my behalf received anything, and they are supposed to be notified as well. I guess on Monday I will have to call them to reshedule.

On a related note, I found this article about the privatization of FSSA that I found interesting:

http://www.theheraldbulletin.com/local/local_story_233210738.html

On Thursday I received an information packet regarding Medicaid after 8 weeks so they can start their work. So much paperwork, so little energy. My core body temperature continues to fluctuate. This afternoon I woke up at 95.6 degrees and it has been up and down all day, currently at 99.7 degrees. I just really feel bizarre. I have asked other MS patients about these types of issues and read about it some and it is very common. Some patients quit having this trouble after a while on the medicine and others have persistent problems. I sure hope it mellows out for me.

For anyone who might be interested there is a web event on Wednesday, August 26, 2009 for those who have loved ones with MS. If you would like to learn more I encourage you to check it out. I would personally like to call attention to the fact that just because you may know someone who has Multiple Sclerosis (maybe even several), it is important to remember that MS affects every single patient uniquely. Also there are several different classifcations of MS and disease progression often remains a mystery, even to the patients and their medical providers. One of the things MS patients cringe at the most is to reveal your condition to someone only to have them jump in and say something like "Oh, I know all about MS, my sister-in-law has it" or something similar. It truly is frustrating and happens so freqently it becomes a "roll your eyes" moment. If you are truly interested in your friend or loved one's life with the disease the best thing you can do to be supportive is listen. Your loved one's experience may be entirely different than what you are familiar with. Anyway, the link to the webinar is here:

https://www.mslifelines.com/member/reg/join.jsf?cmp=7310

I have no interest or affiliation with this organization, just thought it might be interesting to some who read my blog. I am not familiar with the content as I haven't seen it yet either.

Just a Quick Thank You

Just wanted to say "Thank You" to everyone who has been so supportive to me these past several months. I may not have always said the right things, but they are in my heart. I have tended to be really depressed and negative for some time now. Much of that is due to the disease and medications. I tend to get confused as well, and forget easily. I am sorry. Thank you.

Going to the MS Clinic Tuesday and More

I am going to the MS Clinic tomorrow (Tuesday) to talk to them about my needs not being met right now. Despite the amazing outpouring of support from several family members and friends on a daily basis, I am still overwhelmed and exhausted and they unable to keep up with what needs to be accomplished. I am hoping it is a productive meeting where I can get some additional help and support.

I also received an email from my state representative and they want to speak with me regarding some difficulties I have encountered receiving assistance with food stamps and Medicaid.

I still have a million things on my plate, many of which are long overdue and my energy level is zero, not to mention the pain, fevers, spasms etc. When I read the message boards from other patients talking about this disease being a "Monster" I know what they mean. I have no job, I have no assistance, I have no money, and I have less than zero energy.

I told my state representative that I would be advocating for those with MS ongoing. The challenges are many. My core body temperature continues to fluctuate around the clock, every day. It averages a 4 degree swing right now daily. Every day, slowly 4 degrees up, then 4 degrees down. It is like having the flu without the vomitng.

Updates Coming to "Keep on Keepin' On" Blog

I wanted to let everyone know I am working on adding a few things to this blog, so look for changes ongoing. In particular at first, check ou the "MS Links" section at the bottom, as I will be adding several related to Multiple Sclerosis there.

There also will be some links and info on things like Natural Health, Emotional Well-Being, Gardening, Herbs etc. as I get time.

A Day in the LIfe of Montel Williams (video link)

Here is where to find the video of Montel Williams recent appearance on Oprah, which I talked about in my previous post. Thanks to Danielle Stevenson for the suggestion! Ok, its not a link yet, I am still working on it. Just copy and paste.

www.oprah.com/media/20090305-tows-montel-williams

Montel Williams on "Living Well Emotionally", life with Multiple Sclerosis: Overcoming Pain and Depresssion

I was channel surfing when I saw Montel on the screen, so I stopped surfing for a minute to check it out. And I was glad I did. Many of you may know that Montel Williams is a fellow Multiple Sclerosis sufferer. The show he was on was the Oprah Winfrey Show. If any of you didn't catch it, I can vouch that it is a must-see. His story is very similar to mine and so many others with this disease who have to say so often "You just don't understand" or "You just don't get it". His description of the the rollercoaster of emotions that one goes through living with MS, especially upon diagnosis was spot on. Montel was was his telling about how you have to learn so much on your own, and how much they don't tell you about the disease. I should have gotten MY clue that this was the case when my doctor advised me in his most serious tone that a lot of how I would do as a patient had to do with my mental atitude before he sent me off to the neurologist for treatment.

I am only a few months into an actual diagnosis, but I have quickly learned a LOT about this disease that I just simply had no idea before. A lot of scary stuff and a lot of crap-symptoms, dealing with the diagnosis while unemployed and unsiured, and more. All while trying to maintain my sanity and deal with the emotional ramifications this horrible disease can bring with it. This is while while simultaneously coping with the symptoms of the disease and the side effects of the medicine.

There is a significant portion of MS patients who choose not to take the shots. I am not real clear on why this is. I know some of it is financial. I am pretty sure some of it is due to side effects, and I am sure others choose to go off for different reasons. I am not sure how I am going to tolerate it yet either, it is so early yet. Let's just say I am doing a lot of praying right now.

If any of you are interested in checking it out, Montel's book is called "Living Well Emotionally". I am going to see if my library has a copy. If any of you saw the Oprah episode or read the book, I would be interested in knowing what you think. Here is a link to the Oprah site where you can read more if you are interested:

http://www.oprah.com/article/oprahshow/20090305-tows-montel-williams-ms

Anyway, back to Montel. I also felt he really hit the mark on the potential prognosis, even with treatment. It really matters not how my particular case will progress, it is still always in the back of my mind, (if not the front), worrying me. I did miss the first 15 minutes of the show because I didn't realize he was on.

His message wasn't necessarily doom and gloom, but of education and awareness. Those with MS live with much greater rates of pain, anxiety, depression and suicidal thoughts than most people realize or understand. I felt he delivered a positive awareness message for both patients and those who know or love them. and it is an important one.

Nothing But Trouble

This past 7 or 8 days has been an exercise in patience for the most part. I have run a fever with every shot and generally felt lousy. A week ago last Thursday I had to deal with a problem at the hospital in getting the person who was helping me with my disability application completed. After having left several messages over the past few weeks and not having a single call returned I had to report this to the hospital administration to try to get help. All I needed was the access code for the online application we had started so I could finish it. They assured me they would look into it, and the next day they called back and said they had spoken with the individual I was dealing with and he would get back with me within the next couple of days. If I didn't hear anything by Monday to call them back. I waited until Tueday and then followed up, as I still hadn't heard anything. One of the administrators called his supervisor as they were unable to reach him and it still took until Thursday at 5 pm to recieve a phone call from him. I did finally get the code though.

On Sunday I ran a fever for several hours with the shot and was up all night. In fact this one was longer than I usually remember and it didn't start to subside until 8 am. Monday I slept the biggest part of the day, and the evening was spent with back spasms.

Tuesday was the day I dealt with the hospital administrators, and I also made an appointment with my neurologist. It was supposed to be another shot day, but what happened next changed that. In the afternoon I was sitting in the bathroom trying to relax (no graphic details necessary) when I had an episode. I don't know if it was MS related, or stress related, but all of a sudden my head started swimming and it felt like I was sinking into a hole. I slid/slumped off of the toilet so I wouldn't hit my head and hurt myself. When I didn't immediately pass out I crawled into the hallway and rolled onto my back. Whatever was going on with my head continued for what seemed like an eterntiy, and profuse sweat was just rolling off of my face. After about 15 minutes the worst part subsided enough for me to put myself in bed and start making calls to my doctor's office and the MS clinic. A short while later the nuerologitsts office called and advised me not to take the shot until I had seen him for my appointment the following day.

As it turns out he did not believe it was related to the medications, but at the time I wasn't sure because there are some MS meds that DO cause episodes like the one I experienced and I wasn't sure about mine. There are also physiological causes related to MS that can cause this. He examined me, also looking at what remained of spot on my leg from the shot I took back on July 10, and told me I could resume the shots. It was a big relief because I really did not want to go without the meds. He also sent me to the lab for yet another blood draw, as there are several things that have to be monitored regularly. I am starting to feel like a good old-fashioned tomato pin cushion.

On Friday I had a counseling appointment. I have had an enormous amount of emotions the past 2 months and I HAD to get in for some help. This was just the first one, for an evaluation. The therapist seemed to be real good at his job, and at the end of the appointment it was decided I would go to a group that is dealing with anxiety and depression secondaary to an underlyng medical condition, which I thought was fantastic and appropriate. It certainly eased any negative feelings I had about the whole thing to be in this particular group.

Friday afternoon I got to see my Aunt Jenny and Uncle Mike, who were in town from Texas, and my Uncle Carl who was up from Colombus, although it was for a very short time. I sure wish I had felt better and could have visited longer, but I had some things to get done and was already wore out. Everyone went out to eat to celebrate several birthdays this month and I sure wish I could have been there.

I spent about an hour yesterday getting the last of my things out of the house I was renting and into my new home. Mom helped me clean the floors the night before. I didn't sleep the night before and it was a shot day, by 7 pm last evening I just couldn't go anymore and laid down. I got back up at 9 pm to go return my keys to the landlord and eat, then back to bed. I was exhausted and forgot to take the night medicine for the spasms, so it wasn't very long when I reawakened to do that. I then fell back asleep and slept until 4 am which is more hours than I usually get at one time. I sure needed it.

I must be geting old

I was thinking this evening about how much the world has changed since I was a kid, and frankly it's kind of depressing. I remember when I was much younger shopping downtown at Woolworth's and McCrory's for all sorts of things that interested me when I was a kid. You could find everything from school supplies to magic tricks, even pets at Woolworth's. It was one of two Woolworth's stores in town. The other was at the Mall. That store had hot roasted spanish peanuts just inside the entrance and the aroma wafted out into the common area of the mall. If your appetite was a little heartier you could always grab something from the lunch counter also inside the store.

That wasn't the only lunch counter in the mall, either. There was one inside JCPenney. Not only is the lunch counter long gone, but so is the JCPenney store. Another store I remember in the mall was the SuperX drug store. It changed hands two or three times before it finally went out of business altogether. There used to be several drug store chains in town along with numerous independents. Most are long gone. Hook's was bought out years ago and changed hands along with the rest. The last I knew they still had a Hook's museum at the Indiana State Fairgrounds, though I haven't checked recently to see if it is still there.

We used to shop at T-way when I was a kid as well. It later became Hill's and stayed in town for many years. It is gone too, and is now a Big Lots. Back in the day there were lots of locally owned businesses as well, men's stores, and women's stores, and several chain stores that were more local to Indiana and the midwest. They are pretty much all gone now.

It is not just the retail shopping scene that has changed either. It seems everywhere I look, businesses have either closed or been swallowed up by big corporate mega-chains. Everything from doctor's offices and dental offices to even the local cable company have been affected. My doctor used to be in a small but adequate building he rented in a small town. Doctor visits were $20 at the time, no matter what the problem was, and you could pay him when you had the money.

There aren't nearly enough local restaurants around to suit me these days either. I get the phone book out every once in awhile when I am hungry, looking for some place I might have forgotten about, but I always end up disappointed that nothing has changed. I guess that's okay, though, as I end up saving money by eating at home. I don't spend much at the stores these days either (not that I have any to spend anyway). Maybe that contributes to the economy being the way it is right now. Something to ponder.

The Obama Healthcare Plans

I am watching the re-run of the Obama press conference on the healthcare plan, if you can call it that. I guess since we still haven't heard any specific details of this plan, and congress is still debating, it is more like the Obama "pipe dream". I am all for drastic changes in the healthcare system IF it reins in costs to the consumer AND delivers better healthcare to the citizens of this country. But I don't see how it will get done, at least not yet. I am all for the so-called "public option". But I don't see how we will ever get this as long as the insurance companies are running the show. And make no mistake, they have been running the show for a LONG time now. Of course I don't know how this will affect me and others like me that either have a disabling condition or a long-term health problem. I am waiting on congress to get their act together and even present a plan yet. I am kind of tired of hearing the talking heads yapping about "socialized medicine". When you have an industry as out of control as the so-called "healthcare delivery system" and so many obstacles to actually getting healthcare like access, out-of-control costs etc it is TIME for a change. No one is complaining about the police or fire departments we all depend on being "socialized". And something as important as healthcare quite frankly should not even be a part of the capitalist system if they can't be reasonale and fair. I thank God every day that I am getting my current care from a charity program in a Catholic medical facility, because without it I would be screwed. Anyone know how I get a personal lobbyist on Capitol Hill?

Last night I decided to ride with another carrier on his route to help out, but that turned out to be a big mistake. Part way through the route I got very ill. I was dizzy, and nauseated and broke out in a sweat. I felt like I was going to vomit at any minute and had to have him break off the route and drop me at a local convenience store while he finished the route. (We were too far from home and there was not enough time to take me home and still get done on time). After a trip to the rest room, I just sat at one of the tables for an hour or so and rested. After a short while most of the symptoms subsided and I made a couple of calls to other carriers to pass the time. By the time I got home I was feeling a little better, so I think a lot of it was car sickness.

While I was sitting at the convenience store an friend and former co-worker whom I hadn't seen in quite some time came in so I got to talk to him for just a minute. He wanted to catch up but was running late for work so he said to call him on Friday.

I took my Betaseron shot today. I was on their website the other day and signed up for an account. They have some real neat services that no one told me about. One is a reminder service where they send you a reminder email on the days you need to take your shot. If I am not mistaken they also have a cell phone texting reminder as well and they also have some type of MS friend "mentoring" type of program where you can schedule a chat with another patient who has multiple sclerosis.

I have also recently signed up for a Facebook account, for no other reason but that my sister asked me to. It turns out that I am very glad I did. Not only am I able to keep up on many of my extended family members much easier now, but I have re-connected with some old friend as well. For me being somewhat homebound a lot of the time, it is a definite plus in staying connected.

SLOW DOWN!

I have had a very rough week. My frustration level has never been higher. A certain amount of it is my personality, and a certain amount of it is the feelings of no longer being in control and having to depend on other people for so many things. On Tuesday I hit my limit and had a crisis of sorts. After talking to my nurse from the MS clinic I called my neurologist to get some medication for depression and anxiety. He is starting my on Lexapro. He said it would take a few weeks to get the full effect. I sure hope it works well, and the sooner the better because I am just barely keeping it together mentally.

Ever since the MS diagnosis I have been having a whole host of issues. This week it has been what I call "slowness". I am not sure if there is a medical term for it, or even what is actually the problem (maybe the lesions), but I am having difficulty with things like words and speech, and my head feels "heavy". Last night it was like "drunkenness", and it was kind of scary. I had this a couple of other times in the last few weeks, but I think last night was the worst of the episodes. I finally went from my recliner to bed about 3:30 a.m. and laid there with that funny feeling in my head for awhile. It seemed literally like hours had passed when I checked the time, but it was only 4:15- 45 minutes later. That was the scary part I guess, that it seemed that time had slowed to a crawl. I am not sure about this, but I am going to bring it up at my next opportunity to someone on my healthcare team.

Earlier yesterday I went to the monthly MS patients group meeting. It was only my second time, but the group welcomed me like I was a veteran. They showed a short film about the research on MS, and there was a discussion and handouts. There are some really nice folks in that group and they are very willing to help out, and it seems that everyone is willing to share their experiences and knowledge. I brought up the incredible soreness in my legs and the "knots", and a few in the group indicated that they had similar experiences but that maybe they would pass. They also gave me some tips to avoid this.

Today I woke up about 11:30 a.m. and was still "slow". I had trouble even trying to figure out if I had anything to get accomplished today. After a short while I decided I needed more sleep so I went back to bed from 1 p.m. to 3:45 p.m. When I awoke I felt a little better, but the slowness was pretty persistent. I just decided not to worry about anything at all and just watch t.v. and rest.

This evening I talked to Lisa for awhile and got on Facebook for quite awhile. Maybe tomorrow I will feel a little better. I sure have a ton of stuff to get done this weekend.

"Knot" My Day

I had to get out today to get some stuff at Menard's and Meijer's. I love Menard's for that kind of stuff, but I sure do wish they had electric scooters like the grocery stores do. I had a small list and just make one round, but it was exhausing. Then I realized an item I needed was in plumbing and not near the seasonal garden stuff by the checkout and my legs were already hurting pretty bad, so I had to skip it. I also don't like that you have to go in one entrance at one end and the exit is at the other end.

I also went to Meijer to get some groceries and when I was there I picked up a case for my cell phone for $6. Verizon wanted $20 and up. I needed to get the cell phone out of my pocket so it wouldn't rub on my leg as it was hurting my leg pretty bad. I picked up some Stouffer's frozen dinners on sale for $2 a piece and some frozen Waffles on sale. I am eating a lot more of this kind of stuff now. It's quick and easy meals. I used to make my waffles in a waffle iron, but that is just too much hassle now and I really like waffles. So, back to the old frozen, throw-em-in-the-toaster type. They aren't nearly as good, but they will do.

When I got home I had knots in both upper legs. I had to massage them a little and then I put ice packs on them for awhile. Tomorow I am going to try to find some of those gel packs to keep in the freezer, so they will be handy.

Trip to the Doctor and a day of rest

Haven't checked in for a couple of days. I had an appointment with my neurologist Friday. My right leg is still weak as a kitten. I am able to walk around on it but I have to use to cane or I wouldn't be getting far. He checked the strength in my arm and leg like he always does, and we talked about some of my concerns. I also checked in with my nurse at the MS clinic. They are still getting some of their programs together there, but she is going to see about getting me the physical therapy they talked about when I was in the hospital.

Anyway, the neurologist signed for me to get a handicap license plate so I can park closer when I am able to drive myself and he signed for me to get a cooling vest from one of the MS agencies. The vest is something I can wear outdoors in the heat so I can stay cooler. He wasn't sure about the concept, but some of the MS agencies advocate them and one nurse I talked to said a patient used one on a bike ride and reported that it was still cool after two or three hours. I don't know if I will be approved yet for it, but I would like to have one because I haven't been able to garden or tend to me plants the way I would like to. I can't stand the heat and it often causes other problem including problems with vision and dizziness.

I also talked to the company that is providing my Betaseron. They received my assistance paperwork and it looks like I have been approved, just waiting on the final word. They said I should hear from the mail-order pharmacy by Monday or Tuesday. I reminded them that I will be down to one final dose come Sunday when I take my shot and that one would be gone on Tuesday. She said they could overnight the medicine to me. I am so thankful to be approved for the assistance, as this medicine is VERY expensive.

Today was busy, as usual

I had a ton of stuff to do today. I wasn't sure I could get it all done. When you have MS you learn real quickly to make lists, that way you can keep track of what you need to get done. I have already had several days of slow thinking and forgetfulness, so my lists help. The only bad side to this method is it seems like the lists get longer and longer, and it shows me how much I am not getting done. The things I did today were all important stuff, like faxing assistance forms to the company that is providing my Betaseron medication and visiting Family and Social Services to turn in some more forms. (I still am not done with all the forms they need, but a little closer). I also went to the hospital to take care of some business there. Then to the post office to change my address.

I am so glad Dad is well enough now to haul me around. My leg is still heavy, and my arm/hand are still numb and tingling, so I still can't drive myself. The air conditioning is "some-timey" in Dad's car and wasn't working well so the heat started to get to me and for awhile today I noticed my vision was starting to blur real bad again. I sure will be glad when this current phase of the disease goes away.

I sure do miss my job, as I really enjoyed delivering newspapers. I miss being out at night, and I miss the other carriers who were my friends. I was hoping that I would get more relief out of the medicine quickly so maybe I could get back to it, or at least sub a route once in awhile, but I was a little more optimistic I guess than I should have been.

I did a little cleaning at my new house this evening, and I am paying for it now as I am having pains all over, in particular a real intense pain right now in my spine. Going to take yet more pills and call it a night.

In the Beginning...

I have decided to start this blog for several reasons. Mostly it will be a communication tool for friends and family to keep up with my activities, the latest with my health and current treatment. It is not that I can't or won't talk to those who know me in person. But the life of an MS'er can change from day to day or hour to hour, especially when having an exacerbation of symptoms. And quite frankly I suffer from fatigue as is (as do many MS patients) so having to keep everybody up to date individually would be exhausting. I thought this would be a great way to tell the story one time, and my friends and family can keep up with me by checking in at their convenience and then when I see them or talk to them our visit won't be dominated by the "latest" on my health (which could go on for hours at times) and I could just enjoy their company. This blog won't just be about my health, or just about MS, it will be about ME and my life, and topics of my interest. But, as anyone with MS knows, when you have MS it is often a daily struggle just to make sure MS doesn't have you, so there will be a significant amount of material here relating to Multiple Sclerosis. Maybe I will meet some new friends along the way as well, who knows, this is the internet after all. If you have any comments, questions, or ideas as this blog develops feel free to shoot me an email at fallcreekfun@gmail.com.