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.