MS Post – last one in March

Well this is last day of March in the end of MS awareness month. Recently the FDA approved the medication that may help slow or stop the progression of Primary Progressive MS. So I called the neurologist a few days ago to ask about it. He is always told me there is nothing in the pipeline that would help me. According to I read this new drug may help me. So I thought I'd give it a shot and they told me they could see me next day at 11:30 AM. I tried calling my wife but couldn't get a hold of her. She had forgotten her phone and I didn't think it was a big deal enough to call her on her work phone line. Instead an appointment that early I thought I'm sure I can get in quickly unlike the past for his appointments are way in the future. When I called they told me that the doctor hadn't seen me for a long time so I needed to come in.
I haven't been to see him since I was a longer able to work. His appointments were always way into the future and has seemed really hard for me to plan on. He also had never had anything to help me and was pretty negative about my prognosis. Whenever I called with a new symptom he would refer me to I primary care doctor to deal with a symptom. So once I quit working I didn't see a need to see him. I had gone to regularly so that I can no longer work he would have the documentation to support my request for disability.
Now I called and expected to be only get in quickly. I found out that the 1130 the next day he told me about this due to a cancellation and the next available was May 25. Back to the same old story. I don't have much hope for this new medication both see him anyway. He is always been a Negative Nelly so I expect to find out that I'm not a candidate either because I'm too far gone for some other reason. I also got a waiting list in case there is a cancellation. Who knows when I will see him. Who knows if the new drug is even useful for me. That's what my MS is all about it's always "who knows".
I have to say I've been pretty grumpy this week. I think it's because the more I discussed my MS the more I think about it. I found thinking about it is useless and I didn't do do best if I just forget about it and live my life best I can. I'm not sure when I'll go to the neurologist but if I go before May 25 of let you know what's going on. Thank you for your care and prayers.

MS Post 8 – March is almost over

March is MS awareness month and it is almost over. This will probably be my last post with this theme. Many people are moody but MS takes this to a whole new level. I usually try to be upbeat but many times my mood is awful. Yesterday morning was one of these times.
I woke up feeling really sorry for myself. It really seemed make me feel trapped I can no longer drive my chair around the house. I could no longer go over and look out the window or go out on the porch when the weather's nice. Yesterday this made me feel extremely trapped. As a consequence I woke up in a very foul mood. I try not to share it with my wife but she could tell. Then when my son came I tried not to share with him. Later that afternoon the bad mood disappeared just as quickly as it appeared.
I wanted to share this because I have many very negative days and only try to post on positive days. It probably doesn't help give a clear picture of MS to only post on good days and so I am sharing this with you. Not looking for sympathy, my own self-pity is definitely enough for me.
There is now a medication approved for Primary Progressive MS and I will be seeing the neurologist sometime soon to see if I am a candidate. I'm sure it won't do anything fantastic but if I could get my right hand back enough to drive my chair I think I would be happy. No telling if I'm a candidate or out much this medication costs. Those things would factor into whether I would try it.
I woke up today and would not in a very good mood but nothing like yesterday. Some days all I look forward to is going to bed and going to sleep. It hasn't happened yet but I keep hoping that I will wake up as something really good will happen. I don't even know what it is I want to happen but my wife and I have phase so many disappointments and very little upticks over the last decade or so. Seems somehow they should balance out somewhere along the way.
The positives that I have over the last few years are all about the caregivers and caring friends I have. I really appreciate everyone who helps and cares about me.

MS Post 7 – MS Society

It's still MS awareness month and I wanted to say something about the MS society. This is a nonprofit organization that helps people with MS of all types. They do educational publications and occasionally sponsor a speaker. The center of our area is Minneapolis and so these as some of the problems that go with distance. Also Minneapolis is a much larger population base and for a slightly rare disease that makes things better for them in that area. They do help in our area but the larger area is easier for them to deal with. They have to help me individually to find a lift for my van when I could still totter around a little bit. It was electric but I do go to the back of the van, left the tailgate and lower with a button to get my chair. When I advance past that point and needed a different man they really had nothing to help me. I depended more on the Iowa Vocational Rehab for some help with that.
I see a lot of their post on Facebook and just wanted to mention why I don't wholeheartedly support them. They are the best MS support group there is but they lack the top grade that a organization that rates charities gives out. One issue is that they do not publish their financials and so this group has a difficulty rating them as far as administration costs versus charitable help. I understand that if they did open their books they would get a C or B rating. They do help a lot funding MS research and it recently started to tackle Primary Progressive. If you wish to support MS research they are definitely the place to go. I would be much more apt to repost their Facebook things if they at a higher grade of this charitable giving chart.
If you wish to support MS society there are walks and you can give directly and you can feel good that most of the money is going toward the disease. Perhaps not as much as it should but they are still the best that I know of. I got this off my chest now then move on to other things.

MS Post 6

Again it reminder that March is MS awareness month. One of my sons as asked if I can feel things in my appendages like my legs that cannot move except to spasm. I think he finds it strange that I can still feel but cannot move my legs. I have a deteriorated sense of feeling in the appendages that have problems working. I can still feel a number of things even though the feelings are dampened. I can still feel a lot and cold and have found out that I can feel when I spill hot coffee in my lap or on my arm.
When something hurts my foot or hands I can feel the pain and my response is that that appendage spasms by sticking straight out. It's really quite strange but again MS is what MS is.
I have a friend who is a paraplegic due to a farming accident and he must be very careful because he can no longer feel anything in his legs. He could get cut or frozen and never feel a thing. Me on the other hand I feel both for the most part.
One of the strangest things to me is that now my hands act very strangely when I'm in bed. As I lay there and do not move my body loses track of where my hands are. My brain thinks they are floating in the air above me. This sensation is very odd and I must move my hand a little bit so my fingers feel where they are. Of course there never floating above me it just feels like that. I don't get that feeling in my legs. I have no real explanation for these situations but do find them odd. MS is a strange disease but it is not a boring disease. There is always something new to deal with.

MS Post 5 – sleep problems

March s MS awareness month and the MS society posted on Facebook The link to an article about sleep problems that go with MS. My own experience is that most of the time I sleep pretty good. Problems show up when I take too long of a nap during the day. On these days and up not being able to sleep and sometimes I am still awake and my wife goes to work. I have about two nights like this a month. It is a very frustrating because I've always had this problem. A used to be I would get up and read in the living room. Now I'm not able to. I can only read for less than an hour on my iPad that I could no longer lift my hand to turn the pages. After that I just lay there until I eventually find sleep. The nights are extremely long and last night was one of these.
I used to have an iPad in the living room and when it was plugged in I could use the Siri function and set an alarm. Then when a one off I only got about a half hour of sleep and could sleep at night. Now I only have my iPhone to use Siri with. It's really stupid because I can set the alarm with Siri but strangely I cannot turn off the alarm with Siri. My hand doesn't work so I'm stuck listening to the alarm. Fortunately it only goes for about 10 minutes and then shuts off. That I can use Siri to turn off the alarm so doesn't go back on. That is a very annoying 10 minutes. So I quit using this function and just hope I wake up in time. Yesterday at didn't work out very well and so I had a very very long night.
I find the Siri function useful but unfortunately so stupid it's hard to believe. I can make a phone call with Siri. But guess what, I cannot answer a phone call with Siri or hang up when I get someone's voicemail. They keep telling me to push numbers to get out of the voicemail but Siri doesn't work for that. How can they make Siri so useful and stupid at the same time?
Oh well I'm just going to have to try to not nap today so I can sleep tonight. I know there people who have it a lot worse so I try not to whine too much.

My goat story – lighthearted story, nothing serious today

Today my subject is lighthearted. I want to apologize for the bad grammar that comes through many times. My voice software seem to work really good sometimes and then I trust it and don't proofread like I should. Many times I read my own posts and I can't figure out what on earth I was trying to say. Part of it is the software and part is my speech is not that good anymore. I know y'all overlooked that.
Today there was a post from a friend on Facebook with a video of baby goats. Other than Labrador puppies baby goats are probably the cutest things in the world. Now I have a goat story from my past that I will share.
This was the time I became a goat broker. Where I work there was a guy whose father had a small acreage and a lot of animals. There was an older goat that that there and he was having problems with it because it would need the other animals food before they could get it. He asked around at work if anybody wanted a goat. I said I might but needed to talk to my wife. We lived on an acreage and I thought the go could keep the horses company. We already had problems with the horses eating all the grass in their pasture so she thought a goat would not be a good fit. She talked to her sister lived on an acreage north of us and she said they would take it. So I told the guy at work that I could take the goat and that they would come and get it for their acreage. It was a good idea to him and we agreed he would bring it on a Friday and they would come and get it on a Saturday.
On Friday came he brought the goat over to my truck and asked how I was going to keep it in the back. I said I would just tie it to the center of the bed. He said no way. It was too dangerous and the goat might hurt himself. He said the goat would ride in the cab and be very quiet since he was a very mild-mannered animal. I said okay and into the cab he went. It was very funny on the way home as I drove through town. He was sitting next to me and was as calm as could be. Get a full set of horns so this made quite a picture. I came to a number of stoplights getting home and the other drivers did double takes and I think more than one hurt their neck to see ago next to me.
He ended up living with my wife's sister for a long time and was always a easy animal to take care of. That is my story of when I was a broker!

Autism – my experience

Yesterday I saw on the show 60 Minutes that Sesame Street introduced an autistic character. This made me remember the only exposure I have had to an autistic child. It was when my children were younger and I coached Little League (coach pitch) when I had an autistic participant. It really turned out to be a very strange and awkward situation for me.
There was a group of people who ran the baseball program in the small town we lived. It was called the Diamond club and they met in a local bar. Because of this I never joined because I stayed out of bars for many many years due to an alcohol problem. So I was left out of choosing up the teams. The people in this club became notorious for stacking the blue team with the athletic kids and the red team got the leftovers. They threw in a few athletes to make it seem like it was fair but everyone knew the red team was the leftovers. Kids didn't really seem to care. Of course I coach the red team and got the players that they decided I would get. I asked two years in a row to be included but was never notified of the meeting. For two years in a row they gave me a child named Danny who was autistic. His mother wanted to "mainstream him". Part of this mainstreaming was that he got to play baseball like the other kids. I would not have had a problem with this if someone would have talked to me in advance and give me some idea about a deal with this. All I knew was he showed up for practice and his mother drove away. It all seems pretty strange now, she never spoke to me once for two years. I had no idea how to deal with this issue but had to learn and the kids on my team told me how to deal with it.
I have no real problem with him being on the team but it was pretty obvious early on that he just wanted to be around kids a went to school with. He enjoyed I saw that was really good. The only problem I had as and he had no interest in actually playing baseball. This is what made it very awkward. When he was in the field playing defense it I was terrified you would get hit in the head with a baseball because he never really paid attention. He found the dandelions in the field were much more interesting. Since he was part of the team I felt I would be very heavily criticized if I just sat him on the bench and so I risked having him play. I noticed up very early on he had no interest in actually hitting the ball and seem to deliberately avoid making contact when he batted. In coach pitch I would pitch to the kids and if they miss a three times they were out. Danny tried to miss and then he would sit down. One time the other coach insisted I keep pitching to him until he made contact. Is took about 30 patches and when he did make contact everyone started to scream "Ron". It was really hard for me to see but he was terrified by the screaming but there was nothing I could do about it. His mom was at the games and never said a word to Danny or me. Looking back I really felt used and totally unprepared by anyone that should've really cared about it. I'm just glad that after two years I moved up to the next level and Danny didn't go out for baseball. I still don't understand why his mother never help me with the whole thing. I'm just glad we never got hurt because it was baseball's can really do some damage. Two years and she never spoke a word to me. I have to say I enjoyed Danny and found a very interesting person but I've had hard feelings toward his mother all these years.