Clonazepam .5 mg twice daily
Topiramate 1.50 mg twice daily
Duloxtine Delayed- release 20 mg twice daily
06/08/16
It has been awhile since I last updated. I hope to do it more but we will see if that holds true.
So what has been going on with me. Well I found this site wants me to pay to post vids. Hence the view here. Living on a fixed income. I shouldn’t be paying to post vids.
Because of my condition I can only do one or two things a day. When I do do something now a lot of thought has to go into it. Like will I be able to get in, will I be able to get around. If needed will I be able to use the bathroom amongst other things. I live in a new world now, where even eating is a major task
Tuesday, December 29th, 2015
Clonazepam 0.5 MG
Topiramate 100 MG
It has been awhile. Happy soon to be New Year to All! I have been busy for the last three months, so I was unable to do any rehab; however, I recently updated everything else on the site. Since I have spoken last, I am attempting to live by myself. So far, so good. I am currently living alone in something that’s above my budget, but who isn’t (probably most people aren’t though). But it is all I could get. Everyone else discriminated against me. So in the past year, I have gotten a couple of new things.
First and foremost, I got Readi-Steadi gloves and they seem to be working. I use them for eating, typing, and writing. They seem to help a lot with the tremors. My hands seem to tremor less as well. I noticed a decrease in the tremors in the area the glove is placed on. Unlike other electrical equipment, if the glove gets wet, it won’t break (for example, while eating cereal or soup). Since I got measured for it at my occupational therapy clinic, I was able to use Skype with its creator for fine-tuning and functionality which seemed to work fine. I’m going to continue to use it.
The second thing I got this year were leg braces. Now, they’re not leg braces you think of in the normal sense. They don’t help me walk. They just force me to use different muscles in my legs. I try to wear them every other time I go to the gym and make sure I’m forced to use the muscles I don’t use so often.
Thirdly, I got a balance vest that uses small weights between a quarter weight and a full weight in your trunk to trigger your muscles to help you balance (I hope I’m getting this right). I wear it everytime I walk unless I forget, like today. It’s another thing I’m going to wear for the future.
Finally, I got a Liftware Spoon which counteracts your tremors. I use it everytime I eat. The only change I wish it had is some sort of locking mechanism for the spoon because I have to tape it everytime I eat due to my poor coordination.
So as I said, I updated all of my videos. In my walking video you’ll see that I fall. I could blame it on a lot of things. I don’t get hurt. Falling is just one of my realities.
Monday July 20, 2015
I don’t have much to say. You can go to my contact page and click the gofundme link to see pictures and a video of me at CrossFit.
PS I really dislike handwriting
Monday March 23, 2015
Clonazepam 0.5mg twice daily
IVIG every 5 weeks
So I’m not keeping up on my diary like I planned to. Things will happen.
So since I got sick it’s been a battle for me to have my own independence. Whenever I want to do things alone now I almost have to push harder than I did in the past. It doesn’t always have the desired result. One thing I could see is today I might be unable to do something but tomorrow I can do it. Same way, today I might be able to do something and tomorrow be unable to do it. Only I know what I can and cannot do.
I got leg braces last week. I just happened to be at Magee’s Gym when the guy came with my braces. Otherwise, I would have had to make an appointment to get them. Coincidence was in my favor this time.
I also began to walk totally unassisted. I can’t go far but I can do it. It is my first step, no pun intended, to becoming independent.
So I’m completely off of steroids now. I only take the IVIG every 5 weeks so far no tremors. If all stays like this I’ll put the IVIG to every 6 weeks. Let’s hope everything stays the same or gets better. I take the clonazepam for tremors. I don’t think it really works for me, but one thing at a time. Currently I’m experimenting with the IVIG.
Everything is the same at the gym. I don’t think if I went everyday and worked out I would be able to take my own steps. Here’s to pushing forward.
Here are some random videos:
Dictated to Anna
February 22nd, 2015
Clonazepam 0.5mg twice daily
IVIG every 4 weeks
So yesterday was 2 years since I had my fall and cut my eye and had to go to the hospital. Here I thought getting stitches was the worst thing that can happen to me. I guess I was wrong. For future reference, riding in an ambulance is not any fun. They were gonna take me to the closest hospital where I might have been misdiagnosed. Fortunately I could tell them my social security number, my birthday and my drivers license number (I still don’t know how they didn’t know I was making them) so they took me where I wanted to go which was the Hospital of the University of Pennsylvania. I wanted to go there because I had a neighbor/friend who worked there. There I met the doctors I have now and they seemed to know about my illness.
I still continue to get frustrated. I wake up and I know my schedule. When it gets deviated from I feel my day starts in disarray. I may like the schedule so much because its one of the few things I can control. I’ll have to learn that there is an ebb and flow throughout the day. It’s gonna be a hard lesson. One I may not learn but I’ll try to learn it. If I don’t learn it most things will change. How I get rehabilitated might change.
One thing I learned through all of this is nothing lasts forever. I thought I would be well I guess I was wrong. Also if things stay the same forever I may not see any improvement like I currently see. Yet another learning experience. I’m going to be really smart after all this or I hope to be really smart after all this.
I got a dog last year. I think it has helped me improve. Through feeding him and caring for him I get to practice other therapies. Having something else depend on me is I think useful to getting better. A side note… I think this dog likes that I have tremors. I think my constant shaking relaxes him. Also he goes up to anyone in a wheelchair thinking they are me. I think he equates the wheelchair with me.
Yesterday I tried CrossFit for the first time. Although it was adapted it was still hard. I like that it provided a challenge. Throughout it all I was standing. As long as I could use my arms for balance I was fine. I had to step up on a box that was about knee high. I had to do pushups on the same box and I had to do sit to stand while holding a bar. And I had to support my weight with my hands while I put my knees to my chest. That time in two years that I supported all my weight with my hands.
So far so good being off the prednisone. The next thing I’ll get off is the IVIG. If I don’t see any negative impact from it I’ll stay off the IVIG.
At the gym I continue to improve. I can now do .65 miles on the treadmill. I continue to go up in speed. I also can get further on the Nustep. I still have to practice speech, writing and typing. There is always something.
Dictated to Anna
February 15th 2015
Clonazepam 0.5mg twice daily
IVIG every 4 weeks
I see no negative reaction from the prednisone. I got IVIG this week and it helps but instead of getting it every 4 weeks i’m going to be getting it every 5 weeks depending on my insurance. My tremors still annoy me, after I get off the IVIG I hope to try a new med for them. Currently I use Clonazepam to what I think is no avail.
I still see moderate improvement at the gym. I can now walk a half a mile on the treadmill with only supporting myself with my hands. I also went up on the weights. There is no telling when I’ll hit a plateau but I’m ready for it. I started to keep a powerpoint on my exercises. I will publish that once I get more information in it. I’m also seeing a moderate improvement in speech but I’m still hard to understand. Eating is getting a little better too. Unfortunately now I have to treat everything like a therapy meaning whatever I do in a day is now a therapy.
So yesterday I went to the Art Museum. It’s funny not being able to read anything because my eyes are bad I just have to make up my own story about the art. It is almost like when people look at me. I need a sign to explain everything. I think it’s better to make up ones own story about the art instead of it being told to you.
I just want to be treated like the majority of people. I know the majority of people don’t use a wheelchair, have the experience of laying in their own vomit, needing help to sit up…I need to realize I’m never going to be like the majority of people. That is the hardest thing for me.
A while back someone said they want to pull a Thelma and Louise with me. Even though they probably weren’t serious about it, it was good they can relate to the pain one goes through when they have an illness. Even though I have no intention of this I probably will never forget it.
I never plan on improving so when I have a modicum of improvement I’m surprised and when I don’t improve I’m not disappointed.
Dictated to Anna
January 26, 2015
Clonazepam 0.5mg twice daily
IVIG every 4 weeks
So its been a week with no Prednisone. I see no negative impact from being off of it. If this continues I’ll stay off of it. The next thing I’m gonna get off is the IVIG. For the tremors I hope to change the Clonazepam.
At the gym I can go ½ a mile on the treadmill. On the Nu Step, which is like an exercise bike with a dining room seat, I go for a half hour with the tension at 15. Also on that I use it for a half hour and go a mile and a half. I work out my upper body too. I’m not gonna list the weights or exercises because the weights are kind of embarrassing but I am seeing progress there.
Saturday January 17th, 2015
Prednisone 2.5mg
Clonazepam .5 twice daily
IVIG every 4 weeks
Tomorrow I stop Prednisone completely. I see no negative side effects from going down. I had IVIG this week. Also, I didn’t see any negative side effects. Since I don’t see anything negative, I think it is working. I take the Clonazepam to fight the tremors. I don’t know if that or the COQ10 is what helps. I’ll try changing that when I’m not changing anything else, since changing too many things at once may cause me to not realize what is or is not helping.
So far so good at the gym. I am progressing. I went up in weight and speed on the treadmill. I still use my arms a lot but I hope that changes. I’m gonna start speech therapy next week again. Let’s see if that helps. The main cause of ataxia is poor coordination so when I write I apply too much force which makes writing hard and also since I may want to move a little instead I may move far. Even though I want my movements to be small they may be drastic which I’ll continue to work on.
So I mean no offense to anybody these are just my thoughts.
I don’t’ think there is good luck or bad luck. There is only luck. Either you have it or you don’t, there is no telling which. What I mean is you don’t know if things happen to you because of a prior decision or if they are just happening. If they just happen I consider that luck. So I really don’t know why this is happening to me. Is it luck or because of a prior decision. I will never know. I just have to keep moving forward.
The one thing I find hard about being in this position is I don’t only have to have an inner dialogue I also have to explain that to anyone that is helping me. And that is a problem for me to work on… the communication. One example is I know how to best maximize my time and instead of explaining how things are going to take place I just say the time it will take. I guess being in my position it’s another thing I have to change.
I started reading this week. It’s the first time I read anything but a text or email since I got sick. It’s hard but worthwhile. I think over time it will get easier. I got a Kindle because the pages of a book or magazine give me trouble.
It has been 3 years since the onset of my illness. 3 years ago when I thought I had poor vision I could remember I was on 13th street and I made an appointment to get glasses. Unfortunately no one picked up on the start of my illness or things may be different now. Oh well.
Dictated to Anna
Sunday January 11th, 2015
Prednisone 2.5mg
Clonazepam .5mg twice daily
IVIG every 4 weeks
I still go to the gym about 5 days a week. I’m going up or staying the same in weights. I use the treadmill with help of my hand and a safety harness. The safety harness is only there in case I fall, it is not holding me up any. I use my hands for that. Each time I go for a higher speed for more time. I started doing heel raises 3 reps of 40 because I have too much heel inflection when I walk which I think is me feeling for the ground with my heel. I’m working on strengthening my obliques to help me walk better.
For a gift I got the spoon and fork from LiftWare Labs. Thanks Paul and Jen! The way it works is it cancels out the tremors meaning you shake but the spoon stays steady. It takes about a week to get used to but I can already see an impact. I seem to make less of a mess. I tried it with soup and I didn’t make that much of a mess. There is also a fork that I got with it. I have not used that yet but will try in time.
So just because I’m in a wheelchair people think I have changed. For the most part I’m the same person I just have wheels now. I’m pretty much the same person I always was only talking, walking and anything that takes coordination gives me trouble. This is probably something that all people who are disabled deal with. Unfortunately only my cerebellum (the part that deals with coordination) was negatively affected.The rest of me is mostly aware. It is hard for people to see that because of the way I sound or look. The way I look is I shake often because of the tremors (uncontrollable shaking) which I don’t like either, they probably hurt the other person to look at me than they hurt me.
I drink one coffee a day. That may make the ataxia worse. It’s the risk I’ll take.
In time I hope to type everything on my own with supervision but for now its easier if Anna types them because the mousepad gets in the way. Damn mousepad!
Dictated to Anna
Saturday January 3rd 2015
Prednisone 2.5mg
Clonazepam .5mg twice daily
IVIG every 4 weeks
I’m slowly coming off of Prednisone. In 2 Mondays I should be done completely. I see no major side effects from coming down. I take the Clonazepam for my tremors. I don’t know if it works for me but I’ve been taking it so long I say it does.
I go to the gym 3 hours a day, 5 days a week. I work out my upper body, I do some cardio on a New Step (it’s like a stationary bike but it has a normal seat) and I practice walking on a treadmill. I try to walk in between the equipment too. I still need a harness at the gym. Here the spreadsheet when I first started to track my therapy hours. The spreadsheet will change over time:
https://docs.google.com/spreadsheets/d/1rmSCklbYc1ZOOrzC2ERfeNfFQYpdqTddCqKZ7NxvTnc/pubhtml
So its been a year since I started this page. I have watched the video from last January and the latest one. I see some improvements over time but it’s not happening as quick as I like. This year I plan to have more improvements quicker to help my independence. In my last entry I said what independence was for me.
Even though my injury is uncommon people paint me with the same brush as the characteristics I share with someone they know or knew. They don’t mean any harm by this but it just makes it easier for them to understand. Like anybody with some sort of injury we are all different and the choices we make leading up to the injury and who we are affect how we react when the injury happens. For some of us it is easy, for some of us it is hard but for all of us we have to take this change in stride because nothing is going to change it.
I think I go to the gym everyday, and practice walking amongst other things so I will hopefully be ready for a cure when or if they get one. If they don’t, at least I’ll be in good shape and I’ll know how to function with my illness.
Since this blog is the primary way of me communicating with people since communication with me proves difficult I’ll use it for that. If you want to know what it’s like for me to talk, try exhaling all the way and then talking. That is just part of it. My coordination was affected and you need so much coordination to talk or walk or do anything for that matter.
In the new year I hope to update this diary weekly but we’ll see…
P.S. Here is a funny story: So I had the front desk at Magee call me a cab. So they did. My friend (aide) and I waited for a half hour and the cab finally showed up. My friend asked the driver if it was there for me. The driver said it was. As I started to go down the ramp he put his hand up for us to wait and said “I locked my keys in the car.” Without another word he just took off running and ran until we couldn’t see him anymore. I think he kept running. There are many funny parts to this story. Some of them are: we had to call another cab and waited 45 min, the first cab was still there and running with its light on, the cab with his keys locked in it was also blocking 2 handicapped spaces at a place that handicapped people frequent and finally the guy who ran away looked like a guy who never ran before.
Dictated to Anna
Sunday December 21st 2014
Prednisone 5 mg once daily
Clonazepam 0.5mg twice daily
IVIG every 4 weeks
This week I received the balance vest. I got the weights placed in the correct areas by a physical therapist. I already see a little improvement (see my videos). Over time I expect there to be more. I also got fitted for leg braces to help me walk. We will see if I get them.
So this post is going to be longer than most. Call it an early Christmas present if you like. This is a little bit of what I’m thinking.
I realize that there are 5 component for getting better, they are physical, occupational (things you can do everyday), diet (or what you eat), mental (emotional) and speech. I’m practicing all of these. You have a worse chance of recovering if you don’t practice all of them and if you don’t consider them all equal. Personally, I don’t think one is more important than the other just some are easier. There could be more but they are escaping me now.
What I’m about to write isn’t intended to hurt or offend anyone. If it does, I am truly sorry. For me, independence was a big thing. When I say independence, I just mean being able to walk to the corner and get a coffee or cook a meal. Now, I have to depend on someone else to do that. Since I’m dependent for now on other people one of the things I have forced upon me is having to live by their habits and quirks. It is a big change, one I have to get used to and one I’m getting used to every day. I work for my independence every day.
Like any traumatic event it’s going to affect friendships and relationships, you will lose some and gain some. The big thing is not to get depressed about the world you lost. It’s gonna happen. Unfortunately, this is going to effect anyone who is in the close circle of the person affected.
I read last week that the average lifespan of somebody with my illness is 9 years but that doesn’t really affect me because the average person doesn’t get my illness. It just made me think about things and try and get my priorities straight, which isn’t easy but I hope I can do it.
Frustration is a common feeling. It’s almost too common of a feeling. I get frustrated because I can’t easily do the things I used to do. It is all a learning experience. I let my frustration cause my anger which doesn’t do anybody any good. I may sound angry at times but that is just the way my voice sounds since it is hard for me to talk or show any intonation. Because I like to be economical with my words; texts, emails and speaking all seem like I am being short with people but I’m not. It is just easier for me.
I am writing this as quickly as I can think about it. Sorry if it doesn’t make sense. I dictated this all to my friend and caretaker Anna.
Sunday 12/8/2014
Clonazepam .5mg twice daily
Prednisone 7.5mg
IVIG every 4 weeks
I’m down on Prednisone to 5mg tomorrow. Hopefully I don’t see much of a difference. Soon I plan on being off of it.
I’ve been going to Therapeutic horseback riding once a week. I think it’s helping with my walking. I let go with one hand and then the other hand and at times I use no hands. It is really working out my abs.
I continue to increase the speed on the treadmill, right now I am at speed 1.2. It’s also helping me walk. I think I need to gain muscle back in my legs.
Although I see some improvement in my walking I wish I wouldn’t focus so much on putting the heal down first. If it could only be a little more delicate.
I need to practice occupational therapy and speed pathology because I seem to let them slide the most.
If you have any tips or comments you can reach me via email.
Monday 11/10/2014
Clonazepam .5mg twice daily
Prednisone 10mg
IVIG every 4 weeks
Yesterday I started therapeutic horseback riding. I think it will prove beneficial. I could ride the horse by myself, I don’t need someone else on it.
Since I don’t know if I’ll ever work again, I’m going to treat my recovery as a full-time job. I’m going to keep a spreadsheet that I’ll publish when it is sort of filled.
People have to be comfortable with me looking uncomfortable. It is one of the ways my brain is going to train itself to do things. I will never hesitate to ask for help if I need it but people should let me ask. One of the things that is unspoken or spoken about this illness is the frustration one deals with.
I’m not in any way comparing myself to Stephen Hawking or do I have ALS. Regardless, you should go see The Theory of Everything.
Sunday, October 19th, 2014
Prednisone 12.5mg
Clonazepam .5 mg twice daily
Rituxan is done for now
IVIG every 4 weeks
This week I started walking on a treadmill while looking at myself in the mirror which I think helps. The first time I walked at speed .2 and anytime I tried to go to .3 I had a bad tremors. The second time I started at speed .2 then went up to .3. On my third time on the treadmill I started going up to .7 periodically. I did not have bad tremors. I used .4 as my constant going up to .7 periodically. I put a lot of weight in my hands but I only wear the harness in case I fall. I think this will help with my walking.
Raquel Evangelisti and Anna Rogalla started working with me in mid September. They aren’t trained in any specific therapies but they really helped me. They were found through care.com and this blog. Hopefully I will see more progress.
Unfortunately I will no longer use the gofundme site starting tomorrow. I will keep you posted on my future fundraising efforts.
Wednesday 10/1/2014
Clonazepam .5mgs twice daily
Prednisone 15mgs
Retuxin IVIG 150 mg every 4 weeks
It’s been 3 months since my last update. Sorry about that. I started walking for an hour continuously each day. I’m going to try therapeutic horseback riding for the ataxia. It’s supposed to train the brain on how to walk. Hopefully with the Retuxan I see some improvement. My next step is that the doctors are slowly going to wean me off the steroids (prednisone). We’ll see how everything goes. I will keep you updated.
Thursday 7/3/2014
Prednisone 17.5mgs
Clonazepam .5mgs twice daily.
It’s been awhile since I last updated. It is to the nee easy to find something else to do.
In the last month we moved. After a little getting used new place is ok.
In May I joined the Wellness Center at Magee (gym). It’s going well, II go as often as I can. Each week I do a little more.
As always you can gat in touch with me through my contact page.
Saturday May 31
Prednisone 20mgs
Clonazepam .50mgs twice daily.
The tremors have subsided a little. The doctors seem to think the tremors pairing” itself.
All my tests, blood work and spinal tap came back negative (good). Hooray!
Since there hasn’t been a drastic change in my neurological symptoms, I have a PET scan scheduled for August.
It’s scary right now, knowing that I may not work again. Right now, I can’t communicate well.
I have to move, and I’m in need of a new car. It’s either a new car or whatever transportation will have me.
Sunday May 25
20mgs Prednisone
.50 Clonazepam taken twice daily.
I still have tremors, but they seem to be getting better. If only I could do something about this head shaking.
If you didn’t know, in all aspects, positive reinforcement is good.
I went to a 3 y.o. birthday party yesterday. Besides the kids having fun on my wheelchair, some funny things I heard or witnessed “does he really talk like that?”or being shown how to walk by the birthday girl.
Besides everything else, I’m grateful for spellcheck.
Friday May 16th
20MG Prednisone
.25MG Clonazepam taken twice daily
I may have developed a new tremor in my upper torso. That’s why I started taking Clonazepam. The new tremor may be from my body “repairing” itself or it may be a relapse. So far bloodwork and an MRI showed no relapse. I go for a lumbar puncture (spinal tap) on Monday.
Last week, I had IVIG. The IVIG won’t stop until they figure out the steroids. I think the IVIG went well.
Hopefully this new tremor stops and I can continue getting better.
5/3/14 Saturday
Primadone 25MGS
Prednisone 20MGS
It’s been a while since I made a diary entry. I was discharged from occupational therapy and physical therapy two weeks ago. I was discharged for not getting better but they thought I kind of plateaued. If I see a change I can return.
This week I joined a gym, it is only the wellness center at Magee. They have special equipment there and assistance.
I also joined a facebook group of people who have the same thing. That helps a little.
I developed a new tremor. So they increased my Prednisone and they are weaning me off Primadone. Hopefully this works to get rid of the tremor.
For today’s race I like California Chrome.
Monday 4/14/2014
I came up to 50mgs of Primidone.
Again, I would like to thank Alexis and everyone in my life. Without her or everyone I would of gave up long ago. She won’t let me give up.
I’m 2 for 2 at HUP for running into people First, I saw my friends (friend’s parents).. Who were there for an appointment. Second, I ran into some woman, who earlier in the week I saw at the nail place.
Thursday 4/3/14
All of my journal entries have been short lately, because I’ve been doing them.
Last week, I came down to 5mgs of Prednisone. So far so good. Even if I apear worse.
Monday 3/24/14
I missed a week, I was away. I was at my parents’.
I’m up on the Primidone to 25mgs and down on the Prednisone to 7.5mgs. Fingers crossed, I’ll get weaned off the Prednisone.
Two weeks ago I had IVIG. Each day after it I had trouble getting up after it. I think it’s from sitting so long. I lost my balance doing “sit to stands”. “Sit to stands” are exactly what they sound like. Oh well,,,, Not everything will be positive.
Last week I went to my parents’. I had to walk more than I’m used to walking. It was good, slow but good.
Tuesday 3/11/14
I’m late….
Some things I forgot to write last time. First, when I write I did something for the “first time”, I just mean I’m starting to do it after getting sick. Second, I went for a mani/pedi two weeks ago. Why not celebrate the fact I can’t do it. Finally, I started Primidone (12.5 mgs) for my tremors.
I went to the flower show last Sunday. Luckily, I went after hours, 9pm. It was the first time I was out at night. What was I afraid of?
I took a couple steps unassisted, within the parallel bars.
Sunday 3/2/14
My stubborness landed me in the ER on Monday. I had my third attempted PET scan scheduled, the first two missed because of the weather. On Monday, i woke up sick, but I wasn’t going to postpone again. So much was contingent on this scan. Despite feeling sick, I we\nt anyway. I almost passed out in the waiting room. Then, I was rushed to the ER, wheelchair and all. While in the ER I got fluids only. What was weird, was around a year ago I was in the same ER. After a few hours, they released me from the ER and I started my PET scan. PET scan results show I no longer have Hodgkin’s lymphoma.
I think I sleep so much for mainly two reasons. One, I don’t feel like anything is wrong with me right before I go to sleep or when I wake up. Then I move, and reality sets in for me. Two, I can’t hurt myself when I’m sleeping.
` On my videos or pictures there will be no retakes.
I have learned recovery isn’t as quick as I would like. It may be 5 steps forward and 3 back. The main thing is to not get discouraged.
Depending on the weather, I’m supposed to go to the Philadelphia Flower Show later.
Sunday 2/23/14
It has been about a year since I first went to the hospital. If you told me when I went in, I would be in the position I am now. I would’ve laughed.
First, yesterday was a surprise. Thanks to Alexis for putting it together. Al.so thankx to everyone who made it, and thanks to those who couldn’t make it.
Second, I went to the dentist this past week. Being in the hospital for a month plus. Then, being at in patient rehab for a month. Add in being barely able to brush my own teeth. Does wonders for one’s oral hygiene. After all the shots and everything. the thing I found most painful was az business didn’t shovel. Hint, you wouldn’t have to offer to help push my chair, if you would just shovel. It may be easier for us all.
Finally, I did this mostly by myself. So pardon any errors. I did this with one eye and one finger. It only took about 2 hours.
Sunday 2/16/14
Oops, last week didn’t happen.
I missed rehab the past 2 weeks. 2 weeks ago because of the weather. Last week because of IVIG. The weather lately would make me a shut in, if this disease didn’t beat it.
It is almost a year since I went to the hospital. Funny I thought I could go home right from the hospital, and I can still barely walk or talk. Oh well. Each day I get stronger.
All of this is hard and scary. At the moment, I’m not really self sufficient. It is something I’m working towards. Unlike some people I have the ability to walk, I’m just prone to falling. Which would be painful.
I’m getting off the tremor medication. It lowered my heart rate too much.
Make sure you have everything in order. My computer keeps losing its wifi. When it does I have to start over. I can’t call because I’m hard to understand. I can’t go in because of a whole lot of other problems. Too late, I guess.
Monday 2/3/14
I’m close to the same person I was, I just have trouble talking and walking. But I am still the same person. Things to keep an eye out for as I post updated videos and pictures:
-Are they clearer?
-Are they quicker?
-Am I straighter?
-Am I more precise?
-Are my tremors less?
As I get weaned off of the steroids, I think, the tremors may get worse. I am also on new tremor medication, 40 mgs of Propranolol. 40 mgs is the lowest dose. If it doesn’t work, I think the doctors will want to go up. So far so good.
Now that Magee went down to 6 hours a week, two hours per discipline, I am responsible for more at home. Even though learning everything again is hard, I think I’ll be able to do it. It’s like someone reset in me. When this is all done, I am going to talk clearer and be done with the wheelchair. Good thing for bad TV. And I think Seattle will win the Superbowl.
Sunday 1/26/14
This week it snowed, and I had a doctors appointment. One of the reasons I stayed in was because I was afraid of falling in the snow. The doctors appointment went well. He prescribed something for the tremors, and lowered my steroid intake. I’ll know what worked come this weekend.
Sunday 1.19.14
Some edits. if you read the whole thing 1/13/14 there is no reason to go back and reread. And if you just read it, you can skip the beginning of this.
-At the moment, I am severely ataxic. And I also have mild tremors.
-I can only communicate in small sentences. It’s easier because of the double vision and the tremors.
-I called him Will Smith because of the ears. I rescued him at STAR (Street Tails Animal Rescue) on Liberties Walk.
-It felt like I didn’t open my eyes for a month. i did. i just didn’t talk for a while.
-Even though degenerative is in the title of my illness, I think the degenerative part ended in March.
-I will update the diary once a week. Everything else I’ll update once a month.
This week I had IVIG, Monday thru Wednesday. IVIG is an intravenous blood product that puts good antibodies into my body. It went ok. I’ve been getting it since March.
I’ve been thinking a lot about the 10,000 hour rule. Basically 10,000 hours spent on anything will make you an expert. So I need to use my time more wisely. Everyone probably says that.
Everybody should have goals. Mine have changed. Now, I just want to be rid of this wheelchair.
Things for me have gotten harder. Not impossible, just harder. For example, something a few stairs away, may be a few countries away. It isn’t impossible, it just takes more time and thought.
ps. I typed most of this entry by myself, and it only took me a few hours.
Saturday 1.11.14
I just finished Magee’s Day Program, but because of the weather, I didn’t go the last day. It was like going to work for me. I hope to be evaluated for all of my disciplines (PT/OT/SP). I really missed my salad on the last day. I met a lot of good people at Magee. Here’s looking to an uncertain future.
It Takes a Community 