Sunday, May 23, 2010

Sam's Official Piano Recital

Today was the actual piano recital. Three days ago was the rehearsal one. Two songs.
First: America/My Country 'Tis of Thee
Second: Auld Lang Syne


video



video


Friday, May 21, 2010

Sam's Piano Recital 2010

Sorry the camera is shaky, I was holding it without a tripod. This is his trial recital, with the "real" one coming in a few days. But, still, fun stuff. :-)

Video try #2, this one is uploaded directly from my computer, not copied over from Facebook.

video

Wednesday, October 21, 2009

Alexander broke his arm



Just wanted to let everyone know that Alexander broke his arm today. He fractured his radius bone in his left forearm. Not a full break, but not a hairline fracture either, a real one that we were able to see on the x-rays. In one angle, there was a visible dark line all the way across the bone, and on another angle, you could see that the bone had been compressed and misplaced, like crushing a coke can by squeezing the top and bottom together. It looked like land after an earthquake, when a fence has been moved over a few feet.

Anyway, he's fine, very fine. He was playing at a friend's house and did some funny twist-fall and fell off a swing. The mom and I and Alexander talked on the phone a lot, and keep in good monitoring of the situation. The mom they were with was so wonderful in taking care of him for me! I decided to just let him rest for a while and see if it still hurt later. Usually my kids are perfectly fine after 30 minutes of resting, so I wanted to see if that was the case this time. So, they watched a movie and put ice on it. Later, when I went to pick him up, it still hurt. He said it stinged. He never cried or anything, so it was hard to tell how much he was hurt. He's very stoic, my friend said. It's true. There was one direction he couldn't turn his wrist at all. He was up, and playing with his friends, and moving around, but he wasn't using that arm at all. Those things, plus the fact that he was still in sharp pain led me to take him to the Urgent Care Center to get it checked out.

Right now he's fine, he's just resting. He's just on Jr. Tylenol, so it's really not the worst pain in the world. He's good unless he tries to move it. He's fine and just getting used to doing things one-handed. Thank goodness his right hand is okay, his school teacher doesn't want to have to write out all of his homework for the next month! hehe :-)

Right now, he has a half cast on, held on with ace bandages. They call it a splint. He'll wear that for a few days. He also has a sling. The immobilizing with the splint and sling has helped a great deal, since it was the bumping and moving that caused him pain.

Tomorrow, another doctor is going to look at his x-rays. She'll determine if it's something she can cast herself, or if he needs to go to a specialist. Either way, he'll be getting a full cast in a few days, probably on Monday. They don't know yet if it will be just below the elbow, or above the elbow. The cast will probably be on for 3-4 weeks.

That's it for now, just wanted to keep everyone informed. A few pictures are attached, and a few more are on Facebook. If you want to contact Alex, you can use email, Skype, or call my phone.

He's still going to go to everything, all of his normal events, but he may not be running around quite as much.

Friday, October 09, 2009

Fun Quotes & Lessons Learned



Sidney: Is it true that God answers all prayers?
Cpt. Chandler: Yes, but sometimes the answer is no.
-- from M*A*S*H. My dad used to always tell me the story of this quote, and now I'm so glad he did because it perfectly describes my life, and gives me lots of comfort. :-)


Just when the caterpillar thought
her world was over,
She became a butterfly
-- I just read this on someone's blog. I don't know where they got it from.


As God is my witness, I thought turkeys could fly!
-- from WKRP, another show my dad used to watch, and a funny quote that I was remembering earlier this week for no apparent reason, other than it was funny.



I just had a really bad week just now, and somehow everything I was sad or mad or upset about from the past 1.5 years just welled up inside of me. I felt a lot of anger for a day or two there. I think it was good for me to let myself fully feel all of it, I really needed that.

But -- I needed to stop it before it went on too long.

Fortunately, I started reading conference talks from last week's conference, and found one from the Prophet during the men's session that applied to me. It was about not being angry. http://lds.org/conference/talk/display/0,5232,23-1-1117-21,00.html Well, it was exactly what I needed! I guess the spirit can speak to us through conference talks, because I somehow learned more lessons than were taught in that talk. :-) That, combined with the loving friendship of my friends and some inspiration from my ultra-romantic husband, who is teaching me to focus on the important things in life, like love, and not focus on stuff that doesn't matter as much, like disabilities or hassles in life.

I watched "50 First Dates" today. We had recorded it when it was on tv earlier this week. I love that show because it's so funny, and has great people in it (not to mention the scenery!). But this time the movie really spoke to me. I was crying the whole second half of the movie pretty much -- in a good way. It was a love movie, just like Brian likes. But more than that, the woman had a physical problem that no one wanted her to have, but everyone had to deal with. Adam Sandler didn't want her to have the problem, but he loved her anyway, and just had to work around it in order to get to love her. And what he did for her changed her life, and allowed her to live her life, which she might not have been able to to do if he hadn't come along. Most importantly, at the end of the movie, everything is great, and they are living a wonderful life -- EVEN THOUGH she still had the exactly same physical problem she had at the beginning. It was wonderful. It showed me that you don't let the thing stop you, that it can still be there, and you can still life a great life. That's life. I loved it.

And just like that movie, my husband loves me a lot, and doesn't care at all that I don't stand up anymore. I mean, he cares, but only that he also wishes it wasn't so, but it doesn't affect his love for me. How fortunate am I?! So, I need to take his lead and just be happy like he shows me to be, and not worry about everything.

Follow my lead, oh, how I need
Someone to watch over me

-- from "someone to watch over me", which as far as I'm concerned came from Mr. Holland's Opus, even though I hear that it was a song before that. and that show, by the way, reminds me of John Holt. :-)

I wanted to report back that I'm feeling much better today! It's appears to be over. I love rain, and it rained a lot today! :-) And I got to get caught up on laundry, and school work with the boys, and other things I needed to do, and I took a nap which I desperately needed. So, I feel much better, and somehow, the weight of the world has literally been removed from my shoulders. I feel much better. :-)

I really need to find a hobby, something that I like to do, for me, to replace hiking and other stuff I used to do in my prior life. I'll have to keep you updated on that search.


Response

FROM TARA, ON FACEBOOK:

Tara Ford

I can understand where you are coming from. I had a dear friend that was diagnosed with breast cancer when she was in her mid-twenties. I probably prayed harder for her than anything I ever had for myself. She passed away about a year and half after her diagnosis.

A few weeks after she passed, a man gave his testimony in church on a fast Sunday. He had a family member that was diagnosed with cancer and was healed. His testimony was about how "prayer works" and can heal people.

It made me so mad!! The pain of my friend's loss was still fresh, so hearing about something positive for another person just felt like salt in the wound.

I know that sometimes we just need to vent to feel better--not sure if that's all you needed when writing this note. But if you do need some positive words I want to let you know that you are an amazing person. Maybe you can't do some of the activities that you enjoyed before, but I think perhaps you are finding new perspective and joys. One of those things is your photography. I don't know if you did much before, but I've enjoyed seeing your nature pictures and all the pictures of your family. I think that is something that everyone is going to treasure down the road. And perhaps you take those activities that you love and reinvent how you do them. Have you done much container gardening?

Don't want to turn this into a sermon, so will stop there. But if you feel like you need to vent more or need some words of encouragement I'm around.

MY RESPONSE:

Yes, I just needed to vent. I was having an angry day yesterday. That's really rare for me, but I decided to go into it deep yesterday, to finally feel all of the anger I had been building up for so long. I'm feeling better today. I totally know what you mean about your friend. Some people are telling me that I'm choosing to be disabled because I don't have enough faith. But that's just not how it works sometimes. They're like "what did God say when you got a blessing?" And I answer "he said get used to it, this is your life now." Then it's like they don't believe me.

People ask why I don't pray to get healed anymore. I did. I tried a lot. But God said no. So, I eventually moved on to pray for things he said I could get, like a basic diagnosis. Now I'm praying that my new medicine might give me relief from the lifelong hormonal problems I've had. So, I'm praying for things that God's said maybe I can have. There's no point in praying for something for over a year when he says No every time.

But it is hard. When I first stopped being able to walk, in our ward we also had two other people that were potentially dying. So, needless to say that got all the attention. One lady died of cancer a few months later. Tragic, so unfair, you know? The other kid got lots of medical treatment and after a very long year is now fully healthy again. Then there's me, who will have several decades worth of life changing as a result of how my year went. Life definitely isn't fair. Yes, prayer helps some families, when God approves it, but sometimes he doesn't approve it. But it doesn't mean they weren't praying enough. It just means God said no.

Thank you so much for your kind words, Tara. They really helped. Yes, I'm desperately in need of a hobby to replace hiking. I loved walking on rocks. I did container gardening a bit last Spring, but there are too many problems with it since it is so hard to get to my tiny back porch, and then I'm trapped on the tiny back porch, not enough room for the bag of dirt, and I can't get to the grass. And in the kitchen, all of the counters are so high that I can't use them for potting, because my arms tire really quickly when I have to raise them over my head. So, I hope to container garden a lot more once we move, in a few years. Or maybe now, if I can find a way. I'd like that. The photography I've always done, but not seriously. But I feel it has really suffered because I can't climb over rocks like I used to do to get the good shots. I guess I don't want to feel like I'm giving into a gimp hobby. But any hobby is better than none.

See, I'm just complaining again. I'm sorry. I'll work on it. Eventually I'll find something I like to do. Brian says I need to think outside the box, and think of things I've never thought of before, instead of just wishing I could do what I used to do. So, he's wise, as always. :-)

Brian's also really inspiring me lately with his romantic movies. He loves, not so much chick flicks, but movies about love. His favorite right now is Enchanted. He loves singing love songs too. He's a complete romantic. But I'm learning from him, learning that love can be more important than the crap in our lives. And that maybe if I focus on the love, and remember that it's more important, maybe I'll worry less about the crap.

Just a theory, but a good one. :-)

I just read this from last week's conference. I have heard stories like this forever. What's my change? How will I improve my life now that I'm broken? I don't see it. How does everyone else get a problem, then see something they needed to fix, and then they feel better? I get a problem, and just have to stop doing things, like hiking, gardening, cleaning my house, being active. I just stop more and more. What have I gained?


Recently I observed such a mighty change in a man whom I first met about 10 years ago. He had come to a stake conference at which his son was sustained as a member of the new stake presidency. This father was not a member of the Church. After his son had been set apart, I put my arms around this father and praised him for having such a wonderful son. Then I boldly declared: “The day will come when you will want to have this son sealed to you and your wife in a holy temple. And when that day comes, I would be honored to perform that sealing for you.”

During the subsequent decade, I did not see this man. Six weeks ago he and his wife came to my office. He greeted me warmly and recounted how startled he was with my earlier invitation. He didn’t do much about it until later, when his hearing began to fail. Then he awakened to the realization that his body was changing and that his time on earth was indeed limited. In due course he ultimately lost his hearing. At the same time, he became converted and joined the Church.

During our visit he summarized his total transformation: “I had to lose my hearing before I could heed the great importance of your message. Then I realized how much I wanted my loved ones to be sealed to me. I am now worthy and prepared. Will you please perform that sealing?”7 This I did with a deep sense of gratitude to God.

Sunday, October 04, 2009

September

Above: Just a pretty sunset picture I took last month.

Hey everyone. Just catching up here. Here are a few pictures below of things we've done lately. See flikr and facebook for many more pictures. They are harder to upload here, so I don't upload as many on blogger. We've been good here. No flu, thank goodness. But Brian and I seem to have had one, or many, small colds, for about 3 weeks now, and they don't appear to be going away any time soon. So, who knows what's going on with that.

I'm sticking with the belief that spinal cord nerves, like arms and legs and eyeballs, can't be regrown just by wanting it to be so, and meditating on it. That is causing me some friction with people. So, that's too bad. If I inform someone that something is permanent, it's not because I'm saying I want it to be permanent, but because it is permanent. Lots of things are permanent, and lots of things happen that we didn't really want to happen. Accepting that fact is different than wanting that fact to be true. Very different. It just is real. That's reality.

I've rediscovered the band Rush, which I used to love in High School. I finally got around to hearing their 2007 record, which I only barely listened to when it came out. MalNar is great! I'm loving remembering all of the songs I used to hike to, and went to concerts to hear, and I love the new ones, and how they generate the feeling of motion. I always feel like they are driving or hiking songs, and I love that feeling. It makes sense, really, since the author of the lyrics, the drummer, also loves travel and writes of it often in the songs.

Our oven appears to be broken, so we're going to have to replace that. We've been living without it just fine, and just using the toaster oven, but we have a goal to replace it in time to cook Thanksgiving dinner. Also, we are shopping around for homebuilders. Soon, we're going to check out Tilson, a custom homebuilder in town. They tell us they can make all the modifications we need, like wider doorways, lowered counters, and accessible things I need. We're not in a hurry, but someday we do need to start building ourselves a one-story house. So, talking with them will be a nice first step.

I need to find a way to satisfy my hiking desires. I've tried handbikes again, and confirmed that I really don't have the arm strength for them, which means I'm out of options for self-powered vehicles to replace hiking, as I had hoped. So, I'm looking to motorized things. Maybe 4-wheelers or something would be fun. For now, I already have that electric scooter, so I think I should use it more often to get out there, go over the rocks, and get some speed. I spent most of yesterday outside in the rain with my kids, running and scootering around the neighborhood. It was great!


Here are the boys in front of part of a huge pumpkin display.

Alex on the climbing rock at the RISE Adventures End of Summer Bash. No, that's not me you see there, that's another mom. I'm taking the picture.

Alexander and Brian climbing together.

Sam reached the very top of the structure.

The event took place by a beautiful lake in Dallas.

Wednesday, August 26, 2009

Nothing much here.

Hey everyone. Nothing much happening here. I just thought I'd enter a new blog entry to announce a boring, wonderful, nothing new life. I love it!

We had lots of friends over today, for the kids to play with, and for the moms to talk -- always fun!! So glad we did that.

Went to my other doctor yesterday, and we're going to try new types of medicine for a whole other thing I have. It should be a nice improvement.

I'm so done with diagnosing and doctors and stuff, it was so nice, very refreshing, to go to a different doctor for a whole different reason. I love it, because it symbolizes where I am in my life, which is a place in which I couldn't care less about the wheelchair. It's just so not a big deal anymore. I can't even seem to answer anyone's questions about it anymore -- sorry for those of you whose questions I haven't been able to answer, you're not alone -- I just can't think on it anymore. I'm just done, and I've moved on. For me, it's a wonderful thing! I'm very happy. Just like with the doctor yesterday, I've been trying to figure that other problem out for decades, and yesterday I was just like "sure, I'll take whatever you think, I have no opinion or preferences on the matter. I've done no research, and I'm totally happy to just go with whatever you think." :-) Brian is totally there too. We are happy to just play video games, visit our friends, cook dinner, go places, and live our little lives now. :-)
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You can tell I'm resting tonight after the playing today -- I just joined Twitter finally. It seemed like the thing to do. :-) I probably won't be tweeting, but just reading updates. If anyone is on Twitter that I should be following, please let me know!

I love Warehouse 13, a new show on SyFy (cable). I really love it, lots of fun! I'm so glad there's a new show out there that I love. That's a rare and precious thing! Artie is my favorite, love Claudia too. And the Studio 54 disco ball thing was hilarious!!

Homeschooling is going well. We're in our 4th week and everything's going great! This is the most organized we've been in school ever, by far, and it's really paying off. It's a great benefit to go into the school room every day and already know what is set out to do that day. I love the history books we're using. The science books are a bit boring, though-- don't be surprised if I switch to something better before the semester's out.

P.E. starts up again for the kids next week! Woohoo!!! Truly the worst part of summer is no PE. The kids love it! It'll be so much nicer when it starts up again, and they can see their friends one extra day of the week (though they already see them plenty now), and get the outdoor exercise they so need to be balanced and calm kids. Can't wait!
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If any homeschoolers in town want to join PE, let me know and I'll email you their webpage. You can attend the first day for free, to try it out.
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That's it for tonight. Have a great week! :-)

Monday, August 10, 2009

Follow Up Dr. Appointment

I went in for my last doctor's appointment this morning. This time Brian and the kids came with me. I knew it would be a short, simple meeting, so it was a nice time for Brian to meet my doctor. Also, Brian was a huge help in pushing me up the steep downtown streets.

I forget my doctor's exact words, but he said something like "well, we've beaten you to death, there's nothing left to do with you." :-) He said that while smiling. He went on to say "we've tested you for everything that could possibly have any treatments. So, it's got to be the Hereditary thing" (that's what he calls HSP sometimes, for short). "But HSP is a mysterious disease, and we don't know anything about it, so that's all we can do."

We finally figured out today why my doctor spent so much time testing for Stiff Man Syndrome. It's because he actually had a patient with it a few years ago. He had seen it, so he knew it was a real possibility. Now he's had a patient with HSP, so now he's seen that too.

He checked my reflexes again, like he always does, and says that my legs and feet are still hyper-reflexive, which is typical for what I have. He also tested some range of motion and was happy that I still have a good range of motion in my legs. He wants me to keep doing all of my stretching that I'm doing, he says it's working well to keep me healthy. :-)

Brian liked the doctor too. We both like how straight forward he is in his speaking. We're very glad to have him as our doctor because we know that most neurologists wouldn't have the background and knowledge needed to diagnose me with my rare condition. This may have taken a really long time, but it did work out in the end.

The doctor gave me a longer-term prescription for the spasms, and says I have to go back every six months to continue it. No problem.


So, it's done. Afterwards, Brian went to work, and the kids and I made our monthly run across town to the Boy Scout office for this month's Cub Scouting awards.

Sunday, August 02, 2009

Frequently Asked Questions

Frequently Asked Questions

Hi there. Today, I thought I’d answer some commonly asked questions that people have had for me recently regarding my diagnosis of Hereditary Spastic Paraplegia. I hope this will answer those questions for everyone else as well. :-)

They are listed in the following posts, for easy reference. See the ARCHIVE list on your right.



If you have more questions, feel free to add them to the list. Enjoy! :-)

Q: How genetic are we talking? If I’m related to Brooke, do I need to worry about my kids or grandkids getting HSP? Or, did I give it to her?

Q: How genetic are we talking? If I’m related to Brooke, do I need to worry about my kids or grandkids getting HSP? Or, did I give it to her?

A: There are few different ways of genetically transmitting the disease, but from what I have seen, both in my research and the people I’ve met, it’s either really prevalent in a family, or practically unheard of. Everyone I’ve heard of and everyone I’ve met with HSP is either like me, where they’re the only ones in their family that the know of with it, or they are the other type, and their mother, 2 sisters, cousin, son, daughter, and 2 of their dogs also have HSP. (I actually know 2 families for which I didn’t really exaggerate much there.)

Since there is no one in our family who has had this disease prior to me, that I know of, my research shows and my honest belief is that it’s really rare in our family. It will probably be many, many generations until this shows up again, if then. This section from an HSP website describes it better than I can…….

How can it be HSP when no one else in the family has it?

“There are many explanations for why individuals who have all the signs and symptoms of HSP do not appear to have a family history of the disorder. The most common reason is that the condition may be recessive or X-linked. These forms may have passed down silently for generations until the correct circumstances existed for someone to have the disorder.

“Even someone with a dominant form of HSP may not appear to have a family history of the disorder. Since HSP can vary greatly in severity of symptoms and age of onset, a parent may have had a very mild case. His or her symptoms may have gone unnoticed or been attributed to other problems such as old age or arthritis. In addition, since symptoms can develop later in life, the person may have died before showing symptoms, or if still living, may not have developed them yet. Finally, it could be a new gene mutation, making the affected person the first in his family. “

Q: Does it hurt?

Q: Does it hurt?

A: Yes and no. Usually, no. There’s no nerve pain, so that’s great. My muscles do get really tense on their own, though. I treat this with prescription gabapentin, which is my muscle anti-spasm medication, and with a daily stretching routine. I won’t lie to you, the stretching hurts!

However, if I didn’t stretch, and take the medication, my leg muscles tighten on their own, a lot. Such that if I’m just sitting and minding my own business, I can get sprains on every part and joint of my body from the waist down. The muscles pull so much that my knees and ankles get sprained, they hurt, they get swollen and red, just like a normal sports injury. The same thing happens in my hips, only stronger. These things are very painful!

I put a lot of time every day into stretching, icing my muscles when needed, and other things I do to keep my body flexible and pain free. Also, my shoulders get sore from pushing too hard,
but that’s to be expected. So, most of the time I am pain free.

Q: Are they doing research to cure HSP? How’s that going? What about stem cells?

Q: Are they doing research to cure HSP? How’s that going? What about stem cells?

A: Yes, research is being done. The problem is, and the thing to understand, is that this is a very rare disease. It is listed on the official list of Rare Diseases with the National Institute of Health. It’s really rare. Therefore, there is only a relatively tiny amount of research currently being put into HSP and its cures. Right now, they haven’t even fully identified what’s going wrong in most types of HSP, nor do we even have a diagnostic test to identify easily when someone has HSP. I would imagine that finding those things will necessarily precede finding treatments and cures.


Research is ongoing, however. Currently, you can see more information on current research into HSP here: http://www.sp-foundation.org/research.htm.

Q: How does Brooke feel about research and cures?

Q: How does Brooke feel about research and cures?


A: Personally, I’m happy to hear that someone is working on this. But to be honest with you, I don’t expect anything they find to be of use to me in my lifetime. I would expect to see people with spinal cord injuries walking before I am. This is because their injury is far more common, and more people are donating to that cause and more research is being done in their area of disability. More common diseases tend to get more energy put into them, which makes sense.

I’ve seen people who spend their lives waiting for a cure. I am not judging that lifestyle choice, but it is not for me. If there is a cure for me someday, that’s great, I’ll take it. But in the meantime, I won’t be following the latest research, or get excited every time some stem cell research shows something.


No one is yet walking from stem cells, or any other nerve repairing cures, that I know of. It’s just not part of my reality. I worked hard to get used to this life, and I don’t want to miss out on my life or my happiness because I’m waiting for something.


I also don’t like following research and cures because I guess I don’t like the idea that my life is not perfect already like it is. I am very happy, I love my life. Until there is actually a cure, I guess I don't like being reminded that something is wrong with me.

Q: Do you have any plans to move to a one-story house?

Q: Do you have any plans to move to a one-story house, or will you be staying in your current two-story house?

A: Oh yes! We decided in June of 2008 that we will someday move to a one-story house. It’s just a bad time right now with the economy. Houses are hard to buy and hard to sell right now, and our current one has a great mortgage on it. Currently, I have a stair lift, so I can definitely live in this house a few more years. Eventually, we will get a new house. We will probably one we build from the ground up in order to make it completely wheelchair friendly. We will need all wider doorways, tiled floors, maybe lowered sinks and surfaces in the kitchen, and ramps to the outside. I’m sure there are lots of other options too that will make my life easier. I will research those things when the time is a little closer. I know I want access to the food pantry, that will be nice!

Q: How do you get around your house now? Do you drive?

Q: How do you get around your house now? Do you drive?

A: Yes, I drive. I have hand controls. See my photo journal on those topics at flikr.com: “A Day in the Life” http://www.flickr.com/photos/blueginger125/sets/72157620142799018/

Q: If I’m sad about Brooke’s diagnosis, do I have to go through the stages of grief too?

Q: If I’m sad about Brooke’s diagnosis, do I have to go through the stages of grief too, or is she the only one?

A: Usually the person who has been affected is only one of the people who will need to grieve and adjust to a new life. Everyone has different depths of relationship to me, and everyone grieves in their own way. But, on average, anyone close to me, who’s known me for a long time, and/or who is related to me will need to go through their own grieving process in their own time. The general process is the same for any loss or major sadness in life. There are 5-7 steps in the process, depending on who you ask. This is a good site that lists the general stages and what they mean. http://www.recover-from-grief.com/7-stages-of-grief.html. I have been told that these steps are not necessarily linear, as people can move back and forth between them, or go through them in a different order altogether. For example, I had a long time where I was mostly in stage 4, and would occasionally visit stages 3 and 5. Some people can stay at stage 1 for a very long time before they move on. Any variation is possible.

1. Shock & Denial. 2. Pain & Guilt. 3. Anger & Bargaining. 4. “Depression”, Reflection, & Loneliness 5. The Upward Turn 6. Reconstruction & Working Through 7. Acceptance & Hope


I went through these stages in the past year or so. I’m happy to inform you that I believe I have completed these stages, for I am very happy and well adjusted now. Last year was a very dark year for me, though, so I have learned a lot about how real these stages are and how much they can affect a life. A person can not force their way through the levels, they must happen in their own time. A faked “recovery” will only relapse. Take any time needed, usually years, and fully go through whatever you have to go through.

Q: Will it get worse?

Q: Will it get worse?


A: Yes. HSP is a degenerative disease. I have had it all my life. I can recognize very mild symptoms of it as far back as when I was six years old. Every decade it got worse. It has been getting worse my whole life. In the past 3 years, the pace has greatly quickened, and I’ve gotten much worse, much more quickly. This is common with my disease around my age.


The hope is that the pace will slow down again, and my degeneration will be very slow now throughout the rest of my life. There will be a point sometime in the future when I will not even be able to stand for a few seconds like I can now. There will come a time when I will need to use a power wheelchair part of the time because my torso will become more and more affected. So, it will get worse, but it will happen very slowly, and I will adjust to it, like I’ve been doing all of my life.

Q: Will your arms be affected?

Q: Will your arms be affected?

A: Some versions of HSP leave the arms and hands completely unaffected, and some affect them as much as the legs. My version appears to closer to the torso and legs version. My arms are already slightly affected. Neither of them can do what they used to do. My right arm is much weaker than my left arm. I can do daily tasks, but, for example, I can’t lift my right arm up in the air for more than a few seconds, and even though I’m right-handed, I usually prefer my left arm to do things because there is so much less effort required to move it.

The hope and the theory is that my arms and hands will not get any worse, that they will stay the same as they are now. Arms are rarely fully affected in this disease. The minor impedances to my arms and hands have not gotten worse in the past few months like my lower body has. Evidence now shows that in the future I will only get worse from the chest down. I can live with that.

Q: Can you improve with therapy and muscle training?

Q: Can you improve with therapy and muscle training?

A: No. I do benefit from daily stretching, which is important is keeping me flexible since I have muscles that want to become incredibly tight and stiff. This also helps eliminate pain due to stiff muscles. However, the damage is in my nerves in my brain and brainstem. My muscles have been tested several times, and they are perfectly healthy. My muscles are also very large and strong already, due to the hypertonia (http://en.wikipedia.org/wiki/Hypertonia) I have from all the muscle spasms. Therapy and muscle training only work to improve muscle tone (which I have plenty of), they can not improve the ability of an electrical signal getting from my brain to those muscles. Because my problem is in my nerves and not my muscles, there is nothing that can be done to fix the neurological error.