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! :-)

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.

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.

Q: Are you okay, Brooke?

Q: Are you okay, Brooke?

A: Ya, I am. I realize it’s probably a little odd to say that. I always wanted to just be happy and get on with my life, but at first I was just really sad and had a lot of adjusting to do. I looked forward to the time when I was diagnosed, fully adapted physically (strong arms, adapted house) and emotionally (used to it and okay with it). When I got close, I still had one part of my brain which always said to me: “how can you be happy like that?” But a few months ago, I realized that it was Satan whispering to me, and not an actual legitimate concern. So, I told him to go away. I also took my time, and went through all of the stages of grief, and wallowed for as long as was necessary. It was a sad time, but I had to go through it, and it’s over now. And you know what? I’m great! My life is indeed much better than it used to be.

I think it helps that this was a slow-onset degeneration, because the transition from barely walking to wheelchair was less of a change than going from perfectly healthy to completely paralyzed. My change wasn’t that big, and I really think that helped me. Also, I’ve had like 5 or 6 other major long term illnesses and health problems in my life, though none of them are visible. From these many health problems, I’ve grown used to “things are just different for me than they are for most people.” I’ve had many decades to get used to that, and I’m good. I have come to understand and to know that my body can have little nicks and scratches and imperfections and I can still be a wonderful me and still have a happy and completely fulfilling life! This is the first visible health condition I’ve had, but to me, it wasn’t that much more than some other things I’ve gone through. It was just a little more, like each contraction in childbirth is just a little stronger than the prior one. And if I can handle the last one, I can handle the next one.

Also, many things in my life are better than they used to be, and I want to keep those better things. For one, being disabled means I’m not always in complete exhaustion from the days when I could walk but it completely wore me out. I used to think that if I could walk, I should. But this thinking made me have to rest and nap every day, not go anywhere, be in pain all the time, and not be the best parent in teaching and feeding my children. As long as I had the ability to walk, no matter how hard it was, I pushed myself way too hard in order to do it. My heart rate then was always high, as if I was exercising. I had a metabolism test during that time at my endocrinologist, and it said my metabolism was as high as the test would go, and indicated that I should eat over 3,500 calories per day! Of course I don’t eat that much, but that’s how much energy I was expending in those days.

When I got to the point where I could no longer walk across a room, and began using a wheelchair, it was actually a relief in many ways. It’s been an adjustment this past year, as my walking ability went from across the room, to just standing for a few seconds. But also during that time, my arms have grown stronger, and I have learned how to fully use a wheelchair. My energy is no longer wasted trying to move heavy legs, and I have energy to play with my kids, to teach them, and to buy and prepare food for them. I am not in pain from overexertion anymore, and I am free to have energy to pursue hobbies and fun for the first time in several years.

There may be things I can’t do anymore, but my life is truly better. My husband and children and I get to spend more quality time together as they help me do things that I could do but are difficult, such as unloading groceries from the car. I expect less of myself now. I’ve always pushed myself really hard, so even this gift from myself is a great relief. I have a great appreciation of my family, and of the things my body can do well. I have to spend a lot of time each day taking care of my body now, but it's teaching me to love myself more.

So yes, everything is just fine. :-) No need to worry about me. :-)