Sunday, May 23, 2010
Friday, May 21, 2010
Friday, October 09, 2009
Cpt. Chandler: Yes, but sometimes the answer is no.
FROM TARA, ON FACEBOOK:
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.
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
Wednesday, August 26, 2009
Monday, August 10, 2009
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
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?
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. “
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?
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?
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.
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!
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, 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?
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.
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.
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.