I have several posts in mind I want to do, but I want to do them right. I want to have the facts straight. The last thing the ALS community needs is more false information floating around. I have no planned post today so I'm just going to let my inner-thoughts flow. Everybody has good days and bad days. With ALS there are still good and bad days, but there is also what I call minute days. These days are usually busy and a lot going on, like a doctor's appointment, I want to shave, I need my nails clipped, and just too many unexpected things happening. Things like I can't reach the top shelf of my closet now, so I have to wait 3 minutes for Tony to get off of the phone, and during that 3 minutes I try to scoot with my weakening left leg to get something else accomplished only to realize I can't reach the the shelf where I keep my face wash. Then all I can think of is all the things I can't do. Tony stepped away from me with everything seeming just fine, then comes back in 3 minutes to me in a panic.
Today has been a real minute day. I've had minutes of feeling so much love from family. I've laughed. I've looked forward to things coming up with excitement and enthusiasm. I've felt scared as hell. Desperate for things to get accomplished so I can do things I want to do before I lose the ability. ALS changes everything, and I mean everything. ALS is horrible, I don't think anyone would dispute that. It does have characteristics of other terminal conditions, but something unique to ALS is that there is absolutely nothing to offer, no proven statistical percentage of a chance for a cure. I know there are clinical trials aiming for hope, but they're just that, a trial. Every person with ALS that's participating in trials is clearly told, "This is not meant to help you in any way." That goes for any trial for anything, and you understand they have to say that. We already know.
There is no, "We can try this treatment, but there's only a 50 percent chance it will save your life. It's hard to go through so it's up to you if you want to go for this or choose to live your shortened life as you want to." Obviously this isn't an actual quoted statement, and obviously cancer comes to mind reading it. It's also obvious that would be devastating to hear. I've lost family to cancer and seen it up close. It's devastating for the patient and the family. I want to make that clear. This is in no way a, cancer is nothing compared ALS, post.
My point is I don't know of any disease, other than ALS, that you are given absolutely no offer at all for for a possible cure. Now you'll hear people, including myself, making statements like, I won't go down without a fight, ALS hasn't met the likes of me, and other similar statements. But we haven't had an ALS specialist tell us, "We can offer you this to possibly save your life, it has saved others." Unless they're seeing a snake oil salesman. The only FDA approved drug for ALS is Riluzole. It's about as far from a cure as you can get. It offers up "possibly" a few extra months of life. Life that is, by the time you're at those last few months, hardly a life you can live on your own terms.
The FDA can help by allowing ALS patients to take higher risks in clinical trials, and by letting us move through trial phases faster. We're waiting on them. I hope to get the news they've made that decision soon. Please!
To add to the fact that we know there is no cure, we are also always aware that we're getting worse. The average life span given is 2 to 5 years. It's not like we can say, "Well I'm going to spend two to five years skiing, jumping out of planes, driving across the country, do a little globe trotting, then hit up vegas before checking out." If you are lucky enough to be diagnosed early in progression, you best get what you want to do out of the way fast because you have a lot of planning to do. You are, in different orders, going to need a very expensive power wheelchair, a wheelchair van, a wheelchair accessible home. You'll need to have somebody dress you, feed you , give you a shower, wipe your ass, pick your nose, I could go on but I think that's enough.
You have decisions to make about the options of extending your life. You can't eat anymore? Well you'll starve to death, or you can have a feeding tube placed for nourishment. You can't breath on your own anymore? Even with that non-invasive mask you wear 24/7? Well, you can have a tracheostomy. That can really prolong your life for a very long time if everything goes well. Great! Don't forget, that will just keep air flowing, but you will need very expensive care 24/7. Also don't forget, these things may prolong life, but they don't stop progression of the disease.
You will with no doubt reach the point of total paralysis except your eyes, but great news! You can still use your eye gaze speech device to enjoy conversations and let someone know if you're uncomfortable or need that little spot on your ankle scratched. It turns out it's not as uncommon as once thought to lose the ability to move your eyes too if kept alive long enough. That is called a complete locked in state. You are completely aware of everything around you, but have no way of expressing a thing, nothing. So you will want to be sure and let it be known way ahead of time what you want before that happens.
This was a roll out of my inner thoughts in real time. We all have our minutes, ALS or not. Priorities and perspectives just change after ALS or any dramatic, life altering change. I'm still fighting like so many others!
Until next time, take care
April
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Showing posts with label MND awareness. Show all posts
Showing posts with label MND awareness. Show all posts
Wednesday, April 10, 2013
Saturday, April 6, 2013
My Family Knows Now
HEADS UP - This post is some info about my family. Not much ALS related but I hope you still read on.
I did it! I told my family about my blog starting with my parents in person.
My Mother gave me her 100% approval and thinks it's great for me. What a relief. She did get in touch with me after going home to read everything to tell me God must always be capitalized. I will Mom. Thanks, I love you.
Dad approved 100% after he read the homepage aloud for everyone here just as I would have myself. Thanks, I love you
Who doesn't want approval from their big sister? She read and got back with me right away and told me she is proud and thinks it's a great blog, and other things great to hear from her. Thanks sis, I love you
All of my children told me they love it, and I have their 100% approval. So much relief. I have a wonderful family and I'm sure most of you may find it strange I'm just now telling them, and especially that it's scary for me. Even if we handle things in a way that is strange to you, we are very close.
I've done a lot of texting and starting to cramp up, not to mention the sun will be rising soon. I'm exhausted, so I'd like to introduce my immediate family now.
When Tony and I first met we both came with two kids and both inherited two more. We both had a son and daughter. While keeping it simple I want to introduce them. I'll go from oldest to youngest.
The oldest is Steven at 28 years old
Next is Tasha at 27 years old
We have Tyler at 23 years old
Last but not least is Amanda at 22 years old
Getting into Grand-kids is so simple yet tricky.
Ya know, there just aren't many "traditional" families anymore. It can get complicated. Half this, step that, uncle younger than nephew and all that stuff. Let's not pretend you all have no divorces, steps, halves and the such. If your family is perfect, you're an oddity. It's OK, Everyone is statistically odd in some way. And there are a lot worse things to be odd about than a long line of intact family. Either way, Come on now, stop pretending. Your family is only picture perfect on the printed photo, Right? It doesn't mean there is no healthy family love going around.
OK, shooting for simple...
Tasha and husband, Billy, have 3 young boys at home. Jesse, Ethan and Uriah. Two grown kids that have left home, Nathan and Amber. Tasha was a great Mother to teens at a young age. While loving them both, she has a very strong bond with inherited daughter.
Amanda and Jason have our newest Grandson at 9 months old, Brayden, along with an older inherited Grandson and inherited son Amanda loves like her own, Jamieson.
Our boys have kept away from the parenting life so far.
It's birthday time for Tasha's young boys all born close in time of year. Time to hit up Toys R us!
They will be added to my family pictures.
This is my website/blog about my progression with ALS. I will throw snippets of family info sometimes. It helps you better understand the person behind this case of ALS. Respecting my family's privacy is of utmost importance to me. I'm the one opening up online. It's not recommended in general but, knowing my fate, I'm not so concerned about what that next employer might read about me in a few years.
This post is for those interested in the person behind this ALS case.
Most Importantly, this is for my family. I love you all!
Until next time, take care,
April
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I did it! I told my family about my blog starting with my parents in person.
My Mother gave me her 100% approval and thinks it's great for me. What a relief. She did get in touch with me after going home to read everything to tell me God must always be capitalized. I will Mom. Thanks, I love you.
Dad approved 100% after he read the homepage aloud for everyone here just as I would have myself. Thanks, I love you
Who doesn't want approval from their big sister? She read and got back with me right away and told me she is proud and thinks it's a great blog, and other things great to hear from her. Thanks sis, I love you
All of my children told me they love it, and I have their 100% approval. So much relief. I have a wonderful family and I'm sure most of you may find it strange I'm just now telling them, and especially that it's scary for me. Even if we handle things in a way that is strange to you, we are very close.
I've done a lot of texting and starting to cramp up, not to mention the sun will be rising soon. I'm exhausted, so I'd like to introduce my immediate family now.
When Tony and I first met we both came with two kids and both inherited two more. We both had a son and daughter. While keeping it simple I want to introduce them. I'll go from oldest to youngest.
The oldest is Steven at 28 years old
Next is Tasha at 27 years old
We have Tyler at 23 years old
Last but not least is Amanda at 22 years old
Getting into Grand-kids is so simple yet tricky.
Ya know, there just aren't many "traditional" families anymore. It can get complicated. Half this, step that, uncle younger than nephew and all that stuff. Let's not pretend you all have no divorces, steps, halves and the such. If your family is perfect, you're an oddity. It's OK, Everyone is statistically odd in some way. And there are a lot worse things to be odd about than a long line of intact family. Either way, Come on now, stop pretending. Your family is only picture perfect on the printed photo, Right? It doesn't mean there is no healthy family love going around.
OK, shooting for simple...
Tasha and husband, Billy, have 3 young boys at home. Jesse, Ethan and Uriah. Two grown kids that have left home, Nathan and Amber. Tasha was a great Mother to teens at a young age. While loving them both, she has a very strong bond with inherited daughter.
Amanda and Jason have our newest Grandson at 9 months old, Brayden, along with an older inherited Grandson and inherited son Amanda loves like her own, Jamieson.
Our boys have kept away from the parenting life so far.
It's birthday time for Tasha's young boys all born close in time of year. Time to hit up Toys R us!
They will be added to my family pictures.
This is my website/blog about my progression with ALS. I will throw snippets of family info sometimes. It helps you better understand the person behind this case of ALS. Respecting my family's privacy is of utmost importance to me. I'm the one opening up online. It's not recommended in general but, knowing my fate, I'm not so concerned about what that next employer might read about me in a few years.
This post is for those interested in the person behind this ALS case.
Most Importantly, this is for my family. I love you all!
Until next time, take care,
April
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Friday, April 5, 2013
Deciding when to tell... a rambling post
I feel like I'm living a double life here and will be outed at any moment. I've always been a private person. My family is used to it although sometimes they've accused me of bordering paranoia. So many people have begged me to join facebook. I hate facebook. Tony does have an account so if anything important comes up, he usually tells me. The way I've shunned all social networks from their beginning, they will surely be shocked to hear I'm putting my life out there.
I mean I plan to go all the way. ALS gave me no choice. So tomorrow is Saturday. Since my diagnosis, Saturday is time with my Mom. I like to call it Saturdays with April, but nobody else seems to find it the least bit funny. It started out as our movie day, I made a review page that I keep in a 3 ring binder, and we wright our little reviews, more so about our experience. The Goodwill is part of our day too. I love the Goodwill. Mom would get a cart and bring it to me to use as my rollator. It's been a blast. A few times when I haven't felt well we rented from redbox and watched a movie from my bed. I still can't believe I watched Magic Mike with my Mother. I can hardly stand watching a kissing scene with her. I do live in the Bible Belt after all and was raised strict Baptist. Maybe more on that another time.
Since I've lost the ability to walk and don't have a wheelchair van yet, it's been more difficult. It's not impossible. Tony can take me and manual chair to the theater and Mom can push me, and tony pick me up. We haven't yet, but my Mother does knows her way around a wheelchair. She took care of her sister for a long time. She had Freidrich's Ataxia. It's a neuro-muscular disorder. Yes, I've checked. There is absolutely no link to my ALS. She had childhood onset which has a faster progression. I remember my Mother and Grandmother giving her a bath after leaving their full time job for the day. I was probably about 5 and couldn't wait for this time be cause I could ride around the house in the wheelchair. I had so much fun. My God, the irony. My aunt by this time had little muscle control and typed with her nose what she needed done for the day. She was a beautiful, intelligent woman with her life cut very short. She died in her mid-forties. My grandmother spent many years getting up to turn her every two hours. She worked a full time job at a hospital and she was the wife of a pastor, which in itself is a full time job. I was about 10 when My grandmother came to terms with the fact she couldn't do it anymore and had to make the most difficult decision to have her daughter placed in a nursing home. Another pastor came over to help break the news to my aunt. I still remember the gut wrenching cries coming from that room. Do not judge my Grandmother for that decision. It really wasn't a choice. There was no home health care in those days, no real support at all, and it was way past the point of being dangerous for her to be home. I know my grandmother never fully recovered from that day though. From the guilt she shouldn't have carried.
My Mother spent every Saturday for the remainder of my aunts life going to the nursing home and making sure she was being treated right, She still gave her a bath every week too. About once a month she took her out shopping for things she had typed with her nose. She got her in and out of a wheelchair alone. she was frail but dead weight. She brought her home and took her back every Thanksgiving and Christmas to be with the family, and many young birthday parties were at the nursing home. There was a nice area outside perfect for it.
Now my Mother is the fulltime caretaker for her other sister disabled by Type 1 diabetes. I don't know how Mom does it. She just says she thinks it's her purpose in life. Now her Daughter is dying? She doesn't deserve any suffering. She is so inspiring, a true saint in my eyes.
I feel like I've totally lost track of my post , but I'm not changing it. I said this is where I'll come and say whatever I'm thinking and this is how I think. One thought leads to another. It's like going to the computer to quickly look up a toothpaste brand or something simple, then two hours later you're watching 'funny cat videos' and thinking, what did I come here for?
Oh yeah, my big secret life story with ALS online. Since my first post I've wondered who in my family may have spotted me, if so probably on twitter when I'm tweeting slightly out of my mind from insomnia that ambien is starting to lose the battle with too. When I see any of them, I'm looking for clues. Are they saying certain things they would only know if they've been reading? A couple of times it seemed like it.
So I think I'm going to tell my Mother tomorrow. I'm nervous. Not so much because of what I'm doing, but the fact I've used curse words. Remember, I'm from the bible belt and spent several years with my 'by the book' pastor Grandfather.
I just want it out though, I've made up my mind, I"ll be who I am here. I know, no matter what she'll still love me. I'm forty. I can say fuck if I want. I haven't told anybody though. Not even my kids, only Tony. I want it out because I would like to bring them up some and show pictures too. I've always asked people not to post things or pictures about me online so it's only right I give the same respect.
I'm nervous, but I think it will make me feel even more free, and will be a relief when everybody knows. So I'll start with Mom, then rest of the family. I will be set free. Nobody worry, I will never post anything hurtful or private about another person without permission. Only about me, I'm the open book.
I have a request for any old friend or family members that if you do start following my blog, please let me know. I'm just curious. I think I've rambled enough and Tony just served me some delicious food. So I'm off...
Until next time, take care
April
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I mean I plan to go all the way. ALS gave me no choice. So tomorrow is Saturday. Since my diagnosis, Saturday is time with my Mom. I like to call it Saturdays with April, but nobody else seems to find it the least bit funny. It started out as our movie day, I made a review page that I keep in a 3 ring binder, and we wright our little reviews, more so about our experience. The Goodwill is part of our day too. I love the Goodwill. Mom would get a cart and bring it to me to use as my rollator. It's been a blast. A few times when I haven't felt well we rented from redbox and watched a movie from my bed. I still can't believe I watched Magic Mike with my Mother. I can hardly stand watching a kissing scene with her. I do live in the Bible Belt after all and was raised strict Baptist. Maybe more on that another time.
Since I've lost the ability to walk and don't have a wheelchair van yet, it's been more difficult. It's not impossible. Tony can take me and manual chair to the theater and Mom can push me, and tony pick me up. We haven't yet, but my Mother does knows her way around a wheelchair. She took care of her sister for a long time. She had Freidrich's Ataxia. It's a neuro-muscular disorder. Yes, I've checked. There is absolutely no link to my ALS. She had childhood onset which has a faster progression. I remember my Mother and Grandmother giving her a bath after leaving their full time job for the day. I was probably about 5 and couldn't wait for this time be cause I could ride around the house in the wheelchair. I had so much fun. My God, the irony. My aunt by this time had little muscle control and typed with her nose what she needed done for the day. She was a beautiful, intelligent woman with her life cut very short. She died in her mid-forties. My grandmother spent many years getting up to turn her every two hours. She worked a full time job at a hospital and she was the wife of a pastor, which in itself is a full time job. I was about 10 when My grandmother came to terms with the fact she couldn't do it anymore and had to make the most difficult decision to have her daughter placed in a nursing home. Another pastor came over to help break the news to my aunt. I still remember the gut wrenching cries coming from that room. Do not judge my Grandmother for that decision. It really wasn't a choice. There was no home health care in those days, no real support at all, and it was way past the point of being dangerous for her to be home. I know my grandmother never fully recovered from that day though. From the guilt she shouldn't have carried.
My Mother spent every Saturday for the remainder of my aunts life going to the nursing home and making sure she was being treated right, She still gave her a bath every week too. About once a month she took her out shopping for things she had typed with her nose. She got her in and out of a wheelchair alone. she was frail but dead weight. She brought her home and took her back every Thanksgiving and Christmas to be with the family, and many young birthday parties were at the nursing home. There was a nice area outside perfect for it.
Now my Mother is the fulltime caretaker for her other sister disabled by Type 1 diabetes. I don't know how Mom does it. She just says she thinks it's her purpose in life. Now her Daughter is dying? She doesn't deserve any suffering. She is so inspiring, a true saint in my eyes.
I feel like I've totally lost track of my post , but I'm not changing it. I said this is where I'll come and say whatever I'm thinking and this is how I think. One thought leads to another. It's like going to the computer to quickly look up a toothpaste brand or something simple, then two hours later you're watching 'funny cat videos' and thinking, what did I come here for?
Oh yeah, my big secret life story with ALS online. Since my first post I've wondered who in my family may have spotted me, if so probably on twitter when I'm tweeting slightly out of my mind from insomnia that ambien is starting to lose the battle with too. When I see any of them, I'm looking for clues. Are they saying certain things they would only know if they've been reading? A couple of times it seemed like it.
So I think I'm going to tell my Mother tomorrow. I'm nervous. Not so much because of what I'm doing, but the fact I've used curse words. Remember, I'm from the bible belt and spent several years with my 'by the book' pastor Grandfather.
I just want it out though, I've made up my mind, I"ll be who I am here. I know, no matter what she'll still love me. I'm forty. I can say fuck if I want. I haven't told anybody though. Not even my kids, only Tony. I want it out because I would like to bring them up some and show pictures too. I've always asked people not to post things or pictures about me online so it's only right I give the same respect.
I'm nervous, but I think it will make me feel even more free, and will be a relief when everybody knows. So I'll start with Mom, then rest of the family. I will be set free. Nobody worry, I will never post anything hurtful or private about another person without permission. Only about me, I'm the open book.
I have a request for any old friend or family members that if you do start following my blog, please let me know. I'm just curious. I think I've rambled enough and Tony just served me some delicious food. So I'm off...
Until next time, take care
April
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Thursday, April 4, 2013
House Cleaning
Hello, I decided to use my energy today to clean up and add a little to the site. Please take a look around and don't forget to help spread the word about thealsexpress.com
I appreciate it.
Until next time, take care
April
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I appreciate it.
Until next time, take care
April
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