Archive for the ‘Uncategorized’ Category

Facing Who I Am

Posted: January 6, 2015 in Uncategorized

I’m finally writing a post. It’s not one I’m looking forward to. I’m facing who
I am and putting it out there. Sure, I can nice it up a bit, but I said I was
going to be honest about myself from the beginning and I see no point in
putting a fake persona of myself out anyway. I’m also having a hard time in
general finding words to describe myself and basically just write. It’s not
just free-flowing from my mind like before. So here goes.

I have had several obstacles in my way of getting this post out, but the main
reason is what I have to say about myself. I’m speaking for myself here but I
think it’s common for most people with this type of terminal illness. You get
to know yourself better. It becomes harder to deny the parts of yourself you’ve
spent a lifetime perfecting denying. I do want to give myself some credit. I am
a person with a genuine good heart and care for others. I’m also a real shallow
bitch, and the truth hurts. Let me explain a bit more with examples starting
with a little background.

I have ALS, there is a cure on the horizon which I won’t live to see. For
anyone reading my blog for the first time, I was in the phase II study by
Neuralstem Inc. and had 4,000,000 stem cells injected into my cervical spinal
cord. Feel free to go back in my blog and read much more about my experience. I
was lucky to be part of this study, having things falling in place by being at
the right place at the right time, meting all criteria, including just making
the limit of having ALS no longer than two years. You know, some people ‘seem’
to have these experiences more often in life. I don’t, yet I won the stem cell
lottery.
I don’t think I deserved this great opportunity and I’ll explain why the best I
can, but please know I’ll just be scratching the surface of this belief and it
will still be plenty.

I have some difficult losses that I don’t foresee ever getting back. I can’t
walk. Let me mention I wasn’t one of the three in this study to get lumbar
injections as well as cervical, which isn’t meant to help the legs. Guess what?
I did have some very unexpected strength improvement in my legs. I have a
stronger left leg giving me the ability to transfer. This is something people
with more extreme muscle loss and paralysis can’t do. I could do this with my
left leg before surgery although it was steadily declining. My legs are also
where I’m losing what I gained faster. I was still given more time with this.
Trust me, ask anyone with ALS who has lost the ability to transfer on their own
just what a big deal this is. It’s not perfect for me. It’s best if I can
transfer from certain angles and sides, but I haven’t fallen yet.

The thing is these benefits aren’t what I focus most on. I’m thinking I’ll
never strut my ass in 6″ heels again and look good doing it. Also remember, I
love my husband dearly and I’m not 22. This is a nice example of realizing how
shallow I am. I truly never knew I wanted that feeling so much. The loss of the
ability to walk, to me, means I’m ready to at least see the towel I’m going to
throw in.

Next: Before receiving my injections, my right hand was going down. This is
where I’ve had the most progression come back above legs. I have lost some
strength in my right wrist/hand/fingers but it’s loss of dexterity in my
fingers that has cause the problems. The frustrations of dropping things. What
makes it all so real and scary is that it’s made wiping my ass difficult. Loss
of control and dignity in this area is something I’ve always known would be a
huge deal for me. I’ve made it clear to my family that I will lie in my shit
non-ending before they clean me. I will no way allow my children to do this, or
parent, or sibling. The only people who I will allow is my husband, shame on
me, or a professional no one in the family knows. Outside professional care is
very expensive. I’ve been told I’m denying my family the ability to help in
such a way. I even understand it. I just won’t go there. I can’t take it. Major
guilt. I know this won’t change though. For the record, it’s not because of
some strange anatomical deformity and I have no herpes sores I’m ashamed of. I
just can’t have it. So it takes me a lot longer and many cleaning wipes are
involved. I’ve asked for help twice from my husband. I’m so thankful. I also
feel terribly guilty and gross. He handles it so well. I worry about him. I
love him so much. I want to hold the proverbial towel now.

I have felt extreme despair that I’ll be leaving my adult children way too soon
in their lives, There is so much of my grandchildren’s lives that I won’t see.
As much pain as this thought has caused me, I don’t let them in this nightmare
I’m living like I should. Like they want and probably need to be for their own
dealing and healing in this. I’m not saying I’ve cut them out of my life. There
are visits. There is text communication, but I do have my hands out. “Don’t
come to close to all this, I don’t want you to feel the complete impact.” I
mostly have myself convinced it’s for their emotional protection, but when I
allow myself to really think about it. I think it’s more of some fear part on
my end. I’m not ready. I don’t know that this is fair though. I love them so
much. They deserve the extra time I’ve received from the stem cells. Time to
let them in more before I’m gone. I can’t leave them feeling helpless.

Another reason why I don’t deserve the benefits of the stem cells. From early
on I’ve come to know several people living with ALS online. I don’t feel part
of the club anymore. It’s not a club any one wants to be a member of, but if
you’re in the situation, there are many benefits. You can give and receive
support and learn many tricks to deal with issues that pop up. You get all the
secret homemade tools to make life for person with ALS and the caregiver help
you along. I haven’t but have expected to be turned away at the door at any
time. Membership revoked.
I’ve scratched the surface of my very shallow thoughts turned to anger and
despair over the losses I’ve had. Now, let this sink in. I know several people
who are at the end. It could be any day now. I look them up most days in fear
to check and see If another life has been cut short. These are people who can’t
move, they are paralysed. the are either on 24/7 non-invasive ventilator, or
have gone on to a full invasive trache. They’re often in some degree of
physical discomfort or pain. They’re alive and so thankful for it. they use
their Eyegaze device to convey positive thoughts, to talk about another person
with ALS and how they are doing great at advocating and staying positive after
I’ve just spent hours angry that I can’t jump in the car for a ride, or shake
my ass. They often can’t move one finger. These are the ones that should have
received stem cells in time for this not to be. They deserve more quality and
quantity of time. Not me. Not shallow bitch who advocates by participating in
trials with unspoken hope of benefit. My biggest contribution that has only
hope for future patients is that I do endure, usually screaming like a child,
getting lumbar punctures for the, Validation of Biomarkers Study. This is
important and a great help to research. I give myself credit, but I still don’t
deserve the stem cells.

I have also stopped communicating with about every one on a private basis too.
Just stopped. To those who have reached out to me with no reply back as usual,
I want to give my sincere apologies to you. Most of them, I sat in front of my
laptop trying to reply. I don’t know why I couldn’t find even the simplest
words to reply. It had nothing to do with not caring. it has been a strange
inability.

I have to end this by saying, deserving or not, I am proof that we have a
genuine, true treatment for ALS. I know we have a few stem cell trials out
there now. Stem cells made from your own skin, and others. I hope for these to
have as much success. I can only speak for the stem cells I received in my
cervical spinal cord that are from Neuralstem inc.

It’s been 14 months now. I know without a doubt I would be much further
progressed without them. This isn’t just my belief. It is clinically
documented. The clinical data of the study results are supposed to be published
by the end of January. I’ve read a phase III trial will begin shortly with more
participants. I wish we could skip it and go on to have this available to all.
There are people still living with improvements, time and quality of life,
since phase I. This should be available now!

I want to thank everyone who participated in the ALS Ice bucket Challenge. Much
needed money was raised world-wide and is funding research, and many more
people were made aware of this horrific condition.

I’ve expressed here before that I’m a very private person by nature. I just
gave a very personal glimpse into my thoughts and feelings. I expect there will
be harsh messages, more than usual. I just want to say I know I will feel
overwhelmed with lots of nice messages also. Please don’t feel the need to
express how I really am deserving. It will stress me. I know who cares, and
thank you.

Again, I hope to blog about my move to a flat new home, including pictures.
Deserving or not, my life is much better here. If I can put this out, I can
surely manage that soon. I’m not going to bother to give a time.

So you all know that I know, I’m fully aware you are completely entitled to
your opinion of me.

Thanks for reading and take care,

April

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Swimming the Solent

Posted: August 27, 2014 in Uncategorized

Swimming the Solent

It’s been a while. I just have to write when the need comes and I feel the need right now. I ask you please bear with me for any mistakes as my thinking can be a little foggy right now. It’s likely I’ll make a mistake, but no harm, right? If you can’t figure it out just get with me.

I feel a little out of the loop on some things since I haven’t spent much time online lately while I’m still recovering from surgery. I am elated to see how the ALS Ice Bucket Challenge has raised money and awareness. Several people have poured ice water on themselves and donated in my name. Thanks to all participating in this!

I want to share my last Emory, nine month, post operative results. Again great news! I’m holding steady. I did hope and believe my breathing score would be a little higher, but it’s still at pre-surgery baseline and I was steadily declining. Even though I do have mild slurring, my voice is still stronger than pre-surgery. I still feel that my right wrist is slowly going back down, but I’m still above pre-surgery, so I’m not complaining. Both legs are still a bit stronger even though my right is pretty weak. I’m still not walking any real distance with my walker and having lots of joint pain and a feeling of broken bones in my feet when I do. I’m so thankful for my strong left leg that keeps me more independent by being able to transfer. I don’t think I’ve mentioned before that I’ve been having trouble sitting up in bed for any length of time. before I know it I’m all the way on my back. My left leg really serves me here. I park my power chair close and midway up the bed. I brace myself with my foot on it and push myself back up. I have a body pillow to put in front of my sit bones and I can pretty much keep myself up on my own. Sometimes I get in a situation and can use a little help from my husband. The things that cause me the most problems are my weak core muscles and my rear deltoid muscles. These are what cause me to slide down and have such a hard time getting back up with my arms. So thankful for that left leg and the improved and prolonged strength the procedure gave me. There is no doubt in my mind I’ve been given better and longer quality of life because of being in this trial. I’m so thankful! I’m also thrilled to learn there will be a phase 2b trial coming right on the heels of this. I can’t wait for the official report for this trial and really excited about the next with more than twice the patients to have the opportunity to benefit and prove the efficacy of what I now refer to, from my experience, an actual treatment for ALS. There will be hurdles to overcome with it being an invasive surgery instead of a pill. It can be done. I thank the phase 1 participants for being willing to take this first ever risk. With some of the fear of the unknown taken away, I’ll forever be grateful to be in phase II.

I also want to share something from a long distance friend of mine, Tony Bray. A few years ago he decided he wanted to do something for his own health. He chose swimming the Solent on the Isle of Wight, He also wanted to do it for charity. He has a close friend who I also know online and consider a friend starting because we have something in common, MND/ALS. After considering a few charities, it soon became a no brainer for Tony to make this swim for his good friend and to bring awareness and raise money for this often very misunderstood terminal illness, MND/ALS. He started training witch is no simple feat. The Solent can have strong currents and it’s a major shipping route for passengers, freight and military vessels. The early years of this annual event has helped Tony live a healthier life and every year his team has grown. It is now officially, The Ian Pratt MND Challenge. At least 21 swimmers took the challenge this year and I expect it to continually grow. This year he and the other swimmers as well as the great safety crew wore awareness bracelets in honor of those who are no long with us, MND Angels, and for us still here fighting this battle, MND Warriors. Tony wore my bracelet all the way across. He told me he used the bracelets on his arm and thought of us as inspiration during the hard times. I’m by far a sappy person, but this means a lot to me. We’ve all had our bracelets worn during the swim  and our swimming the Solent accompanying certificate mailed to us as seen below. I’ll always keep and cherish mine. A huge thank you to Tony, the other swimmers, kayakers and all support crew for taking on this challenge to raise money and awareness for all of us. This goes way beyond the Isle of wight and on to a global event. Thank you all!

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I’ve been slacking a bit on my range of motion exercises. ALS never takes a break and we can’t either. I’m off and on to them now.

 

Please visit my website: http://thealsexpress.com

Until next time, take care.

April

aprilinhat

I can’t wait to be able to go places in my power wheelchair. I do have one big fear: The Restroom. Right now if I find a place with a restroom that has a large enough stall to drive my chair in I’ll be fine alone. I have enough left arm and left leg strength to transfer by myself.

When we are able to get a wheelchair van, Tony and I have a couple of trips we want to take one last time. It’s not going to be so simple stopping off at any gas station to use the restroom like before. I am getting weaker whether I want to acknowledge it or not. I may need his help. I imagine myself falling onto a floor of nasty piss. I get sick think of it.

I don’t know how to go about having him come in. If it’s a one toilet room and big enough to accommodate my chair, that’s fine, we’ll just lock the door. It’s the most common type of restroom that has me worried. The ones with about five stalls and one large handicapped accessible stall. I know a lot of women will get dramatic with a man in there, even though it’s obviously to help me. I mean it’s not like he’ll be looking through stall cracks. I just know how some women are.

One thing I know is Tony will have no problem with it. He will do what has to be done and if someone has a problem, he’ll let them know real fast it’s their problem. I also know if he thinks I feel offended, he will get angry and let everyone know. There are so many great things to having this type of caregiver. The downside is he usually doesn’t let it go and he stays angry. I want to have a good time. I can move on from rude people for the most part better than he can, even though I have had my moments.

I want these trips to be enjoyable. I’m beginning to wonder if they’ll even happen. I know the longer we wait, the more I will be dependent on him. I’ve already gone from expecting these trips to take place while using a rollator for walking, to knowing I’ll need the wheelchair to be safe. What other abilities will I lose before we get to go?

Today hasn’t been the best day for me but it could be worse. I don’t judge a good or bad day the same as before ALS. It’s so true, ALS changes everything! I’ve had more cramping today than the last couple. Strange as it may seem, It’s been a good day to have a bad day. I was able to enjoy time out over the weekend because of less physical symptoms. It’s bad to have this type of day when I want or need to go somewhere.

My shower was the biggest ordeal of the day. I can’t wait to get my shower chair with a back. Right now I’m still using a bench type and sometimes I feel unsteady. It’s getting harder to shave so most times I don’t, but then I don’t feel clean. That mixed with cramping and recognizing my weaknesses leave me feeling bitter and Tony frustrated. We came close to real arguments a couple of times. We both stopped it in time. We’re both grieving. This is not the life we’re supposed to be living now and we are both coming to terms with the forced changes in our own way.

I’m going to try and make the best of the rest of the evening. For whatever reason my mind has chosen to focus on restroom use when traveling more than anything else today, so instead of going over everything I decided to share that and hopefully move on. Thanks for reading today’s rambling.

Please visit my website: http://thealsexpress.com

Until next time, take care,

April

aprilinhat

I keep myself busy. I think it’s good for my emotional well being and overall quality of life to be active, to feel I have a purpose. It’s very important to me that my family is left with something meaningful. A piece of jewelry, or a memorable household item is nice but I also want them to have an easy to store, easy to access, message from me that they can see whenever they want. I’m making  something they can all share together after my death. It’s individual messages and more. I’m writing this blog in the hope others with ALS, caregivers or anyone will find it helpful, and it does keep people in my life updated. It also keeps people I don’t want to be updated in the loop, but I’ve already come to terms and accepted a certain amount of privacy is part of the trade off when blogging.

It’s also an outlet for me. I get out feelings I normally wouldn’t by talking. It can be stressful at times. I’m dedicated to it and I don’t like to miss goals or deadlines I have set for myself. Sometimes my blog goals light a fire under me and I’m happy, other times I’m stressed and disappointed in myself. Sounds pretty normal to me. Ultimately it gives me motivation and the feeling of living. When I’m busy in this mode I can discuss ALS like one might an annoying hangnail, sometimes to the discomfort of others.

Today is one of those days that isn’t going as planned. I just found out I’m off on days and I have to plan other things. I’m frustrated at the things I can’t do on my own. I’m scared of the things I won’t be able to do as I progress and how that will be dealt with. By keeping myself busy, this all goes to the end of the list of things to worry about. ALS will eventually demand attention, the narcissistic piece of shit that it is will make it through my barriers to the forefront of my thoughts on it’s own terms. This is when it’s the hardest to push it back. It demands attention. These times I often regretfully become irritable and short with Tony. I may point out things he’s doing wrong, which hurts his feelings and depending on where ALS is in his mind it has great potential for an argument.

That’s where this day was headed, but I stopped myself. Today, I cried. I just let my feelings lead. I let myself feel the fear, anger, frustration and helplessness. I didn’t fight it,  push it back to the end. I let the cry come from the deepest parts of me that even I rarely acknowledge myself. I did this alone. Just me and  ALS. I did this for about ten minutes. It was scary and painful to think and feel the fear of what ALS is bringing to me and my family. The anger at how this has changed the rhythm and plans we had going. The pain it’s causing my family and will only get worse.

When I stopped, I felt a weight lifted. I’m not one to cry easily. I don’t know why I avoid crying so much. It doesn’t bother me at all for someone else to cry, within reason. When it comes to me, I fight it. I think of something else. I avoid the feelings causing it. I’m really admitting this to myself as I’m telling it to you, my readers. I’ve learned another coping skill. It’s not something I want to do every day, but I think I should incorporate it in as needed. My goal is to allow myself to cry occasionally. A good hard cry.

I hate to ruin a positive vibe, but to be honest, this brings a new fear. I stopped my crying a little short because my nose was congested and I started feeling short of breath. It makes me think of later down the road when I need my vent all the time. How will I handle that? Will I have to work harder to not feel the pain. Will there be a breathing crisis? I’m not going to think of that now.

I’m stopping here and I’m staying here, with what I’m dealing with right now. I’m going to allow myself to feel proud for what I did. Today, I cried. I mean cried, and I felt better.

Please visit my website: http://thealsexpress.com

Until next time, take care,

April

aprilinhat

I have a wonderful loyal friend that I spend almost every minute of my life with. It’s my little 7 lb toy poodle, Abby. Last year when I knew I would be spending so much time at home, Tony and I decided to get a dog when we sold the house and moved. We already have our mixed breed Jackie. It’s not advisable to bring in a new indoor dog while trying to sell a house, so we weren’t going to. We live close to a no kill pet placement center so we went over to look around. There were so many cute dogs and especially several full breeds. We found out they came from a dog hoarder. As cute as they all were, they came from a really bad situation. They we never socialized with people at the crucial early puppy stage.

Amidst all the cute dogs, my eyes kept leading me to a specific kennel with two dogs in it. A trembling little chihuahua and a tiny little poodle that was fiercely protecting it. She was no typical cute little poodle. she was clean but had obviously had a bad haircut and exhibited everything we didn’t want. We looked at other dogs, beautiful well mannered mixed breeds, as well as some full breeds registered with papers. A full breed or mutt dog never mattered to us. We’ve always had medium or large mutts, I tend to prefer mutts. I’ve heard all the horror stories of puppy mills that I certainly didn’t want to contribute to. We went ahead and filled all the paperwork out and went through the approval process the placement center has so we’d be set when we moved. We still haven’t moved.

Just for something to do and a way to help the volunteers, we stopped by to pet the dogs. I noticed the poodle was missing. I was told she was staying at a foster care house, and to come back tomorrow and the foster mother will bring her in. I thought why not? All these dogs needed all the attention they could get. We came back the next day and went to a private area outside with the foster mom. She told us Abby was house trained, she was fine with other animals but didn’t like strangers coming in. Little Abby seemed uncomfortable and wouldn’t really let us pet her much. She was very untrusting. I still couldn’t stop feeling drawn to her. By the end of the visit, I was able to hold her and there was that magical connection that I know you dog lovers know exactly what I mean.

I wanted to take her. I knew she would go fast. I told Tony I really hope I find another connection or by some miracle she is still there when we sell. Which we thought would be soon. We decided not to keep going to shelters of any kind because we just wanted to take them home. So we agreed to wait until we were ready to adopt. I thought that was that.

I am very well in tune to Tony and when he’s up to something. After a doctor’s appointment a few days later, he suggested we stop by the Pet Placement Center. I didn’t argue, I loved going, it was just hard to leave sometimes. When we got there Tony casually asked about the little poodle. The director said she had been adopted. My heart sank even though I knew they didn’t let just anybody take her. Some other things were said while I was planning to give some dogs a little attention. Then the director came over and handed me a file. I opened it to see we were the people who adopted her. Tony had been getting everything finalized for adoption and had them in on the secret. I couldn’t believe Tony pulled this off but I was too overwhelmed to think

Abby

of it. She was put in my arms and that was it. While at The Pet Placement Center she had been spayed, had a micro-chip placed and a wound treated from being crowded into a crate, living in her own and the other dog’s feces. Her teeth had been cleaned, all her shots and she was started on monthly heart worm treatment. She had also received lots of love just like every other animal there.

Now Abby stays by my side unless Tony is taking her outside or feeding her. She finally loves and trusts Tony, but she stays with me. Her behavior is great when out in public. We do have problems with visitors in the house. We’re working on that.

I know she senses something is wrong with me, she watches me struggle. She protects me in the same way she did that chihuahua. We learned that dog was in bad health and had heart worms. So Abby made it her business to protect her.

I don’t want her to feel the need to protect me and most importantly I don’t want visitors to have a dog going in for the kill if they make a move she sees as a threat. She’s tiny but she can look vicious. We have started a new plan to stop her of that behaviour. We have to stick with it to work, but she will be taken away from me for a few minutes every time she lunges at someone now. I know she’ll overcome it. She has overcome a lot and she is very smart.

There is one thing I think about at times. Right now I can love on her. It’s not easy to move her around with my weak right arm but I can pick her up with my left. I pet her so much. There will come the day I can’t anymore and I wonder how that will affect her. When I have a bad day, I imagine her distancing herself from me, but no, I know better. She will stay by my side. She will put her little warm body on my cold hands to warm them like she does my right foot sometimes. She will be with me until the end and then she will be there to support Tony. They’ll both be in good hands.

She notices everything about me. When I first started using my Trilogy 100 ventilator, she was a little hesitant of it. Now When I put it on she positions herself so that she can see the numbers like she knows what they mean. The air coming out doesn’t bother her anymore either. She seems to know I need it so she’ll let the air hit her in the face. I do always try to direct it away from her though. If I’m having a bad day she will gently paw at me then snuggle up closer and stare me in the eyes. It melts my heart and before I know it my attention is on her.

My main message here is to never understimate the ability of a dog to help you through any hardship, including ALS. With the challenges of ALS, it may not be best for everyone. I’m lucky I have Tony to take care of all things dog. Twice a day feedings, letting her outside, often in the middle of the night. She has to be groomed regularly. It is a responsibility for sure. If there is a willing dog caretaker for you, and you love dogs, find the right one and it’s better than anything else available for ALS right now.

Here is a link to the no kill Pet Placement Center we adopted Abby from: http://www.thalppc.com/

Until next time, take care,

April

aprilinhat

While in the process of working on several projects, primarily for my family to have after my death, I’ll catch myself thinking of being there when they see certain things. I won’t be there, I’ll be dead. It’s only a brief thought before I realize it, sometimes it makes me gasp.

It’s the same feeling of momentarily thinking of seeing someone you love who has died. You have the thought for a moment, then you realize they won’t be there, ever. I think it’s part of the grieving process, the mind refreshing and reconditioning itself to accept the new reality. As time goes on, these feelings eventually come less and less maybe resurfacing during stress for some people, especially if it’s someone you spent a lot of time with. A real part of your life.

It’s very strange experiencing that with myself. But that’s exactly what’s happening, I’m mourning. I think it’s something only the terminally ill can fully relate to. I’m planning my own afterlife gathering, if you will. I have a show that is at an hour and a half long now. I at first set the limit to an hour. Now I’m struggling with keeping it under 2 hours. It will be watched by them on a large screen TV in my Mother’s church. I had at first planned on reserving a nice cozy room where they can sit comfortably and watch without any formalities of a traditional wake. I started realizing this would be difficult because of the amount of people present and possibly the timing. I don’t want Tony having to put anything together, his work will end with me. It will be time for him to mourn my actual death and began living life without me in whatever direction he chooses. My Mother likes the idea of it being in a church and her church is well set up for it with large screens ready and plenty of room.

I’m also focusing on more individual and personalized things for my immediate family, especially my kids. I sometimes feel in a hurry, sometimes I feel I have plenty of time.There is my website and blog that will always be here for anybody. I second guess at times whether or not this blog and how much I express of my personal life and thoughts will be a good or bad thing for my family. I always conclude it will be a good thing. Hopefully one day it will be known, along with others, as the blog of a person with ALS before there was a cure.

More than anything, it’s my show that I’m making for them that gets me the most. I will have a thought of seeing the reaction of it, especially the lighthearted things. I’m not wanting to use the word celebration, but There are moments meant for laughter. It’s not a doom and gloom feel I’m going for. Yes, I realize they will be mourning, but I want them to laugh too, and have this recording at any time they feel like watching it. I think a special and personal recording of what I have to say to my the family is much better than the bulky box most funeral home sell you that most often are taken home and stored away like a bad secret.

Other strange things occasionally hit me too. For example, on my website I have a daily pic page, it only shows the fist picture right now. I plan to show that every several months so that the progression of ALS is seen in time lapse form. Tony took the first picture on my one year diagnosis anniversary. We take one every day. It will be up to my family before I die whether it is something they want kept on the site for others. I’ve thought of watching it all the way through. I will get to see most of it except the final picture. I will be dead.

There is also the documentary that will span my entire journey with ALS. My day to day life and adaption to progression along with other things will be shown. It will be from close to one year after diagnosis until my last breath. I’m extremely lucky I have 7th Wave Pictures dedicated to this. No, I don’t have a camera following my every move every moment, but often. and there will be years of footage when it’s over that will show everything a person with ALS experiences, and how I dealt with it. In the time since we’ve began, I already forget when a camera is rolling. I’m not holding back anything from being recorded. I don’t know what I will get to see, but I know it’s not the ending. I’ll be dead.

I’m sure some people reading this will think this is strange and morbid, and it’s keeping me from focusing on living. The opposite couldn’t be more true. I do have other interactions that don’t involve my death or ALS at all. The hard reality of it is that ALS and the fact I’m dying are a big part of my life, and for the rest of it.

Everyone has their way of dealing. For me it’s keeping busy with it. I can’t stop it from happening. It keeps me feeling like I  have some control and purpose over what’s happening by documenting it’s course to show people what it’s really like behind public smiles and closed doors. I know this would interest me, especially as a person with ALS. I’m doing what I want and I think I’m doing it in a healthy way. Problems come up that have to be dealt with, but that’s the way it is for any endeavor. That is life.

I do take breaks when I feel I need to and when I see Tony needs to. Tony is a part of everything. Without Tony the show I’m putting together wouldn’t be possible. He has experience in what I’m wanting to make and is really making my vision come to be even though it’s hard at times, after all he is part of it, He hasn’t asked anything be changed about my message to him or anybody.

This is what keeps me going. It’s not for everyone, but It is for me.

Please visit my website: http://thealsexpress.com

Until next time, take care,

April

aprilinhat

I’ve had it rough the past few days. In my last blog post I mentioned not resting before clinic day. I’ve been paying the price for that. To make it worse, Friday was the longest and most intense clinic day I’ve had so far. The great news is my breathing is holding up well. I don’t know if there is anything documented on this but I truly believe starting early with help breathing keeps you breathing better, and longer. It’s probably more of an individual thing, as no two people are exactly the same in progression but it can’t hurt. I recommend getting one as early as possible, when you first have measurable decline. I also think the trilogy 100 is the one to get without a doubt. You can go back a few posts and read my experience with it if you haven’t already. I’ve been using it approximately six hours a day give or take, depending on the day, during any given 24 hour period. No more morning headaches or waking to crackling lungs for me.

This ALS Clinic day was very taxing even if I had rested better the day before. There seemed to be a lot more patients there. Every other visit we are called right back and given a room. This time I was called back and after weighing and blood pressure, I was sent back out to wait about an hour. I’m not complaining really, I know clinic days can be overwhelming and you never know what it will be like when well over 100 people are being seen in different stages of progression. Some people take priority and this is one thing in life you don’t want to be given priority status for. I’d much rather wait.

My severe right leg atrophy, and the changes it’s caused in my walking was the most devastating part of the day. I’ve been hoping to be accepted in a clinical trial and you need to be able to walk. I was hoping I was wrong because this is a trial I meet all other criteria for and I want to be in. I haven’t walked for a while now. My left leg is still pretty strong and larger than my right bacause it still has much more muscle. Guess what? That’s right! to my own amazement, I walked. From the exam table to the door and back. Tony walked right beside me, I’m sure like everyone else, he was thinking he needed to be there to help when my right leg carried me on down to the floor. I did it unassisted. I did it!

So this puts me back in the running to be chosen. It’s still far from over. I’m still a very good candidate, but now my records must be reviewed by an independent neurologist. They don’t play or stray at all from the criteria set for clinical trials. That’s a good thing, even though it can be frustrating. If they did, the outcome results could be skewed. Even if I get the go ahead from the independent review, I’ll still have to go through more screening. So I’m far from being in, but I’m not out either.

If it does turn out that I don’t get in the trial, yes I will be disappointed but not defeated. I will search for another. I already know it’s highly unlikely I will personally be saved from the death sentence that is ALS. Even so, as long as I possibly can, I want to be a part of research to end this for others behind me. Do I wish something will help me? Of course, but I make it a point to stay grounded in the reality that it’s highly unlikely.

I think the main reason of all is it keeps my mind busy. I’m already busy with other things I’m focusing on, but I don’t want to give ALS the opportunity to get in my thoughts too often in a way that reminds me of all things I’ll now miss out on in life. Trust me it’s easy to be lead there by ALS. I want to play a part in ALS being stopped from ripping apart more lives and families.  I want to stare my nemises straight in the eye while I deal with it’s destruction day to day. It keeps me living.

I do feel the extreme fatigue and accompanying symptoms like spasticity and cramping letting up. My range of motion exercises also were easier today. I’m loosening back up and ready to get back to my projects. Sorry ALS, you loose again!

ALS is a daily battle. It’s never a good idea for me to think I have the next day defeated. I wait and see what ALS has for me everyday and I decide how I’ll deal with it from there. I have learned to never get too cocky. ALS will fight harder then. I take it day by day and minute by minute. I can do that or sit back and take what it throws at me. Some minutes I don’t have much fight in me but I luckily have the support and encouragement to get back on track. I’m very thankful because I know many people don’t have that.

For now, tonight, I’m going to watch a movie with Tony and during that time put ALS in the background.

I plan, I said plan, to blog tomorrow. Not sure about what. Thank you all very much for reading.

Please visit my website: http://thealsexpress.com

Until next time, take care,

April