I know all about bad days with ALS

Post 8 of 84

After my last rambling post, I want to at least have a topic to stay on. This isn’t a frenzied post but will still cover more than one topic.

My Care Services Coordinator offered me and Tony the opportunity to make the trip to Washington, DC for National ALS Advocacy Day. It’s something we’ve both wanted to attend. After talking over it a few days we decided to not go. It was a tough decision because I think it’s really important for us all to be united in such a way and able to speak directly to people who can be a voice for us all. The timing is just off for us right now. If I can’t do it being fully prepared, I’d rather someone else go who is, but can’t afford the trip to be there. I’m disappointed about it, but feel we made the right decision and let her know this morning. Thank you to all who will be there on behalf of the whole ALS community. Who knows what next year will be like, but I hope to go then.

Time for cloud storage when it comes to saving important files. We had a Seagate external hard drive crash that had so much on it that is important to us. All the work that had been put into my after death messages to my family. Something we started working on not long after my diagnosis. At the time I was calling it, April’s Show. Why not be a little narcissistic after life? A lot of work and footage is on there and a great comparison for pre and post surgery. We also have  footage on it that at I think, at least some, will be shown on my documentary. I was devastated for days while Tony  tried to recover it. We finally came to terms we’ll have to pay someone to get it back. We’ve had extremely varying quotes from under $100.00 to close to $1,000. All very confident, but who to trust? I know little to nothing about this but have heard of low cost people making it worse and truly irretrievable. Tony keeps trying to assure me we’ll get it back. I don’t think he’s lying, but I won’t feel better until I see it. I can’t stand to think of losing all that. It’s really invaluable to me. I hope to get it back and will never trust another external hard drive.

I’ve been wanting to devote a post about ALS and how life goes on despite it. The great things go on and hopefully you get to be a part of that when you want, but the more you progress in symptoms the more you have to count on other people to make it happen and can turn that time into hardship for them. This isn’t something that is extreme for me right now, but I’ve thought about it since the beginning. Right now Tony has taken most of any burden without complaint. He has received some help. We’re both a little broken and want to go it alone as much and as long as possible right now. There is also the tragedies that can strike any family. That really scares me when I think about being further in progression. Before the stem cell study, my future was a little more predictable as far as progression and approximate timelines of how bad things would be and how much help Tony would finally have to give in and accept. In the best way possible that’s a little more unpredictable right now. I still have thoughts of not making it to a close loved one’s funeral when I’m much further along. Not making it to all kinds of events, good or bad because of ALS. Right now, I have missed a few things because of extreme fatigue or a place not being handicap accessible. The fatigue is really the hardest to deal with for me at this time. I feel not being there for something is hurtful to others because the fatigue is not tangible. No one can see or feel it and it’s easy to not be taken serious. Everyone feels tired, but goes on. ALS fatigue is different. It’s more than tired. I would have had a hard time understanding it before experiencing it. I’m so thankful to have a husband there to make sure all is taken care of. ALS is horrible to the afflicted and those who take care of us.

I want to touch some on life post stem cell surgery. I’m still very much enjoying the improvement in dexterity and strength in my right hand and arm. I’ve been hesitant about mentioning my arm, but the improved strength is no doubt there.  I can hold a plate of food long enough to set it down only using my right side. I can play with Abby easier. I can eat and put a fork through a piece of pineapple. I could not do these thing before. I used my left hand, that had more strength. It has even improved. I can still project my voice louder and speak longer without becoming hoarse for much longer. My speech is most often very intelligible. I have a couple of things I think cause the occasional major slur, mispronouncing words here and there. One is that the right side of my tongue is still a little atrophied even though it seems stronger when moving food. The second is the roof of my mouth. You can slide your tongue along the middle roof of your mouth and feel the bony separator in the middle. The left side of mine curves up which is how it has always been. The right side only has a very slight curve up. It’s like it’s collapsing on that side. The differences in the tongue, even though it is mildly atrophied, has the sensation of being thicker. Between the tongue and the roof of mouth flattening down on that side, if not being very aware, some words will sound slurred. Other than feeling my tongue is a little stronger moving food, there seems to be no real difference in tongue or roof of mouth since surgery. This is my opinion, I haven’t been told this. I feel this was something actively progressing at a noticeable rate to me before surgery. Since surgery it seems to have just stopped. Eating and drinking water was at the beginning stages and I was preparing for continued worsening speech and swallowing water which Tony had already started thickening because even though I was never in a real choking situation I was having more sudden coughs from feeling like it was going down wrong pretty often . It still happens once in a while now but I don’t use thickener anymore. I was noticing more trouble with coordinating the chew to swallow process. I deal with that much less and eat with more ease. It’s either a slight improvement or a complete halt of these things and staying at the point I am used to working with. I’m doing my best to explain what I’m experiencing. I have no other reason to believe this stopped or possibly improved other than participating in the Neuralstem, stem cell study. The improvement in my speech and my right hand is obvious to people who knew me before surgery.  What I’m experiencing with my soft palate and tongue are much more difficult to get across, but these are very important issues regarding quality of life and even extending life. That’s why I’m attempting to explain the feeling of it and what losing these abilities mean. The ability to speak and swallow liquid and food longer is amazing to a person with ALS.   A lot of the things I’m experiencing as improvement or halt of progression is not as obvious, especially to people who weren’t around me much. The people who know me all noticed improvement in speech, people can see very clearly my ability to use my right hand better. It’s hard to see and understand a soft palate stops collapsing and better tongue control. As I’ve said before I hope I’ve explained these things in an easy to understand way.

There are a couple more things I want to mention but not until next months appointment at Emory. I have some questions myself and want some answers before I start posting about it. I still just can’t say enough how lucky I feel to have had the surgery. There are new studies and studies in stage II and III that hold promise. In Arizona the House Committee on Reform and Human Services approved,  “right to try” by a vote of 5 to 3. The bill now goes to the House Rules Committee. If approved, it will go to the full house for consideration. This is expected to pass and I would expect other states to follow. Even though it still isn’t happening fast enough for people who are dying, it is progress and I want everyone to keep hope alive and keep fighting. Even though it’s slow, there has been more progress in ALS research and other rare diseases in the last few years than ever before.

Please believe me, I know all about bad days with ALS. I’ve had days when I just want to dare someone to tell me to be positive. These days are normal so don’t feel guilty over them. There is someone else with ALS feeling positive for you. Never give up!

Until next time, take care,

April

 

April

This article was written by April

4 comments:

JeanneCMarch 19, 2014 at 8:27 amReply

Hi April, I’ve just read your blog for the first time. I’m in the”diagnosing” stage of ALS at Johns Hopkins and my symptoms still progress kind of slowly. I lost the use of fingers in my left and began having slurred and hoarse speech last April. It was very noticeable to me because I was doing Japanese Embroidery, which requires the use of both left and right hands. One day I couldn’t pick up my needle – and that was the beginning. I’m considerably older than you, 75 years, with 5 children and 12 grandchildren, so I am very lucky in having this wait so long to get me! One of my sisters is a nurse and she declared “you’re too old to get ALS!” If only that were true! My situation is made more complicated because my husband has a form of dementia and is not able to help as much as he could if his mind was clear. We’re preparing to sell our “dream house” on the water and move into a continuing care community to make things easier on us and our children.

Your description of your results from the Neuralstem study are so encouraging. As soon as I see my doctor again I’m going to ask about participating in one of the trials. I’m currently doing a 3 times a week exercise program with his permission, since I can’t be in his clinical trial because I don’t have a clear diagnosis yet. I have subscribed to your blog and will be eagerly waiting for future news on the Neuralstem results and your continuing improvement!
Jeanne

April AprilMarch 22, 2014 at 6:13 amReply

Hi Jeanne,
I’m sorry you’re experiencing this and stuck in the diagnosis process.
It’s always particularly heartbreaking to know of a very young person having this hit them cutting their life so short. At the same time It always bothers me when people downplay the diagnosis of an older person. People who have lived a full life and have many years ahead to enjoy this stage they’ve earned. You’re selling your dream house on the water. From what I get from your post, this isn’t something you’d be doing if not for these symptoms. I imagine it does add more stress and wonder about the future with your husband’s condition. I do hope you find a great place to live that will suit both of your now, and upcoming needs.
I’m very pleased with the results from participating in the Neuralstem study. I’ve explained before as it feeling time has been set back in a sense, reset in some areas to less progression and I can do things I was struggling with before. I feel very lucky. I have no idea how long it will last, hopefully a long time.
I can say Johns Hopkins is a great place for you to be. I know they are very active in clinical trials. As soon as you get your “official” diagnosis I hope you are able to participate in a study that is helpful to you. I go back to Emory soon and still feel strong about my results.
Thank you for subscribing to my blog. Every post isn’t all about happiness, but you can count on honesty. I wish you the best while going through these changes. Don’t forget to take care of yourself.
April

PawalleyeMarch 20, 2014 at 10:52 amReply

I am really sorry that your situation will not let you go to DC. I was asked to represent ND and I was hoping to meet you. Like you I have made a commitment to try to be positive about this thing that has stolen my dreams. I need to say that your blog gives great support to people like me. Good days/Bad days are just a part of life. I think that ALS focuses these so that they become bigger issues and bad is always worse than good.

Hang in there and know that you are on my prayer list,

Rick

April AprilMarch 22, 2014 at 6:36 amReply

Hi Rick,
Even though I know it’s not feasible to go to DC, it’s still a disappointment. My husband and I really wanted to go. We both would love to be there doing our part, and also meeting people we’ve been in touch with in person. I’m glad you’re able to go and I’m sure you’ll meet many great people.
I’m very glad you feel the way you do about my blog. Sometimes I feel I’m being too negative. I just stick with being honest and I’ve had many people relate to that. Even though everyday isn’t full of joy every minute, I’m always very much in the fight to help in any way to find a treatment/cure for ALS. We can never give up! Send that message and spend the rest of the time meeting people who know what you’re dealing with in DC.
Thank you and enjoy.
April

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