Hello everyone… It’s been longer than I’d like since I last wrote. I’ve had a whole lot of nothing going on. As I’ve mentioned, I’m in the phase II stem cell trial and that means I may or may not have the surgery to inject the stem cells. There has been a lot of tests and a lot of hurry up and wait. Going over the little I’ve just written makes me feel a sense of guilt. I have great support from family and Emory staff. I don’t mean to sound like I’m not grateful. I am so grateful to be where I am and I’m willing to do whatever it takes. I was surprised at learning the smallest thing can mean I’m out of the trial. I guess what I am is scared, nervous I’ll get that news. Any phone call could be the one saying I don’t meet the strict criteria. It’s amazing what all has to fall into place at just the right time to be on the table having these cells injected. Being in the trial is no guarantee I’ll have the surgery. I’ve also mentioned before, I like and feel a need to know what’s going on regarding me. I need to feel prepared. You just do not get that with this trial while going through all the testing. I understand and accept that. I also know it’s for a very good reason. In the big picture, this trial isn’t about just me, it’s about finding a cure or treatment for ALS. It may turn out I’m not one that will help move that forward with this specific trial. That is one thing I have been trying to prepare for in the event that is the case. I am feeling very positive about it though.
Between waiting for the next test result or the next test to undergo, I have been focusing on other things. I’ve escaped some in reading, I’ve organized closets. I’ve enjoyed some mild pampering, things I haven’t done near as much since my ALS diagnosis, like a manicure and waxing. I Had my first haircut in a year. I couldn’t believe it was that long ago. I haven’t been avoiding it, priorities and life in general have just changed. My hair is simple with straight long layers so it’s just grown. I did have it thinned out and it’s much easier to brush and dry. I kept most of my length.
Tony and I have talked about things we want to do. I’ve decided I want to hang glide tandem. Luckily I’m about 30 minutes from a great place that offers that. There are some places we both want to revisit together. places we haven’t been back to in years.
This travel talk brings me to what Tony did a few days ago. We have talked about it a couple of times and decided not to do it. Pride is why. I know this was hard for Tony. He set up a page on the site gofundme.com. He wrote about needing a van to take these trips. My right leg is pretty bad so I use it for walking only when really needed to avoid injury. I can’t just go walk around the mall or take a walk outside. We have a transfer chair that I have to be pushed in. When we are out I’m often wanting to go a different direction. Before it was no problem, we just set a time and place to meet back up. Now he, or whoever is pushing me usually has some resistance to deal with. I see something I want to check out and I grab hold of something with my stronger left hand or put my stronger left foot on the floor. If I was able to take my power wheelchair it could be like old times. I could ride off to where I want to go and meet up at a set time and place. It would be too much trouble in my opinion to take the road trips using the manual chair. Tony knows all this. He made the page and showed it to me. I know Tony well, and I know he swallowed some pride. He has never asked for financial help. He set a goal of $20.000 for a wheelchair van. We looked and researched and decided a while back that it will cost between $15,000 and $20,000 to buy a reliable van for travel. We have always planned to do this when the house sold. It’s been on the market well over a year and ALS isn’t waiting.
I know I started with saying a whole lot of nothing has been going on when actually there has been a lot going on. It’s just things we’re not used to. I’ll say yet again, ALS changes everything! That is not an exaggeration. Whether I make it to the operating room or not, van or no van in time, I know I have a husband in this ALS deal 100% with me and that’s a great feeling. I know many people with ALS don’t have that. It’s priceless!
Of course while I’m here, I’ll give the link to my gofundme page. Check it out. Neither of us would want a person to give a cent they didn’t have to give, we also want everyone to know that no amount is too small. Here it is:
I’m going to listen to some music and maybe watch some TV so I’m ending here and will hopefully be back sooner with the next post.
Until next time, take care,