Sunday, March 31, 2019

Upgrading My Life

I am literally shaking as I am writing this. I just spent more than ten minutes trying to remember how to get to my blog site to write a new entry. I kept going over Facebook, every which way, trying to remember. It took me that long to realize it wasn't on Facebook, that it was a separate app.

I am hoping that this is due to the fact that I finally gave up my 20-year-old Motorola flip phone. Yes, I have joined at least the 20th century, maybe even the early 21st, that is if I ever figure out how to use it.  I told them I needed a dumb phone, not a smart phone, or at least a smart phone designed for dumb people. So far, I have learned how to make calls, send and receive messages (kind of, and I can't figure out how to delete them). 

Hopefully, because my brain is sort of fried from the phone since yesterday afternoon when I picked it up, that is why I am so confused today. Oh, and I must have kind of figured out Facebook on the phone, because I somehow loaded it three times!  I am going to have to stay at the AFTD Conference in LA for an extra day so my daughter can straighten it out and maybe, just maybe, teach me how do work it. I have it on "Easy Mode" but even that seems to be beyond my abilities. Damned FTD!!!

I am faced with making another decision to make a leap. We have an area rug in our family room which is an extension of our kitchen. I have those rubberized pads under it to keep it down, but that is no longer enough. I have been tripping over it and falling a few times a week. You would have been amazed a couple days ago. I was getting several things out of the refrigerator and then stepped back, tripping on the edge of the rug. I don't know how I did it, but I twisted enough to land on my butt and did not spill or drop a single thing! That year of gymnastics I took 62 years ago finally paid off. Right, keep telling yourself that, Cindy! I was lucky, because I did whack my head on a small sofa and had a heck of a neck and headache for a couple days, but it is fine now.

The leap I am talking about is about what to do about the flooring. I have come up with so many possibilities that I can hardly think about it anymore. It's not easy since it is really two rooms totally connected as though it was one. I guess I will have to break down and have a flooring sales person come out and see what all is possible. Either that, or just glue the area rug to the floor. That sounds like a solution for an FTD mind.

The increase in the number of falls has not been limited to the area rug. I have difficulty with any small difference in the walking surface. What I am talking about are things like a 1" doorstep or a small height variation in the sidewalk or any surface. You would think ramps would be a good solution, but those are often even worse for me. If all ramps were built with a constant degree of incline it would most likely be fine. Unfortunately though, nearly every ramp has occasional adjustment in angle. I cannot see or sense those changes and it ends up like the edge of the area rug. I don't see it, so my brain and feet do not know to adjust and I trip and/or fall. 

Until recently, most of my falls were on stairs. Once I had a stair lift chair installed, the falls were greatly reduced. It bothers me greatly that my deteriorating brain has now found other ways to trip me up.

It is not unusual for me to trip over something and fall, then get back up and trip over the exact same thing and fall again because I had no clue what I had tripped over. It is actually comical, yet frustrating, to me that when people observe me fall the first time, they run to me and offer to help and are quite sympathetic. Then, when I fall the second time, they turn their backs and walk away, mumbling things like I am an idiot or that I am a drunk.

It is frustrating because, in addition to using the stairlift, when I started using a cane, it helped immensely. I hate to think that I am going to need to take it a step further with a better walking aid. As many times as I have recommended to others that it is time to switch to a walker, I have a lot of resistance to that option for myself. Then again, it took me over 30 years to upgrade my phone. The sales people were amazed it still worked!

I do still see my geriatric/dementia psychologist once a month. I think maybe it is time to discuss this with her so she can get help me over the resistance I have to a walker. I really, really, don't know what I would do without this woman. I wish everyone with FTD could find a therapist like her.

On a much more positive note. The AFTD's Educational Conference is scheduled for Friday, May 3rd, in Los Angeles. It is not too late to register. For more information, please visit the AFTD's website, www.theAFTD.org.  

This will be the fourth conference I have attended. As soon as it is over, I will be looking forward to the next. There is a lot to learn at the conference. They bring in many experts who present all the latest information available on the disease and research going on, as well as ways to live with FTD. Just as importantly, at least to me, is the opportunity to meet with so many other people who have FTD and caregivers as well. It also turns out that some of us with FTD really know how to party!  

Don't tell anyone, but it is a month away and I have already started packing!


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Rose said...

Sorry you are having such difficulty remaining on your feet, Cindy. Me too. Non FTD related for me, but the darned floors are just as hard!

I’m seeing my neurologist later this month. Maybe she can help me and your therapist can be of great assistance to you. Here’s hoping.

Thanks for sharing, and I’m really glad you found your blog. I’ve been thinking of you.

Sheryl Whitman said...

Cindy, you are talking about me too. I have the same problems that you describe. If it is a walker you need, I hope your therapist can help you get past the resistance. I love you!

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