Sunday, September 28, 2014

Lumosity!

I did not intend to endorse specific products on this blog, but I am going to make an exception.  I had seen Lumosity advertised on tv and in magazines.  Then, about three weeks ago, it was there on my Facebook page and it offered a free trial.  I tried it a couple times and thought it was interesting and could see how it was exercising different parts of the brain.  After checking the pricing and terms, I let it sit for a few days.  Then they sent me an email offering 20% off all the options of length of commitment.  I went ahead and purchased it for a year.  The cost was around $50.  (One thing to mention, their normal contract automatically renews when the term expires.  However, as soon as you sign up, you can go to "Account Settings" by clicking on your name.  There, you can opt out of the automatic renewal so that you can decide for yourself each time.  That's what I did.)

I started using it every day.  It only takes about 15-20 minutes each day.  Some of the "games" are kind of fun and I can actually tell my brain is being challenged each time.  The "games" progress at your own level.  I have found it very interesting how I am pretty good at some of them, and down right lousy at others, that's how I can tell that they are using different parts of my brain.

I don't believe they are marketing it especially for dementia patients, more for everyone to keep their brains sharp.  However, I really believe it is worthwhile to try.  I actually enjoy it and don't plan on stopping.  I would recommend checking it out for yourself and see if you think it might help you or the person for whom  you are the caretaker.  Exercising can only help the brain in my opinion. Their website is www.lumosity.com

Sunday, September 21, 2014

I Am NOT Invincible, I Just Think I Am

Did you know that Frontotemporal Dementia can cause loss of balance and loss of stability when walking or moving?  Neither did I.  I knew I was experiencing these issues, but since I have always been a little bit of a klutz, I figured it was just getting worse as I got older.  The last time I was evaluated, it was explained to me that is definitely part of my FTD.  It was a relief, but also downright scary, not knowing how much worse it would get.  I am, so far, successfully dealing with it with a few modifications to my life and my self-image.  I make sure I hang on to my husband's hand or arm when walking, as well as my sister when I am with her.  When shopping, I hold onto the cart.  When walking around our property, especially on the uneven parts, I use a walking stick that my dad had made for my grandfather many years ago.  I love that stick, so I'm okay with that but sure not mentally ready to accept a cane.

I have always been stubbornly independent.  If anyone else could do it, I could do just as well or better.  My dad made sure I knew how to do basic house repairs, how to change the oil in my car and many other things.  My husband worked very long hours, often six or seven days a week.  I happily took over doing things that needed to be done... plumbing repairs, simple electrical repairs and was willing to try just about anything.

Problem is, I still think I can. We are having new block retaining walls installed, so I thought it would look good to spruce up the wooden stairs leading up to our deck by painting them with the new Super Deck paint (great stuff, by the way). Being the independent cuss I am, I declined my husband's assistance.  The steps go up an ivy-covered bank, so to get to the sides, I managed it just fine by staying seated on the bank, keeping my weight on the ground as I scooted down the hill.  I was pretty proud of myself!  Once I was done with the sides and the handrails, all that was left was doing the stair treads... should have been the easy part.  Not for me!  A third of the way down, I needed to go to the bottom to fill my paint container from the gallon can.  I thought I had been pretty smart not tamping down the lid on the can so it would be easier to open when I needed more.  It was.  Only problem, walking down the stairs without being able to grab onto the side rail was a mistake.  I fell down a couple steps, kicking the gallon of paint and succeeding only in painting the driveway a beautiful color, embarrassing myself in front of the wonderful guys who are building the walls and making my body all kinds of stiff and sore.  No real damage done... the driveway is scheduled to be seal-coated which will cover the paint spill, the men came over and helped me up and to rescue as much of the paint as we could so that there was enough to finish the job.   The difficult part was swallowing a little bit of my pride and admitting that I am, indeed, NOT invincible.

Sunday, September 14, 2014

I Have Dementia, But I'm Not Stupid!

This has been a very mixed week.  A lot of things went really well, but others not so much.  I had a couple incidences of people totally dismissing the idea that I have FTD.  As I have posted before, it is difficult for some people to recognize that someone with FTD has dementia.  Just because I can have an intelligent conversation one day, please do not decide that there is nothing wrong with me or imply that I am lazy and should still be working.  Believe me, there are other days when I stumble all over a conversation because I can't think of the right words.  Plus there are many other problems that are not so evident when you see or speak to an FTD sufferer on a limited basis.  We are also good at covering it up so that we don't feel embarrassed.  FTD truly is a disability and I would give most anything to have my abilities back again.  I guess you can probably tell by reading this that someone hurt me deeply this week.  Fortunately, enough positive things happened this week, things that I was proud of myself for being able to succeed in doing, to make up for the bad stuff.

Another frustration that kept cropping up this week is when people block me out when I am talking.  I am guessing it is because they don't think I have anything worth listening to.  Yes, we can tell when you aren't really listening!  Also, if we don't agree on something, please don't assume I am the one who is wrong just because I have FTD.  Please, caregivers, we may take longer to tell you something but that doesn't mean we are stupid!  It makes me so angry when I have just said something within the past couple minutes, then someone asks me a question which makes it clear they were not listening to me because the answer was clearly in what I just said.  Or, when it's one of those days when the words aren't coming and I am speaking slowly, please don't jump in and finish what you think I'm about to say.  Please, just listen to me.

On the other hand, we who suffer from FTD can also make more of an effort to make sure we are being heard.  I am trying to do things such as asking a question to make sure I have been understood or being sure that the person I am speaking to maintains eye contact.  Other times, I just quit talking or walk away.  Probably not the best way to handle the situation, but it's better than trying to remain in the conversation and becoming angry.

My therapist is working with me to get me to, after I calm down, explain to the person what they did and how it made me feel or why I reacted the way I did.  Of course I wouldn't do that with social acquaintances, just with my close circle who act as my caregivers.  I am so very fortunate to have found a therapist who specializes in dementia patients.  I have been seeing her every two weeks for about two months now, and it has really made a difference.  I am sure there are many other therapists out there who specialize in this area as well, but I am so very happy that I am lucky enough to have one in our little town.

Saturday, September 6, 2014

Just Breathe

My daughter and I  used to work in the same office.  When she would see me getting stressed, she would tell me "just breathe."  It usually worked.  First reason is that sometimes when I am stressed I forget to take deep breaths and a deep breath does tend to relax a person.  Second reason, she was letting me know she cared.  The other thing she would do is say "Moo!"  She claims it is impossible to not smile or laugh when someone says that to you.  Try it, it usually works!

This came to mind yesterday when a friend posted one of those poster-type thingees (and, yes, that is the technical term) on Facebook.  It was a quote by someone named Mandy Hale:  "You don't always need a plan.  Sometimes you just need to breathe, trust, let go, and see what happens."

That covers most of my days.  I have read that it is good for FTD patients to try to stay on a schedule.  I try, but something often messes it up... usually me.  My husband is the one who keeps me on track  most days and I call him the keeper of the calendar.  It truly helps to delegate that responsibility to someone you trust as it becomes once less thing to worry or get stressed about.  I am also very fortunate that a lot of the people in my lives understand me enough to accept "noonish" or "2:30ish" as a schedule since, even though they say I should try to stay on a schedule, that just doesn't work for me.

I have always been a "fixer" and have always been the one people are drawn to in order to help them solve problems.  I've been that person since I was a young child...  always the peacemaker in the family too.  After 61 years, I have finally discovered that I don't have to do that.  It's a good thing I realized it since I really don't have the energy needed for that anymore.  I need it all to, not so much heal myself, but help myself cope with the new problems that crop up with my FTD.  Perhaps I will make a sign for the front door, or a t-shirt for myself, saying "no energy leeches wanted!"  Don't be afraid to keep you energy for yourself!