Coney Island

Today was a great day. We went to Coney Island. Mom did well. We even got her on the paddle boats with us. (See video). She said she really enjoyed it. She wasn't able to ride any rides, but she enjoys watching the kids and we had plenty of snacks. Mom cracked me up. Her favorite snack for the day was a cherry slushy. It was really warm out.  I was glad she went.

Ocupational Therapy

Today was a quiet day, but a good one. Mom had Therapy again today. Leah knows that she enjoys baking, but can no longer do it on her own, so she helped mom bake some chocolate chip cookies. On the way home she told me she really had fun.

Appointment for Sleep

Today mom went to see her family doctor. The sleep study has been reviewed by the sleep center, OSU, and her doctor. They have agreed to try a drug called Trazodon. Its actually an anti-depressant, but is often used to assist with sleep. It may help with both.

Graduation Party

Mom and I went to her nieces house for her great nephew's graduation party. We had some good food. The best part was watching Mom spend time with her sister. They really enjoy each others company. I am going to have to get her up there more often.

Mom Pumping Iron

Today was another round of Physical Therapy. Mom started off by walking briskly on the treadmill. Then her therapist decided to step thinks up a bit. Mom had her first round of weight lifting. She used a number of nautilus machines that work various muscle groups in her legs. Stronger legs will equal better balance.

After mom's workout, she had Speech therapy. She was discharged last week for the swallowing portion of therapy, and she was told that June 30 she will be discharged from the speech side.

Bottom line is, She's not better but the insurance won't allow any more. I talked with the therapist and she said we can probably get it started again in about 6 months. I've paid close attention to the activities they have done, so we'll just continue to do them at home on our own. The therapist has already sent a lot of material home with us for "homework".

Vision Appointment

I made Mom an appointment with the Optometrist who specializes in patients with neurological issues. Her vision is the worst symptom of the PSP to date. Her vision has declined a great deal in the last 6 months.

Mom got some good news. Her eyes have changed a lot since her last visit. Without glasses her site is worse than it was before, but with a new prescription she should be able to see better than she could with the current set of glasses. And they will be able to incorporate the prism into the lenses instead of the stick on prism she has now. that alone will help. 

So we went to the showroom and mom picked out a really cute pair of glasses. In 2 weeks they should be ready. I can't wait and I know mom is excited too.

More therapy

Mom continues her physical therapy. She had a fill in today. The therapist was nice but Mom doesn't like when they change.

She had swallowing therapy today also. They discharged her saying she is better. This is the part I don't understand. This is a terminal progressive disease. The therapy is supposed to help her to slow down the decline. They always discharge her and I see little to no improvement. Mom agrees.

Fathers Day

We had a great day. Mom spent a good part of the day with the kids and I . My wife's father and stepmom came over in the afternoon for a cookout. Mom ate with us. Its probably the most time she spent out of her room for one day in a long time. After everyone left she watch Falling skies with me. Shes been talking about watching that since the commercials started.

Out to the Movies

Mom's been talking about the new Green Lantern Movie so we took her to see it today. She did really well. We had popcorn, pops, nachos. pretzels, and the works. Being the sci fi fan she is Mom loved the movie. Went home and had a good dinner. We got to spend a lot of time together today. It was a great day!!!!

Sleep Study Results

Another one of the possible symptoms of PSP is insomnia. the area of the brain the disease affects also controls sleep. Moms doctor had her spend the night at the hospital and have a sleep study performed. Today was the follow up appointment. So the doctor says she slept 4 hours for the night, which is exactly what mom had told them before the study. Then says there is nothing else wrong. He tells her he already discussed her case with her doctor and they think mom is depressed and she needs to take antidepressants. Mom was not happy with this comment in the least. Mom said "They didn't help before, so why would it help now", and I agree. I'm going to call the Neurologist at OSU on Monday. I have a feeling she will side with Mom. So for now, there is no real progress on helping Mom get some sleep.

Good news.

Mom's Physical Therapist did a progress evaluation today and to my surprise, Mom has improved in every area. Shes is still considered to have a considerable fall risk,but she has improved. I really thought that with this disease and its progressive nature that the therapy might postpone the inevitable decline, but I hadn't expected any improvement. We'll take any good news we can get.

June 15 2011

Today was a depressing day. mom had Occupational Therapy today. The therapist had mom work on brushing her teeth. I could tell mom was embarrassed practicing something so simple. (simple to people who have control of their bodies). I stopped to get Mom a salad for lunch, that she had been talking about. After lunch she put her PJ's back on and laid in bed for the rest of the day. I tried to get her to do something, but she just didn't want to. I finally got her to come out and eat dinner with us, but as soon as she finished dinner she went back in her room. It's day like these that make me question my ability to provide Mom with ample care and activities.

Movie Night

Today was a good day. Mom seamed to be in good spirits.  She and I took a long walk. The weather was as close to perfect as possible. We always engage in a good conversation on our walks. We had a good dinner thanks to my wife,and Mom actually ate at the table with us. She tries to avoid eating with anyone because she is embarrassed by the way she eats. She may drop a few things hear and there and coughs a lot. She makes it a bigger deal than it should be. I was just glad to see her not eat alone.

Later we popped some popcorn, with extra butter of course, kicked on the big plasma TV, and the surround sound, and watched a movie (Battle Los Angeles). Mom said she really enjoyed it. She loves SciFi. Must be where I get it. I wish I could make all our days as nice.

Call from A friend

Mom's best friend, who is retired and moved to Florida a few years ago, called me. She was concerned about Mom. She called to talk and had a very hard time understanding her. It is becoming increasingly difficult to understand mom's speech as the paralysis sets in. She has to really concentrate to not slur and get good volume.

I talk to her when I got home. She was so excited to hear from her friend.

Quiet Day

My son and I just went in to spend a little time with mom before she goes to bed and she was already in bed. I think she is tired after today. Mom had Physical Therapy and Speech Therapy today for 2 hours. PT was quit a workout compared to what she normally does. Speech also got her going today. Her Therapist focused on cognitive abilities today. She really struggles with this. Mom always tells me after therapy that she feels stupid. I try to tell her shes not stupid, her brain just wont let her find the answer. Its up there, but she just cant access it. It may be 4 hours later and Mom will blurt out something she couldn't remember in therapy. I hope she sleeps well.

Therapy Time

We are at Physical Therapy. In not sure that this does her any good besides exercise, but she seams to look forward to it and the Therapists is so nice. She is very good with Mom. I look forward to it because it is so hard to find stuff mom can do.

First blog

Well this is my first blog. I wanted to start this blog to provide myself an outlet, and hopefully provide a platform for others to learn from my many mistakes while dealing with this horrible disease that is slowly stealing my mother from me. I fear the first half of our journey is already completed, but only time will tell.