Archive for July, 2008

We went to a new GP last week and he seemed to be pretty good. A bit old, but he appeared to be up on everything with Lewy Body and completely agreed that Dad was being over-medicated. In fact, he was absolutely shocked to see the number of drugs Dad was on. So, he’s starting to slowly ween Dad off of some of the medicines he doesn’t need. However, the more neurological/psych type drugs, he wants to let the neurologist deal with, which, I agree. The doctor spent quite a while with us and took his time to go over everything and discuss things with my mom. He ordered some blood work and a swallowing test since Dad is having so much difficulty eating and swallowing. Hopefully we’ll see what’s going on and help Dad get back to eating normally and gaining some weight. He’s looking awfully skinny these days and feeling so fatigued and lethargic. We just want him to get back to some sort of a normal resemblance of his old life.

We have an appointment with the neurologist in August, so hopefully we can go over a lot of issues and get some more unnecessary drugs removed from Dad’s system. We’re also considering adding the drug, Namenda, to see if that helps improve Dad’s daily functioning. I know he’s already over-medicated, but, this new drug could possibly improve his quality of life. We’ll discuss with the neurologist in a few weeks.


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If you’ve read my previous post, Things Are Slowly Seeming Better, you’d know that Dad seemed to be improving. We were slowly weening him off of a “bad” medicine and it appeared to really make a difference in Dad’s behaviour and overall well-being.

Well, lately, Dad hasn’t been doing too well. He’s barely eating anything and his involvement in daily activities like getting the mail, taking Puppy for a walk, conversing with the family, etc., have tapered off. I think he still has his cognitive function but he’s having severe trouble with swallowing, and muscle control of his tongue and chattering teeth thus preventing him from being able to talk, chew and swallow. I can tell he really tries and I can see the frustration in his eyes. He wants to be able to speak correctly, communicate with his family and be active, but, he just can’t do it.

Whenever he eats and drinks, he makes these awful, painful looking faces. It hurts the family to see him like this and we are very concerned with Dad’s weight loss. He has maybe one or two bites of food at each meal and then he’s done. Sometimes he’ll even pretend to be asleep so he doesn’t have to eat. We don’t force him and just go with the flow and try to find other ways to provide him with nourishment. Even with liquids, it’s like torture for him. We give him Ensure, water, and fruit smoothies but even still, he doesn’t want to drink them. He used to LOVE ice cream and now he doesn’t want anything to have to do with it. It’s like there’s this fear that has taken over him and he thinks if he eats or drinks anything he’ll choke and die.

We’re seeing a new geriatric doctor tomorrow so hopefully he’ll be well versed with Lewy Body Dementia and able to get Dad back on track. We want to get Dad off some of his medication as he’s way over-medicated and possibly try a new drug. We also think Dad needs speech therapy and possibly a special diet plan until we can figure out his muscle control issues with his mouth. It’s tough trying to find good doctors and even harder getting Dad on the right meds. We have our fingers crossed for tomorrow.

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Every Monday, Wednesday and Friday, Dad works out at the gym. I think he likes going more for just being able to get out of the house and partly because he likes routine but I’m sure he also likes the exercise. Every time we go, he does 15 minutes on the sit down bike and then he does about 20 minutes worth of weights- some arms and some legs- in reps of three. And of course, he always has to have his iPod on which I think helps get him going.

Dad does pretty well considering his age and illness. In fact, sometimes he probably pushes himself a little too much but he likes working out and sticking to his gym regiment. Dad needs to exercise. It’s good for his overall mental and physical health. If he misses a gym day, he gets pretty upset and it usually sets him back- thus resulting in a “bad day.”  Even when he starts out as “bad” on a gym day, he’ll still want to go to the gym and afterwards, he seems a little better and more alert. 

Another benefit of the gym is that working out helps ease his rigidity issues. I believe from all the medicine he’s on it has caused him to become severly tense and rigid- and, partly from his Parkinsonism symptoms. Maybe it’s just me, but I think exercising aids him in regaining some of his muscle control and coordination. I truly believe, overall, working out helps him maintain his mobility and keeps him strong.

So, for as long as he can, we’ll keep taking Dad to the gym three times a week. It can only help and right now, every little bit helps.

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Dad made a new “friend” today. He was an elderly gentleman by the name of Mike and they met at the gym. Dad was wearing a Boston Red Sox shirt so that struck up a conversation since they both lived in the Boston area for many years.
I have to admit, at first, I was a little apprehensive about Dad chatting with Mike. Unfortunately, with LBD, Dad is not much of a talker these days. He doesn’t always make eye contact, his speech is sometimes hard to understand and his words are often twisted around. So, when Mike started talking to Dad, my body tensed and I thought to myself, “oh man, Dad isn’t going to be able to talk and this guy is going to think he’s being rude or is a weirdo.” However, it ended up not being as bad as I thought it would be. Dad’s trouble with his speech did not deter the friendly gentleman from chatting and I really appreciated it. (Sometimes you never know what people’s reactions are going to be so I’m always a little leery.) I would help every now and then in the conversation and prod Dad to talk about things he was familiar with- work, Boston, working out, etc.
After we left the gym, Dad kept asking me about the conversation and telling me his new friend’s name. I think it made Dad happy to have chatted with the fellow, and, in return that made me happy. Before LBD, Dad always made friends with anyone and everyone. He was such a friendly, smart guy- he could strike up a conversation with anyone about anything. These days, that ability is basically gone, but even if for just a few minutes, it was nice to see Dad chatting it up again. 

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That’s Boston speak for Sister is in the house… woot, woot!

Yesterday, Sister arrived from New York City to spend the rest of the summer with us. Dad is so happy to have her here… and so is Mom. Dad anxiously awaited her arrival and counted down the hours until her plane arrived. It was great to see him excited. He kept repeating how nice it was to have the whole family together again. 

We picked up Sister from the airport and headed to Islands for some dinner. He amazingly ate almost everything on his plate. He hasn’t been eating much these days so it was quite refreshing to see he had his appetite back… even if it was just for one meal.

Now that Sister is here, hopefully we’ll all have a great summer, filled with loving memories and good times, together.

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I hope everyone had a very happy 4th of July weekend.

For the holiday, we all decided to get away for a few days… even Puppy. We loaded up the car on Thursday and hit the open road for Arizona. Dad has always loved Arizona. Since I was four years old, my family has taken yearly vacations to the Grand Canyon state. In fact, Mom, Dad and Sister just went in April so Dad was only too pleased to hear he would be heading back there. Husband and I are considering Arizona as a possible place to settle down and for that matter, so are Mom and Dad. There are definitely more, and, perhaps better options for doctors and medical care in the Phoenix area than there are here. For Mom and Dad, it makes sense that moving there is an option… so is Boston.

Our trip to Arizona wasn’t exactly a relaxing vacation but more of a house hunting mission. We found some options for Mom and Dad and even Husband and I found a few possibilities. Although, I think we could get more for our money back in New England but that’s a different story for another time. Anyway, Dad seemed to enjoy looking at the homes and was eager to show us some of his favorites from his last trip.

Overall, I think it was good for Dad to get away… even if he wasn’t always doing well. It was pretty hot there and perhaps the weather played a small role in zapping some of his energy… or, perhaps he was just “off.” I thought Dad might react really well to going away, as we were going to one of his favorite places and he seems to do better when he’s stimulated by his environment, but he was just so-so. Maybe I was just being the hopeless optimist and wanting my Dad to spring back to his old self but as it is with disease I have no control and neither does dear Dad. I’m still glad we went away. He was happy and we did have some good times. He even went for a swim in the hotel pool and loved that he was still able to swim. He even seemed a little like his old self after the dip in the pool.

Now we’re back at home and Dad is awfully tired and a bit agitated today. He’s been sleeping most of the day but it’s okay… I think he’s a bit worn out from our trip.

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