Echo...Echo...Echo...

I'm sure you've all heard about this cute little disc by Amazon (yeah, Amazon needed another money-maker), called the Echo Dot. While it is a creative new gadget, I didn't think it was much more than a fad or gimmick that would be of little use to us. I was wrong!

This thing has been a huge help to Jamey! Even though his words are not perfect, and he takes a little time to get to a question out, Echo is a great little service "animal". She adapts herself to the way he speaks and is able to accommodate him quite nicely! You can call her Alexa, Amazon, or Echo. Since syllables are a little challenging for Jamey, we set the device to answer to just Echo. Much easier for a stutterer!

During the course of the day, I can hear Jamey ask Echo a multitude of questions; What's the weather, can you play my playlist, What is my schedule today, What time does the movie start, What is the football/baseball/basketball schedule on TV? These are things for which he would normally have to use his keyboard (a difficult task for him), or ask me, and then promptly forget. Having answers at his tongue-tip is great, and Echo doesn't get upset if he has to ask her the same thing several times a day! If Jamey uses the last of an item in the house, he can tell Echo to add that item to the grocery list. It saves him trying to move a pen across paper, and when I get ready to do the shopping, I ask Echo what is on his list and add it to main list. Awesome!!

I think the best thing about Echo is her ability to keep Jamey's doctor schedule. Because of the short-term memory loss from the Parkinson's, he needs to be reminded several times a day if he has an appointment. Echo easily lets him know what's going on. She also alerts him when he needs to take his medication. She's a smart little cookie (maybe that's why she's shaped like one!). 😄

Jamey loves to learn, and Echo can tell him anything he wants to know...she pulls info from the internet faster than we can. And she has far more abilities we don't even use. But for now, I am impressed at what she can do to alleviate some of the stress of caregiving and disease. Although, I do get a little jealous that he talks to her more than me. LOL  I think this is a worthwhile thing to have in your arsenal of helper-items, and it is affordable for most everyone.

This has been an eye-opener, though. It turns out she's a better caregiver than I am--she'll even read him a bedtime story if he asks!

A Lot Has Happened!

Forgive the lapse in blog posting! We've had a lot of changes since we last talked!
Hopefully I'm back for awhile.

Moving households is difficult enough for people our age, but throw Parkinson's and stroke issues into the mix and you've got yourself a challenging situation, at best. In addition to the move (just 18 months ago), our oldest daughter got married and our youngest daughter and her husband brought us our first grandchild! All of this amidst constant construction to set up the mobile home for a power chair! Needless to say, it has been a bit stressful.

Parkinson's symptoms become worse when a stressful situation arises. Jamey has been quite the trooper, but we have seen the disease progress with this move. Now that construction is finally finished, and the place is set up well for him, we should not have to move again (barring unforeseen circumstances).

Because of the progression of the disease, we have had to purchase several new pieces of durable medical equipment.

INVACARE PORTABLE LIFT
Jamey cannot control his body well any longer. There are times when he cannot get off the bed or transfer from one chair to another. While he is in the power chair most of the time, he tries to get up and move when he feels he can. Unfortunately, that doesn't always work out the way he'd like. Sometimes he gets stuck. I'm not able to lift him any longer, so we invested in a portable lift. We looked into the Hoyer Lifts, but they do not currently make one that rolls well on carpeting, so we ended up with an Invacare lift (all his power chairs have been Invacare). At night, the sling comes off and we position the lift over the bed so that Jamey can grab the trapeze in the night to help reposition himself without waking me every time. It has been a huge help! It's also very quiet. I rarely hear it when he moves it up or down in the wee hours of the morning.

The lift came with a basic sling and there are many others you can buy. There is one with a hole in the bottom for toileting, one that reclines more, and one that sits the patient upright. There is also a sling for standing if that is required.

EZ-LOCK SYSTEM IN VAN
As I said, transferring is more difficult now, as is my ability to help move him. So, we had an EZ-Lock system installed in the mobility van. It's a V-shaped brace that attaches to the floor of the van and is wired into the dash. They also install a bar to the bottom of the power chair. When Jamey drives the chair into the van, he positions his footrest over the V and continues forward. The system grabs his chair and locks it into place. We pull the seatbelt that is attached for the back passenger, across his body and snap it into place. He is perfectly secure to ride anywhere now. We do not need to transfer him in and out! Just be sure the chair you have is compatible with the EZ-lock system. Go online to www.EZlock.net. They have a listing of compatible wheelchairs. You'll be hard pressed to find one that ISN'T compatible, but of course, ours wasn't! We ended purchasing another chair, too. LOL

Mobility Works (they have stores all over the nation) did all of the van work. They are a wonderful group of people and they will work with you to find the best solution for your needs. We used them when we lived in Santa Clara for our first van. Now we have to go clear to Sacramento for service. But, it is worth it!

INVACARE PRONTO M-61 POWER CHAIR
The unfortunate thing I found when ordering this chair, is that there is nowhere to go and look at the chairs, try them out, etc. Our insurance wouldn't pay for the chair this time (new rules for Obamacare) so we didn't have the benefit of going through Kaiser or having his Neurologist suggest a chair). Everything is done online with these, so you never know what you're going to get!

Jamey's last power chair was the Invacare Pronto M-41. For the most part, he liked the chair. In particular, the joy-stick/propulsion system was easy for him to work. There were a few things I didn't like about that chair. The biggest issue for me was the sound it made when it clicked into gear. For some reason, since my stroke, I cannot tolerate certain sounds; that was one of those sounds! I researched at least 20 chairs: Golden Compass, Pride, Nutron, Bruno, Invacare, and more. We kept coming back to the Invacare because we've had such great luck with them. It has a very tight turning radius and the seat elevates so that Jamey can reach things on shelves and then go back down again. It allows him to be a little more independent. AND, they have fixed the sound issue on this new chair! Woo Hoo!

When researching, I asked Jamey what he MOST wanted in the new chair. He listed several things. Then, I measured his current chair so that we were sure to get something similar in size (and it would still go through the newly widened doors). I made a spread sheet of all the features (including sizes) of each chair and then we looked over the list and narrowed it further. After we had about 3 chairs in the running, we went to EZ-Lock's website and checked their compatibility list. Once we decided which chair, we placed a call to Spin Life (www.spinlife.com) and talked with a sales rep personally. Because we needed White Glove service, I didn't want to order online. As it is, we also needed to order accessories for the chair, too, so it worked out better to speak with someone personally. They were very helpful and the chair arrived within two weeks.


FRENCH DOORS AND RESIDENTIAL LIFTS
The only way in and out of the new mobile home (for Jamey) was through a very narrow laundry room door. It was not convenient, nor was it safe in an emergency. So we had two sets of French doors put in; one in the front, off the carport, and one in the back. We ordered two residential lifts so that he could get out easily, without my help. We also had a deck built off the back lift. When it isn't raining, he enjoys spending time out there.

The lifts are a must-have for independence. With a ramp, you are required to have 1 foot of ramp for every 1" of height. In other words, we would have had to have a 27 foot ramp to accommodate the height of our mobile home. That would have been ridiculous, turning back and forth on itself around the yard! LOL Plus, by doing a residential lift, we saved $200 for a permit. None needed for a lift! Our lifts were affordable at around $6,000 (one was used and refurbished so a little less). The model we chose is Mac's Lift PL-150. Works like a dream!

OTHER CONSTRUCTION
Here are some of the other things we've had done to help Jamey move around the house.

A) We opened up the master bath by taking out the door between the commode and the sink area, combining both sinks into one and freeing up the entire area against the back wall.

B) Widened all doorways to 32" (would like to have done 36" but not enough room in a mobile home)

C) Built island bar so Jamey's chair can slip under for eating.

D) Had patio built and extended from lift area so he can go from back lift all the way out to the front of the mobile.

E) Cleared out several walls to achieve a more open floorplan to accommodate power chair.

Well, as you can see, there has been a lot to take in. But, I think we're getting settled and it's so nice to have a guest room where the kids (and now, grandkids) can come visit!