We are SO grateful for all of the people who have been reaching out to us. We have been encouraged, inspired, supported and prayed for by so many. The support is hard to comprehend. Thank you!
– The other day, Tim pointed out to me the ways that God is truly providing for us. Ever since our move from San Antonio, TX to our home state of PA (August 2012) we have really struggled, in many ways, but the biggest one was financially. Even though this is a VERY terrible situation, God has proven time and time again that we are in the palm of His hand. Because of the outreach that our families have invested into finding us help, our bills have been paid for, and we have much more to look forward to, which we didn’t have before.
The VA has been giving us support and aide from every direction. Many people have told us to utilize the VA every chance we get because they have a lot to offer. This is so true, and I would hate to face this trial without having them to fall back on.
Tim has been receiving many tools to use to aid him in getting through each day.
We started with a cane (*ahem * walking stick) that was gifted to him from a friend from our local coffee shop. As we attended different appointments and met with more and more people, they recognized that the cane was a bit too short for him. Since then we got one from the VA that is molded to fit his hand (ergonomic grip), plus two more (one has the quad foot) received as gifts.
At the ALS clinic in Pittsburgh, Tim came home with an extra long shoe horn, button hook/zipper pull, shower chair, and hand-molded cane. He definitely struggles with getting dressed in the morning so the first two are self explanatory. The shower chair is QUITE a pain in our tiny bathroom. It is a bench that two of the legs are out of the tub, while two are in. We had to understand how to position and maneuver the shower curtain to not make a giant mess. GAH!
SPECIFIC to Tim’s case of ALS:: Tim has a severe foot drop in his right foot and a slight one in his left foot. A foot drop is simply his incapability to lift his toes off of the ground with his ankle. This has been the cause of many falls and accidents since his diagnosis. They have fitted him for a foot brace on his right foot and an insert for his shoe. This looks like a flat outline of the foot which fits into the shoe. The brace has a metal bar going up the back of his calf and velcros around his leg, just under his knee. Maybe I will get a picture up of it soon. After this one was ordered and fitted, they decided to fit the left foot too. It took a while to get either of them. The big pause button with this whole “assistance” device is that Tim cannot use them in his current shoes. He needed a new pair. But he couldn’t purchase new shoes until both of the braces were received and fitted. They would also need to make sure the right kind of shoe was being used. We had to order them through the VA- fancy and hip Velcro fasteners!- which we have yet to see. We have the right foot’s brace, but are unable to use it. I feel that when these are finally in the shoe and on his feet, there will be less falls.
We had a separate appointment with the OT (Occupational Therapy) through the VA who explained the Dolomite walker to Tim, which we then took home with us. This is a walker that has a small seat for when he needs to take a break from walking (and a fun basket to carry things). It also has breaks and locks in place. Pretty fancy. Our only complaint is that it doesn’t really get smaller when not in use. However, Tim has been utilizing this much more recently.
At this same visit, we received arm crutches. These are a bit trickier and harder to get used to. We only break these out when we feel they are definitely needed.
We got a raised toilet seat and handlebars so he can get up easier from the toilet. We have not set these up yet since our apartment is tiny and the bathroom doesn’t have enough room for them. We are hoping and planning on moving to a bigger place (*crossing fingers* a house) soon, where we will finally put some of these items to use.
We also ordered several other things. They had a thick book-like magazine for us to look through. If anything seemed like it would help, we simply said so, and they put in an order to have it mailed to us. We ordered 4 “16 in handle bars and 2 “18 in handle bars- Tim has a hard time getting up steps and through doors. Our apartment has two steps to get in through the front door and two more steps up into both of the bedrooms. One of them is to be used as a grab-bar to get into the tub. Fork and spoon arm wraps- These are pretty interesting and not quite what I expected. They are a simple fork and spoon attached to a big Styrofoam tubing with a wire that he can wrap around his forearm to hold his utensils while he eats. THAT will take some getting used to. Knife rocker– this fits around his fingers so he can make a fist and rock the knife back and forth to cut through food. Light, key and door knob extenders- These simply make those small and hard to grasp items a bit more accessible to Tim. Back brace/support– We actually have not yet received this, but we are hoping that it will help Tim out of seated positions, since this is a big struggle. At the ALS clinic in Bloomsburg, they also told us about a cushion that will give him a boost when he goes to get up. We are eager to hear more about this.
Most recently, Tim was consulted, fitted for and test drove a motorized chair. In the past two weeks, all of this has gone down… in the Altoona VA. He chose the color blue. It has a joystick for moving around. They said it can eventually be controlled by head tilting and motions and even mouth controls, when that time comes. This chair also can lift him rather high. He can be raised to get things out of our freezer (which sits on top of the fridge). So that feat will be neat and fun to witness. I actually did not go to ANY of the motorized chair appointments because I had appointments of my own in Lock Haven. Our good friend, Roy, from the local VFW was able to drive him the 1.5 hours to Altoona for all three appointments. (I am SO grateful for the break in driving and some time to myself… with Grove.)
The next big issue is transporting the motorized chair (and back when it was just the walker- AND Grove’s stroller) in our two small sedans. The VA is helping us purchase a handicap accessible vehicle! There is even talk of someone gifting us with one from my hometown. Either way, it is a big weight off of our shoulders when it comes to worrying about how to finance it. I would REALLY prefer to not have it be a mini-van, DESPITE everyone telling me that a van will be easier to convert and that the chair will take up less space in a van. It is possible for us to get another type of vehicle to transport it. Roy is working with us and is on my side against the mini-van, but I won’t fight it too hard, or at least I will try not to. If we get the mini-van, Tim can drive the chair right up into the middle and park it in one of the two middle seats. That way the trunk is completely open as well as the third row of seats. If it is another type of vehicle they install a lift onto the back which picks the chair up from behind and pulls it into the trunk, leaving some room for things to be packed around it. Another big plus is that if we get a vehicle that is not already handicapped equipped, the VA will pay for the installations.
It is possible that we will have the motorized chair in as soon as 10 days. We doubt a vehicle will pull through by that point and so quickly. Roy says that they do have a way to transport it back to LH for us. They will also install a ramp to go into our apartment. Which poses our next hurdle to jump. Our place of residence is TINY, and Tim won’t be able to do donuts or anything crazy in it. He can maneuver a few feet. Thankfully, he is not in the state where he NEEDS the chair yet. He still walks around the apartment by holding on to walls and ledges. The next big step is moving into a bigger place that is handicap accessible. The VA will provide us with a grant to purchase a home or place of residence and a capped amount to do any handicap renovations. We are truly blessed and sincerely grateful for all of the aide we are receiving.
Now, a bit off of the topics that have been talked about is the assistance around the house and with every day obstacles. When Tim was first diagnosed, we were introduced to the “Caregiver” program through the VA. This would allot a monthly income given to me in order to take care of Tim’s needs. This was something that really excited us because ever since we moved back to PA I have been painstakingly searching for employment and had very little luck. Of course, I was pregnant and began life with a newborn during this time as well. But this would mean that I would not have to go and find work out of the home, which is a huge blessing with a husband who’s health is decreasing and a one year old son. When we looked further into it they said we were ineligible because- get this!- “Tim’s disability is not an injury that was brought on during his military time BUT an illness”!!! FOR REALSIES! So we were a bit bummed at this news. However, reading the fine print of the program, we found that any “neurological disorder” is automatic qualification. We didn’t want to fight back the people who told us “no” so we sent our VFW representative and Tim’s PCP through the VA to bother them about it. It went through! We are officially qualified and will get that ball rolling soon.
Tim feels that I am taking on too much and there are times when I do lose my cool. Having a one-year-old in a small apartment where everything is in easy access to him (our son) does not help my sanity. So Tim does hope to get some more aide into the house to help take some of the burden off of my shoulders. A friend of ours pointed out that I still need to stand in my role as his wife and not solely his nurse. We have someone in mind and a program that we hope to look into to help us fund this person.
Maybe some people view these financial assistances and aides as something that we should not share, but I want everyone to know what our expenses actually are and to understand where we are getting the help we need and what we are still struggling with. I feel that it is important to keep those who are sincerely concerned or interested in the loop.
It may seem that we are being well taken care of. We, of course, have not seen all of the promises in action, but we are hopeful.
Some BIG answers to prayer: Practically ALL of this is dependent on Tim getting 100% disability through the VA, which has not happened since January. We heard the rumors that it could take up to 6-12 months for it to go through. With our past experiences with the VA, this didn’t sound too far fetched. If there is any neurological injuries or illnesses during or seven years after active duty in the military, they are automatically bumped to 100% disability. There was a hiccup with this. As we’ve been told, they had Tim’s claim going through under “motor neuron disease”, which IS what ALS is, but for some reason, under that title, the claim cannot be expedited. We got the news, yesterday, that it was changed to ALS and will be immediately changed to 100% disability! So to reiterate our excitement, we have been waiting close to 6 months for this claim to go through and we got a call and it is done right then and there! PRAISE GOD!
thedobosadventure 