Fred & George

Those are the names of Joseph's Lofstrand Crutches. They joined our family on June 5th, at the request of Joseph's Physical therapist who also happens to be our stake president.

Joseph working hard at his physical therapy appointment

1st Day with Fred & George

Practicing with Ken, Dr. Call... umm President Call?! 

They have been amazing, we just need to figure out how we want to paint or tape them so they double as white canes. It is important for people to know that he is visually impaired. We LOVE our stake president and the personal relationship we've been able to develop with him, he cycles with my dad and then spending much of our summer seeing him weekly in his office. 

The never-ending wheelchair saga

As you know we've been working of getting joseph his TiLite wheelchair most of the year.

When we finally got all of the paperwork in and the prescription written exactly 100% correctly, we had to wait. Wait a month for someone to come to the house to do another evaluation,and evaluation & measuring checking to make sure the he can indeed use a wheelchair. Which was supposed to be the final step in the long list of things we had to do in order for medicare to pay for the chair…nope that didn't happen.

Once everything went through we were ready to finalize the order when we were informed that we would have to pay 100% up front, the opposite of what we had been told the multiple times that we asked. The reason that we were going through the headache of all the paperwork and hoop jumping, was because we can't afford to pay for the pay on our own. Then Medicare decided that they no longer covered chairs coded k0009 only k0005, we scrambled to put together the paperwork for the correctly coded chair and then as we submitted that paperwork we were told that Medicare no longer covered TiLite chairs at all. 

So as Joseph's old chair deteriorated and our options for getting his chair were falling apart…we bought the 2nd choice chair at 1/4 the price. It's identical to the chair he wanted except that it's made of aluminum instead of titanium. And being that we didn't have the cash on hand we put it on the credit card. As delighted as I am that we got the chair FINALLY!!! I'm equally frustrated that after everything we went through to get the chair (paperwork, appointments, evaluations, prescription revisions & many many phone calls) we ended up simply buying it!

Oh, it doesn't end there…..just wait. We were preparing to travel to Idaho for Grandpa Oswald's funeral & his chair was supposed to arrive the same day. We decided we didn't want to wait until 3-5 pm. So we called UPS, got on with the supervisor, then the dispatcher, and the driver of the truck it was on and arranged a pick up in transit. I didn't know exactly where that location was, luckily my little sister did, so we hurriedly jumped into the car and sped off. We made it and met the driver and loaded up the box, it took up my entire rear seat!

We got it home and assembled it, meaning that we put the wheels and the brakes on.

Rylee tried out the pad first

Taking it out for a spin before we packed it into the trunk for our trip to Idaho.

More updates coming!

February 8th, 2013

We went to Hughes Physical Therapy in Kennewick to do Joseph's wheelchair evaluation.  This is just one of the steps we'll have to take to have medicare pay for most of the chair he wants. Joseph found this certain chair and he really wants it, I don't blame him. The chair he has now is starting to fall apart, it's still together only with TLC and the mechanic know-how of my sweet husband.

At first he was really resistant to the idea of having a wheelchair, but I jumped at the chance when a free one was offered to us. Initially a wheelchair seems really limiting and restraining, but now he sees a wheelchair as a liberator, he goes miles and miles on his chair outside on his own, he was able to do a 5k again, albeit a little differently than before. And it allows us to do so many things together, especially when we travel, this wheelchair is a door opener rather than a closer.

So this is the chair, it's made by Ti Lite, it's base weight is 12 lbs! (much better than his current chair which is about 40 lbs)  This has been our project lately, finding someone to do the evaluation and measuring and how to get all the info for billing etc.

So his chair will be blue and have handles, so he can be pushed. And wheelie wheels in back so he doesn't tip. We're both pretty excited but there are a few things to do: wheelchair evaluation, a prescription written for a "ultra light weight" wheelchair, dated within 45 days of the evaluation, a letter accompanying the evaluation stating exactly why he needs an ultra light weight chair (10-18lbs) as opposed to a light weight chair (24-38 lbs)  we have to have it worded perfectly and such. And then once the order is in to Spinlife, the company we are choosing to order through the doctor has to sign a copy of the order before all of that is sent to Medicare. Yea, I think that's all but I don't have the list with me. It's in the works, hopefully everything works out so Joseph can have the chair that he wants/ needs. 

Joseph's x-rays

Joseph has given me permission to share this information, because it's pretty obvious that something is going on. So we might as well put the correct information out there. 

If you look to the right side you can see a dot or fleck, 

this is the part that broke off of his fibula.

Another view.

Making sure everything else looks good. 

I think x-rays look awesome. 

Joseph will be going an Orthopedic Doctor tomorrow. 

He will evaluate the break and whether or not Joseph will need that little piece surgically removed. 

We'll have the real answers tomorrow.

So, until then.

Star wars marathon. 

A Story in Pictures

Best Buddies Ready to "roll"

"Hey, wait for me!"

 "Wait! I'm coming."

 I'll run circles around you, because  I am so excited!

 Joseph working his way uphill back home.

Jobs

Joseph had a job interview last week for a front desk position at an auto repair place. Please send prayers and positive thoughts his way. He was one if three people who interviewed for the job. We should find out soon if he got it or not. Shaylee's job has expanded!! Her boss asked her this summer if she would be interested in teaching a music class. Well that started last week, 2 classes with 3-4 yr olds, and 1 class of 5-6 yr olds. The class is called music for little Mozarts. She also has 30 piano students! On the first day of classes she had 26, (that was Aug. 29th). So things are looking up for Shaylee at work. We hope and pray that Joseph gets a job soon! He needs it, we need it. Pictures coming soon of Shaylee's studio makeover.

Boot Camp?

Yes, that's right.  Joseph will be attending a boot camp of seminars for the blind and visually impaired it's "an intensive 3 day workshop that will focus on many of the elements that make a job search successful.  It is designed to assist you in restarting, re-energizing, re-tooling your job search efforts." We signed Joseph on to do this in June and we were hoping that we would have to cancel because he would have a job but no he doesn't. 


We are being put up in the double tree hotel in downtown spokane, right near Riverfront Park. And our gas is being re-imbursed! Which is awesome because we have to borrow my parents Honda Pilot, it's the only car with AC, and we have to travel in the middle of the day. (We can usually plan our travels to miss the heat, but this is an exception, we didn't plan it, or our arrival time) So we will be spending more than usual on gas, but it's alright it still comes out to free. Joseph will have meal vouchers, for breakfast and dinner while we are there. We're frugal so we can probably make it work for the both of us. I will have to find my own lunches though because that meal is served at bootcamp  each day and I don't get to attend.


My plans involve walking around riverfront park, maybe a little of riverside drive, picture taking at both places, both are in walking distance from the hotel. Maybe check out the botanical gardens, lots of swimming in the outdoor pool, a little laying out in the sun. some movie watching in our room,  book reading, maybe a little shopping, we want to make a visit to see the Toths... but basically Joseph will be busy, I will be trying to keep busy and we'll still have time enough together to make this feel like an almost all-expenses paid vacation. 


We're really excited to go. See you later. 
Although I may update from there, we will have wifi.
Until then here are some flower pictures.

(This is the background on my iPod right now.)

catching up...

I feel so behind, it's May and my calender is still in March (the one in my room, I use my ipod mostly). So back to April, Joseph had an awesome April Fools Day. He was substituting for the 2 morning seminary classes that week. He went in dressed like this:

And yes, he did that without help! I was sick and sleepy so when he came in and got his goodbye kiss, I told him that he looked weird. Mission Accomplished, right? And since it was the day before General Conference he gave a test, what do you remember from last General Conference. Sis. Wright doesn't believe in giving tests for seminary but Joseph had this set up good, it was a double-sided test and on the front was a normal test and on the bottom of the back it said "April Fools!" in bold. Yea, he got them good. The best part is after he was finished teaching we went grocery shopping in WinCo and man, the looks he got were awesome. A real Aprils Fools Day success.

On the way out the door...

I wanted to share some good news. You know the interview that didn't happen?! Well we've still been in contact with the manager through Joseph's employment agency, and they are interested in hiring him! (starting with an intership possibly, I don't really know the details are yet to be hashed out) The manager is all for it but we can't go forward until the owners are back in town from spring break, which is perfect because here in a few minutes we will be on the road to Idaho, wahooo! So things are looking up finally, and we couldn't be more excited to see our Idaho family.

PS I have had a nasty cold which explains the lack of posts. I sure hope I am over the worst of it, I always get sick when I get time off work, darn it.

If you are family in Idaho see you soon, if you are here in Washington see you later, if you are elsewhere we'll be back. :)

NEWS!!

Joseph's resume' made it to a few dealerships around here, and one called him yesterday, asking him to come in and fill out an application. After the call, he called the employment agency, like he was asked to and they have since stepped in and helped with communication with the dealership so not only is he filling out an application but Joseph has an interview tomorrow after teaching seminary! He will be accompanied by one of the agents working his case (the main agent we talk to is also legally blind, thus he cannot take Joseph to his interview)

Happy thoughts and prayers please, he is a little a lot nervous.

** update: the manager was a little too busy for an interview today but the application is filled out and turned in, an interview to be scheduled soon I hope! **

Random Recent Events

• I sang second soprano in a trio for our wards Relief Society Birthday Dinner. It was awesome, if I do say so myself, I wish we had recorded it (audio only). Our voices blend really well, there may be an encore someday.. such plans are yet to be made.
• I got a new calling.......wait for it........ ward choir accompanist. yup. Which caused the secretary in our presidency (Primary) to have a little panic attack, until she realized I can do both of my callings.
• Joseph has his new glasses. He looks dashing as ever. And is seeing better with the new very strong prescription.
• Joseph has been working with an  employment agency in conjunction with DSB. We hope he finds work soon, he's sooo ready! He has filled out 1 application since starting with them. It is just a hard time of year to try to get hired on in the automotive field. (you know, getting the 2010's off the lot and thinning out the staff that was hired through the holidays.) We would like for him to use his degree, which is automotive technology management. Joseph is starting to get a little stir crazy as the weather is getting warmer.
• Joseph has been subbing for seminary, he is "on-call", and he does get paid when he teaches. In fact he is gone teaching right now, and will be every morning the rest of the week and one day again after spring break. I am so glad that he gets the opportunity to do that, and he really is a great teacher (nope not biased at all! ;) ).
• Pack meeting this month was on compassion, Joseph and I were asked to come and speak. He spoke about his MS: what it is, how long he has had it, how it affects him, and how it caused his blindness. He then talked about all the many skills he (and we) have learned this past year. We had each of the scout's names written in braille for the boy's to have and take home. We opened the discussion to questions , I helped but mostly let  Joseph do the talking. It was an interesting discussion that took place, very positive and also educating for us and for our audience; we got to see from a different perspective, which was kind of the theme for the night. I'm sure if asked  we would gladly do it, but a little better prepared now having gotten the first "guest speaker(s)" experience out of the way.
• I now have  37 38 students, so 6-8 students a night! Yeah I still can't believe it, but it is so wonderful. Enrollment closes for the "semester" at spring break. 

Joseph (10 facts)

1. I love to work on cars.

2. I like to draw Disney characters, especially Goofy.

3. I like to teach Seminary.

4. I've always disliked computers, but I have come to  like them because of my visual impairment. (s:His computer talks!)

5. My wife made me get a pedicure once, then the 2nd time she dared me to and I had my toenails painted blue. I like pedicures, but not painted toenails.

6. T-bone is my buddy. (S: our dog, Dad says when we move out we can take him too) Before I met the Swanger dogs I was NOT a fan of dogs at all. 

7. Cats are of the devil, but our puppy cat is alright.

8. I often play the piano, Shaylee would like me to learn how to play guitar with her.

9. Braille has opened ,y eyes to new possibilities, man I need to practice more.

10. I find it humorous how people stop talking and move out of the way when I come through with my white cane. Like if they stop talking they become invisible to me.

Another Day, another Doctor visit...

On Wednesday, the 23rd of February, we went to Joseph's new ophthalmologist (his last one retired). Same office though, we  LOVE them! The great thing about seeing a new doctor is that they re-diagnose (just like his neurologist did). He performed the same tests they did on his 1st visit in December of 2009. His nerves look about the same- white, damaged and constantly moving. The doctor said the nerve atrophy is consistent with the vision loss that Joseph is experiencing. The nystagmus (or shaking) is a result of MS. But the doctor was confused as to why the nerve atrophy and nystagmus happened at the same time-and so quickly, it's very unusual. He says that the nystagmus and nerve atrophy are not related. This is where I interjected MS as the cause, he agreed but added MS will usually affect one or the other not both.

He apologized that he can't do anything to improve the situation. we thought that he was a very very kind man - who felt like he was breaking bad news to a young couple (he was but it was basically the same news we got a  year ago). He felt so bad, sweet guy. He did give Joseph a new prescription he should be able to see 20/300 (on a good day). An improvement! There really isn't a better time than tax return season to buy new glasses with no insurance.

I felt a little demanding toward the end of Joseph's appointment- we asked the ophthalmologist to give us a letter stating his findings about Joseph's vision etc. (like the one we had from Dr Deitz,that we've used on countless occasions. We felt like we needed an updated letter from his current doctor) And when we went to pay I asked for documentation for the appointment, specifically the cost to us, to prove "spend down" for government insurance (post about that soon is inevitable). But they were great & we showered them with thanks. Seriously an awesome office and staff to work with (Columbia River Eye Center in Richland, if you were wondering) What a blessing.

Lucky Duck!

Joseph got his first pair of Vibram 5 finger shoes.

After a friends comment, 

Thanks Meagan!

I took him (and my Dad) to try them on at REI

Then after more research, 

we found that they really should help with balance and muscle tone.

A Godsend for Joseph.

I am a little jealous, I wanted a pair first.

But I will get a pair... eventually, I will have to order them in.

I had a feeling to go to REI yesterday,

they had his size in, (Eur 40).

He can already feel the difference.

He is already walking a little better.

I will get a picture of them on his feet..

 but these are the ones that he got:

His Eyes

The question we get most often... so what can Joseph see?

It's hard to believe that there these beautiful baby blues

Don't see much.

These are part of his field of vision test:

(Left and Right Respectively)

The black parts are where he cannot see, it's not black or white,

he says it's just blurred beyond comprehension.

Besides the blurred spots, his eyes are constantly shaking.

This is called Nystagmus (click for more info)

Definition of Blindness from the National Federation for the Blind (NFB)

The federal statute defines blindness as follows:

[T]he term "blindness" means central visual acuity of 20/200 or less in the better eye with the use of a correcting lens. An eye which is accompanied by a limitation in the fields of vision such that the widest diameter of the visual field subtends an angle no greater than 20 degrees shall be considered for purposes in this paragraph as having a central visual acuity of 20/200 or less.

In a letter from his Ophthalmologist Dr Deitz :

"[Joseph] has bilateral optic atrophy,

resulting in the best corrected vision of 20/400 in either eye."

Most of the time when asked, I say he is blind,

only when pressed further I will elaborate

on what he can and cannot see.

I hope this answers the question.

B-u-s-y

On March 16th

We went to Spokane.

Appointments (P.T. and Neurology) went well,

Joe is doing well.

Lost a little muscle tone- understandably so, he's not working.

But small improvements overall.

He does NOT need a support cane or stick,

using the white cane should be enough,

but he may need to learn to use it completely without sight.

Saw Sharon - Technology Counselor (DSB)

She's awesome. She's hilarious.

We learned a lot about how to make the computer accessible for Joseph again.

and programs and electronics that can be purchased for him.

He now has a talking watch, large number alarm clock,

talking calculator, and a digital voice recorder.

We will be starting Braille this week.

Another post coming soon.

*s

White Canes (clarification)

This is a "white cane", Joseph's is a little different though. I realized the term white cane can be confusing, so I will clarify. It is all white or white and red. Joseph has a white and red cane, it's called a cane but it more of a long stick, with a roller on the end, so it can be swung back and forth in front of the person using it. There are also support canes made all to look like white canes too. So when you see someone walking with a white or white & red cane (or stick if you will), it means they are legally blind- to fully blind. The cane swings out in front of them just a couple inches wider than shoulder width, so far people have understood when they've seen us around and moved out of the way when Joseph is out and about, using his white cane, which I appreciate.

** News flash** Joseph went walking today without Albert (trek pole) and just the white cane and he walked great!! Good balance, and walked really straight!! We will keep practicing.

Yet another update on Joseph

Sorry for the month-long absence, we've had a lot going on and very little time to write about it. In fact this should be the 1st of many updates.

Doctor

Joseph will see his neurologist on Tues (the 16th). He will have a physical therapy session first. During which they'll determine what kind of stick or cane will work well for him and get him started using a white cane. (and the normal physical therapy stuff).

White Cane

Why is Joseph goin to use a white cane? A white cane identifies his as legally blind, so it will or should make others aware that he can't see them. The cane will also help him find bumps, steps curbs etc, that he can't see, before he gets to them. He will learn his white cane skills without vision (using sleep shades and resisting the urge to look down) When he is good with a white cane he will be eligible for a guide dog.

OTC

The Department of Service for the Blind (DSB) has an Orientation Training Center (OTC) for those with vision loss ranging from visually impaired to totally blind. The OTC is in Seattle, we went there on Tues the 2nd. We had a guided tour of the facility and the apartments. We had a packet of info about the OTC before we came for the tour, but we had yet to make a decision about Joseph attending there. They have terms that are 5 weeks long with 1 to 2 week breaks, he would have to live in Seattle during term.

The OTC offers many classes: home EC, shop, computers, keyboarding, zoom text, jaws, orientation & mobility. braille etc, we saw all of the classrooms and met most of the teachers, who talked to us about their particular subject. It was a great facility and the tour was awesome. I was a silent follower for most part, and I left the decision about attending up to Joseph. He said that his mind says its wonderful, but it doesn't feel right. So he won't be attending there. He has opted to do the training at home.

** update (since I originally wrote this)**

Joseph's mobility counselor came over yesterday and he now has a white cane and has started training with it. We should be receiving our braille books here soon and possibly participating in a class via telephone through the OTC. And that is an exciting/scary thing because braille is supposed to be pretty darn hard to learn. - side note Steffi, (mobility counselor) has said that she was very impressed with Joe's ability to learn A,B &C in braille one day when he was introduced to it. She was equally impressed with his rhythm with a white cane, he won't struggle as much as some she has worked with... I may be an entirely different case!

P.S. His white cane is named Ernie, rightly so since his trekking pole is Albert...

nag nag nag...

You know when there is something that you just can't get off your mind,
and it nags,
and nags,
and nags until you do something??
Well I have some of those..
there are a lot of things I worry that Joseph is left out of
reading definitely (but he's never been much of a reader)
the biggest one lately is that he can't read his scriptures.
We listen to them on CD (thanks so much Joy)
but he has no real portable way to carry them,
or listen without help.
Until now...
that nagging in my head has (almost) gone away.
Joseph has an ipod.
a big one,
I am downloading all the scriptures in English from lds.org
and the Book of Mormon in Portuguese.
And the last general conference (or two or three.. whatever he wants)
and church magazines
and Jesus the Christ
all audio, mp3 files!!
We can add John Bytheway talks,
and other books we've acquired
and talks my mom downloaded for him a while ago.
And oh the music!!
(he has requested his brasilian pop for sure)
eek!

Now I can sleep!

*s*

Wait, what day is it?

Have you had one of those weeks?
We have.
When it feels like it should be Friday and it's only Monday?

or It feels like a Monday but it's Wednesday?

What through us so off is lack of sleep and anxiety over Joe's Appointments on Tuesday. They went so well! 1st was his Physical Therapy Appointment, we did it there in Spokane because they have a Multiple Sclerosis specializing Therapist there. And if she was to decide he needs weekly visits or something we would follow up locally. But she diagnosed Joe as a Spaz (his words not mine). Joe has Spasticity in his legs, it is what is making it hard for him to walk lately, especially after this last flare up. Basically it means that the muscles in his legs are tight and cause spasms and it can make the muscles feel stiff. Joe is in the middle in the scale they rate him, so not so good but not so bad either. (for more info go here) He has been given a list (with pictures) of stretches he needs to do at least twice a day, and he should try riding a bike too to loosen up those muscles (and Dad has already set him up a bike on the trainer and he is ready to go, after he did that they talked about really getting Joe ready for a cycling event or something?! boys!?)

Next was lunch of course, got to feed my boy... then the MRI. I love how close everything is, the MS Clinic it technically an extension of Holy Family Hospital in Spokane, and Inland Imaging is in the hospital itself. I really enjoyed the guy that helped Joe get ready for the MRI, he was young and has a great attitude for the kind of work he does (he had just met Dr Cooke that day!) After he was set we left him with a phone and walked around (otherwise I'd be going nuts waiting, it takes a while you know). Joe said the MRI went well (as well as you can expect being put into a tube of magnets that buzzes and bangs- you should hear his impression of it..lol)

Joe will be in to see Dr. Cooke again on Nov 30th (not soon enough, but soon enough, he's hard to get into) At that appointment we should be making the decisions on medications and getting then started ASAP!! And we will be so on top of that. He has waited long enough, but we do understand that the MRI had to come first and that because the previous Neurologist didn't give Dr Cooke the requested info (Grr..) Joe was re-diagnosed with MS, which sounds weird but it's good, they agree and Dr Cooke didn't need to see what another Dr had to say he did his own tests and came to *almost* the same conclusion.

What astounds me is how often we have heard Dr Cooke and staff ask why, why hasn't this been brought up before? Why didn't you know he had Spasticity? Why haven't you seen a physical therapist before for MS? Why didn't they MRI your spine? We would like to know that as well, but we are still grateful for the care and treatment that he received with his last Doctor, he saved my husbands life. Before he was my husband, and now Dr. Cooke is saving his quality of life and giving us the resources to do everything that Joe needs.

I love my husband Joseph, he is more than worth all the hassle it is to take care of MS. He is my miracle and my example he is so strong and brave and I will stand next to him through whatever else life has to through at us.

-S

P.S.
more to come it has been a seriously weird week. :)