Outfitting The Bachelor Pad

General
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Hey Team Muscles!

My diagnosis for Inclusion Body Myositis was on May 8th, 2014. But my general myopathy diagnosis was on December 10th, 2013. My legs and forearms/hand strength have been steadily and symmetrically degrading over that time (duh). So my father and I have been incrementally adapting to the whole thing. Now that we know mobility is going to be severely limited in the near future we have taken our efforts up a notch.

I thought it might be handy to list what we've been doing so that any newbees can get an idea or relate so they don't feel weird. I felt really weird until I started reading stuff like this. We're all in it together. By weird I mean having to deal with simple things that are no longer simple because of strength issues. I am babbling. Let's get the list going.

Incremental modifications to me and the house from December 10th to present:

  • December '13 – I DJayed my last event. New Year's Eve. I kicked ass so I'm glad I went out with a bang. Folks danced all night!!!! The reason is I can't unload/setup/teardown/load my gear anymore. Friends helped with that but then I discovered standing for 4 hours didn't work out very well either. I have to say that when you stand you "own" the room and can put out so much more energy and really get into the music. Not so much with sitting. So I "retired".
  • January '14 – replaced bathtub with walk-in shower (getting in/out of the tub was becoming dicey)
  • February '14 – I officially quit walking my dog. He's a 60lb GSP with torque! Even if I could grip the leash (which I can't) he'd pull me over. Plus I couldn't defend him if another dog rushed us.
  • March '14 – replaced all door knobs with handles
  • April '14 – added another handrail to a set of stairs that only had one
  • May '14 – started using my handicap parking placard in earnest. I figured little old ladies needed the spots more than me. I can still walk (slowly). My doctor said that I need to use the spots if they're available. The sudden falls have a greater chance of occurring over distances. Especially if I'm carrying something heavy....like a bag of dog food.
  • May '14 – started shopping for a folding wheelchair so friends can move me over long distances at events, fairs, ballgames, etc. Handicap parking doesn't cover all of the distance. It was awful having to walk so slowly and carefully in a crowd and over streets at a fair I just went to. We had no choice. My friends had to be right next to me so I could hold their shoulder/elbow for balance. And they had to carry my gear. It was clear that being pushed would be easier/quicker for all of us. Time to lose the pride on this one Pdub.
  • May '14 – Began architectural drawings for an addition to the house so I can live downstairs. I live in a split level: front door 1st floor, kitchen 2nd floor, bathroom/bedroom/home office 3rd floor. We are going to make the ground floor a "mini ranch". At least the "step" into the house is only 4 inches high or so!
  • June '14 – Ordered a front loading washing machine. All of a sudden I have difficulty getting wet laundry out of my top loader. Especially towels. So we are going to set up the washroom with the washer/dryer next to each other, with opposing door hinges and up on two rows of cinder blocks. Now I can sit on a stool and move the wet to the dry! This is a bit embarrassing considering I'm 6'2" and 270lb. I used to be able to grab half a wet load and transfer it. Blech.
  • June '14 – Ordered a lift for heavy groceries and the wheelchair for when I can't use the stairs. This lift will allow me to get to the 2nd level and kitchen. So we don't have to build a kitchen in the new addition. Saving money. This is where the split level came through! It's only 5 steps up to that level. And the square next to the stairs is big enough for the lift with minor modifications!

So now we are set for the major modifications related to my new lifestyle. In the future we are going to landscape the backyard so I can still enjoy it. The cool part here is that one of my clients is a landscaper. I'm hoping to trade my graphic design/web services for some cool yard action.

Outside of that my father and I will keep reacting to new things that pop up. Neither of us ever anticipated that I couldn't do laundry normally anymore! For example.

Perhaps, if you've read this far, you can make suggestions on what to anticipate next? How to find grants/insurance subsidies to offset expense, etc. Or? Ask me questions about the whys and what-fors on my end. I'm trying to be creative and practical and forward-thinking on these modifications. So that they may be useful to others.

I'll try to keep this up to date if new things happen.

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Hey Pdub, sounds like you are really getting things done! My mom lives with us and just went through a broken hip, so we have grab bars around the house, and I use them too!

I know this tub is not going to work forever, but boy do the hot baths help my back! My husband built a dandy ramp for her so that she does not have a step up onto the porch, so we have also began modifications!

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BTW, sounds like you have a great dad and super friends! You are very fortunate there!

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Now that I'm caught up I'll be a little more specific with dates. So we, and future patients, can get a better feel for the speed of progression. I'm still sort of ok. Nothing really major has happened with regards to falling or stuff like that. I have decided I can't wear dress shoes with heels anymore. I gave them one more chance last night and they really made me wobble. I'll have to find some flat soled shoes.
Enough of that. Here are some functional updates. Some are pretty cool:

  • June 10th, '14 – The toploading washing machine was removed. The dryer was moved and its door flipped and the cinder blocks to elevate both machines to a bar stool level have been placed. I should have the new front loading washer Friday, the 13th. I'll post a picture of the solution. It should make a huge difference.
  • June 12, '14 – Today was very busy. I received a phone call from Johns Hopkins to schedule a muscle biopsy on my arm. They want to do my left arm. I'm requesting the right arm since I'm left handed. I'm waiting for an answer to that request. This is the "weird" and "odd" of the whole thing. If my left arm is immobilized for 3 days due to the biopsy I've lost strength and now I'm also using a weaker, unskilled limb. A conundrum! I'm hoping they chose the left thinking I was right handed.
  • June 12, '14 – I got my wheelchair prescription this morning. A very easy phone call to my family doctor. They didn't even ask why. I walked in and picked it up in 15 minutes. A quick phone call to my insurance company, Highmark BC/BS, got me an approved vendor list. So I'll have a wheelchair on its way by end of business today! This is important because I have a fishing trip, 3 baseball games and a Blue Angels air show all coming up. Handicap parking or not I've learned that there is still a lot of distance to cover. It's not fair to my friends to have to be near me with their shoulder/elbow in case I stumble. It slows us all down. Now they can push me safely/quickly and pile all of their umbrellas, coolers, chairs and purses in my lap! Reciprocation is how I roll! Pun intended.
  • June 12, '14 – THE BIG GOOD NEWS! My commercial fitness client, Ener•G Wellness called. The owner, Matt Torggler, knows that I have a problem and he was checking up on me. He is going to help me acquire a seated cardio workout machine that does arms and legs. This is great news because I really need to workout again. Never mind weight loss or cardio health I haven't been able to "clear my head" in more than a year. Long cardio workouts allow me to disappear from the world for a while and get thoughts out and processed. I need the rust and cobwebs kicked out of my noggin. I'm excited about this development. Plus it will make me the most handsome MD patient out there! Further, he is going to have my strength gym removed. It is giant and complicated. So that's awesome. It's in the way for the addition we're putting on the house. It's sitting in the future bathroom right now.

So today started on the downside. But rebounded by lunch. Now I'm off to finish a batch of client projects! I'll have more updates soon. I'm sure.

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That's awesome, Patrick! Is he getting you a NuStep?

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We're not sure. He's looking at options. The NuStep is the machine that would be best. They had me use that to warm up at PT.

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I think all of these modifications are great P-dub!! And happy birthday by the way! Why didn't you add your b-day on this site? Maybe I'm just not seeing it, or you're being coy…not like the fish, or is that Koy?….Hmmm…I've used to be good at spelling, lol!


Well have a great day anyway!!

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Koi! And yes. It's my half-birthday. But now it's my "official" birthday. Too many bad things and Christmas have stomped on my real one lately.....

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Bah! I knew it was something like that…Koi…thank you!

I'm sorry that your Birthday has been spoiled :-(

But you still find a way to make people smile…. You're special!

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It won’t stop! :slight_smile:

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So,

My solution for laundry worked like a charm! The idea was a "French door" scenario so that the switching from washer to dryer was easiest. Also, I'm tall. So putting both machines up on two rows of cinder blocks get them to a height that a barstool can easily accomodate. Boom. No need to bend over or sit on a short stool....which is even worse than bending over.

I hope this helps anyone that finds themselves having a difficult time doing their own laundry. Now I need a clever solution for folding them. My hands get really tired doing that.

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This is a really good set up! I know how much this must help, as I have trouble bending too.

I have the front loader washer, but not elevated! It's on my wish list!

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Two rows of cinder blocks is 2-ish feet. Worth it!

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Pertaining directly to the IBM and "bachelor pad" point of this blog: the drawings are coming along nicely for the addition that will put the bathroom and master bedroom on the first floor, not sure about the timeline. I've included a couple of them for the blog. We should have the lift in before September which will make getting groceries/dog food up to the kitchen easier. Also, it's good that my sister Meredith got me fat-handle utensils. Using chopsticks wipes out my hand strength now and cutting through a Stromboli with a steak knife and fork is almost impossible. I have to hold both utensils in a way that my dad spent my entire childhood breaking me from doing. I don't want to go to my room without dinner! ;-) My right leg is starting to struggle finishing the top step if it gets there first. It also does that "quick buckling" thing that usually leads to falls while I'm standing. I haven't fallen in a while. Now that I've typed that…..uh-oh. I'm doomed!

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June 16, 2014 - I started using crutches full time because, as usual, this is a surreal disease that presents itself in unusual ways. In this case I was finishing up happy hour at Kelly's Logan House and while I was getting out of my seat at the bar another patron rushed in to get the seat almost knocking me over. He was much shorter and smaller than me. But IBM is taking away some major muscles in my case and it's not obvious. I told him to give me a second, disdainfully. He felt I was overreacting. It was not a cool incident. I discussed this with my sister Deanna and she said when one is looking at me it's not obvious I'm sick. I'm still big and tall. So people can't parse the weakness. Since walking in general, going up/down slopes and going over rough terrain was getting tougher and tougher we both thought it was time to just get over my ego and use the crutches. My sister said at the very least it would be a visual cue to everyone something is wrong.

BOY WAS SHE RIGHT! People give me space. I can use full strides and I go over most terrain like it's flat. However, slopes, especially going down them, is still very risky but they make a difference there too. I used them during the USA's knockout round game at a bar. The bar was 5 deep with people. When I got up to use the restroom they cleared out of the way. Then I started walking through the crowd banging the crutches on the ground yelling "Watch your toes!!!" They all laughed and moved. People get doors for me and even help me put my crutches out of the way and get them when I'm done. The coolest thing? Servers have been helping me get my to-go food to my car. A win! I did have to learn that a backpack is now a permanent accessory to my fashion ensembles. I can't hand carry anything any more.

A funny side note: When I am seen using the crutches for the first time by friends they always ask me what I did to myself. When my friends take my crutches to goof around or try them out folks ask if they're alright and can they do anything for them. WTF? ;-)

June 23, 2014 - On this wonderful day in history I got to experience surgery, of any kind, for the first time in my life. It was a bicep biopsy. Dr. Corse and her team made the overall situation as smooth, relaxing, comfortable and quick as possible. I got to Johns Hopkins at the requested time of 7am and processed in. They ended up taking me first, ahead of time and got me out about an hour earlier than was planned! Awesome. They did do my right arm. Whew. The sling it was in wasn't for anything more than a reminder to not use the arm for lifting. It was off in about 3 days and I was back in action. As I'm typing this right now it's about all healed up. The bonus? THIS IS THE BIGGEST MY BICEP HAS BEEN IN 3 YEARS! Boom. Watch out for the gun show ladies. Oh, they took 3 samples. One for the pathological diagnosis, one to freeze and one for research. As far as I understand this. Dr. Corse did say when she got into the arm the muscle definitely looked dead/dying/unhealthy and it was being replaced by fat and sinewy tissue. I vote for not doing a biopsy ever again. FYI.

June 28, 2014 - Being the man-of-action that I am I decided to go ahead and do a deep sea fishing trip 5 days after surgery on an arm. Boom! We left the slip at 5am, blasted full speed 40 miles out and then proceeded to troll for 7 hours. It was another 3 hours at full speed to get back home. Wow! First, the guys put me in "time out" for 3 hours. They tricked me into sitting down in the fighting chair at the back of the boat while we were leaving the port. All of a sudden the front of the boat is in the air, my forehead is almost in the water as the engines went full throttle! I thought it was going to be death by bouncing. With my IBM I couldn't even begin to try to get up into the salon. No one could come get me. My weak hands were useless and there was no seatbelt. I held on for dear life by wedging my legs between the end of the boat and the chair. While using my forefinger/thumb strength to "hold" me in it. Ack! After 45 minutes I figured out that I wasn't going to be flipped out, relaxed and then kind of went into a trance watching the wake and rooster tail and boats behind us fanning out. It was a very cool experience.

As for fishing we spent 7 hours in 6-8 foot waves that were relentless. I just happened to be in the seat when a 40", 18lb dolphinfish (Mahi Mahi) hit. My friend John guided the rod during the catch. I did the reeling. It was not as hard as I thought it would be but I did end up having to use both hands. The fish was gorgeous. More importantly? It was delicious. My cousin Chad cooked it 2 ways: Thai inspired "ceviche" and grilled steaks over dirty rice. The freshest fish I've ever eaten and the coolest fish I've ever caught!

The best part of the trip was that everyone had to walk around like me for 13 hours! Using their arms, holding on to things and losing their legs. Hahaha! Don't even ask me about using the head…took me twenty minutes just to open my fly……..

July 5, 2014 - I went on another big adventure the very next weekend, 4th of July weekend. It was to Pittsburgh to watch the Pirates at PNC park. The nautical theme is coincidental by the way. I've always wanted to see that park and we figured that we should do it this summer. While I can still do most things with nothing more than crutches. Boy am I glad we did. Even with handicap parking we were 2.5 blocks from the stadium. Think that was the tough part? No. Once you cross the threshold of any stadium the journey just begins. You've gotta cover ground to get to your section. Then cover more ground to get to your seat. Then reverse! Even though I'm faster in crutches I'm still 50% slower than normal walkers. Plus it's grueling. Not in a fitness sense, but in the sense that my legs just slowly want to quit working. My shoulders, which are fine, really are quite happy getting the workout in. Plus you can't really use the crutches on stadium stairs. There's something weird about their height/slope ratio that makes me uncomfortable using them. I just did what I do at home and take my time using the hand rail. Overall it was a great first day, but we learned a lot.

So… ON DAY 2 I BROKE OUT THE WHEELCHAIR for the first time. It's the first time I've ever had to use one. For any reason. My friend Tony put in a yeomen's (pun intended) effort pushing me all over Pittsburgh as we explored the city. And then all over the ballpark as we found our seats and did some souvenir shopping. He and his girlfriend both agreed that the chair made a HUGE DIFFERENCE in the day. Even with all of the pushing in the hot sun up and down various slopes and hills. I'm happy we used it. Smart decision.

The downside is that, for me, it was mentally draining. I had to get used to being below the crowd under another person's crowd maneuvering control. I had to trust him a lot. I usually stand above the crowd and can see moves to negotiate the insanity 3 or 4 people ahead. Plus oncoming collision possibilities. In this case everything seemed like it was going to be a collision. Wow! Also, people lack self awareness. Amazing how many folks cut right in front of us looking at the tops of buildings or whatever. I imagine it's going to take me 4 more times in that thing before I get used to it. I would vote against ever having to get used to something like this. Find something better to get used to.

July 14, 2014 - Today I'm starting my diet. I can't exercise until the addition is put on the house and everything is on the same floor. Exercise or go to the bathroom is my daily dilemma. If I over do it my muscles that are currently doing jobs they weren't designed to do, because the real ones are gone, get really wiped out. It's like double-duty. But I can start dieting with no issues. So I will, now that I'm mentally ready for that. It's the Accu Weight-Loss "Bead Diet". My chiropractor client offers it and we've done it successfully in the past. It requires no exercise but is a very aggressive diet. I'll let you know more if you contact me directly. Anyway, I'm hoping to go from my current 285lb down to 250lb before Christmas. That's a good weight for me. After that I'll start chipping away to hit 225lb.

Thanks for reading. I hope this helps anyone that has or was just diagnosed with IBM to see some timeline action like this. Plus it helps me to just get it out of my mind. Seeya soon!

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Hi Pdub,

Thanks for sharing your plans for your addition, the graphics are excellent! This should surely make a big difference for your well being and ease of living! Though I don't have Myo, the degenerative arthritis will make this a necessity somewhere in my future!

What an adventure on the high seas! Great pics! Mahi Mahi is the most delicious meal from the sea, it's always a thrill to see this on a restaurant menu and fresh caught is the very best!

You are certainly and inspiration to all, as you are adapting and overcoming to allow yourself every wonderful moment life has to offer! You have the will to find a way and I applaud you all the way!

Wishing you well,

SK

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Wow, Patrick! Thanks so much for keeping us updated on your escapades! Even with this disease, you're still the same 'ole Patrick! Love and miss you!!

Laura

xoxo

P.S.

Great job on the house, that's going to be so great for you!!!