PALS ROLL CALL NEW THREAD (PALS ONLY) [Wednesday or whenever]

There are many different types of flotation devices we can use in the pool. I have a torn rotator cuff and lots of pain so I use a noodle or a flotation belt sort of like babies use. Last year I could sit on the noodle and peddle it around the pool but it eventually gave me a repetitive stress injury in my right knee. So far this year I'm just slowly walking back and forth in water up to my neck and moving my arms in Tai Chi type movements.

Just being in the sun in the warm water improves my mood. I imagine if I can no longer enjoy the water I will sit in the sun on the pool deck.
 
I have spent the last couple of years thinking about how I could increase the range of my Magic Mobility X4 wheelchair. The obvious solution was to change the batteries from lead acid to lithium. Doing so in a way that is safe, is reasonably cost-effective, and has sufficient power for dramatically increased range has been a bit of a challenge.

About 6 months ago, I started to get serious about this project. I spent several months procuring all the bits and pieces. My friend, Greg, helped me put everything together (as he has done on so many other projects). After several weeks of testing the cells that would come together to form the battery, and then testing the assembled battery, we were finally ready to install the mess.

Greg came over yesterday and we spent about 4 high-quality hours doing the install. After we were done, I was able to test the chair in the garage to prove that it worked! It did.

Today, I was able to wrap up a few loose ends and took it out for the first real test drive. I planned to just go 100 yards, because the forecast was for snow and looked like the snow could start any time. Once I got in the chair and went 100 yards, I knew it was not nearly enough. I wound up going 5.2 miles and had a blast.

Based on the preliminary computations of energy used on that test ride, it looks like the batteries will allow me to exceed my goal of a range of 12 miles. That is a lot better than the 4 to 5 miles that I could get with lead acid batteries.

I will need to do a lot more testing to ensure that the system is really stable, but the initial indications are quite positive.

Obviously, I am pretty tired today. I will be resting a lot in the upcoming week. I do have another ski outing scheduled for Tuesday, though:).

Here are a couple of pictures. The first is of my friend Greg surveying his work. The second gives a better view of the 8 lithium cells (LiFePO4) that make up the battery pack along with all the necessary wiring.

Steve
 

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WOW, Steve. You never cease to amaze me. I hope you're able to ski on Tuesday but I know how much satisfaction you got making your chair better.

Happy trails!
 
I have to echo Kim on your battery mod, Steve - wow! Great project and what a blessing to have a Greg to help make it so.

In western PA we are seeing crocuses blooming and some daffodils up but not yet blooming. A few lingering snow showers at night.

For me, getting weaker in back/legs/hands, but getting around with a cane. I bought a rollator-style walker which I think will be good when it warms up. Has a built-in seat so one can take a break when needed.

Best to all,
Bill
 
Steve, What a great idea! Wishing you, happy, safe and long travels. May blessings abound - B.



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Well I guess it's time to introduce myself. I was diagnosed with ALS last month at the ALS clinic in Tampa. I'm still trying to process the whole thing.
My symptoms started several months ago. Right now my left leg is very week and atrophied. My right arm has recently started to show symptoms as well. Writing and using utensils are becoming more challenging. Also have a lot of shortness of breath.
Although this is somewhat overwhelming to deal with, I get a lot of encouragement and hope for this forum.
 
Sorry to have to welcome you plcare. I hope you find great support and information from this site.
 
It's Wednesday again friends. I'm going to PT this afternoon. If my pain doesn't improve, I'm going to try acupuncture.

The bad pain started up again when I increased carbs and fiber to combat an anal fissure that eventually healed. I still fear constipation so I'm sticking with what works. I'm not sure if the diet change triggered inflammation or it's just progression. I wish my stomach were not so sensitive because I'd try some NSAIs and see if they work. Tylenol just doesn't cut it in the dose I'm comfortable with. I did decrease THC so I might be upping that once again.

It was warm enough to get in the pool last weekend but I was very gentle with what I did. Mostly walking in chest deep water and moving my arms gently.
 
I am doing well, but quite tired. I had a busy week with all the work we did no my wheelchair.

I have had the X4 wheelchair out with the new lithium batteries 3 times, and am really liking the difference! I am doing a more extended endurance test now, to get a better feeling for what the range will be with the new batteries.

I was able to go skiing yesterday. As usual, we limited it to 6 runs, as that is all my body can handle. It was glorious. I went with an instructor and assistant I had never skied with before. They were great and we had a good time.

My friend Greg was able to join us, which was a special treat. The weather was overcast and blustery, with just a little bit of snow. The skiing conditions were very nice.

On our first run, we were joined by Doss, a paraplegic I have known for several years. We met on the Vail pass bike path when I was still riding a bike and he was using a hand crank tricycle. He rides that tricycle up Vail pass every day in the summer (about 6 miles with an elevation gain of over 1,000 feet). He is a phenomenal athlete and a wonderful skier. It was great to see him on the mountain and ski a couple of runs with him as well.

Here is a picture. From left to right: Great, Me, Jim (the instructor), and Doss.

Steve
 

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Steve, You're still looking great! Keep on with your adventures....they inspire us all.
 
I had a pretty good week in northern Michigan. Our snow is decreasing, but it is still cold and the back roads are still icy. I had a great visit from a down state cousin who were spending some time in Mackinaw City. Always great to see them.

Steve, your ski outing sounds like a lot of fun. And your battery project is amazing. Kim, I hope you get that pain controlled.
 
Greetings from the Heartland,

Still little to no measurable progression using the ALSFRS-R as I start my 20th Radicava cycle.

The VA finally seems to have TIGLUTIK available for those of us who can't swallow pills. Of course, as with all things related to ALS, there is a catch. It was prescribed for a 30 day supply with 11 refills. As long as I keep the refill cycle tied to my Radicava cycle, it shouldn't be a nuisance.

Steve, I loved the battery saga and enjoyed the ski trip. I haven't been on skis since I left New England over 50 years ago.

Sorry to welcome you to our group, Plcare. However, this is a great group that provides wonderful support to both PALS and CALS.

We are ops normal in Kansas.
 
It's a delightlfully warm Saturday here in Ohio. The lilac bush has buds trying to emerge and the morning doves woke me this morning. Daffodils are popping up in my garden. Spring is finally here!

My husband and I took last week to travel to Florida for our Spring Break. We flew this time-usually drive the 18+ hours. I must say that the wheelchair service offered by American Airlines was impressive and made my traveling so much easier and less stressful. It cost us in tips for three different assistants each way (one at each airport), but well worth the money. We didn't participate in our usual activities, but the warmth and time with friends was all that we needed. Plus I am still very good at eating and drinking!!!!! Found a new dock-side restaurant in Apollo Beach. Great fish!

The trip really wore me out. Needed to take a day off school this week to rest.

Only two more months of school until retirement. I am beginning to get sad about ending my career. The only thing is that I will have more energy for other things...not sure what my days will be filled with.

House is on the market now. Only two showings so far. We looked at a condo Wednesday, but it needed way too much work including narrow doorways only 29 inches wide. I read wheelchair needs 32 inches.

My latest pulmonology test indicates that bipap is needed now. My neuro talked to me about it at clinic last month. Can't get back in to the pulmonologist until May though. Mixed feelings about this...from what I read here I believe it will help me feel better and less exhausted.

I started my 14th round of Radicava today with a new pharmacy and nurse. Option Care could not get me re-authorized and has had tons of billing problems. I hated to loose my home health nurse, but am hopeful to have less hassles. I do not have the energy to fight battles for my care!

So much going on with me.

Steve, your wheelchair innovations and outings inspire me to be brave and adventurous!

Greetings Kim, Karen, Bill, Beauty, Dave, and Hibob.
Plcare, I was visiting Lakeland last week. We have friends who winter there. Welcome here!

Cathy
 
Hi Cathy, Glad you got a week to come down.

I had the same feeling when I stopped teaching but I'm busier now than when I was working and it isn't just ALS stuff. Of course, the move/remodel took tons of time and money but I met so many nice people here who are always inviting me to something.

I can still eat anything and everything, too.

I can honestly say the only thing I miss about work is the paycheck. I believe I was successful in my career and every now and then I run into a former student who is now a CPA or a corporate manager. I gave it my best and have no regrets....except maybe I should have taken more Summers off!

Enjoy your freedom in retirement!
 
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