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How different generations living with SMA can teach one another

Meet Regina and Al. Their friendship and respect for one another all started at a fundraiser before a Phillies baseball game in 2019. “I watched Regina give a beautiful speech at the event about her recently diagnosed son, Shane,” recalled Al. “I thought to myself, ‘My friends at Cure SMA need to meet this amazing mom and get her involved.’”


This topic has 17 replies, 6 voices, and was last updated 6 months, 3 weeks ago by Lupa F.

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    • #21850
      Alyssa Silva
      Keymaster

      A couple of weeks ago, I posted about how I was getting a new wheelchair, and it’s finally here!

      So, I wanted to formally introduce you to my new ride or die, Rizzo. I had my followers on Instagram vote on the name, and this was the winner!

      I’m still in an adjustment period with the chair. My comfort level isn’t at 100%, the new joystick is super sensitive so I’ve been giving myself a lot of whiplash, and I’m learning all the different modes and new features (bluetooth?!) for the time being.

      Right now, I’m a little frustrated. But I do love the chair and know that I’ll get used to it over time.

      Any words of advice? Or perhaps some sort of peace of mind? 😅 How long until you typically get adjusted to a new chair?

    • #21914
      Dennis Turner
      Participant

      I have a three year old version of the same chair. My problem with the chair is getting repairs. Does anyone have recommendations on getting repairs done more quickly?
      That sensitive joystick is very susceptible to water. Mine is usually encased in plastic bags.
      Like most chairs, snow is a challenge underwheels. An inch will stop you in your tracks.
      Otherwise i love the chair.

    • #21923
      Alyssa Silva
      Keymaster

      Hey Dennis! How susceptible are we talking here? Can I be out in the rain for a couple of minutes at a time or no? Also, do you know if there’s a way to adjust the sensitivity? It’s SO sensitive and driving me nuts. I had a mini joystick on my last chair but it wasn’t as sensitive as this one.

      Unfortunately, I don’t have any recommendations for you. What company do you go through?

    • #21924
      Dennis Turner
      Participant

      You should be good for a couple of minutes. Carry a couple clear plastic bags, because once water gets in the electronics fail at weird times. Something I am dealing with right now.

      I go through National Seating and Mobility, who also provided my chair, haven’t been able to locate another company to handle repairs.

      Don’t know about adjusting sensitivity on the joystick, ask the provider if it can be lowered. Just as a question, what does bluetooth do for you?

    • #21927
      Kelly Miller
      Participant

      Okay, I’m trying to think of the positive things to say here about this chair… I like the way it looks!

      So here is what happened to me. I had an Invacare for 10+ yrs. I absolutely loved that chair. It was sturdy and practically indestructible. It was a mid-wheel drive that I could steer like you wouldn’t believe with my sip and puff. After hitting the 10 year mark, I decided I probably should get a new one before my old one really died and I was in dire straits. Enter Permobil rep.

      He was super nice & appeared very knowledgeable about his product. He was also very excited about his product. I think it’s important to note here that he is also 100% ambulatory, with 0% disabilities. Because we were living out in the country in a mobile home, he suggested a front-wheel drive F3. He said the front-wheel drive would help me a lot to deal with all the bumps & small hills we had on the surrounding property as well as getting over an unusually thick threshold at the front door. I was a little bit leery of changing to a front-wheel drive, but he was so adamant about how it would be better that I was swayed into his way of thinking. He also pointed out with much enthusiasm how I could get Bluetooth & elevated seating (where it raises up in the air) and those would make this chair the absolute best ever. Of course, he wanted me to try one out 1st to see what I thought, but I had to explain to him that I just wouldn’t be able to do that because I would fall out or over in a regular chair. He obviously had no understanding of people with SMA – their limitations, restrictions, & needs. I really should have seen the red flags along the way, but I was so caught up in his enthusiasm for the chair that I was an easy sell. He did everything he could to get me the chair fast, and I received it in about 4 mos. With insurance and everything, that was almost record time. Enter the new chair.

      Let me say at this point that I have gotten used to it and have made it work for me. However, I almost cried for the 1st 2 weeks after getting it. The steering is so different from mid-wheel maneuvering. I was immediately angry that I had been talked into switching because now I no longer had the ability to turn on a dime, not to mention all this excess “baggage” (extra wheels & headrest structure that we jerryrigged) behind me that I had to take into acct. when making a turn. It caused me to have to learn to swing way out, kind of like you see cars in the right turn lanes do that you just want to shake your head at for taking so much room to make a simple turn. So after I got over my anger at myself & practiced turning, I thought oh this’ll be good outside with the bumps. Nope. The 1st time I went out I almost threw myself out of the chair going over minuscule grass. Thank goodness my husband was walking with me or it would’ve been all over. He caught me (my body I’m talking about) and had to put my head back upright. What on earth had happened? Because it was a front-wheel drive, all of the weight of the chair hit the bump and then a dip that it felt like I was on a roller coaster. And I promise you, these were not in any way bad bumps or dips! I immediately turned around carefully & made my way back to the house. As I headed thru the front door, I couldn’t get the chair to go over the threshold. I was so worried about throwing myself out or causing my head to fall over that I couldn’t get enough steam to get over it. It took 5 times (I kid you not) to finally get inside. But wait… the Bluetooth will be worth all this!

      Yeah… Nah. I had no idea how the Bluetooth worked. I had been told in the beginning that it would be easy & simple to operate my phone with my sip and puff from my chair. I called the rep 6 times, and I left 6 voicemails. I had the CS person at the store call and leave him messages. Nothing. It was like he had become a ghost… Ha, he ghosted ME! My CS person didn’t know how the Bluetooth worked either, so he couldn’t show me. He did tell me to Google it (I was so frustrated & upset by this time that I hadn’t even thought of that), but I couldn’t make heads or tails of the directions. I don’t even know if they were the right directions. Saving grace? The elevation part.

      I have thoroughly enjoyed being able to elevate my chair to the height of a real person. At church, I’m able to raise up during worship and sing at the level of everyone else. In a crowd, I can lift my chair just slightly above the person in front of me and see everything going on. Some people even get inside the electronics to take off the governor that automatically kicks in when you raise the chair up so they can “walk” along with friends at their speed. I don’t do that – mostly because I don’t know how to get into the electronics, but also because it’s awfully scary going faster at 5 feet!

      I don’t want to say I hate my Permobil F3 (my husband says it enough for me), but I will not be getting another one in the future. I’m counting the days until I have had this one 5 yrs., so I can start ordering the next. It will definitely be a mid-wheel drive and perhaps not even Permobil. I’ve moved to a new state (Florida now), so I won’t have the same rep. This may help or it may not, we shall see. I will also make sure that I understand every little thing about the chair before that rep walks out my door at delivery time – even if I have to lasso him to the chair! I had to pay out-of-pocket for the elevation, the Bluetooth, the phone holder, & the cup holder (to have my drink near while I drove & used by phone at the same time!) So far, 4 yrs. in, the only one I’m using is the elevation & occasionally the cup holder. I can’t wait until Sep. (the 5th year mark), but it’s going to be a little bit of a bummer because there goes my record about keeping my chairs until they are over 10 yrs. old.

      I really hope you have way better luck Alyssa and Dennis! I didn’t want to tell you all this, but I figure it’s better to know what happened to me so you can hopefully figure out ways to work around the problems. If you do figure out how to do the Bluetooth, please, please, please let me know because if I can keep from having to get a new chair so soon, my body & my mental health will thank you tremendously!

    • #21931
      Alyssa Silva
      Keymaster

      Oh Kelly, I’m so sorry you had so many issues with your F3. Going from mid-wheel to front wheel is a TOUGH adjustment. I did it around 15 years ago and struggled for a while. Thank you for voicing your experiences with your chair!

      To answer your guys’ question about bluetooth— I’m still learning the ins and outs. But I can control my phone and laptop from my mini joystick which is incredible. I can really operate anything that has Bluetooth. I’m excited for this feature because it’s difficult for me to use a laptop in my chair (I use it laying down), but maybe now with this feature, I can get more work done in my chair!

      Updates to come. 🙂

    • #21936
      DeAnn R
      Keymaster

      The DME guys should be able to adjust the sensitivity shouldn’t they? I’m not familiar with that type of joystick or Permobile or even fwd. I’m old school & have rwd. Hated the mwd I was stuck with for 5 years. I can relate to Kelly. My previous chair I hated from day one. I was in tears as well. Although I made it work, 5 years couldn’t come soon enough. During the time I had it, there were 2 recalls and numerous problems plus it was uncomfortable. Therefore when I got this chair it was 1,000 times better from the get go. As you said there’s always an adjustment period, but I think for this chair it was only a week or two of minor adjustments. My chair is 7 years old. The fit isn’t great anymore, and I’d like a few more features, so debating starting the process. My dilemma is should I stick with Invacare or do I dip my toe into the Permobile world? Rwd is getting more difficult to acquire as well. Hope you can tweak your chair so it’s perfect. Good luck!

    • #21937
      DeAnn R
      Keymaster

      Kelly, when I despised my previous chair I actually started the process at about 4 1/2 years, so the minute I was eligible it was being processed. If there’s comfort (risk of pressure sores, pain etc.)/safety issues or problems with the chair sometimes they can push it through sooner as well. I’d certainly be looking for a rep since you’re in a new location. Good luck! Hope your next chair will be a thousand times better like mine was.

    • #21940
      Halsey Blocher
      Participant

      Alyssa I love that you named it Rizzo! Is it after the character from Grease or did you just like it? I don’t know much about permobil, but with quantum, someone can easily come out to adjust the sensitivity and speed. I would just call and ask. They may to come back out anyway to make sure you’re comfortable and make any adjustments that you’ve decided you need since they dropped it off. For me, it usually takes a week or two to get everything mostly situated how I need/want it. We often make small adjustments after a while, but we just do it ourselves as long as it’s not complicated.

      Kelly that sounds like an absolute nightmare! I’m so glad you’ll be able to get a new one soon. I assume you’ll be switching back to mid-wheel drive? If you’re really serious about switching from permobil, let me know. I’m a big fan of quantum and I’d be happy to chat.

    • #21942
      Alyssa Silva
      Keymaster

      To answer Dennis’ question, the Bluetooth capabilities on my wheelchair allow me to control my laptop, phone, basically anything with Bluetooth right from my mini joystick. Color me impressed! Due to positioning and other factors, I’m only able to use my phone/laptop while laying down so this new feature is a game-changer for me. Hopefully I can adjust the joystick sensitivity because I’m still struggling. Crashed into a wall yesterday. 🙃

    • #21945
      Kelly Miller
      Participant

      Alyssa, let us know how that works when you get the joystick adjusted.

      I’ve had problems with running into walls & things since I got mine. One time, in my doctor’s parking lot, I hit the back of a parked car so bad I thought my hand was broken. It had been sitting normally on the armrest when I slammed into the back right of the car, tearing off 1 of my nails completely and smashing the rest of my hand. I went up to my pulmonology appt with tissue from a bathroom wrapped around my hand and blood dripping down onto the floor. Thank goodness I was there because they were able to clean it up and put some ointment on it. The nurse had to pull off the rest of the nail and then wrap my hand in a bandage. By the next day, it was as big as a small pumpkin and completely black & blue across the top. I was convinced it was broken! I went to the urgent care, where they x-rayed it (btw, 1 of the most painful things & I’ve been thru some painful things), and said it was not broken, just severely bruised. It took a month for it to stop hurting and my nail is still ugly after more than 15 months!

      It seems to me the chair is not near as responsive as my Invacare was. It’s like there’s some kind of delay. I tell it to go right, and it doesn’t go right for about 3 seconds. It was that 3 seconds that caused me to smash my hand. I had directed it to turn before I got to the car, but it waited. I’ve also scraped up a huge share of walls in my vicinity. I never used to do that in my other chair. Just be very careful, and don’t go as fast as you used to for a while until you figure out the chair. I thought I had figured it out, but it still surprised me.

    • #21946
      Kelly Miller
      Participant

      Halsey, I will definitely be talking to you when I get ready to get my new one! I don’t know a lot about Quantum, but I’m willing to find out. I can say very assuredly that I do not want another Permobil. I feel like they misrepresented my situation to me. They told me Invacare wasn’t making any more and that I couldn’t get them. I know they had had trouble with the FDA about their practices or something, but theirs is the best dang chair I’ve ever had. I’m definitely going back to mid-wheel drive whichever company I choose.

    • #21954
      Halsey Blocher
      Participant

      Kelly, that’s so unfortunate. They shouldn’t have pushed so hard to get you something you didn’t really want/would have to majorly adjust to. I can’t believe that happened to your hand! I’ve never had any brand have such a delayed reaction. I can’t imagine how relieved you’ll be to have something else!

    • #22031
      Lupa F
      Participant

      Figure I’ll tack on my wheelchair story here too. I wrote a post a while ago about getting my chair approved, it finally did in late October and they delivered the chair, a permobil M3, the day before Thanksgiving. I could already tell something was off when he brought it in. I requested the seat to be as low as possible because I live by myself and I need to be able to reach the floor to pick stuff up. I could see right away it was too high and we measured it as low as it could go and it was about 1.5 inches higher than it should have been. I guess when they ordered it they said to set the footplates too low so permobil programmed it so the seat would only go down so much so the footplates still had enough ground clearance. It’s supposedly just a programming issue but the rep didn’t know how to fix it and would have to call permobil.

      But I have other chairs still I could use so I said I’d use it for a bit and figure out whatever other adjustments I’d want and he’d be able to come back and do everything at once. So I used it one night for a few hours and found like 5 more fairly minor things I wanted adjusted and sent an email to the rep detailing the changes I wanted. A week later I get a response asking for a detail about something I wanted. I responded saying to just order this thing and gave the name and part and everything. About 3 weeks later I get another email from him saying “hey I found this part, would this work?” I had to laugh because it was so dumb. I said “yes, you know about it because I literally told you weeks ago that’s what I wanted”. Supposedly that did get ordered. I haven’t heard anything yet.

      It’s now been nearly 2 months since I got the chair and I’ve used it all of about 4 hours because it’s pretty much useless without the changes I requested.

    • #22036
      Alyssa Silva
      Keymaster

      I’m so sorry to hear about your experiences Lupa. Hopefully, you get things squared away soon because that just isn’t fair. If only things could be easier for us!

    • #22040
      Lupa F
      Participant

      Posting about it made me decide to actually try to do something about myself so I emailed Permobil this morning. They got right back to me which was nice. They said it left them with the seat height set the right way, so he asked me to try playing with the footplate height. The seat actually can go as low as I want, but the footplates are set too low so it’s stopping itself. If I raise the footplates up a bunch, angled out because I only have the manual height adjustment, it’ll actually go as low as it’s supposed to. But obviously I can’t really use it with my feet sticking straight out in front of me. My knees are pretty contractured so I couldn’t sit like that even if I wanted to.

      Next step is to figure out how to fix it from thinking the footplates are too low. Progress!

    • #22041
      Dennis Turner
      Participant

      From what i have seen, Permobile as a company is quite responsive. The problem i have is more with the service providers. It makes me wonder if the chair is now so complex that the service techs need additional training.

      The other problem i see is that between getting insurance approval and then scheduling the actual repair seems to take 6 to 8 weeks. ALWAYS.

      I can’t wait months to get a chair that suddenly stops working fixed, but it has happened too many times.

    • #22042
      Lupa F
      Participant

      The tech thing has nothing to do with the wheelchair maker. I’ve had the same issues with my scooters which are nowhere near as complicated as the wheelchairs. One reason I’ve liked using scooters is they’re cheap enough that I’ve been able to buy backups myself so if my one that is covered by insurance breaks down I always have a backup.

      Even trying to buy stuff out of pocket where they don’t have to bother with insurance from National Seating takes months, it’s super weird. I can order the same item online and get it in like 3 days, except some companies won’t let you buy stuff except through NSM or other providers.

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