My Plans for World Domination on World MS Day

Wednesday, May 31, is World MS Day, and I have big plans. Because their readership is so much larger than mine, I’m going to hack into the Living With MS Facebook page operated by Healthline.com and take over their feed for the day. While I have the reins, I will execute my evil plan of engaging readers on a variety of MS topics related to my subtype — primary progressive MS. To initiate the conversations, I’ll share content from Healthline and from my blog, Enjoyingtheride.com. 

Let’s see how much we can learn from one another. Please share this announcement freely, (except with Healthline.com, I don’t want them to see me coming) so that we can connect with as many folks as possible tomorrow. See you then!

When You Have MS, You Can’t Live Without…

A couple of months ago, I received an invitation from Healthline.com to respond to the above prompt. They asked the same question of other MS bloggers. Here is a link to our collective responses.

This is what I wrote:

“With MS, I’ve learned never to say there’s something I can’t live without, because that may be the very thing I lose next. But in the spirit of this question, one thing I would hate to lose would be my voice. I use voice recognition software to write my blog, the book I’m working on, emails, and texts. I use my voice to operate lights, ceiling fans, shades, and televisions. I use my voice to remind my wife that I love her. Given that I’ve already lost all of the function in my legs and much of it in my hands, if I lost my voice, life would become much more difficult.”

I struggled a bit with this assignment. I understand what they were after — describe one aspect of your life that is most important in easing the burden of MS. However, if you take the prompt literally, it asks what aspect of your life you would die without. I spent the last sixteen years ensuring there is nothing in my life that I couldn’t live without, because when you have MS, everything is on the chopping block.

When I was healthy, if you had told me that in the next decade or so I would lose my ability to snowmobile, hunt, golf, type, write, walk, work, or take care of myself in terms of eating, dressing, and grooming, I might’ve fallen into despair.

Indeed, one day I may become overwhelmed and unable to maintain my positivity, but it won’t be the result of losing something I can't live without. It will be that there aren’t enough things to live for, and I’m still a long way from that point.

My New Wheelchair – Permobil F5 VS

Getting a new wheelchair is not like getting a new hairdo, or a new outfit. It’s way beyond that. Getting a new wheelchair isn’t the same as having your bathroom redone or trading in your car. It’s not like getting a new job or taking a new lover (says the guy who married his high school sweetheart). Those pale in comparison. The best analogy I can come up with is that buying a new wheelchair is like buying a house, if you spend all day, every day, in that house. It’s a big, freaking deal.

Medicare, and therefore most private insurance companies, allows a new power wheelchair every five years, so I needed to choose wisely. I did my research. There have been so many changes in the power wheelchair marketplace in five years’ time. When I think back to my mother’s wheelchairs, beginning in 1970, it blows my mind.

For its time, circa 2012, my Invacare TDX SP wheelchair was quite something. It’s now semi-retired, serving as my emergency backup. I still have my iBOT wheelchair, but I use it sparingly because there are no more parts and no more service available.

Let’s take a look at my new wheelchair, a Permobil F5 VS.

Drawbacks

There are a couple of things I like less about this wheelchair compared to my previous one: 

• Because the chair is front-wheel-drive, my turning radius is longer, and so my maneuverability is poorer. 
• This chair weighs about 150 pounds more than the Invacare. In most cases, that’s not an issue, but it can occasionally be. 

Advantages 

• Leg extension control: In my previous chair, I could elevate my feet. But in doing so the foot pedals would impinge on my legs such that my knees would rise up a few inches, and that made for an uncomfortable position. With this chair, the legs can extend while they raise up. Beautiful thing. 
• Elevates 14 inches instead of 8: Yes, size matters. That extra 6 inches allows me to sit comfortably at high-top tables in restaurants and brings me closer to eye level when I find myself among a group of standing individuals. Doesn’t hurt when I try to reach something on a high shelf either. 
• Seatback Recline: In this chair, I can adjust the seatback angle to more comfortable positions, and it even allows me to lean forward for activities like brushing my teeth and eating messy foods. Coupled with raising my legs, this feature allows me to lie flat in the chair as if it were a bed, which I have done more than once already. 
  
• Preset modes: There are many actuators in my chair, and I have individual control of them. But I also have common positions I would like to get to without holding down the actuator buttons until each one is in the right position. For example, when I want to nap or watch television, I can push one button so that my tilt, recline, and leg position all go to a preassigned point. In fact, I have four memory positions, and I can change them anytime I like. Big improvement. 
• Bluetooth for computer and phone: As it gets more difficult for me to control devices like my laptop computer and my cell phone, the more important it is that I can use my wheelchair controls for that purpose. This wheelchair communicates with my computer and phone through Bluetooth. I use the joystick to manipulate the cursor just like I would use a mouse, and I have right and left click buttons that mimic mouse buttons.
•  IR for A/V equipment: I use voice controls for some of my audio/video controls, but not everything, and sometimes voice control is not ideal. Now I can control all of my A/V equipment using my wheelchair. 
• Electronic anterior and posterior tilt: This means I can tilt my seat, as opposed to my seatback, forward or backward. Again, this helps with activities like brushing my teeth and eating messy foods, as well as getting several comfortable, reclined positions. I also make use of a certain anterior tilt memorized position whenever I empty my bladder during the day. I'm practically standing up and peeing again. 
• Cell phone plug-in: In my previous chair, I had a cell phone mount, but in this chair, the cell phone is plugged into the wheelchair battery, and I never worry about charging. Imagine if you had a cell phone you never had to charge. 
• 7.5 mph: My old chair topped out at 5 mph. This one goes 50% faster. That makes a huge difference in the wide open spaces like parking lots and my jaunt to physical therapy twice a week. 
• Standing mode: This is what makes the Permobil F5 VS the Cadillac of the power wheelchair world (I guess that’s a pretty outdated term for high quality, isn’t it?). My iBOT elevates me up on two wheels. My Invacare could elevate me 8 inches. My new chair elevates me, but if I prefer, it also stands me up. I put a padded bar just below my knees and another one across my chest, push a button, and I am standing. It’s a good position to be in for so many activities, but most importantly, by standing a little bit each day, I improve my health—circulation, respiration, digestion, joint health. Standing brings a whole new benefit to physical therapy. Doing my exercises in a standing position allows so much more range of motion. 
  

What I wish it had

I wish I could move along at normal walking speed at full elevate. I understand not allowing normal walking speed, about 3.5 mph, in standing mode, but I think they could allow it in elevate mode. I’m working on them. They’re not budging, yet.

Final Thoughts

In my yet unpublished book, on page 169, I write: 

There is no relationship between human and machine more intimate than that between a wheelchair and its user. The chair serves not only the function of legs, but also couch, recliner, dining room chair, car seat, chaise lounge, dog walker, coat rack, drink holder, getaway vehicle, and shopping cart. It is, therefore, ironic that the customary term for such a condition is confined to a wheelchair, when, in fact, the more accurate term is enabled by a wheelchair. 

Now, knowing what I do, I need a few items to this list. I’ll never finish the damn book.

Thanks go to my occupational therapists, Michele and Maren, my physical therapist, Claudia, my primary care physician, Dr. Freedman, the folks at Black Bear Medical including Don and Wendy, and the team at Permobil led by the incomparable Lisa. Couldn’t have done it without you.