[kelly-miller]

DeAnn, absolutely love your video! This is the 1st one I’ve watched. Your nieces are really cute also. I found myself smiling at both your exchange with them and Tic Tac on her challenge. Keep entertaining us & and informing us!

Kelly

[kelly-miller]

Esther, it is a vest that you wear & it vibrates & shakes your chest to loosen the congestion. You can use it when you’re sick and/or you can use it as a regular daily therapy to keep things loose. It works wonders! I’ve used it in place of chest percussion, which makes me sore after a very short time. The vest doesn’t hurt, in fact it can be pretty comfortable. Have you also heard of the “cough assist” machine? That’s a really good one also when you have bad congestion & its loose but you just can’t get it up. I’ve added a link for both below. These are just one link for each – there are many more.

Vest  Airway Clearance System – https://www.hill-rom.com/usa/Products/Category/Respiratory-Care/The-Vest-105-Home-Care/

Cough Assist machine – https://medafore.com/

There are YouTube videos for the Cough Assist & probably also for the vest. Hope this info helps!

Take care, Kelly

[kelly-miller]

Very well written Kevin. A lot of what you said is things I’ve learned along the way also. I went to counseling when I was in college and it definitely helped me over a hump of feeling dejected about my future as an employee and spouse. I’ve since had a career and celebrate 20 years of marriage. Having these things be successful has not stopped me from having bouts of anxiety & depression. The anxiety usually comes in relation to medical issues. The depression seems to come without a reason in particular. I’ve recently started taking an antidepressant and my doctor thinks this will help me. She says that as an individual with a very severe, chronic disability, I have to face lots of situations that can cause depression. I didn’t want to take it because I always felt like I was stronger than that but I realized that we all need a little help in one form or another. There’s no shame in asking for help!

[kelly-miller]

DeAnn, I get the pneumonia shot. I’m sure it has saved my life many times. Although I’ve still gotten pneumonia, I’m sure it would’ve been much worse without the vaccine. It’s my understanding that you can get the booster anytime between 5 & 10 years after your last shot. It probably depends on what your doctor wants to do.

I totally get what you say about your care team being good but not particularly familiar with SMA. I also do not have doctors that know anything other than the basics about SMA. I selected them based on their willingness to work with me as a partnership rather than having expertise and always trying to tell me what to do. We work together and come to the best decisions for my health. I’ve taught them  a lot about me individually and about SMA generally. It can be frustrating because I have to stay on top of the latest developments and treatments myself, but I feel like it’s better than not being able to have a say in what happens to me.

That group on Facebook I gave you is a good one for the technical files but there’s another one that would be really good for you in general. It’s called Living with MD. It has over 1600 members from all over the world and we basically discuss EVERYTHING. It’s only for people who have a form of MD (not caregivers, not spouses, not parents) and only for those over 18. Topics of the post run from anything to do with hiring  Personal Care Attendants to dating with a disability, to what equipment works for some people (wheelchairs, beds, computers, feeding tubes, suprapubic catheters, etc.) to just plain social aspects. I’ve never been somebody who hung out with disabled people in my younger days but, since joining this group, I’ve found great information, as well as made some very good friends with MD. It is a closed group & I think you have to have an invitation to be considered. That’s how they make sure it stays for people with MD rather than just interested parties. If you want to give me your Facebook name, I can friend you & send you an invite. (If you don’t want to put your Facebook name on here, you can email me at [email protected]) Or, you can find me on there under Kelly Simmons Miller. Friend me then I will send you the invite.

[kelly-miller]

DeAnn, you can get your RT (respiratory therapist) to adjust them or your pulmonologist. Sometimes, you can change them yourself if you know what you want them to be. Are you a member of “SMA Support System” on Facebook? It’s a closed group but I think all you have to do is request to join and they will let you in. They have a “Files” section that has all sorts of info about settings for different machines, i.e. cough assists, ventilators, BiPAPs. Let me know if you need help finding it.

I isolate myself somewhat during the winter to avoid getting sick. It’s hard though because I’m a very social person & don’t like staying home all the time. I also make sure I don’t let people hug me during flu season. I’ve had a feeding tube for 4 years now and I’ve definitely noticed a decrease in illnesses since getting it. I’m attributing it to greater nutrition, more calories, & less aspirating. I still eat regular food often, so the aspirating can’t be too big of a deal. When I do think I’m getting sick, I immediately pop a Cold Eaze into my mouth & use Zicam religiously when I get a cold!