Kennedys Disease Community
Most Annoying Inconviences of SBMA

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01-24-2010, 07:19 AM
Pocatello Jim
Most Annoying Inconviences of SBMA
As I lay in bed this morning somewhere between sleep and awake, my head did a quick nod to the left. I hate this! And it got me to thinking what are the most annoying, inconveniences of having SBMA? Below, I will list my top three and I ask, "What are yours?"

3. "Dropping Things" I seem to be quite the clutz these days. Last night as I was getting ready for bed, somewhere between my back pocket and the Chest-of-Drawers, my hand decided to let go of my wallet. I hate that. Dropping things is doubly inconvenient, because it adds the necessity of figuring out how to pick the item back up.

2. "Forgetting Previously Reflexive Movements" The realization that movements your nervous systm built pathways for when you were a toddler and that you have been doing since then without conscious thought can no longer be done by reflex. The first real memory of this was 3-4 years ago. I was walking across a parking lot toward a 6-8 inch curb, when all of sudden; PANIC! I did not know how to step up onto the curb without losing my balance and falling. The last 20 feet of the walk was a series of calculations, how long is my stride? what foot will I step up on? is there anything to hold onto? How did I do this yesterday?

(Drum Roll Please)

1. "Head Nod" A few times a day, my head does a quick nod, to no one or no thing in particular. (Have I mentioned that I hate this!) Usually, I nod to the left, but occasionally to the right. On a good day, this happens 2-3 times a day. On a bad day, this happens 2-3 times an hour. And, it doesn't matter what I am doing, standing, sitting, lying down; watching TV, sitting in church, having a conversation, etc.

So, those are my top three annoying inconveniences. Would anyone else be willing to share theirs?

Pocatello Jim
01-27-2010, 04:06 PM
Jim, thanks for sharing. Yes, I remember well the times that I came to an "insurmountable" object (like a curb) and had to stop and consider my options. Now, I just avoid them altogether (a lot less thought and stress).

It is interesting how we evolve as the disease progresses. My recent annoyances include:

1. Losing the use of my left thumb and index finger. No, it is not totally gone, but they are becoming far less useful and always a concern when doing most anything requiring that hand.

2. Public restrooms - most are not really handicap accessible. What is accessible to some, is not accessible to others. Low commodes, only one handicap stall in a large theater or building, handrails that were designed for someone transferring from a wheelchair ... not trying to stand up with poor leg and arm strength.

3. My shower stall - I am becoming dangerous when entering and exiting my shower. I really have to hold on to make the transition safely.

If I thought about it, there would probably be several more, but at least you get the idea.
02-01-2010, 03:31 PM
Jim, could I use a portion of your #2 item in my blog. I am writing about muscle memory and your comment is a good lead in. Please let me know. Thanks
02-02-2010, 07:24 AM
Pocatello Jim
Sure thing Bruce. If it helps, please use it.

Pocatello Jim
03-08-2010, 05:19 PM
Well, I finished my chores for today and don’t have anything else to do, so I thought I’d read some of the forums, and maybe, answer one or two.

I suppose, the most annoying inconveniences for me are those that I took for granted; the things I used to do easily and without thought or effort.

3. Bending over to tie my shoes or pick up a piece of paper or bottle cap. Now, I no longer have the leg and abdominal strength to bend over and keep my balance if I don’t hold onto something. Of course, getting back up is another thing.

2. The macho manly things like opening jars and bottles, moving furniture or carrying in four bags of groceries at a time are out of the question without some sort of device or assistance.

1. Doing the “gentlemanly” thing of opening doors for ladies, is now avoided (this one also falls under one of my most embarrassing moments) because I don’t always have the strength to open some doors.

There is a bunch more I could list because it seems just about everything annoys me these days, -all things I used to do- but I figured I’d follow suit and just list the top three.
03-13-2010, 10:23 AM
Stan, thanks for sharing your thoughts. YUP, been there and couldn't do that.

Reference opening a door for the ladies, one of the funniest moments was in Seattle. It was summertime and the Chinese place we were going to had an exterior door and then a small entrance way with another interior door.

As I pulled on the exterior door a suction was formed between the entrance way and the interior. After initially not being able to open the door, I yanked hard and lost my grip falling backwards unto the sidewalk. Three young college students were walking by and asked if I needed a hand. With one on each side, they stood me up. After that, I was much more careful about pulling on doors.
03-21-2010, 01:16 AM
The most annoying inconviences of SMBA for me are still wanting to do things I can't, or at least shouldn't! Probably the most annoying is trying to overcome obstacles (well they now appear to be obstacles anyway), like curbs, steps, snow drifts, icy sidewalks, etc. Things that normal people don't give a second thought to! Still more often than not, I'll give it a try, like Danger is my middle name! I'm really hoping I'll find maturity before I fall ans seriously hurt myself, but if my life before KD is any indication probably not. Smiler
03-21-2010, 04:53 PM
Sask-Lizard: Thanks for the comment.

I wrote about some of these same issues in my Living With Kennedy's Disease blog. I am one of those people that will keep on trying until I do get hurt.
04-07-2010, 08:16 PM
Lori Ryan-Salopek
Most annoying for a female...guys that won't open a door for me cuz dang, I can't do it either! Lets not party together!!! Kidding! I know for my pa he could no longer carry a wine bottle to the kitchen and open it. When falling he could not get up, and trying to get out of a sitting position alone. That's when I bought him a chair with auto lift. It gave him back some freedom, but I wish they had those for toilets. I am annoyed when people think I am crying, or when they lean in towards me to hear me...or they fill in words where my voice cuts out which leads to miscommunication. My older sister just got kicked out of an adult care apartment because she is too high maintenance. She is diabetic, very weak, still smoking. I am not sure what her kids will do now. Her home is not at the point where she could go in and be safe. I would love to meet some of you KD folks in person. But for now thanks for writing, it makes me realize other folks are having difficulties, not just me. Cyber hugs to all!
04-12-2010, 10:25 AM
Bob Heitzman
... It gave him back some freedom, but I wish they had those for toilets.

They do - works great!
Power Toilet Aid

Easy-up also makes one.

email:rheitzman at gmail
04-12-2010, 02:22 PM
Bob, I agree. I have had my toilet aid for about two months and I love it. I just wish I could take it with me in the car and use it when I am out. Smiler
08-08-2010, 05:05 PM
Bob Heitzman
Originally posted by Bruce:
Bob, I agree. I have had my toilet aid for about two months and I love it. I just wish I could take it with me in the car and use it when I am out. Smiler

My most annoying is just that - noting being able to have a BM anywhere but on my robo-john. I don't have a care-giver so I can't use typical toilets. Even a folding commode chair at max height is too low for me now.

I haven't come up with a work around - suggestions?

email:rheitzman at gmail
08-08-2010, 06:07 PM
Bob, I totally understand. I carry a Tallette in a box in the car. I have had to use it a few times and the 5" increase in height is not perfect, but far better than any alternative that I am aware of.

If you find something mobile and better, please let me know.
10-30-2010, 11:00 PM
great topic!
My top three are:
1. curbs
2. curbs
3. curbs
I have what is known as "intentional tremor", which is when you get a tremor when someone else is watching. It extends to difficult walking situations -- I cannot navigate a curb or slope when someone is watching! Is this "intentional weakness"?
10-31-2010, 09:50 AM
AllanR, that is interesting. Intentional weakness. Perhaps it is because we are more self-conscious when someone is watching. Very interesting.