Status
Not open for further replies.

bright_future

New member
Joined
Nov 12, 2013
Messages
5
Reason
Loved one DX
Diagnosis
08/2013
Country
US
State
CA
City
Moreno Valley
Hi, all -- My father, 60, was diagnosed with PLS this past August. The disease has progressed to the point where he has no functionality in his legs and declining strength in his arms, hands, and trunk. As I'm sure most of you experienced, he was led along for years with incorrect diagnosis after incorrect diagnosis. Since being diagnosed - particularly with the understanding that he will not be able to walk again or improve his strength through therapy - he has had a hard time adjusting, both mentally and physically.

I'm sure I will have more questions as time goes on, but my first is fairly practical: what tips does anyone have for someone who is essentially wheel chair-bound, fairly immobile, and bed-ridden for most of the day? His primary problem seems to be shifting from bed to wheelchair, from wheelchair to toilet, from toilet to wheelchair, from wheelchair back to bed. He's fallen twice and has built a bit of a mental fear of it happening again. This issue also affects his diet because he wants to avoid using the restroom at all costs so he avoids eating - obviously not a good thing. Any medical equipment that might help? Mental tips?

Beyond that I'd be happy to hear any other general tips some of you might have. Thanks for your time!
 
In the forum there is a section called "Tips, tricks and gadgets". It is full of information that is very helpful. Clothes, beds and equipment. Have you been to a als clinic? Most have loan closets that loan out equipment.
 
Ah, thanks for the directions. I went straight to the PLS forum, so I didn't even think to look at the ALS forum list.

Not yet. I live in Southern California while he lives in Northern California, so I haven't been able to make any local contact with clinics. I'll do a little looking around and see if I can pass some information to family up north.
 
I joined the MDA and they paid my co pay and they are there if I need any equipment. I use a cane now and hope that is all I will need. I get regular emails about events, medical trials, ect... they will be a great help.

Good luck and very sorry you had to join the club. You are very welcome here and you will find wonderful, caring, intelligent people here. If you post your questions in the tips thread you might get more people to answer. But if you are uncomfortable doing that just reading will give you a lot of info.
 
two things,
1. his doctor should be able to prescribe for an occupational therapist to come in and give ideas specific to the home and his needs.
2. I have a lot of trouble closing doors behind me when in the wheelchair, the door is swung away and I need to reach way out and pull it shut, so I took a short piece of rope and tied a slip knot in it and attached it around the door knob. then took a 4-5 inch long dowel rod and drilled a hole in the middle big enough to slide the end of the rope through and tied a knot in it. placed a small nail in center of door. As I go through the door I grab the rope and once I'm through I just pull and then drape the rope back over the nail. This keeps the rope and dowel rod from interfering with closing the door from the other side. I fastened a matching rope to the other side for ease of opening door. the length can be adjusted to suit his needs.
 
Thanks for the info! The occupational therapist seems like a must. His current residence isn't really equipped to handle his situation at the moment. I have a feeling that he's going to need a major overhaul in his living space if he wants to eliminate most of the hassle he experiences performing basic activities. I'll do some digging on the ALS forums and see if anything comes up.

Is there any consensus on progression? Is it an "all roads lead to losing control of facial muscles and swallowing" or do some cases never make it that far? Most of the sparse internet articles I've read on the disease don't really have anything that is specific related to progression outside of general directionality. From the few posters I've read on this forum, it sounds like many people still have some mobility. I'd be interest to hear experiences from people around the stages my father is experiencing - i.e. no leg control, weakening trunk, hands, and arms.
 
Progression is highly, highly individual. On the PLS-friends mailing list, there are 30 year veterans of this thing who can still walk with a walker and are just now getting to the point where botox injections aren't working for their voice anymore. Your dad could plateau for a decade and that wouldn't be strange, just living at the symptoms he has.

From what you describe, I was where your father was in late 2009/early 2010 in terms of progression. Again though, we are so individual. When I hit that point, I had been a manual wheelchair user for 4 years. I had learned all the paraplegic-style wheelchair tricks, so for me it was just an adjustment to quadriplegic-style tricks. But if there is anything you want to ask, feel free to send me a visitor or private message. (Prognostically, my condition has gone wonky, so I can't be any help there. I'll let you know when the docs let me know, heh.)
 
I am the same age and have similar symptoms. I also found transferring from a power chair difficult. I have a GoGo travel scooter that is much easier to make transfers. I have my toilet setup with this an Adjustable Toilet Safety Frame from Amazon. It is secure.

Steps:

1. Using scooter I back into toilet area about a foot from toilet.
2. I turn seat 45 degrees toward toilet. It locks at 45 degrees.
3. Push up using armrests.
4. Put left hand on left toilet seat handle then right hand on scooter handle bar.
5. Then I swivel around 40 degrees and bend knees and sit down. I have a mat in front of toilet to make swiveling easier.

I use the reverse technique to get back on.

I have found this technique useful in getting into my lift recliner, bed and Permobile chair. I use my PWC all day and only the scooter in the morning and night. MDA has loaner scooters.
 
My post got edited. The full name is this


Adjustable Toilet Safety Frame-NA - Each 1 by Invacare Supply Group

You want the part that raises the toilet seat up.
 
@Tokahfang: Thank you so much for the info. I have heard that symptoms can plateau for long periods, so my wife and I are both hoping my father lucks out on that front. I think everyone involved, including my father, are particularly concerned about the loss of speech and problems swallowing/eating. He always says that if he feels the way he feels today tomorrow, he's happy. The problem is that the disease that progresses so slowly that you don't really recognize the decline until you compare what you could do, say, six months ago with what you can do now. And since the symptoms are so variable and the general sample of legitimate PLS diagnoses is relatively small, it can be kind of scary accepting that no one really knows for certain how things will be over the next several decades.

@billbell52: That makes sense. What do you feel is particularly useful about using the scooter for transfers compared to your PWC?

Another question I'd like to throw out: how active is everyone? I realize this is going to vary significantly between those who are wheelchair bound and those who still have function in their legs, but I'm curious to hear how people have continued to lead productive lives despite the disease. My father is in his bed probably 23.8 hours of everyday. I really wish I could get him outside more for fresh air and sun.
 
Does he have a powerchair? The only time I could be said to have spent 23 hours a day in bed was when I was waiting for insurance to cough one up for me. The moment I got a loaner from ALSA, I was out my door and doing at least one thing a day, even if it was just buzzing around the neighborhood or reading a book in the sun. I also helped my sister watch kids around the house, started hosting again, and was generally as full of life as someone with fatigue can be. All it took was good wheels.

My wheelchair van, alas, should be rated in gallons per mile rather than miles per gallon, so sometimes I have to turn down social events due to the price of just getting driven there and back. But I still go out regularly enough that if I miss a Sunday church service people are calling to make sure I'm ok.
 
activity can vary from one day to the next. i go outside every day for at least a little while. use pwc when legs get too shaky, this can vary some depending on weather, how much rest i manage to get etc. one thing that is generally acknowledged with pls is that the you move around the slower it progesses. caution is advised here not to over do it. when you start to feel tired or shaky, sit down and rest. for me , the early morning is when i'm most shaky although it can occur at any time. if he is no longer able to walk at all, a physical therapist should be able to show him some exercises that will help. for me it is to sit on the edge of a chair, or lie flat, with the legs stretched out straight and tighten the legs muscles and hold that for a few seconds, repeat this 6 times, then rest and repeat 6 more, twice a day, he should however check with a therapist first. getting outside for fresh air and sunshine will help in so many ways, most importantly in the it helps the mental and helps the body to produce vitamin d.
 
@billbell52: That makes sense. What do you feel is particularly useful about using the scooter for transfers compared to your PWC?

The advantage of scooter transfers is the scooter handlebar. You have one hand on the item you are transferring to and the scooter handlebar.
 
@Tokahfang: No, he still has a manual wheelchair. I think he's about due for an upgrade, particularly since his hand and arm strength are waning. He's not terribly social to begin with, so I'm sure there really just isn't that much to do even if he did have PWC. Still, I'd like him to get a change of scenery every now and again. As dalvin mentioned, I'd like to see him just get some sunlight and fresh air. He has a patio, but I think he's still just trying to get over the transfer issues with going from bed to wheelchair. Trying to get him in an optimal environment that suits his needs is one of my main concerns.

@dalvin: Yeah, I think he needs a physical therapist. I think he might be under the misconception that since there is no reversing the progression, he might as well not try - or at least try less. Doing some regular exercises to maintain what he has would be great. He does a little bit already, particularly resistance bands attached to his door to work out his arms, but I think a therapist could put him on a healthy regimen.

@billbell: Thanks for the tip. I'll keep that in mind as we're getting him set up with the proper equipment.
 
Ah, yeah, if he doesn't have equipment that meets his needs and abilities, that will be an artificial sort of extra level of disability in itself.

What are his hobbies, if he's not a social guy? Perhaps we can brainstorm a good way for him to get back to some of them. Quads can do a lot, it just takes more specific setup and investment. Quads hunt, handcycle race, all sorts of things you wouldn't imagine them doing. Some of it will be too expensive for a progressing PLSer due to the equipment not being usable for long enough to amortize the cost, but if you give us some info we can try.
 
Status
Not open for further replies.
Back
Top