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preacherman

Distinguished member
Joined
Jan 24, 2016
Messages
109
Reason
PALS
Diagnosis
04/2016
Country
US
State
IA
City
Thornburg
My wife and I have recently moved and we have had to change clilnics.
I have not been impressed with the new clinic and have been trying to figure out what has really been bugging me about the new set of doctors I am seeing....

The old clinic I went to, I shared one of my hobbies with the head of the clinic.
I grow and propagate different strains of tobacco (I find different strains have very differing effects and differing therapeutic values).
She thought that was very interesting and was very encouraging (she obviously didn't care anything for tobacco... but that I still had some particular interest in a hobby).

I told her that I didn't know if I would be able to do it this next year.
Her reply, "When you don't think you can do it is when you won't be able to do it."


And now, this new clinic:
I have weakness in both ankles and after walking a while, they get very tired and sore and it is difficult to walk the next day.
I have 2 AFOs and 'try' to use them when I am out and about.
I was telling the doctor that I really would like something to use around the house... I did not want to wear the AFOs when I was just going to be sitting around the house; and I have, in the past, had a nylon lace up ankle brace which helped a lot.
I asked him for such braces... his reply,
"No, we want you to wear the AFOs all the time."

But I don't want to wear the AFOs just sitting around the house; they are very restricting and not comfortable to wear all day, but I would wear the nylon braces pretty much all the time when I am just around the house since they are comfortable and not so restricting.
Again, "But we want you to wear the AFOs, there is no reason to have the nylon braces";
and that was the end of that.
My comfort and my wishes obviously meant nothing to him... but boy, when it comes to an advanced directive... they seem quick to accept your wishes for a DNR and such.

The next doctor (at the new clinic): I am starting to have hot spots if I have been sitting in the PWC for a long period of time. I asked her for a sheepskin for the chair because of these hot spots.
She wanted me to show her the hot spots so I did.
I wear bibbed overalls most of the time (as i have done for many many years), and one of the straps was rubbing my back.
Her reply, "You don't need a sheepskin; It's time to stop wearing those clothes and get some loose fitting sweats or something."

Now, these are just little things; and I can afford to buy my own sheepskin and I can afford to buy the nylon braces (though they are kind of expensive).

That is not the point.

The first doctor's attitude (at the old clinic) was, basically, that I should continue to do whatever I enjoy doing, and whatever will make my life more normal, and that when I decided that it was time to give up.... then that is when I am defeated.

These are words for life... terminal illness or not.

The new clinic, what I am hearing (this is not what they said, but what I am hearing):
Look, your life is changing and there is nothing left you can do about it, so you might as well just get used to it and get ready to roll over and die.
And by the way, don't try to think that you would know better than us what is good for you.
 
I don't know what type of ankle supports you have, but if you have evidence/experience that shows them to be just as effective in preventing tripping, that is fine. Just be certain that your decision is based on safety, not denial or plain old stubborness! AFO's are clunky and not particularly comfortable, but they are effective. A fall very often causes injuries far more than just uncomfortable, disabling at a time when you could still be walking, and with long lasting effects.

The advice on clothing and sheepskin is absolutely correct. The straps on your bibs have to go, and that is a very, very minor step in adjusting to the realities of ALS. Sheepskin doesn't compare to pressure relief provided by a ROHO air cushion or Jay gel cushion. Good quality sheepskin (research before you buy) is expensive and of short term help. If money is an issue, skip the sheepskin and get the cushion.

There are differences between clinics, and making your own decisions for your own comfort and lifestyle is important, but so is accepting the advice of people who have dealt with ALS (second hand, but still have seen a lot of it). It is hard to believe they want you to roll over and die when they are recommending the things that will keep you safe and prevent complications as ALS progresses. They wouldn't be working at the clinic if they didn't think they could make life with ALS better. Of course, the way they present the information is important, but after having had to argue with and convince nearly every patient they see, well, they have to begin to wonder why people show up only to resist help. I bet they see some really severe cases of yahbuts. As in "The straps are causing pressure that will lead to pressure sores." "Yah, but I have always worn bib overalls!"
 
I don't know what type of ankle supports you have, but if you have evidence/experience that shows them to be just as effective in preventing tripping, that is fine. Just be certain that your decision is based on safety, not denial or plain old stubborness! AFO's are clunky and not particularly comfortable, but they are effective. A fall very often causes injuries far more than just uncomfortable, disabling at a time when you could still be walking, and with long lasting effects.

Diane;
You have very good points... but you kind of missed my point. I'll start with this one;

As I mentioned, these are small things in themselves... and yes, wearing an AFO is probably the safest thing to do.
However: yes, it may just be stubbornness on my part, or perhaps an unwillingness to accept the inevitable, or whatever.
My point to him was that, first, I am not willing to wear an AFO all day around the house; and I would like some sort of alternative for just lounging with the occasional trip to the bathroom or kitchen.
I am not talking about being out and about doing any amount of walking around; just being in the house... casually, sitting around and whatnot.

With this information in mind, he has two choices... realize my (perceived or not) stubbornness, explain his position, then talk about alternatives etc.
Or...the one that he chose: "This is what it is and that is the end of this conversation".

In my opinion not very caring.

The advice on clothing and sheepskin is absolutely correct. The straps on your bibs have to go, and that is a very, very minor step in adjusting to the realities of ALS. Sheepskin doesn't compare to pressure relief provided by a ROHO air cushion or Jay gel cushion. Good quality sheepskin (research before you buy) is expensive and of short term help. If money is an issue, skip the sheepskin and get the cushion.

Again, you and the doctor are both correct as far as the inevitability of the change....

Not so much about the 'minor step'.

There was a conversation a couple of months ago about falls... the original post mentioned 'stubbornness'.

My (and another members) point was that perhaps it is not just about 'stubbornness'.
Perhaps it is just about trying to hold on to even the 'small' things.

Yes, the clothes will have to go.
But they do not have to go today or tomorrow.
There are still things that are available that can help keep life normal for a while.

The doctor's opinion: 'Just lose the clothes'.


There are differences between clinics, and making your own decisions for your own comfort and lifestyle is important, but so is accepting the advice of people who have dealt with ALS (second hand, but still have seen a lot of it). It is hard to believe they want you to roll over and die when they are recommending the things that will keep you safe and prevent complications as ALS progresses. They wouldn't be working at the clinic if they didn't think they could make life with ALS better. Of course, the way they present the information is important, but after having had to argue with and convince nearly every patient they see, well, they have to begin to wonder why people show up only to resist help. I bet they see some really severe cases of yahbuts. As in "The straps are causing pressure that will lead to pressure sores." "Yah, but I have always worn bib overalls!"
.

I am certain that they do not want me to 'roll over and die'.
I am talking about their actions and attitudes and people's possible perceptions of these actions and attitudes.

And yes, I am sure that they want to keep me safe.
With that thought, though, I am obviously (stubbornness or whatever) not going to wear the AFOs around the house all day long.
I made that clear to him.
Wouldn't the nylon braces be better than nothing?

And again, I can buy my own nylon braces...

The straps on my clothes?
Same story... change is inevitable... but just not today; not while there is another option at my disposal.
And I can buy my own sheepskin.

I wonder what the doctor who insisted on the AFOs would think if I told him I plan to propagate and grow tobacco this year?

(Though I will probably be wearing the AFOs while doing my gardening... if, God willing, I am still able to do gardening by then)
 
Preacherman, I understand what you are saying and agree that the clinic should help you live your life as you see fit, but they live in a "managed risk" world and you don't. Clinics differ in that respect, no doubt. It can be driven by the institution they are housed in.

If a strap is rubbing your back, sheepskin between the strap and your skin may indeed avoid the hot spot, and a Roho back cushion, if you don't have one, might help as well. If not, there are other options. A pressure-relieving seat cushion like Roho, as Diane notes, is non-negotiable but you know that.

If the clinic does not want to help you with nylon braces, I'm sure an orthotist in your community will be happy to.

Best,
Laurie
 
Preacherman,

I can totally relate to what you experienced. That is exactly why I changed clinics and finally decided that my local neuro will serve me better. He specializes in pain management and I am only his third ALS patient but he goes out of his way to get my medical equipment as needed and is always there for me. The big bonus is that he is less than 10 miles away. He focuses on quality of life which includes minimizing pain. He also is very receptive to alternative treatments, diet, supplements and total health. I wish I had made this decision a year ago.

I ended up buying my own spirometer so I can do pretty complete pulmonary function testing from home. It has its own computer program. I see no reason to sit in Jacksonville for a whole day and take the two hour drive back and forth when I don't learn anything new from the visit. I will still go but not as often.

I understand the safety issues in your discussion but I also understand how important it is for comfort and doing the things you want to do. I'm more about quality of life than quantity of life, so it's only my opinion.

Regarding the sheepskin. Get some regular sheepskin and that should work. I know several PALS in my local chapter said it added comfort when nothing else helped, especially on the arms of their chairs. I went all out and ordered medical grade sheepskin from New Zealand and it was a huge mistake. I can't get the smell out of it and it cost me $600 for a hospital bed size. After the remodel, I'll wash it once again and air it out better but, for now, it's packed away.

I cannot wear AFOs because can still stand on my toes and heels. The AFOs make it harder for me to walk, not easier. However, my ankles hurt a lot and are very weak. I tape them up and walk in sketchers or other sneakers that are flat to the floor and do not turn over. My $150 running shoes became dangerous because they were too high and I twisted my ankles in them. The sketchers, for now, work. I wash them to keep them tight on my feet and wear thick socks. If I'm going out I tape my ankles or use different soft ankle braces and, so far, it works.

Keep your hobby up as long as it gives you joy!

You remain in my prayers.
 
Brian does not wear AFO's around the house at this point. For one thing, his right foot can still do both heel and toes stuff fairly normally, but just tires sooner. So the AFO's are saved for out and about. You just have to think about balancing your comfort and your preferences with your safety, and as some have said here the clinic is just in the risk minimizing business.

I too was a little creeped about by the sudden appearance of the DNR/DNI chat, but they are just trying to help you plan and know your wishes.
 
Preacher man you are not alone. Brian was very resistant to change until he had a nasty fall in the house. My only suggestion is if you will not be wearing the AFO's, at least use a walker/rollator in the home to be sure you are balanced and can support you should one of your feet not cooperate with the program.

I agree that while the clinic is meant for risk management at times, the way the approach it can make all the difference. Ours was always like your first.

Hugs,

Sue
 
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