Not open for further replies.


Distinguished member
Aug 10, 2005

Dad is doing good. His gait is slow and just real sloppy but he still goes to work, drives, goes shopping, and does his own thing.... He is a bit worried lately and it is stopping him from walking as much as he used too. Two weeks ago as I stressed on the other board dad fell and now he is hesitent he has been driving away from certain stores if he has to walk to far cause he does not want to fall. If he sees a Handicapp spot and a cart he will go into the store for hours and shop... However, no shop no can do... The new thing is this whole issue when he gets up his leg gets this pain that shoots down to the shin and then goes away slow within two minutes. While this is happening it is tight and he can't put weight on it. The strange thing is that if he takes two advil a day this does not happen. Does anyone have any opionion on this?

Ok now the advice on the shoe. Dad's biggest loss of strength has been in his ankles and this is the reason for his foot drag and horrible gait. Can anyone suggest any type of shoes or boots that would be good for him?

The other issue is this weekend we have a party to goto and we are all dreading it. We are so worried about how dad will do getting into the party and seeing everyone. He really does not like when people pitty him. It really, really bothers him and then on top of that we are worried that the weather is going to be bad and this will also make things worse for him. I was wondering if others that have this disease can tell us what we can do to make dad feel comfortable tomorrow at this party so he can have fun and not worry about what others think or say...

Thanks in advance for everyones words of encourgement for you never let me down.

Hi Jen:
I hate to just say that your dad is going to have to develop a sense of humour (sorry humor) about this. There are always going to be people who will express pity or worse yet are downright rude! Parties may be a great place for your dad to show that, while he is struggling a bit, he's still vibrant and well on the inside! When my wife got to the point where she couldn't talk anymore, some people would yell in her ear and verrrrry slowly to get their point across! She had a canned speech on her laptop that she added names to. It not too graciously, explained that her ears were working very well. She found her funny bone very early. Your dad will too.
Don't know much about ankle support, I used to get mine taped for football though... got adhesive tape...?

Good Luck
Hi Jen

I have heard others talking about getting AFO's (small thin plastic braces) to wear inside their shoes that hold the foot up and add extra support. LB's doctor wanted him to get some but LB chose not to. I think they would probably help a bunch.
Hi Jen,
This crazy disease! It is hard to know which is worse, someone pitying you, or someone saying "oh, you look so good, you can't have ALS, you can walk......".
I don't like the pity part, because then I will probably start to cry!
But, like others say, you do need to develop a sense of humour and a thick skin.
I agree that if your Dad shows up at the party and people see that he is doing well, it might make them react better. I know it is hard, sometimes it is easier to stay home, but we can't do that.
I use a small white board and marker to do most of my communicating. I went to a physio therapist last week, and after he had introduced himself, I wrote that I could not speak because I had ALS. He gently reached over and took my board and marker and started to write his answer back to me:)) We both had a good laugh when I took the board back and wrote "I CAN hear".

When you mentioned your father's pain going away with Advil, my doctor reminded me at the last visit, that just because I have ALS does not mean that I cannot have other things wrong as well. She sent me for a neck x-ray to make sure that some pain and stiffness I have is not caused by arthritis. Maybe the anti inflammitory in the Advil your Dad taking is helping another condition? Just a thought.
Sorry for the long reply, guess I am on a roll tonight!
Hugs and prayers, Leah
Hi Jen. A friend of mine that has a possible diagnosis or probable (no one seems to know for sure) of ALS has a foot problem and he has a cloth (apears to be Canvas) with support stays in it and fits his whole foot except the toes. It laces up the front and he can wear most any kind of shoe with it. I think he got it from the OT or Physio. I'll ask him about it Sat. in the day if he is around.
Thank you every one for your words of support and I agree that the entire family needs to get a sense of humor about this whole thing...

Well it seems that the issue will have to be discussed on the 10th when dad goes to see the doctor and the clinic for the first time since his diag. in August...
Hi Jen, The first thing that went on me was my right foot and I was dragging it and tripping over even the smallest of things (like cracks in the sidewalk). I was sent and fitted for a drop foot brace, which is a plastic orthopedic device that goes from your calf under your heel and right out to the toe of your foot. The only bad thing about them, if there is a bad thing, is that they make your one foot about one size larger than the other. The good thing is that when you buy a pair of shoes all you have to do is tear out the bottom liner in the shoe and that actually gives you an extra size in that shoe. Also I have gone to sneakers that have the Velcro closures on them which makes it very easy to do up your shoes. I wear those exclusively now to heck with the vanity of trying to get laced shoes on! As my foot got weaker it became more and more of a problem to put my shoes on as my toes would double under and that sure lets you know that it happened as soon as you try to stand up. One thing that I have done is when I do get a drop foot brace made I make sure that they put a Velcro strap around my ankle which seems to hold my foot back in the brace. If you do not have a strap there your foot has a tendency to slide forward pinching your toes again. The first brace they gave me was an off-the-shelf drop foot brace, be very careful of these as it gave me a huge callus on my heel. Be sure to check his foot very often if he does get a drop foot brace because this can happen without him even realizing it. After that I had to have one custom-made where they take an actual cast of your foot and make the brace specifically to fit the person is made for. I keep getting reminded by my doctor when I complained of aches and pains that I'm getting older too and you can't just blame everything on ALS. Hope this helps,
Hi Jen. I checked with my friend and he bought the brace at a drugstore when his ankle started to feel weak before he was diagnosed.
Hi Guys,

We also had Henry fit for ankel and leg braces as his legs got weaker. They were plastic with velcro fittings around his calf, and his foot fit into a molded plastice piece that fit inside his shoes. These helped him for a long time and he was able to continue to walk fairly safely in them. We had these fitted in a clinic in London, Ontario. There are alot of devices out there that will help stablize anyone with any weakness in there legs or ankles. Ask your OT or you doctor for advice or places to purchase them or to find a clinic that will custom make some for you. Humour is so much a must with als. I found that when we went out and someone tried to shake Henry's hand I would lift his hand up to the person for him. Sometimes they were shocked, and probably wondering what I was doing, however, it got easier to explain as time went on, what the problem really was and what the ailment was that Henry had. We laughed over these situations because the look on some peoples faces was priceless. I know that sounds like a dark humour, but, you had to be there I guess. We laughed over the silliest of things, but still continued to go out and eat and to visit our friends and family for as long as we could. It was challanging at times, but well worth the effort in the long run. And, most important, Henry enjoyed it. Keep smiling, keep laughing, and keep fighting. I hope that your dad will enjoy his time out at the party. I am sure that he will not regret going once he is there. People are most compassionate and understanding when they find out that someone in their circle has als. Have a good time, and that is that.

Stay Strong, Carol
This is off the subject sort of but here it goes. It seems like everyone, except my LB, does good on outings. LB loved to go out to eat, movies and most everything until about the time his legs gave out. When he got his power chair I thought he would like to go again but he doesn't. Occasionally, he will want to go out and eat but when we get home he is exhausted and it takes him about 24 hours to get happy again. He seems both physically and mentally tired. Does anyone else have this problem? Do you have any idea what I might be doing wrong that causes this? I always let him choose the place we go and the time we leave home so I don't think its a timing issue.

Hello again everyone,

Thanks all of you for your advise and responses...

Well let me tell you that after all the worry that went on about this party dad ended up getting some type of something virus on Friday night. I was so scared that night cause dad was not feeling well at all. Fever, stomach ache, vomiting, caughing, reay stressed, not walking well at all, and in fact his walk was really off and he was so weak that it was scarry to me. However, not to be gross or anything but his muscles in the area for coughing, sneezing, and vomiting are good cause he did all of that without any problem :) Happy about that...

So needless to say we believe due to the time of year and just about everyone in NY having these viruses and colds that we could chalk this up to a 24 hour bug or something. However, a part of me wants to ask could it be that this has anything at all to do with ALS or just what it is a stomach bug, something he ate, or a cold? Should we react in a different way or just chalk it up to the norms of life in the winter?

So needless to say no party for dad but he will be at the big party when they get married and that is when the fun happens....

Not open for further replies.
< >