Hello and need advice

[Annabelledingdong]

Just wanted to say Hello,

I was diagnosed with ALS in December 2017. My symptoms started with right leg foot drop in October 2016. I use an AFO and walk with a cane. My left leg is showing signs of weakness and will be getting an AFO for my left leg as well, I think. Is it difficult to walk with 2 AFOs?

 

[ShiftKicker]

Welcome Annabelle-

Not a club people want to belong to, but filled with great people, lots of information, and plenty of support when you need it.


Fiona

 

[lgelb]

Welcome, Annabelle. Sorry you have to be here.

Given increasing weakness in both legs, you may want to start thinking about a wheelchair, discussing options with your clinic, etc.

Best,
Laurie

 

[KarenNWendyn]

Welcome Annabelle,
I have bilateral droop feet and have been walking with 2 AFOs and a cane since August. It can be done! Though I’m not likely to win any races.....

 

[KimT]

Welcome Annabelle. Sorry you were dx but glad you found us.

Start the wheelchair process ASAP. I sometimes takes 3-4 months to get one. I can still walk but I got mine last year.

 

[Annabelledingdong]

Thanks you all.

This disease causes me such distress at times. My story is similar to many here - I have been reading posts on this forum daily - first saw my practitioner in May 2017, appts with physio, neurologist, MRIs, neurosurgeons, etc. In December my husband decided it was enough and we went to the Lahey Clinic in Burlington Mass - the EMG clearly indicated ALS. I have been to a neurologist in Halifax who confirmed the diagnosis and am waiting for my first appointment with the ALS clinic. I have been in contact with the local ALS Society. I was wondering if it was worth the expense to get a second AFO so thank you for the response.

I live in a rural area, an hour and a half drive from the major centre in Halifax and ALS clinic. I am feeling abandoned by my local clinic - my primary care practitioner, a nurse practitioner, is off on sick leave and feel I am being shuffled between other doctors. I am taking Riluzole, but it caused nausea stopped for a while until nausea subsided then started again morning only for a couple of weeks. I took a second pill last night and was having a hard time falling asleep. Not sure if it's the Riluzole or just my state of mind.

I have my first pulmonary test in a couple of week.

Anne

 

[Chincoteaguer]

Hi Annebelle;

My wife was also diagnosed in December 2017. She also has foot drop on the right leg. She walked for 18 months with a brace and a walker (before diagnosis) but recently prefers our transport wheel chair. We just received a loner power wheel chair yesterday and got fitted for a new one. It will take about three months.

I am fortunate like many others who have found this forum. Everyone here advised getting helpful devices ahead of need. As a result we now have a breathing assist device (BiPAP), a Hoyer lift, a power wheel chair, and a feeding tube.

You are in a good place at this forum.

 

[KimT]

Anne,

It's hard living in a rural area with any illness much less ALS. I'm glad you're reading all the posts but try not to get overwhelmed. I found this forum before my diagnosis was certain and, by the time I was diagnosed, I had already learned so much.

Try to find friends/family who can do some of the work for you. Find someone who will be your best medical advocate.

Most of all, be kind to yourself. If you're up to it, do the things you love while you still can.

 

[frankb]

hi anne. welcome to this ship on which no one wants to sail. however, you will find your fellow passengers to be the most helpful of any group one can find. remember, no question is to small.

as for one afo or a pair. you will likely need to two afos eventually (at least i did) so why now get two at the onset? i have found that every trip that i can avoid is a blessing !

 

[Annabelledingdong]

Thank you again for your support.

Here is a small question ... my son graduates from University this year and my daughter will be marrying this summer. I would like to wear a dress and something pretty on my feet - at least for pictures.

Anybody have advice for nice looking shoes I can cram my right foot in? I have to admit that I have shed quite a few tears about not being able to wear any of the pumps in my closet - yes I can be vain, but am also willing to suffer to be beautiful. I know tears are mostly the result of the small losses I feel along this way.

A.

 

[KarenNWendyn]

My only suggestion would be to wear a dress or skirt long enough so that very little of the shoes can be seen. Or wear a nice pair of slacks and a beautiful top. I wouldn’t risk going without the AFOs.

I play in a symphony orchestra and did not have nice black shoes that fit my AFOs, so went AFO-less and tried to be “careful “. Well, the first concert where I tried that, I took a hard fall walking from the parking lot to the recital hall—- landed flat on my face and had to go to the emergency room for sutures to my chin. I was very lucky I didn’t fracture my jaw. I ended up buying a pair of larger black leather New Balance shoes that work with my AFOs. They may not be pretty, but I’m safe!

 

[Livealot]

Welcome to the most exclusive club in the world , an one no one choose to join. If there is an ALS chapter near you they are very helpful.They brought us literature to read , and many contact #..They offered to make phone calls for us.I've called them many time's , and they always call back.Best of luck to you.

 

[wishmobbing]

Dear Mrs. Dingdong, I feel you on the little things and the vanity. My PALS is incredibly patient with most anything but having his hair messed up and not being able to brush it really bothers him.

I have no advise on the shoe front other than: be safe, smile like a million dollars and noone will look at your feet.

Welcome, Annabelle!

 

[Nuts]

Dear Anne, Wellcome to your new second home. I'm sorry you had to join us, but you already know, it's a great group.

My husband was never able to walk safely in the AFOs. He said they made him more unstable. We did use them for a time in the chair to support his feet.

Don't get rid of your pretty pumps yet. I know one PALS who rocks her shoes now that she no longer walks on her feet. If your feet can still fit in them comfortable once you are in a wheelchair, you can dress them up all day long. My husband's does curled early on and rubbed against the top of shoes. Between that and the swelling, he wears only slippers. Everyone is a bit different.

Please get the chair early. You don't have to use it just because it's there, but it will be safer.

As for the pictures, tell the photographer that if your feet show in the photo his/her head will be on the top of the cake at the next wedding! Park a small child, dog, or bunch of flowers in front of them!

Again, welcome.
Becky

 

[Narrowminded]

Hi Annabelle, welcome to a slice of heaven here on earth.

Brian did walk with AFO’s. We went to the shore store and found good tennis shoes that fit with them. He had to go up a size and find wide, it they worked. Again tho everyone is different.

Hugs,

Sue