First post on this forum

WardT

New member
Joined
Jan 3, 2020
Messages
4
Reason
PALS
Diagnosis
06/2019
Country
US
State
VA
City
Woodbridge
My diagnosis was last June, so I have been living with this for a while. Mine started with leg pain during the night and then a fall due to foot drop in June 2018. After that, I noticed a lot of fatigue just hitting golf balls and going for a walk. I almost got surgery for spinal stenosis, but fortunately I had a visit to a neurologist about a year ago and she recommended the EMG test and putting off the surgery. I can still walk and climb stairs with difficulty, but mostly use a rollator to get around these days. Now we are considering how to deal with the next chapter in this journey.
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
3,407
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
City
Southern Oregon
Hi Ward. Sorry to welcome you here. Since you are leg-onset, you do have to avoid falling and prepare for the eventuality of a power wheelchair. The next step is to get your estate in order and evaluate your home for any possible remodeling you may need to do.

This post is helpful: Resource - If you've just been diagnosed - what to do now?
 
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JimInVA

Forum Supporter
Senior member
Joined
May 29, 2014
Messages
809
Reason
CALS
Diagnosis
04/2014
Country
US
State
VA
City
Poquoson
WardT,

I'm sorry to have to welcome you, here... but here we are, nonetheless. I hope you find this a safe place, a knowledgeable place and most of all, a friendly and helpful place. My wife, Darcey, also begin with her limbs being affected. At first, she was feeling some discomfort in her back. She'd have her foot not want to completely clear carpeting and would nearly fall. And in November of 2012, she suddenly found it difficult to walk two blocks to meet friends for dinner.

You will find that things happen in stages. We chased symptoms of an early misdiagnosis for over a year before she was correctly diagnosed with ALS. As has already been said, falls are to be avoided at all costs. We were lucky. Darcey had two falls that could have been bad. Fortunately, I was there for both of them. And while I could not stop the fall, I was able to lessen the force and impact of the falls. Some bruises to body and heart... but no breaks. It is good to hear that you're using the rollator.

Looking back, it was "fear" that often guided Darcey during the stages of progression. By "fear", I mean it like this:
  • When she noticed that she was having difficulties pressing the brake and wasn't slowing as quickly as she should have, she elected to quit driving. That was a tough decision. Giving up driving was giving up a certain amount of independence. But she was determined that no one else should suffer the obvious hurt that her continuing to drive would ultimately bring. I remain extremely proud of her for that early decision.
  • She moved to a walker and then to an electric scooter when things became difficult or tiring. And she did so before any falls occurred.
  • She moved to a sling and hoyer lift when her legs could not safely bend, turn or support her as they previously had.
My encouragement is to stay aware of your own body and capabilities. When your ego says "I don't need that stinkin' thing"... but your head says, "I'm really afraid that I'm close to falling"... then let the head rule and use that stinkin' thing (whatever that might be at any stage of progression).

It is good to look ahead and to plan for what comes next. If you can stay ahead of things, you'll be that more prepared and better off. Get behind and "catch up" can sometimes be difficult. And nobody can tell you how quickly anything is going to happen. It can change from day to day or month to month. Darcey's early progression was slow and then rapid. Her neurologist advised her in March of 2016 that she was within 6 months of life's end. She smiled at the doc and said, "Thank you for that information. Unfortunately, I still have things to do and that doesn't work with my personal agenda." Her progression again slowed. She can no longer move much of her body and has very little voice left, but she's still quite with us. She uses her eyes to operate her computer and continues to make havoc on the internet and within social media.

Collectively, we are a huge resource. Ask questions and you'll receive answers. You likely won't be asking anything that hasn't been asked before or something that one of us hasn't already experienced. And don't ever feel that you have a quota on how much you can ask or share. I hope you will come to understand... and I did very early in my appearance here... we are ALL family because of the experiences that we share, together.

Welcome, WardT. Welcome!!

My best...

Jim
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,686
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Hi Ward,

Sorry about your diagnosis but welcome to the forum.

Jim gave you some good advice. I fell once before I was diagnosed and I've turned my ankle enough to do some serious damage. I found that getting in the proper sneaker helped me a lot. Falling can really do a number on you so please be careful.
 

WardT

New member
Joined
Jan 3, 2020
Messages
4
Reason
PALS
Diagnosis
06/2019
Country
US
State
VA
City
Woodbridge
Thanks for the advice, Jim and the welcome Kim. This is useful information.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
8,154
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Welcome, Ward, while sorry that you find yourself here.

Best,
Laurie
 

Kristina1

Senior member
Joined
Jan 26, 2017
Messages
791
Reason
PALS
Diagnosis
03/2017
Country
US
State
MA
City
Grafton
Sorry to welcome you here. You'll find good support here.
 

Don

Member
Joined
Dec 24, 2019
Messages
11
Reason
PALS
Diagnosis
11/2017
Country
US
State
MA
City
Northbridge
<quoted text removed>

Hi Ward, like you I had foot drop early on before I was diagnosed and fell frequently. My legs weakened but I still managed the 15 stairs to go to bed. I was fortunate the first time I fell down the stairs from the 7th step and was only bruised. The second fall caused a concussion and 11 stitches in my head. I am stubborn and insist on sleeping in the same bed with my wife so I got a stair lift. It was expensive but the benefits are well worth it. I assume there is an ALS Association chapter in VA., make sure you have a contact there as they can help with all sorts of things including power wheelchairs and other home remodeling advice. I am on the last days of using a rollator as my arms and legs have weakened so much I have trouble standing upright with the walker. I push myself a bit to try to continue with as many activities as possible but these last few months have been very difficult and my progression seems to be speeding up. Be careful, think safety and act safely.
 
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WardT

New member
Joined
Jan 3, 2020
Messages
4
Reason
PALS
Diagnosis
06/2019
Country
US
State
VA
City
Woodbridge
Thanks all. Don, your case sounds similar. I plan to get the stair lift soon. I went to an ALS Assoc. support group meeting yesterday and met some other PALS in the area.
 

inningparsnip

New member
Joined
Mar 19, 2020
Messages
3
Reason
Loved one DX
Diagnosis
00/0000
Country
US
State
PN
City
Imperial
Welcome Ward, I hope you get all the support you need from this forum too (like I have).
 

beauty4everyone

Distinguished member
Joined
Jul 5, 2018
Messages
220
Reason
PALS
Diagnosis
04/2018
Country
US
State
GA
City
Someplace
Hello, Ward🤠,
Thinking and planning ahead brings mental comfort. Renovating 2 bathrooms for "roll-in" showers, widening 2 doors, bedroom floor with
1584736997264.jpeg
water resistant vinyl flooring for P. Wheel Chair and Lift usage, large front deck with ramp for ease of access, replacing door hinges with Easy-Fold type
1584738327826.png
to provide up 2 inches extra space, additional electric outlets, etc., completed just before I needed them made a big difference.

The ramp/uncovered deck was first. The latter, taking 8 months, finished just in time. I couldn't walk anymore. Everything has helped my CALS tremendously. Refer to: TIPS, TRICKS, GADGETS for renovation suggestions for the above and many other things.

Sorry to welcome you here - but many caring people are helpful. Check out: COMEDY, HUMOR & JOKES. and STORIES OF HOPE. In spite of circumstances, we all need something to smile about and LIFT OUR SPIRITS.

Take care and may Blessings abound - B :cool: .
 

Tkthiede

Active member
Joined
Feb 25, 2019
Messages
41
Reason
PALS
Diagnosis
01/2019
Country
US
State
WY
City
Cheyenne
Sorry to welcome you to this forum but there are great people here to help you along your journey.
Tammy
 

SpeedyMarie

Member
Joined
May 24, 2019
Messages
28
Reason
PALS
Diagnosis
08/2019
Country
US
State
TX
City
Houston
Hi Ward, my heart goes out to to you. You are not alone, great advice above this forum has really helped me
 

wmilo

Active member
Joined
Feb 14, 2018
Messages
48
Reason
PALS
Diagnosis
10/2017
Country
US
State
PA
City
Zelienople
Hi, Ward. Welcome to the forum but sorry to meet you here. This is a great community, with many knowledgeable and compassionate members.

Hope you have a slow progression.
Best regards,
Bill
 

WardT

New member
Joined
Jan 3, 2020
Messages
4
Reason
PALS
Diagnosis
06/2019
Country
US
State
VA
City
Woodbridge
Hello, Ward🤠,
Thinking and planning ahead brings mental comfort. Renovating 2 bathrooms for "roll-in" showers, widening 2 doors, bedroom floor with View attachment 18727 water resistant vinyl flooring for P. Wheel Chair and Lift usage, large front deck with ramp for ease of access, replacing door hinges with Easy-Fold type View attachment 18728 to provide up 2 inches extra space, additional electric outlets, etc., completed just before I needed them made a big difference.

The ramp/uncovered deck was first. The latter, taking 8 months, finished just in time. I couldn't walk anymore. Everything has helped my CALS tremendously. Refer to: TIPS, TRICKS, GADGETS for renovation suggestions for the above and many other things.

Sorry to welcome you here - but many caring people are helpful. Check out: COMEDY, HUMOR & JOKES. and STORIES OF HOPE. In spite of circumstances, we all need something to smile about and LIFT OUR SPIRITS.

Take care and may Blessings abound - B :cool: .
Thanks, very useful information. Will look for the hinges as this may make bathroom door passable.
 
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