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NeedCourage

Active member
Joined
Feb 22, 2014
Messages
73
Reason
Lost a loved one
Diagnosis
12/2013
Country
US
State
PA
City
SW
Hi again - You were wonderful to answer my first posting and I'm so grateful. I have another question and am having trouble formulating it. I know you will be kind if it's ? (fill in blank).

Like all PALS & CALS, I have been reading voraciously and now have lost any semblance of sanity! So many things to think about and I appreciate the oft stated "do it early" remarks regarding preparedness.

My darling husband is 76; he has always been able to out work, out run, out fish or golf even those 40 years his junior. So far, his only noticeable symptom is an occasional slight limp after a 12 hour work day. (He is retiring very soon.) Anyway... The EMGs and NCVs and MRIs looked worse than he does, and so I'm waiting for the big fall. Here is my question:

Would any of you be willing to share how quickly you went from almost imperceptible health problems to crutches or canes or whatever your first real limitation was. I'm afraid we will wake up one morning and his legs will be useless. Can it happen really really fast like that? I know there is no answer, but there is 'experience' and it would just ease my mind to know what others have gone through.

Questions whirl around in my mind such as should he quit right now or wait? Should we try to sell our two story house immediately and a find a single floor home? and it seems lots of you use vans. Is it a necessity? We will be living on two modest Social Security checks; is it even possible? I could list dozens of considerations just waiting out there - so I want to be smart about this but not make us both crazy.

This is the most scary, lonely, humbling experience I can imagine. Blessings and love to you all as we walk this path - filled with potholes !

Warmly, Nancy
 
Need Courage: You and he are wise to focus on this disease early, but you might be surprised to learn that all cases are different. Some folks have minimal symptoms for a few years, but others experience every symptom within a single year. My wife lasted 8 months from first foot-slip to total locked-in death. Forgive me for being blunt. I'll bombard you with information now, in the hopes of helping ease the burden of ignorance, and give you some confidence that this disease can be managed. Not cured, not treated, but it can be managed.

Krissy noticed a slight foot droop and she fell. Being a doctor herself, and knowing that there is a cause to everything, she immediately saw a neurologist and was definitively diagnosed with ALS by the EMG. We went to Mayo for advice: an excellent decision.

She was granted SSDI and Medicare A immediately under the SS Compassionate Care program. We enrolled in Medicare B as well. As you can imagine, there are going to be some urgent and emergent problems coming your way. So you want to be ready for them financially.

Being a veteran, Krissy applied for and received tremendously valuable VA benefits that lightened our load. Is he a vet?

The next month, Krissy needed a cane. The next month, a walker. The next month, a wheelchair. Within a few months she was confined to a hospital bed which we had set up in the living room. I slept next to her. I rarely slept more than an hour, because toward the end, someone had to be sure the oxygen was flowing, etc. Our in-home hospice nurses varied by experience. Medical personnel will tell you they can do anything, no problem; but the fact is that very rarely has any medic seen anything like total paralysis.

Legal papers, life insurance, living will, etc are all important. At some point he won't be able to sign documents. Get a good elder attorney. The best guide to advanced directives is called "Five Wishes." Google it.

Eventually, bathroom is a problem. Someone's got to keep him steady on the toilet and wipe him. A wheelchair-accessible shower is needed. I gave her a shower at the YMCA handicap bathroom each week.

Attitude is paramount. We kept up our happiness, ate out, continued to live as much as possible. Love continued.

The question about the house is important:
All our doctors told her--three to five years. But when she left the room, I would quietly ask the doctor, look, I have to make plans, should I buy a house? Each one told me confidentially that she would be gone within the year. I never told her, but perhaps she knew.

About the van: On the one hand, it's $50-70,000. On the other hand, you'll sell it before it gets any real wear and tear. VA paid for our van, so the veteran question is important. You don't want to try to lift him out of a vehicle once a leg becomes useless. The van was a godsend, and our dealer was a wonderfully helpful person beyond compare.

It might even be possible to buy life insurance affordably, depending upon his job, without medical questions being asked. Do a cost-benefit analysis.

As to his heart medicines, I have only one thing to add. Remember that the real hell of this disease is that is takes away a person's choice. You can't choose to go somewhere, to eat something; in the end you can't even choose to take a deep breath. So for that reason, I let my Krissy have anything she wanted without question. Of course, a heart problem won't help, but in my personal view, he gets to choose how he'll live and die. Sorry, but I don't know a kinder way to say it.

Again, he might have such a slow progression that it doesn't affect him. The pulmonologist is the best guesser, since ALS victims typically die from a build up of CO2 in the blood after their lungs are affected. but don't be afraid of that, actually. Morphine relaxes the lungs so it's easier to breathe, and also relieves the emotional feeling of "air hunger" so there is no panic or fear. Fortunately, in Krissy's case, she progressed from the feet up.

After all this bad news, I can offer one thing of comfort from our experience. In Krissy's final days, friends and relatives visited from all around the USA. At the moment of her passing, she was surrounded by loved ones in her home, me holding her hand, and she simply fell asleep peacefully.

I hope that, although this is all very emotionally overwhelming, you'll find that at least you have first-hand knowledge and practical advice available to you here. Additionally, this ALS community is quite supportive.
 
Nancy, my extensive post is being reviewed by the moderator. Check back soon.
 
Thank you from the bottom of my heart for sharing your thoughts and experiences. You exceeded my expectations and have given me/us much to consider. Knowledge gives peace of mind. Ignorance is the scariest of all, I believe. Your gift is appreciated greatly. Nancy
 
as always Mike, you are totally awesome! <3
 
Mike you said it all. Everyone progresses differently. Have everything handled ahead of time. I've already gone and made pre-planned funeral arrangements so my sons will not be faced with that. Make the most out of everyday the best way you can.

Debbie
 
Thank you, summerguy. I wanted to post on your page but couldn't seem to. These are terrific links - just what I needed! I'm hoping that my guy will be as fortunate as you. Wishing you continued long life with als... Sincerely Nancy
 
Mike, you certainly covered it all and then wrapped it in a great package. I am also very grateful, thank you.
Hugs
Linda
 
Hi Nancy,
It took almost 8 months before I needed a walker. I did get AFO's at about 6 months. I did notice that I could move much better when I was pushing a shopping cart. I might add that I am 73. Having said the above I am sure you are aware that all of us progress at a different rate. My neurologist told me that I probably would not be walking in 6- 12 months. I am still walking after 6months but, I have no clue how long that will be the case. I was diagnosed 9/5/13.

Rick
 
Mine started in my right hand in 2008. I can still talk, breathe and eat. In a power chair for a year but can still self transfer. Each of us is different. It was 5 years before I needed the chair.
 
Mine started also in my right hand. I can still walk short distances with a cane ,can also talk breath and eat. I still teach , now at home. I'm thankful for that. So, noone is the same we are all individuals and in God's Hands.
Arda
 
Hi Nancy,
So sorry about the diagnosis! We are here on your journey! You're very smart to read and reach out on this forum! It's an excellent source of information and friendship!

You already have responses but I thought I would throw our journey out as well!

You asked about equipment, progression, needs:
My husband quit work the day after his diagnosis
Our girls were 16 and 17 at the time
The decision to stop working (he loved his job) was a great decision
My husband got ankle foot orthotics first (his started in his foot)
He started using a scooter after about one year (for long distances)
He/we have been living with the disease for 5 years
He started suit a power wheelchair on year 4
We bought a used van and enjoy the freedom is has allowed
Our income is very low but the good lord provides

We looked at his first symptom and how soon the next part of the disease came (although not completely accurate) and it helped us understand the progression better. In our case about every 6 months (symptoms show themselves gradually declining) but at that point we have needed new equipment and really notice the cumulating weaknesses as presented I. Each area of his body. Everyone is so different and the disease has been more rapid now that he is experiencing bulbar symptoms.

Take care and hope you know we are here!
 
Minor, easily dismissed symptoms in 2005. major onset of symptoms 12/2006. diagnosis 1/2007. needed a cane/walker at that time moved to scooter 6/2008, wheelchair 6/2009. on a scale of 1-10 (1 is vent needed and 10 is normal) his breathing is a 5.5 IMO. His progression has slowed in recent years, as his breathing declines slower than the rest of his body.
 
Hi Nancy,
I can only tell you what we found useful. We sold our two story home because it had stairs every where. The hand writing was on the wall I clearly would not be able to do stairs at some time in the future. We moved the first week in March to a single level home. We were able to work with the builder to get wide hallways, a roll in shower and all the grab bars. Please free free to contact me if you would like pictures. We did tour a house that belonged to a former member of our ALS support group and that was very helpful in deciding what we would need. My email address is:
[email protected].
I do not know what to tell you about working. Some of the folks in or support group still work they are using wheel chairs the big thing is not to get to tired.
 
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