Hard Questions & need assistance please

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cairn175

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May 1, 2012
Messages
39
Reason
PALS
Diagnosis
03/2012
Country
US
State
washington
City
chehalis
Hi,
I have only been diagosed for 7 weeks but already having to use a lift all of the time. I can no longer walk & can only stand 20 seconds with the help of my hubby & a walker. My arm strength is fading quickly. I am not having any trouble with my voice...does everyone with ALS lose their voice? Also and this is the hardest question...at the end do you pass away because your muscles that support you lungs fail? Thanks in advance for any information you can share.
 

Toto's Dorothy

Very helpful member
Joined
Jan 31, 2012
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Kansas
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Cairn,

Not everyone loses their voice. And each case is different. We have recently had some of our family members pass away peacefully in their sleep. Take the time to read through some of the posts. Please don't focus on the downside of this disease. It will take you to places you don't want to go. We here are LIVING with ALS.

You mentioned losing strength in your arms, when are you scheduled for a clinic visit. You need to start the power wheelchair process immediately. It takes sometimes 6 months or more to get approval and the chair. I started my process 6 months ago tomorrow and I still have another 30 day delay for the customized portion of my chair. Most of the time its the doc tors not filling out the paperwork fast enough. Also, because medicaid, medicare and most private insurances only allow 1 wheelchair in a 5 year period, purchase either a used or go to your local alsa loaner closet to get a manual chair. The alsa closet may also have items there for you to use as long as needed. Take advantage of it.

Please be careful so not to fall, I don't know the statistics (someone else may let you know) but many premature deaths are due to falls.

Welcome to our family, sure wish we could have met somewhere else. If you have questions, please feel free to ask. Someone here will know the answer.

Prayers to you,
 
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cairn175

Active member
Joined
May 1, 2012
Messages
39
Reason
PALS
Diagnosis
03/2012
Country
US
State
washington
City
chehalis
Thanks for the information. I have already ordered my power chair...just have a long wait. No one has actually said how long it will take as the chair is customized so they said it would be "awhile". I love this site as it has so much information & so many helpful people.
Thanks,
Leslie
 

Toto's Dorothy

Very helpful member
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Leslie,

I'm glad you got it ordered. And now the waiting game begins. A dear friend, Di put it the best. We often look at the things as the glass half empty/full idea. Well, she said she uses the shot glass approach. I liked that idea. But make sure you check out the loaner closet.

And just a note to let you know, we have other sections you may want to visit. If you need to rant, there's a section. If you need to wallow, we have a pub, we have a whine section too. We also have a wonderful Christian site. This includes daily devotions, prayers, hymns and so much more. But if you want a wacky place to go to it is the Tea section. If you need a pick me up there's where you need to go. You never know what might come out of our big mouths.

So drop by for a visit, anytime, we are open 24/7.
 

Poet Chistopher Robin

Distinguished member
Joined
Mar 17, 2012
Messages
147
Reason
PALS
Diagnosis
06/2011
Country
UK
State
Tyne and Wear
City
Newcastle upon Tyne
Yes to the voice, people cannot understand me at all, by 8 9 o clock its totally gone

I’m not passing out yet but have came very close a few times, as my lung s are also gone there is a lot of severe abdominal pain under my right lowest rib

The weakness is all part of this too, I truly wish I was able to help you further
 

cervus

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Mar 18, 2011
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935
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Lost a loved one
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Hi Cairn. My husband didn't lose his voice but rather the ability to form words. His speech became unintelligible so he stopped talking. Eventually his diaphragm muscles weakened. Everybody is different though. Take one day at a time and try to live each day to the fullest. So sorry about your diagnosis. Yasmin.
 

tmasters

Senior member
Joined
Feb 19, 2008
Messages
532
Reason
PALS
Diagnosis
08/2008
Country
US
State
California
City
Anaheim
Hi Cairn and welcome.

ALS does not always take your voice. It does not always take your ability to walk. It begins (onset) in a particular part of the body (legs, arms, respiratory, or head) and spreads from there. Different PALS have different onset. ALS ends when respiration ends. If you could magically keep your respiratory muscles strong forever then ALS would eventually take everything else including your voice.

I agree with the others: focus on the living not the dying.

-Tom
 

notme

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Joined
Apr 3, 2011
Messages
2,605
Reason
PALS
Diagnosis
08/2011
Country
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State
Fl
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Orlando
There are new things coming all the time. A few members, for instance, have gotten the diaphragm pacing to aid in their breathing. There are drug trials going on in most areas.

Contact your local ALS association for items in the loaner closets. Get them before you need them.

Statistically, the way ALS kills is with respiratory failure. Many choose to ventilate. It's all personal choice. We've had members recently pass very unexpectedly--some from the ALS--but some from other causes, such as heart attacks or injuries.

We also have members that seem to progress rather slowly. Unfortunately, people are not statistics. No one can say for sure.

Be assured, though, that medications when/if the time comes that you're unable to breathe, make the passing much more comfortable. There should be no 'air hunger' sensations. Hospice goes to great lengths to assure that doesn't happen.

If you've chosen to fight tooth and nail--including things like ventilation and PEG--do the PEG before you need it. Any surgery is easier when you're as healthy otherwise as possible. Respiratory function can go very quickly.

Be sure you get all durable medical equipment before you ever consider hospice. Hospice is geared solely for patient comfort.

It's also important not to over-do. If you haven't applied for disability yet--you'll want to do so. SSI/SSDI are not contested in cases of ALS--and there is no 2 year wait for medicare to kick in as there normally is.

The members here will be here whenever you need them for questions and support--for you and your loved ones. Welcome to a group no one wants to join. Hopefully, though, the site can make things a bit less complicated for you.
 

cairn175

Active member
Joined
May 1, 2012
Messages
39
Reason
PALS
Diagnosis
03/2012
Country
US
State
washington
City
chehalis
Thank you all for the support and information. I would be lost without your kind words and knowledge. Today is a good day...sun is out and my bathing support is coming today. I will call & check on the status of my pwc....keeping my fingers crossed it won't take as long as Toto's has.
 

Grateful

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May 11, 2012
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Learn about ALS
Country
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Greater London
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London
Hi
I don't have ALS/MND and I'm not a doctor. I do have severe bronchiectasis in both lungs which means that I will probably die of respiratory failure and cor pulmonaLe, provided the bacteria which colonise my lungs do not polish me off before then. We may arrive at the same destination via very different routes.

However, there is a lot which can be done to help your quality of life and I would strongly recommend that you see a respiratory specialist as soon as possible; I'm on the other side of the pond so you may have a different term for them. It would be sensible to have a supply of antibiotics on hand so you can start a course at the first sign of trouble; it is much, much easier to knock an early infection on the head than to stop it once it's entrenched in your lungs.

There are medications which open the airways and make it easier not only to breathe but also clear secretions from the lungs, thus improving your oxygen levels and reducing the chances of infection. Even a small amount of sputum can dramatically reduce your oxygen saturation levels so if you can shift it then that's good.

And then there are machines which can help in a variety of ways; I'm not familiar with the "coughing vest" since very few people use them over here but I am sure that there are people on the forum who do. I have a compressor to nebulise asthma and anti microbial agents so I can just inhale them and a ventilator to help me breathe when I need it.

I also recommend sorting out a pain relief plan with the respiratory specialist since it's hard to breathe well if you are in pain, and sometimes other medics misguidedly believe that opiates should never be used in people with lung problems. They are wrong but you shouldn't have to waste your time educating them since you have better things to do!

I hope this is of some use to you; if there is anything else please let me know. Good luck!
 

jb63

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Joined
Dec 13, 2011
Messages
164
Diagnosis
12/2011
Country
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NY
City
Long Island
i started the smart vest and like it. i will be adding bipap and cough assist this week.
 

cairn175

Active member
Joined
May 1, 2012
Messages
39
Reason
PALS
Diagnosis
03/2012
Country
US
State
washington
City
chehalis
Good news...I got a loaner pwc yesterday...it was unexpected but thrilled to have it. I am dangerous & walls, corners, dog & husband better watch out...going in reverse is going to take alot of practice. I fell yesterday & had to call 911 to get up...no idea that my legs could bend they way they did & not break. Oh well today is a better day & I can zoom (actually I go very slowly) around.

Thanks for all the good info.
 

momap53

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Joined
Jul 2, 2011
Messages
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EGA
Hooray for the pwc! :p
Do be careful and be sure to turn it off before transferring. So far our cat and dog have survived a couple of brushes with the rear wheels. It's hard at first to judge where they are. I'm still catching things (walls, door frames, furniture, fridge, lower cabinets,etc) with them on occasion. Just pick up a bit of drywall mud and scratch cover for the wood to use after you're more proficient.;)
 

notme

Extremely helpful member
Joined
Apr 3, 2011
Messages
2,605
Reason
PALS
Diagnosis
08/2011
Country
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State
Fl
City
Orlando
Glad you didn't break anything when you fell! I'm so happy you got a loaner chair--please use it so you don't fall again. That's my worst fear--I keep falling, and I simply can't get myself up :(

my daughter hurt herself trying to get me up when I fell last time. Before that, she got hurt trying to keep me from falling :( Needless to say, I don't walk any more than absolutely necessary now.
 
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