My status and request for help/advice

Don

New member
Joined
Dec 24, 2019
Messages
9
Reason
PALS
Diagnosis
11/2017
Country
US
State
MA
City
Northbridge
Good evening everyone,

I am in my 27th month since diagnosis and had symptoms I ignored a year before that. I am 65 years old, live with my beautiful wife of 41 years who cares for me.

I still have the ability to walk with a walker in the house but it is scary and I am stubborn. I have trouble talking, but do some consulting for my former employer and can speak for short periods on conference calls. I hate eating, I cannot hold my head up for long periods and I get tired chewing.

My fingers do not work well but I have always been a two finger typist. My pulmonary functions are down quite a bit (under 50% of expected and much worse lying down) and cannot talk unless seated. Basically everything is weak but I am still not paralyzed.

Lately I feel as if the progression is quickening. Things I did one month ago I can no longer do. Every day I feel weaker. I have refused a feeding tube and invasive breathing apparatus (I use a BiPap every night). I have a DNR and my wife understands my reasoning.

I am just asking for comments and can handle bad news. I am depressed more, and getting up each morning is difficult. I am worried about the next stage, but I try to be realistic and be aware of the future. I would enjoy reading all comments.
 
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nona

Distinguished member
Joined
Oct 1, 2018
Messages
252
Reason
PALS
Diagnosis
02/2015
Country
US
State
NH
City
NEW LONDON
Welcome, and thanks for your openness. Each of us has to choose our own path, but your path is made more difficult without a feeding tube. If you are looking for a way to feel better, having an easy source of nutrition and hydration will help. But it is nonetheless hard to face every day knowing that the best we can hope for is that it's not worse than the day before.
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
3,259
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
City
Southern Oregon
Hi Don. I’m sorry to hear you’re going through a rough patch within a really rough disease.

I feel there are interventions that can improve your quality of life. You mention depression. Though not a “fix”, antidepressants can help stabilize your mood, improve your motivation, and decrease any anxiety you may be having. I went on Lexapro and found it did all that as well as improve my sleep.

Adjusting your BiPAP settings may also help your energy.

If the walker is getting scary, then it’s time to look into getting a power wheelchair. It takes months sometimes after putting in the order, so you might see if you can borrow one through your loaner closet. You really don’t want to fall. Falling accelerates progression. Once you get a wheelchair, it offers you freedom and many more opportunities to get out of the house.

You’ve got a lot on your plate right now, but those are some ideas to get you started.

Oh, and if you do change your mind about a feeding tube, sooner is better than later.
 

swalker

Very helpful member
Joined
Dec 11, 2014
Messages
1,142
Reason
DX MND
Diagnosis
07/2014
Country
US
State
CO
City
Vail
I loved my work and swore I would never retire. I continued working way beyond the point where it affected my progression.

When I stopped working, my progression slowed. I think it was just the overall lower physical stress on my body that made the difference.

Like you, I stayed active with my company. That lasted for several years, but was limited to taking phone calls on my time schedule. If I was in the neighborhood, I would stop by and say hi to all my friends who still worked there (I had worked with several for 30 years).

At about the same time I stopped working, I got my first wheelchair. Between the wheelchair and stopping work, I used much less of my physical reserves each day. I think that is what contributed to slower progression.

I am not suggesting that result would apply to anyone else, but it is sure what I experienced.

By conserving my energy (wheelchair, not working, etc.), I was able to expend my energy in ways that gave me the most reward. I believe that has been a key component to helping me enjoy life. I do many enjoyable things, such as going on trips, long wheelchair rides, participating in our local adaptive ski program, and going to many classical music concerts during our local summer music festival.

It is important to recognize that true depression is not something you get over by simply making a decision to not be depressed. If you are suffering from depression (which is pretty common with this diagnosis), then I encourage you to seek out professional medical assistance. It can make a wonderful difference.

Steve
 

Jimi

Active member
Joined
Sep 24, 2019
Messages
77
Reason
PALS
Diagnosis
02/2015
Country
US
State
CA
City
Torrance
Don,
Not sure what I can say to make you feel better. In my case I never run out of energy in terms of feeling sleepy, but no matter how much I rest or don't , my body just doesn't work anymore. This disease is very much a mental battle for me. I have found that keeping my brain engaged is the only thing left that is in my power to control and work with. The ability to survive this disease with medical intervention and technology is a reality. The mental fortitude is the tough part. I can tell you that things are going much better for me than I was expecting. I'm paralyzed from the shoulders down, relying on non invasive ventilation 24/7, spending all my time comfortably in my room that I like to call my cyber bubble. I still laugh, chat with loved ones, help others fix their computers, phone, advice on house maintenance , car maintenance , and supervise my over achieving little sixth-grade daughter. All are possible with my brain. Hang in there man! There are still things to do.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
8,055
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
City
Seattle
Hi, Don, though ALS progression is nonlinear, yours sounds pretty slow overall.

It can seem like there is a string of losses when neurons are lost at a threshold level -- like when a battery goes dead, but it was losing juice all along. But usually progression is fastest early and late.

The best non-drug antidepressant is having something interesting on the to-do or bucket list. If that's not getting you up in the morning, you might want to think about continuing or new pursuits, of which are there still an assortment that don't rely on mobility. And if none of that works, maybe talking with your wife, other family/friends, counseling, and/or drugs could help.

Still, you don't owe the world any particular mood at any particular time, and even people without ALS often have difficulty facing the day. If your mood gets stuck on something you want to do and can't, often there is a way to adapt it to your mobility. Let us know if you need ideas!

Best,
Laurie
 
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Nikki J

Moderator
Joined
Mar 22, 2012
Messages
8,299
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
I am sorry you are struggling.

I totally agree with conserving energy and a wheelchair would help you do that

i am wondering if you need to use your bipap during the day. If you are using lots of energy to breathe no wonder you are struggling.

it also sounds like you need a neck collar of some kind. Finding the right one for you can take a bit of trial and error.

if you get tired chewing are you optimizing your nutrition with calorie/ nutrient dense food? A lot of people here have had luck with smoothies they devise
 

Kristina1

Senior member
Joined
Jan 26, 2017
Messages
753
Reason
PALS
Diagnosis
03/2017
Country
US
State
MA
City
Grafton
Hi Don and welcome! First of all, we are neighbors. I live in Grafton! would you be up for visitors? We could chat, commiserate, and compare notes. I can private message you to plan a date that works.

You've received a lot of great advice already. I especially agree about getting a power wheelchair, and both starting an antidepressant and finding a hobby or activity that provides enjoyment and/or fulfillment.

Regarding hobbies/activities... you miight enjoy playing cards (I use a card holder we boughtt on amazon), taking a class (so many online classes are available on every possible subject), teaching a class (I know a PALS who co-teaches a children's dance class from her wheelchair), volunteering (there is a PALS on Facebook who LOVES volunteering on a crisis text line, and he is fully paralyzed and bedridden), socializing online and supporting other PALS (for example on a forum like this one), or so many other things that are possible with a little support from your CALS and outside the box thinking.

Are you hooked up with local resources? What ALS clinic are you at, Im very surprised they havent started the process for getting you a power wheelchair. I can get you connected with local stuff if you need. CCALS is fantastic and would have a loaner power wheelchair at your house tomorrow if you called them this afternoon. The ALSA and MBB (another ALS organization) put a ramp in for us. ALS Family Charitable Foundation has a $2000 grant for you to take a vacation.

Sending you hugs. You are not alone.
 

Don

New member
Joined
Dec 24, 2019
Messages
9
Reason
PALS
Diagnosis
11/2017
Country
US
State
MA
City
Northbridge
Thank you all for the comments. I am glad I found this forum so I can communicate with other PALS. I do have an electric wheelchair, I use it outdoors and to get to the car. I can use it indoors, I have just been stubborn as mentioned. I have my clinic this Wednesday, I will mention the neck collar, another helpful idea. I am also talking to an LICSW on Wednesday, I will let him know of my issues as well. I do take Nortryptilene and have been for a while, I will discuss that too. Thank you all again!
 

Nuts

Forum Supporter
Extremely helpful member
Joined
Feb 23, 2014
Messages
2,534
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
NC
City
Littleton
Don, you have received some great advice already, and I'm very glad that you will be speaking to your SW soon. One of the things I loved about ALS clinic was that at each stage of progression they had wonderful advice on how to make adjustments that helped. Conserving energy is huge. I don't mean not doing what you want, but rather not wasting energy on things that matter less. Use the chair to move around in the house so you have the energy to do that one thing that really matters to you! If you decide on the feeding tube, you will be able to get the nourishment you need without the fight that eating has become. Otherwise, please consider smoothies. There have been extensive discussion in old threads on tasty and nutritious smoothies. Hugs!
 

EricInLA

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Member
Joined
Oct 20, 2019
Messages
17
Reason
PALS
Diagnosis
01/2020
Country
US
State
CA
City
Los Angeles
Don - I'm happy you asked this because it has elicited responses that are helpful for me too. I was recently diagnosed - though I've had symptoms and suspicions for about 2 years. I'm glad you are still doing some work. I'm finding that my work takes my mind off the misery, as do hobbies and my family. I completely understand the depression and the difficulty facing the day in the morning. I like Laurie's comments in the last paragraph of her response above. Very good perspective. I find this forum therapeutic because you realize you're not alone - others are in the same boat dealing with the same issues, and are willing to help. I guess my only advice (from a novice) would be to try to allow yourself to take advantage of some of the technology that good people have been working on to make pALS' lives more manageable and enjoyable. I hope your clinic visit on Wednesday is productive!
 
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