Living With Limb Onset ALS

ChesterB

Member
Joined
Nov 19, 2019
Messages
23
Reason
PALS
Diagnosis
10/2019
Country
US
State
NC
City
Bessemer City
It's been almost three years since my diagnosis and I've been doing okay up until now. I've lost most of the use of my right hand, and my left hand seems to be growing weaker and losing dexterity and coordination. I'm at the point where all the adaptive dressing aids and eating utensils aren't much help. This couldn't happen at a worse time for me as, at the age of sixty-eight, I'm still working full-time because (1) I'm up to my neck in debt, and (2) I don't want to give up and just sit around. I'm growing frustrated and angry and well, I just don't know what to do. Is anyone else been through these circumstances or felt this way?
 

KimT

Extremely helpful member
Forum Supporter
Joined
Nov 18, 2014
Messages
4,371
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Hi Chester,

I think most of us have had some sort of trying time with ALS. What type of work do you do? If I look back I have to say I wish I had worked longer. The diagnosis scared me, I was alone, and the timeline for the course of the disease made me think I didn't have long. So I ended up taking my pension in a lump sum. Well, the breakeven has passed and I'm still here. Of course, that's good news but I do worry about finances. Being a CPA that's embarrassing but when I transitioned to college professor my intent was to work until I was 65. I went out on disability when I was 60. I'll be 67 this month.

I often wonder who will be here to help me when I'm unable to help myself. I did sell my house and bought a condo with a friend. We have a mortgage but with two of us it is much cheaper than renting and we got it when the prices of homes were much lower.

If you want to communicate with me about your financial situation and get an opinion just send me a private message. I'll be glad to address your options regarding debt, combining your Social Security with earned income, and other financial issues.

I do hope you have emotional support. I was blessed in that I have two very good friends I met in the condo. It helps when we get together and play cards or just talk. My housemate and I have very different interests but we get along (most of the time.)

I understand the "frustrated and anger." I take a little happy pill called Remeron. It has helped me cope with most issues. I'm not afraid to take meds that help and certainly not afraid to let my doctors know when I'm not coping well.

Kim
 
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Jimi

Distinguished member
Joined
Sep 24, 2019
Messages
236
Reason
PALS
Diagnosis
02/2015
Country
US
State
CA
City
Torrance
Hey ChesterB,
Not sure there is anything I can say to make you feel better. I can certainly relate to the frustration. It's always the worst time in one's life to lose the ability to move! You are not unique.
Try your best to put that great work ethic into figuring out what you can do to adapt to a new way of living. It's your new full time job. Reading up on accessibility equipment and medical equipment and its operation is something you can control and it will help you in the future
I was diagnosed at 46 with two years of progressive symptoms prior. That was a tough two years of working on my feet as a machinist (leg onset). Wearing AFO's in your boots for 10+ hours a day is not fun! I'm now paralyzed from the shoulders down and have a trach and feeding tube.
The first thing I did after DX was apply for SSDI. That went through with no prob. In my case I didn't have much savings. Fortunately I had no debt. Next I looked into what other benefits I qualify for. To my surprise, I didn't. As a machinist with 28 years of working and paying taxes, my SSDI was so much (not!) that I was on my own. In terms of caregiving there's no help with paying for it. I will say the medicare advantage plan I have has been great. I picked one with zero copay for DME. With two vents, cough assist, trach supplies and tube feed that is a big deal. I haven't had to deal with waiting for the RT to tweak the equipment. My wife does it under my supervision. I also have my second PWC coming in two weeks. It will have eye gaze control for driving and adjusting seating position. Something interesting to look forward to.
Fortunately with the help of my family and big help from my wife, I've been able to survive. I don't have the resources to go out. This is the price for living with ALS on a tight budget. But I am still here. My daughter was 7 when I was diagnosed and I can't believe I am around to see her turn 14! She still visits often and I'm still her dad. I still laugh. I'm here.
I'm not sure of the best way for you to proceed, but if you can put the anger aside and make adapting your new job, you might be surprised that it isn't that bad. Think and research what you can do to reduce your burden on those who are helping. There's a lot of home automation available and affordable. But unless you can afford to pay someone to do it, it is up to you to set it up. None of this is rocket science once you decide to make it your new job.
Not sure what my point is.. I kinda rambled on. For sure you are not alone. Don't stop trying!
Jim
 

ChesterB

Member
Joined
Nov 19, 2019
Messages
23
Reason
PALS
Diagnosis
10/2019
Country
US
State
NC
City
Bessemer City
Thank you KimT and Jimi for the kind words advice. I'm going to try the local support group. They have a GoTo Meeting scheduled for next week. Oh, by the way Jimi, I have been working as a machinist, Tool & die maker, manufacturing engineer, and now I'm a QC technician for the last fifty years. You can understand how much I do with my hands!

Thanks again

Marty
 

KimT

Extremely helpful member
Forum Supporter
Joined
Nov 18, 2014
Messages
4,371
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Wow, Marty. I"m so sorry it struck your arms first. I hope the support meeting is helpful. When I was first diagnosed I lived in a semi state of denial and wouldn't go to support meetings. After about six or eight months I started going and developed friendships with some of the other PALS. They were very helpful with suggestions. Two were attorneys and they helped the rest of us.

I stopped going to the support meetings right before Covid. I occasionally attend the ZOOM meetings but they're just not the same.
 

Firefighter58

Senior member
Joined
Jun 21, 2016
Messages
693
Reason
PALS
Diagnosis
05/2014
Country
CA
State
ON
City
Oakville
Hi Marty, so sorry to meet you here but so be it, Kim and Jim are right on in what they say and advice. My story is I was diagnosed about 8 years ago and since then I have had a feeding tube installed that I still don't need l only take foul tasting meds and vitamins with it. I still eat in the normal way but very slowly, Iam now confined to a wheelchair but feel good and always look forward to tomorrow. I see my neurologist every 6 months and generally take his advice. My wife took care of me for the total time but now I gone in to a nursing home to make it easier on her and give her time to do the things she hasn't been able to do for years I find the nursing home good but it is certainly not home, but I can still go home for Periods if I wish
I spent 40 years with a big city fire department and about 45 years in the heavy towing business so I was very busy, then for the last year in the towing business I started to notice that I could not do things I used to do with ease so I went to see my doctor and thats when it all started.
Al
 

MarkD

New member
Joined
Aug 5, 2022
Messages
1
Reason
DX MND
Diagnosis
08/2022
Country
US
State
VA
City
Ashland
Hi Marty and everyone, Quick question for you Al if you don't mind. What kind of feeding tube did you have installed. Initially I was against having one, but not sure as I heard it makes some things easier like taking meds like you mentioned.
 

Firefighter58

Senior member
Joined
Jun 21, 2016
Messages
693
Reason
PALS
Diagnosis
05/2014
Country
CA
State
ON
City
Oakville
Yes Mark it is a peg tube and it works very well, in the event that it's needed for food it is definitely suited for that to. The tube requires little care.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
14,297
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Most people unless they have another medical issue get the tube placed into their stomach Peg actually refers to the method the other method is rig ( done by radiologist). My clinic prefers rig method. Tubes themselves are pretty much the same the only issues are size ( if you are planning to blend a slightly larger bore might be helpful) and if after initial healing you want to convert to a button type rather than a “dangler”. It isn’t a big deal to do that.

i am a big advocate for feeding tubes. My mother didn’t want one and my sister delayed a long time. Feeding took forever and was exhausting for both sides and there was lots of choking. It was horrible. If you have one early you can do meds or fluids or supplemental feeding if you are tired. And if you decide at some point you are done you don’t have to use it.
 
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