Overwhelmed .. need some advice/help!

Nanders

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Nov 14, 2019
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PALS
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11/2019
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US
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AZ
I have so many appts/people calling/decisions to be made I’m overwhelmed.. I started OT/PT early this week & honestly I don’t see the point. I’ve been doing my own ROM, (which they found to be very good)I know about transfer training ( had multiple surgeries in past with p/op PT) My OT wants to help me get equipment, aides etc, & teach me ADLS, which ALSA & MDA are providing and bringing to me along with home eval & instruction. I fatigue so quickly & they want to see me twice a week.. for what?? I have so many drs appts ( kidney, pulmo, rheum, Neuro, etc) social worker & life! Plus at $20 a visit per service that $80wk.. yikes!!
I can use that money for much better things like... oh food, LoL.
I guess what I’m asking is if I have a rapidly progressing course..do I really need all this OT/PT?
Sorry for the long ranting run on...
I appreciate all of your input.
Nancy
 

Nikki J

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What are their goals? Ask them to articulate them and if they can’t or are inappropriate say no. i have seen PT in clinic and once they suggested outpatient. I asked why. They explained. I then explained why it was not needed and they agreed. End of story.
ALS is different than most diseases so there may be things to be relearned but my experience has been PT and OT are usually more helpful in problem solving than regular therapy. Are the PT/ oTs neuromuscular specialists even?
 

affected

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Any PT/OT that comes near you must understand ALS very well or they can cause damage and hasten progression even more.
Nikki's advice is spot on - you have the right to say no, and seeing them every week is unlikely to be appropriate.
 

KarenNWendyn

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Appointments occasionally come in clusters. Sometimes it’s unavoidable. But an important part of living with ALS is trying to conserve energy. I would suggest 1-2 appointments a week max. Sometimes you just have to say no.
 

Nanders

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Messages
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11/2019
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AZ
Well I’m so grateful for you both .. my gut told me after seeing them that this was not necessary or possibly even good for me. My OT was so excited to see me, strangely so.... she finished and told me next time we’d look thru Patterson equipment catalog & pick out things to help me, but I should by them from Amazon/Walmart to save money. Great advice..but I blurted out ‘Have you ever had an ALS patient before?’ She quickly responded no. You’re my first, with the excitement of a kid getting a new toy!! LoL
I’ve spoken to my social worker & my ALSA & MDA case workers. They’ve told me what I need now, I’ll need in future & are providing most of what insurance doesn’t cover. ALSA comes Monday with a lot of it..& doing home eval..
I think this is where I follow my instincts & wise council 😉.
Thank you again... I truly appreciate your listening to my ramblings..and helping me!
 

lgelb

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Just a +1 on the right to say no and to ignore "advice" that's doled out wholesale. You can always schedule them if/when you need them. Their business is a revenue stream, which the byzantine nature of reimbursement in fairness makes increasingly difficult. Yours is to live out your best life.

When you can no longer do your own ROM, for example, you might benefit from a session on the best assisted exercises (passive ROM) for your context.

FYI for newbies, Patterson is the most expensive catalog there is, but they are "in" with most of the clinics.
 
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Vincent

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Any Physio I saw was 1x per week, reevaluate at 4 weeks. I learned the routines and do them myself. Once you get things going you don't need someone over your shoulder.
Vincent
 

ARCG

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We learned the range of motion exercises when we were going to the clinic and have since done them ourselves at home. I do it for my husband now that he can’t move. So no need for us to hire a pt. I concur that conserving energy is important, we no longer go to the clinic as it was too exhausting, but we feel in his case conserving energy has contributed to my pals longevity and quality of life, he is much happier in familiar surroundings where he has the comforts he requires at hand. Of course, that’s just an observation and may not be the case for everyone,
 

KimT

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I asked my local neuro for PT when I couldn't straighten out my right knee. Although the PT hadn't worked with ALS patients, the group had many MS patients and some with MD. They were very trainable. I went twice a week for six weeks. It got about 50% better and the pain lessened. I continued to work on it every day and did ROM in the pool. Now I can straighten it. I still have pain but only when I overuse it.

I get very overwhelmed when my calendar is full, even if it's full with fun things. People without ALS find it hard to believe that I limit myself to one "activity" a day and an "activity" might be grocery shopping OR playing cards......not both. The only exception is that friends are always welcome to come over for a movie because being in my lift chair with the heat on my lower back counts as down time.
 

nightowl

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Your family and you need to learn these PT/OT skills. Mostly whoever will help you when you are unable to do things for yourself. Get everything situated at home, easy access for your ADLs so that its easier for you and your help for later on. I say enjoy your time while you're able to. The real work begins when things start deteriorate, unfortunately.
Enjoy your time with your family, eat well and prepare.
 

Firefighter58

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Messages
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PALS
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Ontario
Hi aii, this disease being what it is I try to ignore it. I can no longer walk or talk, I have a feeding tube that I only use for meds. and vitamins and I see my ALS neurologist every 4 months and the rest of the time I do exactly as I wish. I feel good, I have no pain and I sleep well and I eat well, I can still eat normally but very slowly.. I don't worry about the future or the past I just try to totally enjoy today. Like Vincent I think CBD oil helps me relax.
My advice is to enjoy life as much as you can, don't worry about things you cannot control, and don't worry about things you might need in the future even though you will get lots of advice, the secret is one day at a time.

Al
 

notBrad

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Messages
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PALS
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I'm in the same boat as Al. The mmj helps me immensely. I would also say take Vincents advice and buy the gaming eye gaze from tobii and use the windows 10 eye gaze. Lots cheaper than a tobii i+ series. I have bought 2 one for a backup and to see if I can get a dual monitor to work.
 
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