Hello, I'm new.

ejb222

New member
Joined
Mar 26, 2019
Messages
2
Reason
PALS
Diagnosis
05/2019
Country
US
State
MA
Hi everyone,
I've been eyeing this forum for the last couple months while I've been waiting for proper diagnosis.
So finally this Friday I was officially diagnosed with ALS. It was actually a bit of a relief as for the last few months I've been sitting in medical limbo in between tests with no sort of treatment plan and disability insurance being what it is. I've started having symptoms in late January I think, and didn't really see a doctor about it until mid February. Now I'm out of work. I can't stand on my own. And have started losing strength in my left hand. I wont ask to many questions off the bat, but will rather read as much as possible first. Just wanted to share a little about me as a way to say hi.
Oh, I'm 38yo and am a licensed electrician should any of you have any electrical questions :)
I do have one question: Can you recommend my first non powered wheelchair...something I can chuck in the back of the car and travel with?

Looking forward to meeting my new community.
-EJ
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,255
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
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Welcome, EJ, while sorry you are here. We will support however we can.

Just to make sure, you have received an opinion from an academic neuromuscular center on your diagnosis and may I ask where? It helps to know that you are sure.

As for the manual wheelchair, do you have someone to push it? The "transport" chairs are foldable and cheap, but weight and height can play into what I would recommend. A transport chair has smaller wheels so it's lighter to lift, but by the same token will not do well outdoors. If you will be going over curb cuts and/or on trails, I would suggest a foldable "lightweight" standard chair, with the bigger back wheels, that you most often see on the street. Spinlife has a good selection of either and some selection guides as well.

You can also look/buy locally with less of a selection. Make sure you get the right width and depth.

Your local ALSA chapter depending on your size/needs, may have a loaner, so I would inquire with them before ordering.

But I would spend no more than what you need, since you will save your insurance for the power chair, and get the order for a power chair rolling with your clinic, based on the rapid progression that you describe.

Best,
Laurie
 

ejb222

New member
Joined
Mar 26, 2019
Messages
2
Reason
PALS
Diagnosis
05/2019
Country
US
State
MA
Sure. So I began with an EMG and 2 MRIs, a bunch of blood tests etc(I'm sure you know the routine :) reviewed by a neurologist at St Vincents in Worcester, MA. He opted not to provided official diagnosis though he advised likely ALS. He then referred me to the ALS/MS clinic at UMass in Worcester. At my first appointment at the clinic the neurologist concluded ALS was the proper diagnosis. I made quite the entrance, falling flat on my face 10ft from the office door. Luckily I was not hurt. LOL

I ask about the wheelchair because my wife and I have booked an anniversary trip to Savannah, GA in June. Well I'm hoping maybe we could check it on the plane and use it for a long weekend. Then it would be helpful for small walks to my church's softball games etc where I would walk too far. I know getting a proper chair can take some time...and I would imagine having something foldable in the trunk of the car as a backup eventually can't be a bad thing?
 

swalker

Very helpful member
Joined
Dec 11, 2014
Messages
1,066
Reason
DX MND
Diagnosis
07/2014
Country
US
State
Colorado
Sorry to have to welcome you here, but welcome nonetheless.

As you already know, this form is populated with amazingly helpful folks. Don't hesitate to jump in and contribute as well as asking questions.

Having your knowledge of electronics will be very handy when dealing with power wheelchairs.

I don't know much about manual wheelchairs, so can't recommend anything. What I can encourage you to do is to get and use all the assistive devices that will make your life better. If a manual wheelchair is where you need to start, so be it.

Insurance is kind of funny about wheelchairs, so if you go the manual route first, you might want to consider getting a loaner or buying one out of pocket rather than relying on insurance. Once insurance has paid for a wheelchair, they will need a whole lot of justification to agree to pay for another one, no matter how much your needs have changed.

I was unable to start with a manual wheelchair, because by the time I was ready for a wheelchair my arms were not capable of propelling one along. I used a manual wheelchair on a brief trip to visit my brother. We spent two days in an airplane museum. It was a great trip, but it was occasionally frustrating to be pointed in one direction and needing to be pointed in another. Unless I was able to get my brother's attention, I was left pointing in the last direction I wound up. Having a power wheelchair completely solved that problem. Now, a flick of the joystick gets me looking in the direction I desire (presuming there are no toes or other obstructions blocking me:)).

We will all need power wheelchairs sooner or later. Be aware that it can takes months to get a power wheelchair if insurance is involved. My first wheelchair took 4 months. I have worn that one out and am in the process of getting a replacement. I started in November of last year and still don't have a wheelchair. It looks like the earliest I could get one will be in June, but more likely July. Be prepared for 3 to 6 months, which is pretty typical.

Steve
 

lgelb

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Nov 5, 2009
Messages
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Lost a loved one
Diagnosis
09/2009
Country
US
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WA
Definitely, I should have been clear. As Steve points out, you will need to buy or otherwise procure your own manual chair. Save your insurance, which limits chair purchases, to the power chair. You will want to read our stickies (under "Resources") and talk with a social worker at your clinic, perhaps, about applying for disability, Medicare, etc. If your job provides any disability benefit, certainly look into that.

Rather than subject a cheap manual chair to airline handling, unless you can have it in the cabin storage, I would check out prices for renting a chair or scooter in Savannah. You can also ask for assisted transport in the airport, of course.
 
Last edited:

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,239
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
Welcome. Sorry you are here but happy oy to meet you

I am glad you are at UMass. From all reports they are great! I would go there if I didn’t go to MGH!

Contact CCALS if you have not already done so for extra patient support services
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
1,801
Reason
PALS
Diagnosis
07/2017
Country
US
State
Oregon
Sorry to have to welcome you, but welcome!
I have all sorts of electrical questions 😄😈

I currently use a power wheelchair anytime I go outside the house. I can still use a walker in the house. I used a power wheelchair loaned to me by our ALS loaner closet before I received my own chair. That was very helpful, and I got adept at using a pwc. I had briefly tried a Luggie scooter prior to that, but the hand controls were too hard on my hands. I never used a manual wheelchair.

Rule #1 is don’t fall. Rule #2 is save energy wherever you can.
 

[email protected]

Distinguished member
Joined
Jan 3, 2016
Messages
209
Reason
PALS
Diagnosis
11/2015
Country
US
State
Iowa
Sorry to welcome you here. You've gotten good input--assuming you're not a vet I'm sure the insurance advice is on the mark.

The airlines don't do well by wheelchairs-I had one manual one ruined and another lose an essential part, but there's not a lot you can do to ensure you avoid all damage (Both were United flights which I now avoid in favor of American). I would also recommend loaners from ALSA both for your short term needs and possibly travel--I've had our local chapter arrange for me to get a wheelchair (and rollator) on arrival at my destination from the chapter at my destination.

Ed
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,196
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
Here is my experience traveling. Delta treated me with total care during the airport part. I did not take a chair. They wheeled me everywhere I had to go and even suggested I get a bathroom break between flights. I hesitate to recommend taking a manual chair on a flight only because I've found them easy to come by in most destinations. That said, I know a few PALS who took transport chairs (the light ones which are really not suitable for outings of any length) and full size chairs that folded and went into baggage. They had no problem. But I've heard the opposite, too.

For home, I highly recommend a transport chair for short visits/doctor's appointments, etc. I got a very nice one from Amazon at a reasonable price. Several friends borrowed it since I bought it. I also have a full size wheelchair that cost around $500. It is quite heavy but very comfortable. My friends can push it easily BUT it's pretty hard to get it in the back of my SUV, even though it folds. My friend's mom used it as did a friend who broke her ankle and both thought it was comfortable.

If you are going to buy and there is a medical supply house near, you might just find what you're looking for. Amazon has quite a selection.

You can probably rent scooters in most places, if that works better. Pushing someone around in a manual chair isn't great for the CALS if long distances are necessary.

I sprained my ankle in 2016 and they thought that was the end of my walking. I got my power wheelchair but the sprain healed and I can still walk without assistance.

I'm sure you know to avoid situations that might cause a fall. I learned the hard way. They also have some very nice walkers that are extra light and fold up nicely.
 

ReginaS

Forum Supporter
Active member
Joined
Nov 20, 2018
Messages
92
Reason
CALS
Diagnosis
02/2018
Country
US
State
--
Hi and welcome. We got a loaner manual transport wheelchair from the local ALS society and worked on getting the electric wheelchair from insurance. We used it some but once the electric wheelchair came it was quite helpful.
 

KateEmerson

Distinguished member
Joined
Apr 23, 2016
Messages
420
Reason
Lost a loved one
Diagnosis
09/2013
Country
US
State
MA
Hi ebj, I want to second Nikki's recommendation to contact Compassionate Care ALS . They are completely dedicated to helping people live with ALS whether it be with equipment needed or providing a positive emotional support. They were invaluable to us during my husband's journey. Kate
 

Kristina1

Senior member
Joined
Jan 26, 2017
Messages
575
Reason
PALS
Diagnosis
03/2017
Country
US
State
MA
Welcome EJ, I'm sorry about your diagnosis. I also go to the ALS Clinic at UMass, I see Dr. Owegi, though she's on maternity leave right now so I'm not sure if you would have seen her. Everyone at the Clinic is great though and there are a lot of local support organizations. Make sure you are in touch with both the local ALS Association and CCALS. Both have good loaner closets but will also purchase things for you that you need if they don't have them. Let me know if you'd like to connect since I'm sure you must not be too far. I am in Grafton.
 

nona

Forum Supporter
Member
Joined
Oct 1, 2018
Messages
16
Reason
PALS
Diagnosis
02/2015
Country
US
State
NH
EJ, welcome, and I'm sorry you have to go through this. I wanted to echo that CCALS should be one of your first calls. There's also an experienced caregiver in Worcester who runs her own business focusing on ALS. also at some point see if you can get a referral to the speech and OT program at Boston Children's Hospital in Waltham. John Costello is fabulous and if you can speak you can start to bank your voice.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,239
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
Good point about the Children’s program. It seems counterintuitive to go there for ALS but it is definitely the right place. I heard John Costello speak about the program yesterday and they have some ways to approach saving some of your voice if standard word banking isn’t do- able. He made no promises but showed some videos that were really interesting.

Forgive this little hijack but he also talked about voice ampliflication as a method of energy conservation and had 2 videos of PALS using it and saying how it helped.
 

Kristina1

Senior member
Joined
Jan 26, 2017
Messages
575
Reason
PALS
Diagnosis
03/2017
Country
US
State
MA
Yes the Boston Children's ALS AAC program is excellent. I go there for both their speech and OT. Both are very tech based, and they are in touch with both alsa and ccals, so several times they have trialed an equipment or tech with me in office, and when we found it worked well, they emailed alsa and alsa purchased it for me. Another time they coordinated with Christine from CCALS who was in my home for a visit and they troubleshooted it together.
 
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