Recommendations for foot/leg compression device

[DinaR]

Hi all. I was was diagnosed in May of this year with limb onset ALS. What started as balance issues progressed to right foot drop and now major right leg weaknesses. At this point I can do short walks around the house with a walker, but I'm mostly using a power wheelchair to conserve energy. Because I'm not walking, my foot get super swollen. Elevation helps and I'll be getting a power recliner. I'm also thinking about getting a foot/leg compression device to help with this and am wondering if anyone has a recommendation as there are so many of there. In looking ahead, will I need a full leg device or can I get away with just foot/calve?

 

[Clearwater AL]

Dina, if you wish, you might share with us who and where your diagnosis
was determined. It helps our very ALS knowledgeable members help you
now and in the future. Maybe, are you going to do clinic?…which facility?
It really helps with some intro info. Again, up to you.

 

[DinaR]

I first saw a neurologist last October after I complained to my physical therapist about tripping all of the time. (I was in PT to strengthen my upper back/shoulders related to a decades long issue with TMJ.) I went from PT to PCP to a spine specialist to neuro. My first neurologist initially thought it was a polyneuropathy in my pelvis. Several MRIs and 2 EMGs later, I scheduled an appointment with the ALS Clinic at the University of Rochester for a 2nd opinion as I was nervous about test results and symptoms that had an overlap between ALS & MS. They did a 3rd EMG and diagnosed me with ALS. While I had a hint it might ge coming based on the 2nd EMG report, my husband was blinsided.

 

[Nikki J]

Welcome. Sorry it turned out that way.
I am sure people will be along soon with ideas. You can also search old threads if you want. I thought this might be of interest Air Compression Calf Massager

 

[affected]

Really sorry to welcome you here Dina. You will find loads of information by using the search function and asking questions.
If your husband or someone can do regular ROM and massage it will help a lot as well as the elevation and repositioning.

 

[Dwest]

Hello Dina.
My husband was also diagnosed with limb onset. The only time he has suffered with his feet swelling, was from his blood pressure medication. Do the doctor switched it up and he hasn’t had any swelling since.
Just a thought.

 

[Dot Nichols]

I AM SORRY YOU ARE RECEIVING THIS DIAGNOSIS. MY HUSBAND'S FEEET SWELL AND HURT AT NIGHT. ELEVATING HELPS. YOU WILL GET LOTS OF HELP AND SUPPORT FROM THIS GROUP.

 

[Firefighter58]

Hello Becky, I had extreme foot swelling and my doctor recommended compression socks and my neurologist recommended a bed that elevated my feet and between the two my feet are now normal size as long as I maintain this procedure.
Al

 

[Diane H]

There is no pill, procedure, or surgery that can prevent leg swelling when walking is limited. It has to be treated by the three words we hate to hear; Life Style Changes. Minimizing swelling is a do-it-yourself project!
There is a more complete discussion of ways to reduce foot and leg swelling on my website at ALS: How to reduce foot and ankle swelling caused by immobility. but I will stick to compression devices here.

There are less expensive compression devices and leg massagers but they generally just squeeze the lower leg and foot on and off. The best compression devices are sequential compression. They apply the pressure in sequence, going from the foot, then the ankle, then up the calf. The less expensive type will probably work well with ALS patients, doesn't require a prescription, and is certainly worth trying before going through the process of getting insurance coverage for the more expensive type. By reducing the swelling early on (Yeah for you!), it is unlikely that you will need full leg compression later on.
Sequential compression is generally used for people with more severe swelling -- swelling that wasn't addressed early and progressed to the point where the valves in the veins that keep the blood from draining back downward collapse. Unaddressed swelling also damages the veins, making them leak even more water from the bloodstream into the surrounding tissue. People with lymphodema such as can happen after a mastectomy involving the lymph nodes also use sequential compression devices.

 

[KimT]

Hi Dina,

I think a lift chair could be a game changer for you. Mine does zero gravity and I can raise my feet above my heart which is supposed to help with swollen legs and feet.

I also have an adjustable bed that I had long before ALS because of a neck injury. That also helps.
I recently befriended another lady with ALS and she got a leg compression device on Amazon. It wasn't very expensive but she said it helped with both pain and swelling.

I've also found relief when someone massages my legs from the knees down. My left foot was swollen for awhile and it went away but the massage does help with nerve pain and I have a lot of that.

The lift chair I have is made by Golden and the model is Cloud. They've downsized their chairs during the past two or three years so, if you get one, get large. I had to buy a new one this year and the large was quite a bit smaller than my last one. Besides being functional, they are a pretty piece of furniture.

Kim

 

[DinaR]

Thanks, Diane. I found the article on your website helpful. Right now, I'm using my father-in-law's power reclining chair (he passed about 5 years ago), but it's oversized for me, and I end up with back pain. When I sit in it, my feet don't reach the floor, and my feet fall asleep/swell more due to pressure on my thighs. I appreciated your comments on appropriate sizing and will be ordering a chair that fits me. I've already figured out that I need to keep my feet up as much as possible, even though sitting too long leaves me achy and stiff. This whole thing sucks, but I'm thankful there are forums like this for support.

 

[Firefighter58]

Becky like I said, compression socks are cheap and worth a try.
Al

 

[DinaR]

Thanks for the reminder. I bought a pair over the summer but couldn't stand them. I'll give them another shot.