Old 12-31-2017, 06:02 AM #1 (permalink)
New Member
 
Join Date: 2014
City: Jossgrund
State: Germany
Country: DE
Diagnosed: 07/2013
Interest: I have been diagnosed with ALS.
Posts: 61
ardalon is on a distinguished road
ardalon ardalon is offline
New Member
Join Date: 2014
City: Jossgrund
State: Germany
Country: DE
Diagnosed: 07/2013
Interest: I have been diagnosed with ALS.
Posts: 61
ardalon is on a distinguished road
Default Thrombosis prophylaxis

Hello,
My doctor suggested thrombosis prophylaxis because I'm lying in bed. Never heard that ALS patients need it. Does anyone have experience with it?
Ardalon
ardalon is offline  
Old 12-31-2017, 01:59 PM #2 (permalink)
lgelb's Avatar
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 5,977
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 5,977
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
Default Re: Thrombosis prophylaxis

My husband was on warfarin before and during ALS, owing to a prosthetic heart valve. I am not sure that incidence of thrombosis in ALS would support its use (or one of the newer anticoagulants, which have their own issues) unless you have other risk factors, but I know of no research into this.

The major preventive apart from warfarin would be passive range of motion exercises and massage -- is someone doing those for you? Are you always in bed? A balanced diet so as to keep the ratio of vitamins that affect clotting in sync is also important.
lgelb is offline  
Old 12-31-2017, 08:23 PM #3 (permalink)
affected's Avatar
Extremely Helpful Member
 
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,775
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
affected affected is offline
Extremely Helpful Member
affected's Avatar
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,775
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
Default Re: Thrombosis prophylaxis

Definitely passive exercises and massage are the first line of defence that are used. How long have you been paralysed, as this does have a bearing as do other health conditions.
affected is offline  
Old 12-31-2017, 09:21 PM #4 (permalink)
KarenNWendyn's Avatar
Senior Member
 
Join Date: 2017
City: Southern Oregon
State: Oregon
Country: US
Diagnosed: 07/2017
Interest: I have been diagnosed with ALS.
Posts: 930
KarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant future
KarenNWendyn KarenNWendyn is offline
Senior Member

KarenNWendyn's Avatar
Join Date: 2017
City: Southern Oregon
State: Oregon
Country: US
Diagnosed: 07/2017
Interest: I have been diagnosed with ALS.
Posts: 930
KarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant future
Default Re: Thrombosis prophylaxis

Iíve wondered myself about DVT (deep vein thrombosis, or blood clot) prevention when I no longer have any voluntary movement left in my lower extremities. How many PALS with no other risk factors for clotting are advised by their physicians to go on blood thinners? I will plan on asking my neurologist this at my next clinic visit but would also be curious to know the experience here.

Immobility and being bed- bound are listed as risk factors for DVT and pulmonary embolism in general. We see it come up even in some people on long (generally transcontinental) flights. Massage and range of motion exercises are important, but I wonder if more is needed in ALS.
KarenNWendyn is offline  
Old 12-31-2017, 09:25 PM #5 (permalink)
KimT's Avatar
Extremely Helpful Member
 
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 2,789
KimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond repute
KimT KimT is offline
Extremely Helpful Member

KimT's Avatar
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 2,789
KimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond repute
Default Re: Thrombosis prophylaxis

I take fish oil and krill oil. When I get cut it seems like I never stop bleeding. My Vitamin K level is normal. I think I'm going to stick with the oils and pray someone will massage my legs and do ROM.
KimT is offline  
Old 01-01-2018, 07:29 AM #6 (permalink)
New Member
 
Join Date: 2014
City: Jossgrund
State: Germany
Country: DE
Diagnosed: 07/2013
Interest: I have been diagnosed with ALS.
Posts: 61
ardalon is on a distinguished road
ardalon ardalon is offline
New Member
Join Date: 2014
City: Jossgrund
State: Germany
Country: DE
Diagnosed: 07/2013
Interest: I have been diagnosed with ALS.
Posts: 61
ardalon is on a distinguished road
Default Re: Thrombosis prophylaxis

Thanks to all.
I'm in bed since one year. I have physiotherapy twice a week and ergotherapy once a week.
ardalon is offline  
Old 01-01-2018, 07:41 AM #7 (permalink)
Nikki J's Avatar
Extremely Helpful Member
Forum Moderator
 
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,356
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Nikki J Nikki J is offline
Extremely Helpful Member
Forum Moderator

Nikki J's Avatar
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,356
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Default Re: Thrombosis prophylaxis

I can think of 4 members here who had clots but know there are more. If I recall correctly my sister ( who was wheelchair and bed) was advised to take an aspirin. She had no underlying illnesses or risk factors besides the immobility of ALS
Nikki J is offline  
Old 01-01-2018, 04:03 PM #8 (permalink)
affected's Avatar
Extremely Helpful Member
 
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,775
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
affected affected is offline
Extremely Helpful Member
affected's Avatar
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,775
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
Default Re: Thrombosis prophylaxis

Once you are totally bed bound, the risk of DVT increases, and I couldn't remember how many here had experienced them, thanks Nikki!

Even if you are getting up with a hoist and into a chair and being toileted etc it makes a huge difference.

Ardalon can someone do some passive leg exercises on you daily, twice daily would be best? But taking medication may also be wise, I'm sure your doctor is looking at the complete picture.
affected is offline  
Old 01-01-2018, 07:23 PM #9 (permalink)
Senior Member
 
Join Date: 2013
City: Fort Wayne
State: Indiana
Country: US
Diagnosed: 11/1985
Interest: I have been diagnosed with ALS.
Posts: 608
Diane H is a glorious beacon of lightDiane H is a glorious beacon of lightDiane H is a glorious beacon of lightDiane H is a glorious beacon of lightDiane H is a glorious beacon of light
Diane H Diane H is offline
Senior Member
Join Date: 2013
City: Fort Wayne
State: Indiana
Country: US
Diagnosed: 11/1985
Interest: I have been diagnosed with ALS.
Posts: 608
Diane H is a glorious beacon of lightDiane H is a glorious beacon of lightDiane H is a glorious beacon of lightDiane H is a glorious beacon of lightDiane H is a glorious beacon of light
Default Re: Thrombosis prophylaxis

Prevention and Treatment of Blood Clots
Your doctor may recommend that you take a blood thinner after you begin using a wheelchair full time because you are at high risk of developing blood clots, especially in your legs when walking is minimal. If a blood clot forms, the danger is that pieces of the clot will break off and sail through the bloodstream looking for places to get stuck and cause major damage. Clots in the lungs (pulmonary emboli) cause severe chest pain and breathing difficulty. Clots in the brain cause strokes. The recommendation may be for an Aspirin daily, or if you have had a clot, he will want you to take Coumadin (warfarin). Many people are reluctant to take any medications and the idea of any blood thinner, much less the one that is the lethal ingredient in rat poison, sounds pretty scary! But taking medication before you develop the almost inevitable blood clot beats the heck out of a week in the hospital or belly shots! Please read up on the subject. A place to start is http://www.alsfrombothsides.org/coumadin.htm
And be glad that you have a knowledgeable doctor. It is maddening to hear how many doctors will sign the paperwork for a power wheelchair and never consider thrombosis prevention.
Diane H is offline  
Old 01-01-2018, 08:34 PM #10 (permalink)
Member
 
Join Date: 2016
City: Boston
State: MA
Country: US
Diagnosed: 09/2013
Interest: I lost a loved one to ALS/MND.
Posts: 307
KateEmerson is just really niceKateEmerson is just really niceKateEmerson is just really niceKateEmerson is just really nice
KateEmerson KateEmerson is offline
Member
Join Date: 2016
City: Boston
State: MA
Country: US
Diagnosed: 09/2013
Interest: I lost a loved one to ALS/MND.
Posts: 307
KateEmerson is just really niceKateEmerson is just really niceKateEmerson is just really niceKateEmerson is just really nice
Default Re: Thrombosis prophylaxis

Once my husband could no longer walk or stand we used these sequential compression boots for an hour twice a day. He loved them as they basically gave him a massage and helped with swelling. He also took an aspirin and plavix daily for his heart condition which caused a few bleeding episodes, one requiring hospitalization.
Attached Thumbnails
Thrombosis prophylaxis-img_0655.jpg   Thrombosis prophylaxis-img_0656.jpg  
KateEmerson is offline  
Thanks from
affected (01-02-2018)
Old 01-02-2018, 12:19 AM #11 (permalink)
affected's Avatar
Extremely Helpful Member
 
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,775
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
affected affected is offline
Extremely Helpful Member
affected's Avatar
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,775
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
Default Re: Thrombosis prophylaxis

Oh yes, thanks Kate I had forgotten about these boots - they used one on my daughter after her car accident and they are amazing.
affected is offline  
Closed Thread

Tags
als, bed


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
Pulmonary Embolism with Deep Vein Thrombosis Georgia Peach General Discussion About ALS/MND 28 10-13-2011 09:34 PM
Deep vein thrombosis! tag0620 Do I Have ALS? Is This ALS? 3 04-18-2009 09:46 AM


All times are GMT -5. The time now is 01:47 PM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016