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Teej

Active member
Joined
Sep 28, 2006
Messages
39
Reason
Loved one DX
State
CA
My husband has ALS and continually has cold feet. We live in California, so it never really gets that cold, but his feet, even on the 100 degree days, are freezing. Any ideas on what to do for him? Also, does anyone get regular massages or have regular stretching sessions? My husband has been having stretching sessions, and afterward, his joints really ache...Does anyone have joint pain? If so, what do you do for the pain?

Also, we are planning on traveling back East to see my daughter perform in an opera in mid-November. It's a long flight, so does anyone have any helpful hints as to how to make things more comfy for him? He gets very uncomfortable sitting up for longer than an hour. He is at the stage where he can walk very very little and is in a wheelchair full time, his left arm has atrophied a great deal, swallowing pills and liquids are hard for him, but regular food is ok still. He cries uncontrollably and yawns all the time which sends his jaw into spasms, and is at below 50% lung capacity now. We are due to travel next month, so I am praying really hard that he is able to go. Any travel tips would be much appreciated.

Also any hints for avoiding viruses besides the flu shot and pneumonia shot?

Wow! I had a lot of questions! I am really excited about his group! I am finding the best information we are getting so far is from other PALS, so I really appreciate you all taking the time to read this and answer....Blessings to everyone in your daily journies, Teej
 

lunarruna

Distinguished member
Joined
May 20, 2006
Messages
145
Reason
CALS
Country
US
State
xx
Teej,
Stretching, massage and range of motion (ROM) exercises are huge therapy for PALS. I give my husband about 4-5 foot massages a day...he is fairly advanced and doesnt move really at all, so needs it. It warms his feet up. He is in a recliner and I sit on the floor in front of him. He gets ROM exercises from aides or PT 5 days a week, and we all massage his neck and shoulders a bunch too. It makes a big difference to his comfort level. Your doc can write a script to order PT....our PT does some massage in addition to the ROM, although I dont think that is actually covered she is just generous with it because she knows how much it helps him.
welcome to the site--good to 'meet' you!....good luck with everything, Beth
 

jmarie78

New member
Joined
Feb 4, 2009
Messages
1
Reason
Other
Country
US
State
FL
Tip for joint pain/conquer ha

I know of people who have used a supplement called Conquer HA for joint pain. It has helped them and it's worth checking out. If you are interested, here is the website . Sorry, we don't allow advertising on this site.
 
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brownie

New member
Joined
Jul 30, 2009
Messages
9
Diagnosis
10/2007
Country
US
State
washington
Hello to everyone again, and God Bless all of you suffering with this horrible disease. I signed up last year when my best friend was diagnosed with ALS. We had hoped the doctors were wrong, as she also had a diagnosed of lymes disease. But I believe that the lymes has triggered als, she was on antibiotics for 2 years straight with no sign of improvement. Most recently she had a feeding tube placed in her abdomen, and boy did that take alot out of her. But she is a strong cookie and I believe she is fighting this wretched disease tooth and nail.... My question is this? She all of a sudden got a terrible red rash on her entire torso in the back, they look like goosebumps but are bright red and are visibly irritating, they itch and she says they feel hot. I move her all the time, and get her out of bed alot, she can still walk, (barely) and speak. My second question is this? When can we expect her voice to go? I would love to be able to know when she wont be able to say good morning to me? I just dont want to be devasted, I want to know when to expect it. Her neck is weak, she has lost all function of her upper body. Her Left hand was the first to go 3 years ago. She has alot of saliva that I have to suction out, as she is afraid she will choke on it. Iam so scared for her...but I really wish I knew when to expect the worst, is there one sign that everyone has that lets you know its the end? Im sorry to sound so stupid, but its a serious question. There are so many things we still need to talk, and laugh over... Thank you for any input.. Brownie
 

indigosd

Very helpful member
Joined
Jun 22, 2009
Messages
1,784
Reason
Lost a loved one
Diagnosis
07/2009
Country
oz
State
oz
Brownie, it sounds like it could be heat rash or a reaction to something. Have you changed laundry soap or lotion recently? Is she on any new medications? Here is a link that will show you what heat rash looks like Heat Rash Pictures Try looking online at photos of rashes to see if it looks like something that you need to see her Dr. about.

ALS progression has no identifiable time line. Everyone is so different. "There are so many things we still need to talk, and laugh over..." You need to make every moment count.

Teej, is he on any medications for EL? That should help with the uncontrollable laughing or crying. Is he on medications for spasms? It sounds like he needs something. BiPap? PEG? Did you get a refundable ticket? Who knows if he will be able to travel in November...You don't say what type of trip you are taking shortly so it is hard to know what to share with you. WELCOME to the forum :]
 

stephie

Distinguished member
Joined
Mar 28, 2008
Messages
117
Reason
CALS
Diagnosis
01/2007
Country
US
State
mn
I have a couple of suggestions for flying. The last time my husband and I flew we had to get seats in the handicap row, but those seats did not recline. My husband had a terrible time trying to hold his head up the whole time. When I asked for a pillow so that he could put his head on my shoulder we were told that pillows were only for first class passengers. I would recommend checking ahead of time about whether the planes handicapped seats recline and bring a big pillow in case he needs to rest his head on you! Also, when we watched them load his very expensive power wheelchair onto the plane through our window I almost had a heart attack! The way they tossed the thing around was a crime and they returned it to us with a broken arm rest. If I were going to travel again, I would consider renting or using a manual chair. Good luck to you!
 

Blubear

Senior member
Joined
Oct 24, 2009
Messages
941
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
Wa.
Teej, Well, I am the resident travel agent here. I believe the handicap seats that they are referring to are the bulkhead seats. They are great and give you the extra room you would want. They are the seats in the very first row right behind first class. The arms on the chairs sometimes do not go up, and yes sometimes they do not recline. Although most of the time they do recline. (Watch out for the babies up there though - could be a lot of crying going on) You can advise the airline that you will need the seats due to being handicap. Otherwise they will not pre-assign them. I don't know how much you travel, or if you have any family that has traveled a lot, but it is only 20,000 miles on a frequent flier program to upgrade to first class when you purchase a coach seat. That would be wonderful for you. Pillows and such are available in first class. Some airlines still have them in coach and some airlines will allow you to purchase them on board. I always take mine just in case. As far as your tickets that you purchased for November, if your husband is unable to travel due to terminal illness, with a doctors note you may be able to get a full refund by writing the airline. If you used a travel agent, bring the note to them. As far as keeping away the viruses. Some people are now wearing a face mask, otherwise you can take along some anti-bacterial hand gel as long as it is less than 3oz. As far as the cold feet, I have that problem although I do not have ALS, I have diabetes. It sometimes feels cold to the bone. I got some gel warming socks. The gel inserts are put into the mircowave and they keep my feet toasty for an hour. You can find them at smartfood dot com and look under Hot n' Cold Men's/Women's comfort Therasox. Hope this helps. All the advice from everyone else here is spot on as well. Happy traveling!
Hugs, Blu
 
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