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Mahealani

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09/2008
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US
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HI
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Hilo
Aloha:
First post for me. I was Dx in October after about 3 months of testing and I have a UCLA visit in January. I started with weakness in my right hand and now have weakness in my legs, but I am still walking, driving and managing to work part time. Last week I noticed tightness in the right side of my face by my mouth, it hasn't gone away but I don't notice any swallowing problems. It feels like it is progressing fast - I started Rilutek a couple of weeks ago with no side effects yet. I'm 51, have a 23 yr old son and a 16 yr. old daughter.


My family is going to Canada on a "long" planned vacation for Xmas and are very persistant about wanting me to go. Coming from Hawaii I am wondering how cold weather effects your muscles. Also how is traveling on the plane for those with weak legs? I'm worried that I will have difficulties. Any suggestions?

Mahealani
 

sharonca

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12/2007
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CA
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Mentone
I find that cold weather, cold breezes cause excessive yawning. This is a symptom with ALS. And then with the yawning I get cramping in my throat. So I usually have a long, warm scarf with me to wrap my neck up good. I don't live in cold weather so I'm not sure what else could happen. You can get handicap entrance on the plane and get on first so that helps. And then just take your time getting off. I started asking for a wheelchair early even when I could still walk. Just made me less stressful and less tired at the end of the day.

Merry Christmas and hope you have a great time if you decide to go on your trip!

Sharonca
 

shelly2612

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Diagnosis
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Waterloo
Cold weather

my husband was diagnosed in September of this year. He is an avid hunter and outdoorsman, he has found that the colder he gets the more restrictive his movement is, he is normally able to raise his arms above his waist, but while hunting on several occassions in the cold weather he didn't have any use in his hands and arms at all. make sure you bundle up and keep in mind that you might be more sensitive to the cold. Just take precautions and you should probably be fine. Have fun on the vacation..............Enjoy yourself
 

joelc

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Yes, cold negatively affects people with ALS so depending on where in Canada you are visiting you would be wise to take some warm clothing. Where are you visiting?
 

Al

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Dress warm. Cold stiffens me up. You can get a wheelchair at the front door of the terminal and at the door leaving the aircraft. Prior arrangements through your travel agent or airline usually need to be made. Don't be afraid to ask for help. Save your energy for the things you really want to do. Most hotels have loaner wheelchairs too but they are hard to push in snow depending on where you go.


AL.
 
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Mahealani

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Messages
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Reason
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Diagnosis
09/2008
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US
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City
Hilo
Thank you for your suggestions. I'm worried about being far from home and having difficulties. I don't plan on doing anything very physical - I just want to be close to my family while I can. We will be in Vancouver.

mahea
 

Al

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With any kind of luck, in Vancouver, the only snow you'll see will be looking north on a clear day you can see the mountains. You should be fine. It doesn't get below freezing there too often. Maybe some of our members from out there can advise better.

AL.
 

tmasters

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Joined
Feb 19, 2008
Messages
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Reason
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Diagnosis
08/2008
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Aloha Mahea,

Have you had your UCLA visit yet? Please remember to let us know how it went.

I see Dr. Michael Graves there and think he's great. So easy to talk to and really puts you at ease. Make sure that a friend or a family member goes with you and helps you take notes.

-Tom
 

Mahealani

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Diagnosis
09/2008
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City
Hilo
It is scheduled for Jan. 28th - the appt. is with a Dr. Martina Pazos.

I'm trying to get it pushed to the 1st week of Feb. (waiting for a confirmation) so I won't be traveling during the Superbowl!

I plan on bringing my husband to help with notes - even though he's having a hard time too with my Dx.

Mahea
 

tmasters

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Mahea,

I can totally relate to that. My wife Heidi has yet to come to any of my appointments. She just can't face all of this. On the surface she knows what's happening, she just won't participate in any of it and prefers to run away from it. So she doesn't go to the doctor, to the ALSA meetings, etc.

They started construction last week at my house. We're building an accessible bathroom with a roll-in shower and a new master suite with wide doorways and an elevator. The morning they started she called me in tears, she completely broke down and said this all makes her realize that this is really happening. And she didn't mean the construction, she means ALS.

So enough of me/us.

Can you bring a pocket recorder to help take notes then? I think they're under $40. Also, you gotta pay to park at UCLA, but if you show a handicapped placard, they wave you in for free.

I've met Dr. Pazos and she seems nice, but don't really know much about her.

Keep the faith,
-Tom
 

Mahealani

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Messages
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Diagnosis
09/2008
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Tom:

I know it's hard for everyone, family and friends, but especially the spouses.

I'm still having a hard time telling friends and co-workers. Sometimes I just don't want to bring it up, but my symptoms are bad enough now people are noticing.

You are so lucky you are able to fix your house up - I'm worried about my house, my bedroom and kitchen are upstairs. There is a den and bedroom/bath downstairs that my college son stays in now - I may have to move in down there eventually.

Thanks for the notes about UCLA - I'll keep in touch.

Mahea
 

brendapals

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Hey Mahea ,
I couldn't remember if I welcomed you to the family or not! I have to remind myself it's ALS I have, not Alzheimers! lol
Wishing you a very good visit with the neuro at UCLA. I can't say that I blame you for trying to avoid superbowl weekend.

And yes, I too, am married to a wonderful man, Dan. He went to my first ALS clinic visit, along with our 3 boys. He doesn't really know how to handle all of this right now either. I go to the support group nearby every month, bunch of great folks, and I went to my 2nd clinic appt by myself. I wouldn't recommend doing that. Tom is right-see about an inexpensive recorder, that will help a lot.

Never give up,
Never let up,
Never lose faith,
brenda
 

Mahealani

Active member
Joined
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Messages
56
Reason
PALS
Diagnosis
09/2008
Country
US
State
HI
City
Hilo
Aloha Brenda:

Thanks for the words of encouragement and nice to meet you! It sounds like you have a wonderful family.

I'm a big football fan (UH Hawaii and Steelers) so I want to be home to watch - that seems a little selfish, but I would rather be watching the game then going to the clinic.
I'm hoping I can change the date.

My husband is Mike, we've been married 34 years in March.

Mahea
 

brendapals

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Hey hey!
Another Steelers fan, I think?:smile::smile: I can promise you, barring any natural disaster, my crew will be at home watching football both this weekend, and Super Bowl weekend!

Dan and I will be married 22 yrs this April, can't hardly live with him, but wouldn't want to live without him! Does that make sense? You should be able to see some pictures on my profile page.

take good care,
talk soon,
brenda
 

tmasters

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Messages
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PALS
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Brenda, Mahea, and all,

Denial issues aside, I've found that ALS brings Heidi and I closer together. We hit 30 years last month. She's wonderful.

Good luck on the UCLA visit (and your favorite team).

-Tom
 
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