Status
Not open for further replies.

jennyhoff

Member
Joined
Dec 2, 2008
Messages
18
Reason
PALS
Diagnosis
05/2006
Country
US
State
Washington
City
Spokane
I have a couple questions I would like to have input on please. Just briefly, my progression-Dx ALS April '06, limb onset, powerchair dependent, hands severely diminished, right side worse, no bulbar symptoms yet.

1. The previous 2 winters have kept me inside for the most part because the cold wreaks havoc on my muscles and bones. I have great neighbors and great support, so it has been no big deal. This year however, has brought major anxiety. I have noticed anxiety having more of an impact on me over the last year. But it seems like suddenly it is worse. We keep getting storm after storm and I panic to get the sidewalks cleared so I have a pathway out. Small things pivot me into meltdown. Is this a new part of ALS?My blood pressure peaks and plains daily. I am on an antidepressant and I take Xanax as needed, which has been frequently lately. Anyone have experience, suggestions, ideas? I have tried meds, God and excercise so far. Do I need mental help? Life before ALS was very stable and strong.

2. I am flying out on Sunday to LA to board a week long mexican cruise. I was going to use a loaner chair from LA ALSA, but they didn't have one, so I am using my own. Any advice on traveling with a disability? I think I have it all covered, but wondered what any of you might suggest. (hopefully the trip might solve issue #1!)
Thanks all! Jenny
 

Phil M

Senior member
Joined
Dec 28, 2008
Messages
599
Reason
PALS
Diagnosis
5/2008
Country
US
State
Ga
City
Snellville
I have a couple questions I would like to have input on please. Just briefly, my progression-Dx ALS April '06, limb onset, powerchair dependent, hands severely diminished, right side worse, no bulbar symptoms yet.

1. The previous 2 winters have kept me inside for the most part because the cold wreaks havoc on my muscles and bones. I have great neighbors and great support, so it has been no big deal. This year however, has brought major anxiety. I have noticed anxiety having more of an impact on me over the last year. But it seems like suddenly it is worse. We keep getting storm after storm and I panic to get the sidewalks cleared so I have a pathway out. Small things pivot me into meltdown. Is this a new part of ALS?My blood pressure peaks and plains daily. I am on an antidepressant and I take Xanax as needed, which has been frequently lately. Anyone have experience, suggestions, ideas? I have tried meds, God and excercise so far. Do I need mental help? Life before ALS was very stable and strong.

2. I am flying out on Sunday to LA to board a week long mexican cruise. I was going to use a loaner chair from LA ALSA, but they didn't have one, so I am using my own. Any advice on traveling with a disability? I think I have it all covered, but wondered what any of you might suggest. (hopefully the trip might solve issue #1!)
Thanks all! Jenny


Other than the anxiety I experience after getting my diagnosed. I am the opposite. If I can make it through the initial shock of a als diagnosed (wich was the most stressfull thing of my life). Hardly anything bothers me now. The most important thing to me now. Is to make the best of everything. Seems like there is less stress in my life now than ever. There are so many things now that I don't have to worry about.
Try to relax, and enjoy yourself, loved ones, and others. Thats the most important part of our lives now. I bet once your there. You will wonder why you were so uptight. Hope you have a great time!
 

rose

Extremely helpful member
Joined
Mar 29, 2008
Messages
2,879
Reason
DX MND
Diagnosis
7/2008
Country
US
State
Maryland
City
Anytown
Jenny, the anxiety may be UMN related. (emotional lability) I have a fairly serene personality, still do for the most part, but I have periods of time where things that never would bother me really get to me. I noticed it before I had any sort of diagnosis, and just thought the stress of being ill and not knowing why was getting to me. I was told this is part of the disease, and there are medications on trial now that help. Right now they are still in the trial phase, I believe here on the forum there are several that are participating. BethU and Brendapals are two that are. I qualified to be in the trial, but travel time to the clinic I go to kept me from going ahead with it, and also it has seemed better lately. I'm 53, still not menopausal, but I wonder sometimes how they tell the difference when its women of a "certain" age that are affected by this. My anxiety has not flared recently, but just today I saw a commercial for the Marley & Me movie, and the puppy pictures sent me into a crying jag, so obviously I don't have it licked yet, but occurrences of crying are much less than they were six months ago.

Quadbliss, that is a long time forum member, has a link with some helpful travel information. Maybe Al, one of the moderators, will post a link to it. Quadbliss (Mike) has stuff in there about wheelchairs, etc. I worked as a flight attendant for many years, but have little knowledge about regulations, etc, because by time people made it onto the plane, this part had already been taken care of.

Good luck! and enjoy the trip and getting away from the massive snow. Some sunshine and warmth should work wonders for your anxiety, regardless of its cause!
 

jennyhoff

Member
Joined
Dec 2, 2008
Messages
18
Reason
PALS
Diagnosis
05/2006
Country
US
State
Washington
City
Spokane
I think this has to be temporary or weather related, because for the past 2 1/2 years since diagnosed,I haved lived as you say-actually could even see ALS was a blessing. I really do enjoy and appreciate life, but this recent thing is really over stupid stuff! But your words are truly good advice Phil, and I thank you very much. Jenny
 

jennyhoff

Member
Joined
Dec 2, 2008
Messages
18
Reason
PALS
Diagnosis
05/2006
Country
US
State
Washington
City
Spokane
And thank you too Rose. I have wondered about the hormonal possibilities too-I am 50. I am also curious about the trial medication. If anyone has more info, I could ask my clinic Dr about it. And I will search for the travel info-I am excited! I may not want to come back!
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Hi, Jenny ... As Rose mentioned, I'm in a clinical trial for a lability medication called Zenvia. When I started the double-blind study last fall, it had terrifically good effects ... not only did it clear my anxiety, anger (my biggest problem with ALS), and inappropriate emotional outbursts, but it boosted my energy and mental clarity.

Early in December, I finished the double-blind study and immediately (the same day) started an open-label trial of the same medication. Unfortunately, this med is not nearly as effective ... I've had three emotional meltdowns in the last few weeks, some anger issues (no comments from the peanut gallery please :)) and a complete loss of energy again.

I believe the difference must be in the dosage. If I was experiencing placebo effect the first two months, why wouldn't I have had the same reaction to the "real" drug as the placebo?

In any case ... yes, there is a product on the market that can help enormously, and if uncontrolled or inappropriate emotional expressions are an issue for you, I would talk to your doctor about Zenvia. It is on the market for diabetic neuropathy, but it affects the entire bulbar region, which is why they are testing it again ... to see its effect on ALS patients. Your doctor can write a script. You may have to experiment with dosages, but I have not had any side effects from it, so it seems a pretty safe med.

There is another member of this forum (Pat) who is taking it as prescribed by her doctor. I haven't heard how it works for her. I think she just started recently. There is also a CALS (Jimmercat) whose husband is in the trial, so she might have feedback too.

In any case, these emotional/psychological issues ARE definitely a part of ALS. They are classic symptoms.

Best of luck.
 

Phil M

Senior member
Joined
Dec 28, 2008
Messages
599
Reason
PALS
Diagnosis
5/2008
Country
US
State
Ga
City
Snellville
Beth....The drug you refer too is a Glutamate inhibitor, and Rilutek is supposed to reduce Glutamate. Can these 2 drugs work against each other? I'm probably missing something. Just courious.




Zenvia is a combination of two well-characterized compounds, the active ingredient dextromethorphan, and the enzyme inhibitor quinidine, which serves to increase the bioavailability of dextromethorphan. This first-in-class dual action glutamate inhibitor is believed to help regulate excitatory neurotransmission to diminish the unpredictable emotional episodes of pseudobulbar affect (PBA). AVANIR is developing Zenvia for use in PBA (also known as involuntary emotional expression disorder (IEED) and emotional lability) and diabetic peripheral neuropathic pain.
 

sharonca

Distinguished member
Joined
Nov 27, 2007
Messages
423
Reason
PALS
Diagnosis
12/2007
Country
US
State
CA
City
Mentone
Try looking at Quadbliss's site. He had tons of info on traveling with ALS.

Sharonca
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Phil ... I have no idea if the drugs can work against each other. In my case, it's moot, since I couldn't tolerate Rilutek. But actually, wouldn't they be more likely to reinforce each other?

I'm no chemist (among other things I'm not) :)
 

brendapals

Senior member
Joined
Jul 6, 2008
Messages
953
Reason
PALS
Diagnosis
06/2008
Country
US
State
any
City
any
jenny,
I have been taking Rilutek and Lithium together since 7/2/08, no side effects, that I'm aware of anyway, and don't know if they're helping. Thankfully, my insurance picks up most of the expense, so I continue on them.

Within a week of my diagnosed in June 08, I was crying uncontrollably, talked to my neuro about it and he had me start Zoloft 150mg every day. I was already taking 100mg, so it was just an increase. Actually I have done pretty good with this combo for the last 6 months.

Maybe the weather is giving you some of the SAD symptoms ( I think that stands for Seasonal Affective Disorder, or Seasonal Anxiety Disorder ) - meaning that your symptoms will improve as the weather improves.

My neuro also gave me Xanax to take as needed, but I've only taken 3 since July. Like Phil said, haven't really had a need to be so stressed now that I have the diagnosed. My husband probably needed the Xanax worse than I ever did! lol:)

Happy New Year to you and everyone,
hope you're feeling better soon,
brenda
 

GlenBrittle

Very helpful member
Joined
Oct 9, 2008
Messages
1,530
Reason
PALS
Diagnosis
10/2008
Country
CA
State
Ontario
City
Alexandria
Hi Jenny ,

I too am taking Rilutek & Lithium since mid december. I have renamed them the fart pill and the space pill respectively. The space time seems to be diminishing , but its relative to the amount of energy I have at the time. And ... it has calmed me down (a pleasant side effect)

Brenda , can you pm me the dosage of the Lithium you are taking ?

Happy New Years Everyone, we have survided another year !:lol:
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Mike aka quadbliss is at www.quadbliss.com The site has tips for travel with chairs etc.

AL.
 

jennyhoff

Member
Joined
Dec 2, 2008
Messages
18
Reason
PALS
Diagnosis
05/2006
Country
US
State
Washington
City
Spokane
I just wanted to update you all about my "trip" I was telling you all about! I followed your fantastic ideas on where to get info-thank you! But this is the letter I sent out to friends and family-read on and hopefully enjoy!(yes, it's ok to laugh at my expense........)


Hello friends, family and fans of the "get Jenny the heck outta town" club.

Many of you were aware of or part of my family's plan to send Jeff and I on a cruise down the Mexican Riviera, leaving this morning. I had planned on sending a cyber letter to you all from aboard the Carnival Pride this afternoon. You know, poolside with Jeff, hat and sunglasses on, dark brown cabana boys flirtatiously serving "tapas", pina colada in hand, tapping my toes to the music of the colorful reggae band, watching the sun set on the wide open horizon, and looking forward to 7 more glorious days of the same. This was the cruise hosted by Lowen and Navarro. They are the music songwriters/artists of which I had met Eric Lowen online-he was diagnosed with ALS in 2004 and continues to perform and amaze.
I have been bragging about how competent I have become at travel plans-I had planned for EVERYTHING I said. Crossed all my t's and dotted every i. I ran into a bump on Wednesday 4 days before departure day when ALSA of LA had informed me that the powerchair I had planned to borrow to use while on the cruise, (eliminating the issue of traveling with my own chair) was no longer an option. At first thinking of blowing a gasket, I calmed down, took a breath, decided to have some faith, and made the decision to travel with my own powerchair. I quickly slammed into reverse, and started over.

Searched until I found a cab that would handle both my chair and I, get us to the airport at 4:am Sunday morning, and return us home the following week-CHECK. Called the airlines several times until I was completely assured that they understood how important the handling and safety of my chair was to my mobility, That I could drive it to the door of the plane, and rest assured that it would transfer with me to any connecting flights and that they could and would do the job safely-CHECK. Locate and reserve a shuttle that could again take, Jeff my chair and I from LAX to the ship, and again when it was time to come home- CHECK. Researched travel advice from experienced traveling PALS. Researched and printed ADA and FAA info about the rights of the disabled during travel. Friday night-All paperwork for the cruise filled out, all documentation for both of us prepared and bundled, all prior checkins available to be done by computer done. Suitcases packed, luggage tags filled and attached, power chair charger, tools, manual packed-yes, on Friday. Went back and reconfirmed pick up and delivery times. Like I said-sounds like all t's and i's right? Really not a bad accomplishment for anyone let alone a half person like me! Jeff likes to think I'm a bit overly thorough but even he thanked me Friday for all of my work on the details.

OK, so this is how it played out. Great relaxing day on Saturday. Early to bed. Said my prayers-asked in particular for good travel weather. (Which we did have by the way-thank you God) Up at 3:00 am. Cab arrives 1/2 hour early @ 3:30 am, because he knows how important this is to us.

$50.00 had us arriving at the airport at 4:30 am. Beautiful morning-clear dry roads for the first time in weeks,clear sky, blue and sun finally making an appearance. Went to the checkin and stated that I did not want to check my powerchair with my luggage as they preferred-no problem-(thank God we didn't). Security-piece of cake. Preboarding and getting me comfortable-a breeze. Watching them lower my chair and get it stowed safely, peace of mind. Believing we had done it and were on our way out of snow buried Spokane for a much needed warm week of fun, priceless.

This would be where the alarm would ring to wake you from your sweet dream. Instead it was the voice of the pilot telling us that they needed a mechanic to check out a "light" indicating a problem. Quickly evolved to the "light" needing a part, and a crew to replace it-thus putting us in and out of Seattle, into LAX, and shuttled to Long Beach to embark at the soonest 4-5. About an hour after loading had been cut off and the Pride had sailed into the setting sun. They removed us all from the plane.
After several calls to the cruiseline to make sure they were all answered the same, that yes indeed the ship WOULD be gone by the time we got there, we decided to gather our things, recall the cab, pay another $50.00 and head home to our big giant igloo. At 11:30, after the cab had returned, and Jeff had spent an hour running wildly through the airport looking for our luggage, which we were assured was somewhere-no longer on the plane, we got in the cab and headed home-without our luggage.

So- now Lisa has begun the claim process, and we can only hope that this was merely a practice run for the real deal at another time! If nothing else, I see it as $100.00 "training" to pass on to my comrade PALS in "HOW TO PRETEND TO TRAVEL WITH ALS"!
Nonetheless, thank you all from the bottom of our hearts for your contributions, efforts and prayers! I will do all that I can to eventually bring this trip to fruition. And oh, the good news? Our luggage actually made it to LAX. In time to make the cruise. They were loaded on the plane that left before we boarded! For real! Thank you again and love to you all~ Jeff and Jenny
 

kelly

Senior member
Joined
Oct 6, 2006
Messages
661
Country
US
State
ny
City
saratoga springs
My heart seriously dropped when I read your note. It really sounded like you did everything you could to plan for the amazing trip. As we know...so many things are out of our control. ALS...sure teaches us this one. I know you did not need one more lesson...on this. I really appreciated your optimistic tone and ability to laugh at a really crappy situation. My hubby and I are trying to rent a accessible RV to travel cross country this summer. I know we will have some serious bumps in the road...but like you we will conquer them. Thanks for sharing the start of your journey!
 

t34gib

Distinguished member
Joined
Jan 2, 2009
Messages
234
Diagnosis
12/2008
Country
US
State
FL
City
Fort Pierce
The beautiful trip that almost was

Sorry about the delay in your trip, but you handled it all so well! It didn't sound like you were having a meltdown! The story was beautifully written. I can't wait to read about the actual trip. :)
 
Status
Not open for further replies.
Top