Keeping you in my prayers. I'll say several on your clinic day.
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yea, beer is another thing he has had to give, just makes him feel bad, even just one.
I love my koi and pond. and I put up two planted tanks in the front room for Steve. Rainbows and a geophagus in one and small tiny stuff in the other(green neon, rummy noses and sparkling goramies)
Steve rode by himself, didn't like the group ride thing. but rode everyday to work along the beach front road. We took several long road trips on the bike
hi big Mark. my Steve used to ride. Your trike is wonderful! first thing I thought was perfect! someone has to haul the beer! lol. There were a couple times that big trunk would have come in handy! Anyway, Steve road as long as he could and enjoyed every minute!Hello bigmark1954. Couldn't help but notice your love of riding. My husband has bulbar onset also, his love is golf. He feels SO fortunate that he doesn't have limb onset, with the help of the golf cart, he can still golf a mean game , had an 81 Friday. This AM he is turkey hunting with the son-in-law. He hasn't been able to talk for over a year now, no eating but has had a PEG for year and a half. Lately he's having much fatigue, headaches. He probably needs bi-pap, could be CO2 build-up. Just wondering how you feel about all this, how you cope. He won't come on the Forum but he appreciates when I relay to him people in similar circumstances. My best to you!
Prozac is a wickedly mean drug. I like my Lexapro better, though it took 5 months for the side affects that I got. It took Zanax with the Lexapro the first week for me to get on it. Otherwise I looked like a junkie in withdrawal. Jumpy and sweaty. Lots of paranoia. That settled down. Then the night sweats, yawns, and gritting my teeth. But I'm glad I stuck it out now.
Trying nudexta for the overreaction to having a sad conversation or seeing a sad commercial or picture.
Tell the docs about the cognitive signs. Maybe a lower dose or different drug would be the way to go.
Got a ride on the hubbie's Goldwing today. May be one of the last ones. Getting hard to get on.
Take care
Mark,
So how did the clinic visit go? Mine was better than I though it would be.
Tracy
I agree with you Mark. I think alot of people are posting with two names. I only look at the DIHALS section when I'm try to kill sometime at work in between phone calls. I bring my i-pad along. I am going to try to have a garage sale next weekend. The kids have alot of stuff they've outgrown and I thought we could use any extra cash we make to help with our expenses to go see my dad. Have a nice weekend. Kim
I agree with you 100% that the dr. is a fake. But, I guess I'll play along with his games.
Mark,
Yep, still riding. Other than some right arm soreness and really mild weakness, all my symptoms are speech/swallowing related!
The bike's an '05 ElectraGlide, and I'm actually making my first trip to Sturgis this year! Riding to IL to meet a friend, then we'll ride to SD together. Afterwards, I'm heading to Santa Monica to catch the start of Route 66 and riding the whole damned thing! I figure it should take me... oh... about... August!! Not gonna be in a hurry, and not gonna have too rigid a 'schedule' since I'm riding alone. Skipped Daytona this year but will go down for Biketoberfest again. Trying to enjoy it while I can!
I've considered the trike option for later in the progression, I'd be interested to know how you like it.
>My dr says for me to keep working out, if I can do it....but lately I have been feeling like it is kicken my azz more than helping. DID YOUR DR RECCOMEND NOT LIFTING
my ALS clinic (Dr. Appell's in Houston) is adamant about *not* any muscle tear down (lifting, et al). Post an open thread in one of the forums and see what others say ...
Medication Dose Form Frequency Notes
ProCardia XL 60mg TAB 1 tablet by mouth every 12 hours Hypertension
Losartan 100mg TAB 1 per day by mouth Hypertension
Low Dose Aspirin 81mg TAB 1 per day by mouth Hypertension
Allopurinol 150mg TAB 1 per day by mouth Gout
Riluzole 50mg TAB 1 tablet by mouth every 12 hours ALS
Baclofen 20mg TAB 1 tablet by mouth twice daily Muscle cramping
Glycopyrrolate 1mg TAB 1 tablet by mouth every 6 hours as needed Secretions (excessive saliva)
Indomethacin 50 mg CAP 1 capsule 3 times daily with food as needed Acute gout attack
Centrum Silver Men 50+ TAB 1 per day by mouth Over the counter multi-vitamin
Vitamin C 1000mg CAP 2 x per day ALS
Vitamin E 1000 IU CAP 2 x per day ALS
Vitamin D3 2000 IU CAP 1 x per day ALS
Folic Acid 800 mcg (0.8 mg) TAB 2 x per day ALS
Dexilant 60 mg CAP 1 per day by mouth ALS
Tussin 30 ml Liquid 3 x per day ALS
Mucinex 1200 mg Gel tab per day spread over 2 to 3 doses ALS
Hi, Mark --
>I am curious about what you are medications you are taking for your bulbar als?
Sandy has the list in a worksheet so I will pass it on later tonight.
>Is your speech affected
yes, it is pretty bad but folks say they can understand me mostly
>Do you go to an ALS clinic, if so is it helping?
yes, the clinic meetings quarterly let us meet others with ALS, meet with all the docs and therapists all in one *long* day.
>still doing light cardio.....
I have been told that weights will take you backwards, speed up the progression -- all bad. Cardio is supposed to be good. we have a bike and vibration plate.
>I installed a trike kit on my HD Roadking last summer ... and can still ride it
lucky
-- back in my riding days I had a '47 knuckle, which I chopped and later converted to a trike, a '62 pan with the softest hardtail ever made, and a new '73 sporty xlch, which I chopped, and put 80k miles on it up and down the west coast
Max
Hi Mark,
Love your avatar.
I have the sons of anarchy seasons 1-5 (65hours) if you are interested, we can find a way to get them to you. Right now I have them on a memory stick and watch on the computer.
Cheers,
Casey -
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