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affected

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I am sure that discussing the medication options with your doctor so far as side effects and risks. I know a lot of PALS here find Baclofen very beneficial for spasticity.
 

Jabba

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I personally like my winkles, they show character! Anybody buying that? I take baclofen 40mg a day. I'm a big supplement guy so, magnesium, yes. My wife and I have done collagen off and on. I will take that up again. Thank you for the responses and again letting me know I'm not the only one. Praying for all of us.
 

MrEDS

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I take Baclofen and magnesium supplement for cramping and spasticity. Works ok for me. I rarely have cramps anymore.
 

duster

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Another upvote for Bill's advice, above. My father had initial symptoms very much like those you describe, and refusal to modify his routine created both near-term and long-term issues. Near term because of the falling, and long-term because many accommodations work better if they can be mastered earlier in the disease process. Waiting sometimes means the window closes and you have to move on to an even more complicated intervention.
 

Jabba

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Thanks duster. Did your Dad have ALS or PLS? My diagnosis is MND/can't rule out ALS/PLS.
 

old dog

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Just to clarify--I take 10 mg of baclofen in the morning and at night. I also take 2 mg. of tizanidine at bedtime. I find that tizanidine does more to relieve cramping and restless leg syndrome/twitching. The baclofen seems to relieve spasticity. The collagen does not have any immediate effect, but continued use seems to help. Before starting collagen I had to have someone lift my feet when getting into bed. I could do it on my own, but the struggle to get my feet up and under the covers brought on cramping. I can get into bed on my own now which I attribute to collagen use.

Jabba, Keep in mind that we are all different. Some neurologists consider PLS and ALS to be one disease. Others think PLS is a separate disease. Also, for insurance reasons, PLS requires an ALS designation. When seeing a new doctor, I explain that my official diagnosis is ALS, but my working diagnosis is PLS. You may be one of the lucky people whose symptoms never become full-blown ALS. I realize it is a near impossibility to think of yourself as lucky at this stage.

The members of this forum provide invaluable advice and information.
 

duster

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Old Dog has a good perspective here. After fiddling around with local neurologists for quite a while, we got Dad to University of Michigan for a workup -- his initial diagnosis was motor neuron disease that appeared to be PLS. Dad hung onto that diagnosis like a life raft, even as the disease progressed and began showing lower motor neuron involvement. His disease progression was quite slow, and Baclofen probably helped the most at keeping symptoms controlled.

I work in health care, and 'rule-in' / 'rule out' diagnosis can be crazy-making. You have distinct symptoms, and with a good provider you will be able to determine what drugs/therapies/interventions work best to control those at any given time. What prompted my post above, is that inconsistency is the one consistent thing about this disease. Dad would be be trucking along just fine, hit a rough patch, and find that he had permanently lost some capability in the span of a few days. This is what informs my comment about waiting to adapt before 'needing to'. Dad's brother and grandfather also had ALS, and their symptoms progressed markedly different than my father's.
 

Jabba

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old dog and duster, I really appreciate the input. I am taking the baclofen 10mg in the morning and afternoon then 20mg at night. I currently have Kaiser HMO for medical and have attended their ALS clinic. I have also attended Loma Linda University's ALS clinic on a grant. I plan on changing my insurance to a PPO and going to Loma Linda all the time. The Neuro at Kaiser takes a wait and see approach while the Loma Linda Neuro is more aggressive. old dog, thank you for the chuckle about being lucky, the more I learn here the more I count my blessings! To be honest, I am more worried about my wife and children (adults) than I am myself. They have relied heavily on me for 28 years. Thank you again, I am so glad I found this forum and for how welcoming you have been.
 

old dog

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Jabba, It sounds like you have your children well on their way to independence, and you and your wife have a retirement plan in place. These plans may still be possible but may require some adjustment of expectations. I think the most difficult thing for us stubborn individuals who are accustomed to being the caretaker in our families is to learn that we must now accept help. That's a two-way street. Family members must remember we are the same people we have always been. We may not be able to perform as well physically, but we are still "all there." You will find ways to continue to help your family.
 
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