New to the forum..trying to cope as a caregiver and help my husband

[kbritton]

I'm reaching out for some support and comfort I guess. My husband was just diagnosed a little over a year ago with PLS. It's scary bc he's 33 and most arent diagnosed until they're in their 50's. He's in large amounts of pain everyday. It's hard to watch him go through it everyday. Some days are worse. He's been having lots of muscle spams in his legs and back... falling is sparatic...he's just experienced brief paralysis in his rt leg. His left side has always been the worse side since he's been diagnosed now his rt side is catching up. i/we are scared about what's to come especially since he's so young. He's tried several different pain meds given to him by his neurologist but nothing works. has anything been successful for anyone? if nothing works...how does he cope and live with the pain he experiences everyday? How do i help him?

 

[olly]

Hi and welcome to the forum.

I think I can offer you some hope......I started with pls back in 1999 aged 30/31 yrs old,that was 15yrs ago.
The first few years my progression was or seemed rather downhill but eventually most find as myself that it evens out and is slow progressing.
I had left leg paralysis ,clinical weakness on first neuro exam. This is believed to be due to spinal shock from an acute severe umn lesion.
My left side has always been the weakest others also find they have a weaker side.
The paralysis does get a little better,my paralysis at first was having to drag my lower leg now that is only when it gets real tired .
I can still walk round home or very short distance outside with stick ,I use a mobility scooter to get about.

You should ask about baclofen (muscle relaxant) ,this is the main medication used for spasms/spasticity....I believe I would not be functional as I am now if it had not been for baclofen.
I have learn't from my 15yrs experience to listen to my body,rest when I need to but try to keep as active as I can.
Pls is no picnic but it can be manageable with meds and aids.

You can look back in the archives at threads,theres a wealth of information.
Any questions just ask.

 

[dalvin]

Also tonic water seems to help, at least a glass a day, some drink more. I usually drink it in the evenings so it helps me rest

 

[kevinw]

Olly pretty much summed it all up, my left side is where it started also. As far as the pain I take two Baclofen four times a day also...alone with Zanaflex four times a day. The question I always have is, how would I feel if I didn't take them? You basically forget what normal feels like. I don't have pain once I get my day started, the problem is getting the day started. For myself, it feels like I've been hit by a car every morning and I would do anything to stay in bed. Once I'm up and showered (I have a handicapped shower which helps a lot), and take my first round of medications I'm okay after about an hour and a half. Other than that I don't know what else to say, other than each day starts the same, then my body wears down as the day goes on. Just like Olly, I just use a cane or walker around the house and a scooter if I go anywhere (I have a power chair, but no handicap van yet to haul it). I was diagnosed in 2008 when I was 38.

 

[Clearwater AL]

I remember when I'd wake up in the morning, walk to the bathroom, come out, put my socks on, put my pants on... standing up! On one leg! Now, I have two Baclofen and a glass of water on the night stand which I do before I think about standing up. Then, I hold onto the dresser, then the wall, then the door casing, then the sink next to the commode. I do the same coming out but now I sit on the bed to put my socks on and my pants. Standing up? Forget that now! It takes a while but the Baclofen finally kicks in. But I try to remember those who no longer can do that without help.

 

[kevinw]

I remember when I'd wake up in the morning, walk to the bathroom, come out, put my socks on, put my pants on... standing up! On one leg! Now, I have two Baclofen and a glass of water on the night stand which I do before I think about standing up. Then, I hold onto the dresser, then the wall, then the door casing, then the sink next to the commode. I do the same coming out but now I sit on the bed to put my socks on and my pants. Standing up? Forget that now! It takes a while but the Baclofen finally kicks in. But I try to remember those who no longer can do that without help.

Exactly, I can remember those days. Now I keep one of those walkers with the seat next to my bed so I don't have to stand to change at all. Plus, I remember being able to hold on and "wall walk" to the bathroom in the middle of the night. Now I need the walker at night when I'm half asleep and my legs just kinda drag along. I started that after I fell and hit the floor in the middle of the night, luckily I hit the floor loud enough to wake up my wife.

 

[miker1267]

I'm reaching out for some support and comfort I guess. My husband was just diagnosed a little over a year ago with PLS. It's scary bc he's 33 and most arent diagnosed until they're in their 50's. He's in large amounts of pain everyday. It's hard to watch him go through it everyday. Some days are worse. He's been having lots of muscle spams in his legs and back... falling is sparatic...he's just experienced brief paralysis in his rt leg. His left side has always been the worse side since he's been diagnosed now his rt side is catching up. i/we are scared about what's to come especially since he's so young. He's tried several different pain meds given to him by his neurologist but nothing works. has anything been successful for anyone? if nothing works...how does he cope and live with the pain he experiences everyday? How do i help him?

This is my first post to this forum. My wife was diagnosed with PLS in 2000. It quickly cost her her job as a police dispatcher due to her slurred speech and inability to say what she was thinking. I had difficulty understanding her. She has since been taking baclofen which certainly helps. Shortly after all this developed she started taking a supplement called Juvenon that I had been taking. Within a week of starting she had a dramatic lessening of the pain in her legs. Her speech has also improved where I have no trouble understanding her but she still is slow at times in forming her thoughts into words. The supplement counteracts free radicals in the body and contains Acetyl-L-Carnitine, Alpha Lipoic Acid and Biotin. My doctor said they are safe but didn't know enough about their efficacy. I don't know if this would help others but I pass it along in case someone wants to try it. These supplements can also be purchased at health food stores, I just found it more convenient to go with the all-in-one pill. If anyone tries it I would be very interested in hearing the results.

 

[04grace2]

My doctor is an ALS/motor neuron specialist who is always up-to-date on research. Last May, he mentioned that there had been a study that revealed many ALS patients had low levels of acetyl-l-carnitine (I think it is actually called something else on the blood test) and taking the supplement had shown some improvements especially with fatigue. He wanted me to take it for my PLS related fatigue. He also ordered a blood test to check my levels before I started. It ended up that my levels were very low. I could tell a big difference in the way that I felt. I was definitely less fatigued. At my next visit he noticed that my clinical exam had actually improved some. I am pretty convinced that it has helped.

 

[olly]

I have a few questions...

Miker,hello and welcome to the forum.

What exactly is in this health supplement?
Your wife has had pls about the same amount of time as me,where is she at progression wise?
I have had a very healthy lifestyle,no drinking or vices ,eat fresh food only no processed foods ,take suppliments....I think this has kept my progression slow.

Grace,good to see you.

That's very intresting ,worth asking my doctor about.
Is it a health supplement or only prescribed?
What is the name of the medication you tried?

Thankyou both for this intresting information.

 

[olly]

gone to moderation but I had some question,will turn up later .

 

[miker1267]

The supplement is the "original juvenon". We are on an automatic monthly plan that runs about $33.95 a month. Non-prescription. My wife is actually better now than when she was diagnosed. She still drives, walks (carefully) without aid, and her speech is much better than when this started, although verbalizing what she is thinking is sometimes difficult. She still has problems with balance, etc, and there is a lot of insomnia too. If you decide to try it I hope it works well for you. Her neurologist seems to have no interest in it when we tell her about how it has helped. She is a traditionalist and has no faith in supplements, etc. All we know is that it has helped my wife tremendously.

 

[Clearwater AL]

Being honest... your posts sounds more like a pitch for another of Dr. Weils supplements for any ailment one could suffer. But, many believe Dr. Weil is the guru of healing and well being. Glad it helps your wife.

 

[Clearwater AL]

Post went to moderation... I forgot if you mention a doctors name it's got to be Ok'd first.
Stay tuned. (Posted above.)

 

[miker1267]

I was concerned that someone would think I was promoting a product as a shill, so to speak. That is why I mentioned that the ingredients can be had a your local health food store. I have no financial interest or any other interest in the Juvenon product other than we have found it to bring a lot of relief to my wife. Do what you wish with the information. The original poster of this thread wanted to know if someone had tried anything that worked and I responded because we had.

 

[olly]

Miker,thank you for sharing your knowledge.
I am a believer "you are what you put in your body" ,I will look out for the supplement you mentioned.

I am very much like your wife with progression ect.....I have progressing cognitive problems such as memory,reading and writing difficulties and like your wife difficulty finding the right words.
I have also suffered insomnia for over 10yrs with pls,i take prescription sleep aid but doctors are very unhappy to give it.