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We've been talking about spasticity lately, and I mentioned I'm on baclofen. 

 

My clonus in my bad leg has been getting crazy, so I talked to the chemist about when to take baclofen ie before bed and before my afternoon nana nap, as opposed to in the morning etc.

 

The next step will be to increase the dosage, because the change in timing hasn't made a huge difference. 

 

Anyway, I have a cold (why I've been absent; I feel terrible) and haven't updated my medication box, you know the ones.  All set outso you take the correct tablets each day. 

 

Well my spasms have been almost non existent. O figured out that because I'm getting tablets out of the packets every day, I've been forgetting the baclofen. 

 

Strange that NOT taking the tablet that's supposed to stop spasms  has stopped the spasms.

 

Do we take medication too willingly, or is this a fluke?

 

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Hard to say as Baclofen is not one I take. It could be that the clonus is now gone naturally. Mine went away the more I used my legs. Spacticity and clonus are supposed to reduce as you regain connection of the pathways.  I'd leave the Baclofen out for a couple more weeks and see if it the clonus/spasms come back, you can always start taking it again if you need to.

 

I do tend to try non medication methods for problems first. So when the Doctor says we can try "x medication" for the problem I tend to look for other ways. But it depends on the problem. Medications almost always come with side effects and you end up taking 1 tablet for x and then 2 more for the issues created by tablet 1, and another one for the issues created by tablet 2, and it can cascade until you rattle 🙂 .  So its a balancing act and deciding if the cure is worse than the disease. I'm not saying don't listen to your doctor or ignore issues but look at the pros and cons objectively and make a choice. Of course the more meds you are on the more interactions there are too. Managing our complex conditions is not an exact science ever. Having an occasional complete review of your meds is not a bad idea.

 

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True, Heather.  I am seeing the doctor next week because of the pain in my side issue, so will mention it to him. With the exercise bike, I may be able to stay off the baclofen. 

 

I'm on pariet for reflux, which is caused by the aspirin. 

 

I need to take the blood thinner due to having a lesion.

 

The thin blood plays havoc with my cycle, so I have a merina...

 

Never ends!

 

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I hope they have gone for good ( fingers crossed)

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No Baclofen for me. I had been suggested in an earlier thread by another member here to give it a go for muscle spasticity but unfortunately my PCP advised against it as he was concerned about my health having just one kidney. Like possibly many others here, I take several prescribed meds for different things obviously and not wanting to clash or contraindicate with one another. Shame really, I would have at least liked giving it a trial. My Doc is a good family friend and I really value and respect his opinion. Like you Janelle, if it doesn't work, or has unforeseen side effects, I either change med's or quit using that particular prescription all together. Understanding that many different kinds of medications affect people differently, what works for you may not for me.

 

I wish you well in getting it all sorted out Janelle, there may be many different roads to your final destination, and may yours be a smooth one..

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Thanks Kelli!

 

James, it's interesting you say your doc said no baclofen for you. Not all medication is for everyone. 

 

I have actually stopped using baclofen.  I listened to what Heather had to say; I've been exercising the bad leg instead of doing nothing. The spasms are still there, but so much better!

 

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Janelle I either missed it or you didn't go into detail. I remember you talking about getting a stationary recumbent bike. Did you? Are you using it. It is not easy and takes time to see results but has meant so much to me. I was really hoping to share a few things I've learned. I did have the bike before my stroke and used it pretty regularly. Willis

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Please share, Willis.

I'm not constant enough in using my bike...yet.

My biggest problem is getting my bad foot to stay in the stirrup to get going. That's very annoying!

 

Any inspiration is more than welcome!

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On 12/8/2020 at 7:07 AM, GreenQueen said:

Thanks Kelli!

 

James, it's interesting you say your doc said no baclofen for you. Not all medication is for everyone. 

 

I have actually stopped using baclofen.  I listened to what Heather had to say; I've been exercising the bad leg instead of doing nothing. The spasms are still there, but so much better!

 

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Hi Janelle, I'm not all too sure that you were referring to my post above but that is what is so phenomenal about these web forums. So many folks exchanging great ideas and views/opinions. A wealth of people wanting to help people that would otherwise not touch one another from across the globe coming from the highest positions to unique ones that just may have the key info for your inquiry or situation. I've personally not ever tried a stationary bike but after reading about Willis and Heather's recommendations it has me diving deeper into a possible solution to help me get off my bum and try one, you never know until you try, like the saying goes. 

 

And this is as mentioned, I used to love riding my bike up to the marina for a wonderful 5mi journey one way. Beautiful sunshine and a great bike trail all the way thru lots of coastal nature, now the bike just sadly sits alone in the garage:hmph:p4081031645-3.jpg

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I wish I could go back to a two wheeled bike. I now use a recumbent bike. The down side is you're low but you have a tall flag to attach to the back so cars and other vehicles..  I love riding . I will preach about this bike all the time for this is the closest to 'regular' riding for my balance issues. 

TT800167-300x300.jpg

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The hospital where I do my rehab has one of those bikes that they use for training and assessment so people can know if they'll manage before getting their own. It's a great compromise/adaption for getting you out and about again.

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On 12/9/2020 at 2:17 AM, GreenQueen said:

Please share, Willis.

I'm not constant enough in using my bike...yet.

My biggest problem is getting my bad foot to stay in the stirrup to get going. That's very annoying!

 

Any inspiration is more than welcome!

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Your bike is a stationary recumbent bike? I will take a picture of mine and send it and then we can compare notes. I was able to make then left stirrup tighter because I had then same problem. Even if you just make that foot a those legs spin 25 times and get off until the next day it's a start. The best thing for me is 

i got permission to put it in front of 1 of the 2 picture windows on the front porch. That helps and it is on the main floor so it is never very far away when the inspiration hits. It use to be upstairs and that was always a big deal, to have to climb the stairs 1st. 

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James, your poor bike! I sold my bike. We used to ride along the foreshore and I didn't like looking at the bike once I couldn't ride it.  Maybe some stationary recumbent bike riding may be beneficial to get you back on the normal bike.  

 

Hey James, are you English or something? I didn't realise Americans said bum!! TV does that I guess, as everyone on tv says butt!

 

Kelli that's so awesome! Take care getting on and off as well as riding, as I remember you have eye issues.

 

Willis I'll put a photo of my as yet unnamed bike up and we are off! Yes it's a stationary recumbent bike. 

 

Heather could you please message me a photo of your bike stirrup when you are home? I may need to steal your idea!

 

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1 hour ago, GreenQueen said:

James, your poor bike! I sold my bike. We used to ride along the foreshore and I didn't like looking at the bike once I couldn't ride it.  Maybe some stationary recumbent bike riding may be beneficial to get you back on the normal bike.  

 

Gosh, I'm so confused now :crazy:Janelle I'm not sure if your addressing my post from the quote above or not, as I'm not James but just another "Will" on this forum. Additionally I was thinking a stationary bike also! I wasn't even thinking about the 3 wheeler that Kelli posted a photo above, but thats just cool. With that said, I've seen them many times in my town. We have laws here that allow golf carts on the public roads as it's a smaller, lazy, quiet little coastal town having many older retirees. The only slight drawback is that the long bike path which goes from the public boat marina almost 15 or so miles north along the coast to our more popular Coconut Grove and further is but about 4-1/2 to 5' wide. The bike path is a popular family route for bikers, walking and jogging so if several bikers need to pass you is the width of those 3-wheelers going to be a small problem? Or just yield and move off the path so they can pass? I've never rode one myself but they look awesome to use. I could see myself using one.

 

My only hesitation about the stationary recumbent bike is that on another forum I belong to, one of the members said in jest "Great bike, and makes the best coat rack ever!" I'm afraid in my case this may happen also, as I have a good amount of stuff laying about gathering dust from my over enthusiastic purchases as is. Now actually getting out and about in the fresher air and sunshine would go a longer distance in keeping my attention focused. As I've always loved outdoor activities pre-stroke days.

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Will2, not James....

D'oh!!

So so sorry to confuse you!

JWalt is James!

Will2 whenever I've talked to James on this thread it's definitely you I've been talking to!

 

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Will2 the over enthusiastic purchase.

Now that I can relate to!

Everything seems like a good idea at the time.

My husband and son get more use out of the bike than I do.

I do have plans for that to change...

 

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JAnelle, When I was in therapy, the therapists always had to secure my foot if 5hey could and my lt hand if to whatever I WAS DOING. i have no feeling on my left side so that meant that my left foot didn't even know that it had a peddle under it, if I was riding a stationary bike, for instance. they secured my foot to the peddle with Velcro straps.WHEN THEY COULDN'T FIND VELCRO, THEY USED WHATEVER THEY COULD FIND THAT WAS LONG ENOUGH.   BECKY

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Becky Velcro is a great idea, although I'm wondering if I could manage that myself. You know, my good hand reaching all the way down to the other side to sort the Velcro out!

I will however, give it a go.

 

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11 hours ago, GreenQueen said:

Will2, not James....

D'oh!!

So so sorry to confuse you!

JWalt is James!

Will2 whenever I've talked to James on this thread it's definitely you I've been talking to!

 

🤣🤣

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Hi Janelle, no worries as it was really hardly worth mentioning, just a tiny confusing on my part. When I registered back in 08' info kept coming back that " this username is already taken" when I tried registering as just Will, so I had to add Will2 to move forward. I even think that any form of William came back as already taken also. Growing up my Grandmother always called me Will after my father who is William senior. To even make things a bit confusing she also called my Dad Will, so as you can imaging when she would call out "Will" we both would look at her not knowing which one she was addressing!

 

Anyways, yea I have lots of stuff I've made from impulse buys over the years. Especially visiting the forums. Somebody would say something about a product for health, and others would chime in also boasting about it and really the only way to verify if some of the claims were valid was to give it a go myself. Though it may have differing effects with different folks, I thought that if it does work in my case it would be of some benefit, so more stuff would be acquired. I'm currently trying Knudsen Tart Cherry Juice as a recommendation for kidney health as I just have only 1 since 1964, and I want to protect it as wisely as I can. Lord knows that I've done my share of abuse over the years to it smoking for a time, drinking as a teen and young adult, prescription meds, etc. As of last blood draw my results show that it still filtering well and doing it's job proficiently. 

 

I'm not careless with making my purchases, I do a bit of research and if it does show promise I'll give it a go. Like the 3-wheel bikes, thats a consideration. I'd love more than anything to ride mine but balance issues when I stop peddling are the main problem. And knowing myself, the stationary bike wouldn't get the real attention it deserves if I made the purchase today. Though I am a bit of an optimist, I'll likely give an interested product a 50/50 chance. And often it pays off. What really is a dig is all the items that I've no longer use of since stroking that I need to find a home better served for use as it's likely gathering dust around here. Some things I just gave away, like my lawn equipment that I can no longer use, and a lot of tools I have sold off. The list goes on. I'm confident many here have gone through this stage after coming to terms that sometimes though you give it a good go, the arm, or leg, or balance just doesn't improve as much as you'd like. I'm very thankful to have made improvements physically, but have also come to terms with working with the limitations, and doing a lot of praying. I am a believer in miracles, so there's that.

 

Well enough rambling on my part, thanks for listening/reading, and I wish everybody a safe and wonderful Christmas/Hanukkah and a great New Year!

 

Oh yea, I've been currently discussing buying another reclining chair to sleep in as I can only get reasonably comfortable sleeping in a reclining chair. Haven't slept in a bed in years, so I'm currently on the hunt once again:wink:

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Will2 I have recently sold my spa. A sad decision, but I couldn't get in or out of it on my own. That took away the chance to have a spa on impulse as I'm home by myself a lot of the time. So I get where you are coming from with getting rid of stuff.

 

You wouldn't believe it, but with the proceeds of the spa sale, we bought a new lounge that has recliners! Two single chairs and one three seater. There's four electric recliners in total, and they lay pretty flat!

 

I'd give you the brand etc, but they are made in Australia. I'm fairly confident they wouldn't be available in your neck of the woods!

 

All the best in your search.

 

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