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Angry Extremities

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Yesterday I actually found myself overly angry at my extremity deficits. When reaching out and using my left hand to pick up an object on my dresser, not only did I knock it over (pill bottle) but knocked several other items over as a result. In the sitting position I was in it required using my left arm/hand. Though the frustration with the numbness is ongoing, using my left hand is like using a club. I related an earlier story of when I first returned from the hospital a small group of friends and neighbors had a small welcome home party for me that had a disastrous turn of events when after a knock on the door, I answered and my neighbors wife handed me a cake she had baked on a good china plate. Unfortunately by reflex I grabbed it with my "club hand" and down it went. What an embarrassing moment. I destroyed her good plate along with the cake she had baked all over the floor...That was a moment in time I wish I could take back! Though sometimes I just wish that things were different, it ain't going to happen, acceptance of this is condition is a reality, I can barely remember what feeling and sensation in my hand was like. I mean after all, I didn't loose my hand it's there and looks normal, but I'm better served just thinking before reacting and understanding my limitations. Of course, easier said than done. You'd think being post stroke now almost 13yrs I'd have adjusted more but, not completely. I'm still conditioned and react as normal. I'm at that point that I shake my head and almost see the humor in it. 

 

This post was generated after I was reading the post about a member spraying a wasp nest and turning to run, down he went. I can almost picture myself doing something similar! Any instances you'd care to share funny or otherwise?

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Will2, don't beat yourself up about ongoing difficulties.  Especially with your left hand!

 

JOKE!!! 🤣

 

I think it's normal to still have good days and bad days.

 

I can't remember any time that's funny that people have handed over stuff.

 

The only time I can really remember is when we had a picnic in the bush with Wayne's family.  His sister offered me a sausage roll from a container full of them.

 

She said, very rudely, 'take it and pass it around,'

 

Very difficult to do when sitting in a camping chair holding food and nursing a drink on my leg.

 

She's totally ignorant to the deficits of a disabled person.  That day was the beginning of the end of our relationship.   Oh well.

 

Will2, I have to say...who hands a person who's had a stroke a cake on a plate? Who does that?

 

I'm sure your neighbour didn't realise at the time her faux pas, friends and family are just as new to this as us.

 

But seriously, it's a plate, my dude. No stress.

 

When you get down about something, just remember we love ya guts.

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Good read with some very good insight! I will continue and add the discussion when some energy comes around again. lol

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Sorry nothing immediately comes to mind other than variants of Janelle's story happen all the time. I now seriously hate "stand up" parties/occasions where people drink and eat and someone comes around with food and I can't take any as my hand is full and there is nowhere to put your glass down. I don't think anyone has asked me to "take one and pass it around" though that's a topper.

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wll, I am almost 13 yrs. out too, and I have done similar dozens of times. I will completely forget that my left hand is not entirely functional. The last time was about a week ago when I did exactly what you did. While trying to pick up one pill bottle, I knocked it and several others over. Thank God, the caps were all on securely, which hasn't always been the case. But it dawned on me that maybe I'm not just absent-minded, maybe I forget that my left hand was affected because I haven't given up yet. I still expect my lt hand to do normal things.

I also wanted to tell you that I take Baclofen for spasticity and tone. It helps me grab one pill bottle only, instead of trying to knock then all over. It's a muscle relaxer that calms the spasticity down so that I can control my hand better.   Becky

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There ya go will2 the humor of us and our messups! My goodness. It's almost a "laugh to keep from crying thing" I know.I believe you had said you were left handed like me? Yep I've had some fun with my left hand. It always wants to join in and that's a good thing. It is my right hand which is normal I struggle with sometimes. I never realized the vast difference in dexterity between the 2. My left had it all but now can't feel much of anything but my right hand is clumsy compared to what the left use to do. 

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I really sympathise with those who have "lost" their dominant hand.  I can do most of what I do because my loss was the non dominant hand so the other one has quite happily picked up the task of doing everything without "help". Mind you when that left arm goes off on it's own and knocks stuff all over the ship I say some very rude words. and one that still makes me swear is peeling foil off single serve food tubs.  So many times it's all ended up on the floor.  and then you lose your snack and have a huge mess to clean up.

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Heather I lost my right hand, my dominant hand.

 

One problem I now have is mixing up left and right. 

 

My left side has become my "right side", my dominant side.

 

So when I have to give directions,  either in the car or where  to find something, I really have to get my brain into gear before I open my mouth!

 

J x

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Green Queen do you notice that your left hand and mostly fingers have a hard time picking up say something very flat and thin? Being a lefty I could always pick up the smallest things with that hand. The right hand and fingers don't do things as well.

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I'm right handed and this is the hand most affected by the stroke. I say most because the left hand lost about 15% of its strength at the same time! However, I think I got the better deal than a person who lost everything in their spare hand because there was no real option for me, the right hand had to regain its dominance. Since every tool and gadget I own fitted that hand nicely finding an exercise routine was easy, I just built it around the jobs I was familiar with, like casting a fishing fly, knocking nails into wood and handling a screwdriver. 

The left hand did very well initially, it had to learn how to write, dial a phone, send a text, do up shirt buttons and most difficult of all find out how to use toilet paper. It performed all this admirably. 

I  improved speedily my ability to  walk. Primarily in hospital with a frame and on release with using a walking stick. After a few months I abandoned this too. This has led to the odd stumble and tripping scare but I've had no serious falls.

The most difficult thing to do again was to play guitar and keyboards. I have achieved some success with these but will never be anywhere near my previous ability. One thing has beaten me completely, that is to handle a screwdriver and retain the gained position while twisting the hand back for another bite! I have overcome this problem by using battery powered screwdrivers readily available on the market. 

The sudden loss of strength while carrying something important like a cup of tea or a plate still happens occasionally but have had no disasters for the last year or so, since luck has always been on my side. I'm in my fifth year of recovery and am still setting new targets. One thing I so not seem to improve despite regular practice is my ability to talk. I never ask anyone for their opinion because the answer would have to be affirmative, instead I wait for an unsolicited approval of my progress. This is pretty rare!

Deigh

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On 10/31/2019 at 9:25 PM, becky1 said:

 

 

On 10/31/2019 at 9:25 PM, becky1 said:

I also wanted to tell you that I take Baclofen for spasticity and tone. It helps me grab one pill bottle only, instead of trying to knock then all over. It's a muscle relaxer that calms the spasticity down so that I can control my hand better.   Becky

Becky, thank you. I will check with my PCP about this medication. I did however out of curiosity look it up and in some definitions it mentioned not for strokes? And some of the other definitions it did have similar side effects of constipation and possible urinary problems? I'll mention that having taken opioids for pain management several years back, some of the issues from straining to use the bathroom has caused problems with my plumbing even today that soon or a later I may have to have surgery corrected. In addition the prospects of straining on the coil repairs in my brain to stop the aneurysm bleed still give me concern that I certainly don't wish to put any additional pressures in that areas that would compromise the bleed repair. Does this Baclofen have any of these side effects for you? I will ask my doctor about it. I did look up my insurance and they do have this medication listed as acceptable for a discount. I was allowed Soma (muscle relaxer) during my pain management days and it helped a lot for the spasticity but my current insurance consider's it non-formulary and will not give a discount!!

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Oh, additionally it was my left non-dominate hand that is affected. Since I can still use my right I can write and use that hand as normal, gripping and/or manipulating objects fine. Playing a guitar is out because I used my left for all the fret work, chords, notes, etc. I tried that already and because of the god awful string buzzing and muted notes thats out. My hand just doesn't have the strength to really grip the neck well, even after strength training from therapy.

 

I just have to move forward and think before reacting when doing tasks these days..I'm getting faster at that though!

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will, I do have constipation problems, but had it before I started Baclofen. I'm in a wheelchair and have been told by my doc that it's due to a lack of mobility. I have had problems with my bladder since my stroke. Came home from rehab in"pull-ups" as they like to call them. But trained myself to use the toilet, like normal. It took me a year. Before I started Baclofen, I read on here several comments from caregivers mostly that Baclofen caused urinary incontinence /increased urination in their loved ones. I didn't want to undo a year's worth of training, yet I knew that I needed SOMETHING! So, I got the 'script filled and hung onto it for a few mos. When I felt brave enough I tried it. Guess what? It reduced the number of times that I had to get up in the middle of the night to go pee! As to Baclofen being used for strokers, all I can say is if that is the case, then an awful lot of people are on the wrong med because it's widely prescribed for strokers. The only problem that I've had with it is that it causes sleepiness. I take mine at night before I go to bed for that reason. I wasn't coiled, so I don't know how, or if Baclofen would affect that. But, I think you're wise to check. I can't guarantee you'll be able to play the guitar with Baclofen, but who knows? Good luck with everything.   Becky

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10 hours ago, becky1 said:

will, I do have constipation problems, but had it before I started Baclofen. I'm in a wheelchair and have been told by my doc that it's due to a lack of mobility. I have had problems with my bladder since my stroke. Came home from rehab in"pull-ups" as they like to call them. But trained myself to use the toilet, like normal. It took me a year. Before I started Baclofen, I read on here several comments from caregivers mostly that Baclofen caused urinary incontinence /increased urination in their loved ones. I didn't want to undo a year's worth of training, yet I knew that I needed SOMETHING! So, I got the 'script filled and hung onto it for a few mos. When I felt brave enough I tried it. Guess what? It reduced the number of times that I had to get up in the middle of the night to go pee! As to Baclofen being used for strokers, all I can say is if that is the case, then an awful lot of people are on the wrong med because it's widely prescribed for strokers. The only problem that I've had with it is that it causes sleepiness. I take mine at night before I go to bed for that reason. I wasn't coiled, so I don't know how, or if Baclofen would affect that. But, I think you're wise to check. I can't guarantee you'll be able to play the guitar with Baclofen, but who knows? Good luck with everything.   Becky

Thanks Becky for the info. I do have an upcoming doctors appt to get Rx refills and I'll chat with him about it. Anything's worth a try, you never know. I've already searched to see if there would be any adverse interactions with my heart med metoprolol and didn't find anything, though they did caution about those taking ambein (zolpidem) and baclofen. I've always had sleep issues and using ambien has always helped. I've never been too big on taking meds anyway, I'm always a bit cautious having only one kidney and wanting to keep it from any unnecessary work doing it's filtering magic. Lord knows it has been worked hard and put through it's paces since I was a teen injuring it in a baseball injury. No question having to use the opioids for several years put it through it's paces. Actually when I first was prescribed Soma for a nagging back issue, it worked great being a muscle relaxer. Using it after the stroke for the spasticity worked very well also. I only wish my insurance would pay for it but unfortunately it doesn't but does accept the baclofen. Thanks for the lead. I did check under the forum medication topics and not much there yet, it's looks to be a newer section. I'll keep you posted after I see the doc, thanks again!

 

 

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  What does "non-formulary" mean anyway? Soma has been around for several years-Certainly long enough to be formulary and certainly long enough have a generic. I

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9 hours ago, becky1 said:

  What does "non-formulary" mean anyway? Soma has been around for several years-Certainly long enough to be formulary and certainly long enough have a generic. I

Yea, it's generic is carisoprodol and worked great for spasticity. The problem is that with my medicare advantage plan called Medica, they classify prescription medications in a tier level. Tier I, II, III etc which there is a zero co-pay or little. The prescription medications that they will not offer a co-pay and you pay full out of pocket price they call non-formulary. I can still get a written prescription from my doctor for the medication but at the pharmacy my insurance will not offer any kind of co-pay unfortunately. On their webpage they list all medications and what tier they fall under. I had the same problem with getting the generic of Ambien (Zolpidem), while they will offer a zero co-pay for zolpidem 10mg, for me the zolpidem 12.5 ER (extended release) they consider non-formulary and the cost for 30 tablets is $61 whereas using the 10mg tablet which isn't the extended release I pay nothing for. Unfortunately, for me only the extended release tablet keeps me asleep for about 5hrs which is a blessing. The regular 10mg zolpidem will put me to sleep but doesn't keep me asleep and after a couple hours I usually wake up. Additionally, you can only be supplied 1 tablet per day (30 month) supply at a time. I already tried to see if they would give me 60 tablets for a 30 day supply, so if I were to awaken after a couple hours I'd just take a second one to get more than a few hours of sleep.

 

I already tried their appeals process by advising Medica that the 12.5 ER tablet is the only one that keeps me asleep for a full 5hrs minimum but, no go, even with the doctors recommendation. Thats the downside to my plan. Other than how finicky they are with med co-pays, recently when I had a smaller heart attack which required cleaning out valves and a stent, plus the in-patient stay, my only out of pocket expense with Medica insurance was $112 for the emergency services that transported me to the hospital. So the insurance is good as costs for those kinds of ER services and surgery, plus the hospital stay is very expensive. So, in the end, I just have to put up with their prescription quirks. Now, I just go to their online webpage and check prescription medications before hand to check pricing prior to having the doc write a script.

 

Whew...that was a lot of stuff to digest, hope it makes sense!

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On 10/31/2019 at 9:55 PM, Willis said:

There ya go will2 the humor of us and our messups! My goodness. It's almost a "laugh to keep from crying thing"msy compared to what the left use to do. 

Laughing is all we can do. Most oops we do are fixable.  It is frustrating, for sure, but your brain is trying REALLY hard to get your body to work. I drop a lot of things while grabbing with my right hand. Weak. I've had to buy more drinking gasses and plates. My mother got me a plastic lamp. At first I was insulted but considering how often I've dropped it, I'm thankful. And if you look under my refrigerator, you probably could fill my pill box many times over.

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I was on Ambien for awhile in the nursing home. It affected me like it affected you; 4 or 5 hrs after I  took it I woke up. Problem was I was wide-eyed and bushy-tailed. I wanted to get out of bed and they wanted me to stay in bed. Made for some interesting nights.

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Becky, so far the Zoldidem is the only sleep medication that has been effective in actually putting me to sleep. Unfortunately the Zoldidem 12.5 ER was the only one that kept me asleep. I have tried others without much success that don't give me lingering side effects like drowsiness afterwards in the daytime etc. Some I have tried include Lunesta, Trazodone, Restoril and Halcion. I finally settled on the one that does work but now my current insurance doesn't give an allowance for. I'll still continue to use the regular Zolpidem 10mg tabs just to be able to fall asleep, even if it is for a short few hours. The daytime hours are extremely tuff with the stroke especially with little or no sleep as I need to get out to the doctor appt's or other necessary routine stuff. 

 

There are many claims about folks sleepwalking and other behaviors that they do not remember doing, but I've never had those kind of side effects at all. 

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14 hours ago, ksmith said:

Laughing is all we can do. Most oops we do are fixable.  It is frustrating, for sure, but your brain is trying REALLY hard to get your body to work. I drop a lot of things while grabbing with my right hand. Weak. I've had to buy more drinking gasses and plates. My mother got me a plastic lamp. At first I was insulted but considering how often I've dropped it, I'm thankful. And if you look under my refrigerator, you probably could fill my pill box many times over.

😂 :heart:

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On 10/31/2019 at 9:25 PM, becky1 said:

wll, I am almost 13 yrs. out too, and I have done similar dozens of times. I will completely forget that my left hand is not entirely functional. The last time was about a week ago when I did exactly what you did. While trying to pick up one pill bottle, I knocked it and several others over. Thank God, the caps were all on securely, which hasn't always been the case. But it dawned on me that maybe I'm not just absent-minded, maybe I forget that my left hand was affected because I haven't given up yet. I still expect my lt hand to do normal things.

I also wanted to tell you that Ie relaxer that calms the spasticity down so that I can control my hand better.   Becky take Baclofen for spasticity and tone. It helps me grab one pill bottle only, instead of trying to knock then all over. It's a muscle relaxer

Becky, I already posted a reply but in another topic...Duh!! Anyway, I went to my doctors appointment yesterday and the short version of his answer was having one kidney along with the other medications I already take he didn't want to add any further risk to my overworked kidney. I typed a more detailed message in another thread in the Medication section. But thanks for the lead, I'll always look for new alternatives if often better than what I currently use in my med routine.

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