Old 06-23-2009, 11:48 AM #1 (permalink)
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Default PLS, Memory and Bachlofen

Has anyone out there w/PLS noticed problems with their memory, specifically shot-term memory loss? Of course, it could be the oral bachlofen I've been taking for 2+ years that is doing it. Also does anyone know of people who have had the bachlofen pump put in and what is their evaluation of its effectivenss? I'm schedule to have one put in on July 14 and while it seems to be the best way to go, I'd love some reassurance.

I'm learning a lot thanks to you folks and will have more questions and perhaps some insights as time goes one. Enjoy your day.

joe
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Old 06-24-2009, 05:04 AM #2 (permalink)
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hi, yes i do have problems with memory and cognitive issues as well.
i have been on baclofen about 8-9yrs now.

to reassure you ,i have only heard good reports about the pump.
one lady i heard of was totally incapacitated,she got the pump fitted and it gave her a new lease of life. she went off traveling and doing things she never thought she could.

if you can not tolerate baclofen orally or it does not relieve the spasms then a pump is the best thing to try.
i hope it works well for you...................you'll be running about in no time
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Old 06-24-2009, 07:04 PM #3 (permalink)
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I have the pump for quite a while now. NO problems! I was listed in the forum as Raymond B. until there was a glitch in the program and I was blocked out. You can read a great deal about the pump by either going to my (Raymond B.) postings and/or this a thread on this subject. Take a look, I think it will be quite enlightening from different people with different experiences.
Good luck!
Rayboo alias Raymond B.
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Old 06-25-2009, 06:46 PM #4 (permalink)
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Joe,

I was just DX with PLS. I have been having memory and cognitive problems for the last 6 months. I used to be a multi-tasking women, now I task. I was at the hospital today and lost my car in the parking garage....LOL... You have to laugh, I am surrounded with post-its!

Icecream Lady
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Old 06-25-2009, 07:25 PM #5 (permalink)
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Guys Guys Are you not surprised you have Memory issues ? This is a very very Stressful event in your life . You are preoccupied with all kinds of thaughts like whats going to come of me . am i going to die ,am i going to be an invalid , this cant be my life . Personally i was Crushed . Im not kidding i even had days when i cried alot . So dont worry about a few things you forget . Time to Slow your Thaughts down .Sit down and enjoy your life the way you have never done before . Your Friend Geo
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Old 06-25-2009, 10:29 PM #6 (permalink)
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Last year, my Mom was diagnosed with Alzheimers, and was on Aricept and Namenda, until the diganosis of PLS last month. Her memory loss was the beginning of her problems. Then, she was sceduled for carpul tunnel surgery on both hands. THe orthopedist said that her hip pain was degenerative disc disease, and she was just getting old. It wasn't until we went to see a doctor in Manhattan, that did extensive testing, that the diagnosed of PLS came. She has been taking Baclofen for just 3 weeks. We cannot tell if it is working. SHe is also doing PT and going for accupunture. We are doing anything that we can to help her. Geo is right. Of course there is a LOT of crying, frustration, and anger. We live one day at a time. Obviously, I see that memory loss is part of this illness. We were told to keep her mind active, and not to see around. At first, my Mom just sat home and watched TV. We give her tasks she can handle. Sitting around, and being alone is horrible for your mind. Get company, friends and family to visit. Good luck to you all.
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Old 06-26-2009, 01:09 AM #7 (permalink)
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Thanks to all for your inputer about bachlofen/memory concerns. My hopes that I'll regain better use of my legs (be able to go up/down stairs, walk without the walker, etc.) are buoyed by your input. I also can't wait to get off of oral bachlofen as it has screwed up my digestive tract. While I'm here, what is the take on PT and PLS. What PT activities/exercises are most helpful for relief of spasms and inflexibility.

Joe
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Old 06-26-2009, 01:12 AM #8 (permalink)
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Rayboo

How do I get to your posting about the pump?

joe
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Old 06-26-2009, 01:28 AM #9 (permalink)
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Baclofen Pump

Here are the posts he was talking about.
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Old 06-26-2009, 04:34 AM #10 (permalink)
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Default hello everyone.

icecream lady.
dito lol. i too was an accomplished multi tasker,being a single parent and working fulltime i had to be.
now,well its hard enough trying to do one thing at a time.
i think sometimes its due to the physical effects of pls like slowness and general clumsiness.

drvcolombo.
sometimes ftd can effect those with pls as well as als,this is so sad in these cases as mnd is supposed to in general leave alone the mental functions.
intrestingly,my hips are weak(more so the right one).

amatopops.
stretching is the best thing you can do or swimming if you are able.
i had a pt for a few years but did not get anywhere,i found making up my own stretching routine works better.
i would love to go swimming (used to be a good swimmer)but now especially my lower half of my body is too weak. unless someone held me up from the waist i just sink.


r.i.p michael
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Old 06-26-2009, 05:09 AM #11 (permalink)
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Hi Amatopops,

We agree with Caroline. The stretching is the best. My Mom was too weak to go to the gym to get PT. so the PT came to the house. We found it better, if you can get out, to go to the gym and use the equipment to do your exercises. At home , my Mom uses silly putty and works it in her hands. She uses bands,(like large rubber bands) to stretch her legs. Unfortuntealy, nothing has helped or deminished the spasms. She recently started taking Baclofen, so I can't say if it helps yet. Mom definitely says that accupunture allevites pain. Not sure if it mind over matter, but who cares, as long as she feels better.
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Old 06-26-2009, 06:53 AM #12 (permalink)
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drvcolombo.
i forgot to add it can take anything from several weeks to three months for the baclofen to kick in.
it took a couple of months or so for me before i felt a difference.
hopefully your mum will notice some relief over the next weeks but as we have discussed before a pump is a good option.

r.i.p michael
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Old 06-29-2009, 01:54 AM #13 (permalink)
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Thank you Caroline. I will tell my Mom tomorrow about how long it takes Baclofen to kick in. Cute cat!
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Old 06-29-2009, 12:53 PM #14 (permalink)
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The neuros I've dealt with have told me it is not in my best interest to get involved with prescriptions for my spasticity and cramping. They have been concerned with the potential side effects stuff like Baclofen might have on me. I just tolerate they symptoms and go on with things. Some days, not so bad.

My last neurologist told me he'd write me up for baclofen if I really thought I needed it but after reading how some have reacted to it and realizing my limitted cognitive abilities as they are, I will continue to decline the offer.

PZ
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Old 08-13-2009, 08:14 PM #15 (permalink)
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Yes, and mine was confirmed by a neuropsychologist about six months ago. Finally got a diagnosis of PLS today....


Quote:
Originally Posted by amatopops View Post
Has anyone out there w/PLS noticed problems with their memory, specifically shot-term memory loss? Of course, it could be the oral bachlofen I've been taking for 2+ years that is doing it. Also does anyone know of people who have had the bachlofen pump put in and what is their evaluation of its effectivenss? I'm schedule to have one put in on July 14 and while it seems to be the best way to go, I'd love some reassurance.

I'm learning a lot thanks to you folks and will have more questions and perhaps some insights as time goes one. Enjoy your day.

joe
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