Research study Memantine

[Blackpool]

As many cures have been found by accident when looking for cures for other illnesses I have accepted the invitation to participate in a study to evaluate the effectiveness and saftey of memantine for patients with Als.Memanite is approved for the use in Alzheimer's disease also used for the treatment of Aids related dementia. The purpose of the study is to determine if memantine might slow the progression and loss of motor nerve cells. I will let you know if I am accepted and how it is going.It is being done at the University of Alberta the Principal invetigatorsr Sanya Kalra,Dr. Ming Chan.Sub-Investigators Dr, Glen Baker,Dr Ross Tsuyuki,Dr. Wendy Johnston. :smile::smile::smile:

 

[BarryG]

Way to go Blackpool! I have decided not to participate in the mementine study because of the travel and stress involved with me (and a helper) travelling to Edmonton. Even though they will pay my expenses it is still very difficult on me to travel especially in the winter on the snowy roads of northern Alberta. Also the study requires me to lay flat on my back in the MRI machine for about an hour and I have saliva and phlem issues when I lie on my back so that is another reason.

I hope that you are accepted and that this study helps us.

Barry

 

[paleshia]

hi blackpool,

when you are in a study like this, do you quit all other meds? are you taking any other meds currently like rilutek?

thanks, just curious, need to make a few decisions myself about treatment.....if you can call any of the options treatment.

jen

 

[Blackpool]

Hi Jen, I will know more when I go for the sceening next Thurday, they have asked for a list of meds and I will have to have a breathing test and blood work done and yes I am on Rilutek.
Barry I was in your area last week it has been awhile since I was there, lots of new buildings going on but still a beautiful area by the mountains. I can't blame you for not driving the roads in winter I wouldn't either. I have the same problem with laying on my back(no comment Glen) and have breathing and Phlegm problems the co-ordinater said they would for go the MRI part.

 

[paleshia]

wondering how your screening went? do you have to stop taking rilutek?

my first neuro put me on namenda (which is memantine) off label until i saw the als specialist. I am tryting to decide what, if anything, i should take now. Rilutek, lithium, memantine, etc.

what is the dosing for the memantine trial?

hope you are doing well, that's more important than all this medical mumbo jumbo!

thanks, jen

 

[Blackpool]

Hi it went well, I have been accepted and will be going again in a month for the long visit EMG ect. I can take all the meds that I take now including Rilutek.I don't start taking the drugs until the 5th month they want 4 months without and 4months with so they can compare notes. They have completed 22 studys and need a total of 40 although he did say they are trying to get the number lowered. The whole trail is 9months.I will have the option of staying on the drug at the end of the study I will have to wait and see if they have results by then.Thanks for asking.

 

[Blackpool]

Hi jen forgot to tell you my breathing went up from 58% to66% and the speech and swallowing appointment was excellent. I am feeling full of hope at the moment.I would take what ever the Dr. is willing to give you as long as he or she has your best interest at heart.Something will have to work someday it may as well be now.

 

[BarryG]

Hi Beverly, I am glad that you are accepted into the Mementine study. I wish that I could too but it is too difficult for me to travel. Have you been to Dr. Chan's lab yet? I have likened it to Dr. Frankenstein's laboratory (don't tell him I said that, he is such a nice man) what with all of the jumbled together electronics and wires. My dad was a ham radio operator and he was always building his own equipment and that is what doctor Chan's lab reminds me of. Don't get me wrong, he does cutting edge research but much of his lab equipment emphasizes function over form (which is as it should be).

 

[Blackpool]

Barry thanks for the warning , I won't get to freaked out when I see it. I don't blame you one bit for not traveling the roads in winter. I was going to ask about the device that is like a pacemaker for the diaphram, it seems to be available in France. Hey we are a bilingual country maybe that will give us a jump up the ladder to use it.lol

 

[DebbieR]

My dad is just finishing the memintine study. We have one more visit to go. I don't know if it helped or not - who knows where he would be if he wasn't on the memintine but it has been quite an experience. Dr. Chan and all the staff are phenomenal. Very kind people. Dr. Chan's lab is really quite something. Barry - have you seen his new lab? He just moved into it about 3 months ago.

Blackpool - what is this device for diaphram?

 

[BarryG]

Debbie, no I haven't seen Dr. Chan in quite a while and so now I am interested to see his new lab. His old one was so far from the clinic that I think that I would have to take a bus, I certainly would take a long time to walk there anyway.

 

[DebbieR]

Barry - yes his old lab was really far away and I would be concerned about finding my way back in order to pick up dad when he was done. His new one is not much closer but it is bigger.

 

[paleshia]

Beverly, Hooray on your breathing numbers! Any good news is welcome, right?

 

[Blackpool]

There was a new thread on 09.07.09 Titled New breathing device from Mayo clinic and a video Dayport Windows Media Player. It was interesting.
Good news however small is welcomed.
Barry I hope your trip to the coast went well, although I am sure you will miss your son. What is he taking in University?

 

[BarryG]

Hi Beverly, my trip went very well thanks. It is a long way but I wasn't in a rush so I was able to break it up into short(ish) days and not get too worn out. Andrew is studying Visual Arts (painting, photography, sculpture and video) as well as Japanese language. He started out in Humanities, majoring in Film Studies and English but even though he has always been a good writer he much prefers what he is doing now and there are a lot fewer papers to write. The only thing is, it is a lot easier to store a paper than a painting or sculpture!