NeuroTalk Support Groups - Cs or anyone please help

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Cs or anyone please help

Chuck

Can you remember the post you put in about your falling a lot and the change you made to improve your balance.

I want to move it up front so Fred/Taxi can see it.

Anyone else remember it?

Sounds like this one :

Quote:

Originally Posted by ol'cs (Post 29780)

I've started on the Apokyn pen. At least my knees are getting a bbreak since I started. I was falling down so much, I was ready to buy my first wheelchair, but I'll put it on hold for awhile.

Do any of you guys/gals remember Bella and Fabs from the old forum? Before Fabian passed on, Bella used to give us the day to day on Fabs. Remember, at one point , he was using the Apokyn pen and we had a thread about nausea in taking both Dopa and Apomorphine? Well, the antinauseant that the company has been "allowed" by the FDA to use with apomorphine is called "trimethobenzamide". This stuff (to me, and I must stress the point of only one opinion here) made my PD worsen, and the company had no alternative, so I just used dimenhydrinate (car motion sickness pills, no prescription) before my first dose of apomorphine.

Well, the stuff works (once again , one vote here). My first shot made me feel queasy, and after I got up to a therapeutic dose without antinauseant, I do get "the worms", as I call 'em, but it goes away in a short while.

Well, the short story is that I haven't fallen in a week (allowing my much battered knees a rest). The question to all here is, "they say that a typical dose has only short acting effects because of the short half-life of the compound in the body, but I am so much better at walking, i can almost throw away my cane for short distances, up to a day after a dose. It appears that there is something that the small amounts of drug left in the bloodstream is doing that is more long lasting, and has a positive effect on motor control. At least that's my take.

If you are getting to the point where you can stand up only with an aid, and are suffering bad "offs", I urge you to try the pen (it is expensive though). Self injection is really a peice of cake, doesn't hurt one bit (and this is from a guy who used to get big time butterflies when drawing blood) and is over in a few seconds.

Please give me and all of us any other "reviews" on the "pen". I realize that it is rather new here in America, but any pen newbies or vets, give us anything you ca as far as experiences, please:) cs

Those symptoms....

....sound very much like the ones that I feel that turmeric fixed for me and which I discuss in the current thread "Turmeric and White Rats". I'm sure it is a darn sight cheaper and we can always make curry:D

Please put yours into the one titled Taxi. He has taken 7 bruising falls in only a few days.

Fred (and all)..

First of all, let me say it's good to hear from you again Fred:) . Believe me, I have thought about you many times and how you were managing with advanved PD, being alone in a trailor and all. Not an optimal situation for anybody, especially those with a disability; but we takes what we gets, eh?
Now, down to the question. Three weeks ago, I was getting so depressed because I was falling far too often. Sometimes a bad fall, 4 or more times a week, and many times bending my cane almost to the breaking point in an attempt to hold myself up, shuffling with every step and festinating like crazy
Upping my sinemet and amantadine, just didn't do it because i couldn't hack the dyskinesia. And "falling" is a horrible sensation, very dangerous too. I've fallen taking a dinner plate to the sink and embedded glass shards in my arm, I've fallen down breaking furniture, I've fallen down on my knees so many times that the pain puts me in bed or in a chair for hours, each subsequent fall being worse. I've fallen down while alone in the house, and have taken a long time to right myself and tend to my wounds, nobody in ear shot. Bruises and cuts on top of bruises and cuts. I think ya'all get the picture.:mad: :( .
Well, this being an obvious time for a med regimen change (I mean, how the h-ll else was I suppossed to get up and fill my tankard of Vodka during commercials:D :D ) I went to my neuro and he and I went over my history and he said, "well, you've tried every agonist, and you have shunned them all due to side effects, do you think that it's worth trying the Apomorphine pen" I said "at this point , I'll try anything, short of a DBS". So he ordered up the pen. It's an expensive thing, so you've got to go through hoops with your insurance companies most of the time. THe box arrived at my house a week later, and (against protocol) I got right into it. I was supposed to wait for an appointment with the company representative, but i knew how to self inject from using Lovenox self injection needles for a "home administered heparin type of medication". The clincher was that one is supposed to pre-medicate for three days before the first injection, using the antiemetic provided (Trimethobenzamide). This drug actually made my PD noticeably worse, I phoned the company for advice , but they had no alternative (domperidone is not approved in the US) so I just used cheap generic dimenhydrinate (car motion sickness pills). My first small injection did indeed make me a bit sick, but I didn't vomit. This happened all the way up to 0.4 mL of the solution (my therapeutic dose) and continued for a few days , but at no time did I vomit. I was determined to see this thing through, even with the queasy feeling, and the use of needles.
Well, a few days after injecting at 0.4 mL, I got a big surprise (besides that one Bella:D ). I was walking short distances without my cane and festinating much less. After a week, I hadn't falllen even once, and was walking without my cane!:eek:
I only inject two times a day. It really helps when i go into an unexpected "off"; I respond within five minutes, and now, I'm not even nauseous after an injection and no hint of the other side effect, orthostatic hypotension, that can result in syncope.
It has helped me so much. This is the first agonist that iI have been able to tolerate and to me the message is clear. It is the addition of an agonist to my regimen that has helped me a lot. I'll bet that if I could have hacked Mirapex, I probably would have seen the same effect, but on the other hand , it could be unique to the apomorphine, I don't know for sure.
Fred, if you have any questions, just PM me. cs