Bunches of stuff

[Guest guest]

Hi all,

While I was on vacation all kinds of interesting things were discussed here. I'm not sure I'll ever catch up on the messages! Then as I was trying to get caught up, our electricity went out and stayed out all day. * & * & & ^%%$$##@@@!! So we had a pile of laundry and a ton of messages to read and answer with no way to do it.

On the neck pain issue: I have had neck pain that becomes an unbearable headache, sometimes lasting for a week. The only solution has been a really good massage. The muscles just get really jammed up and inhibit blood flow causing the headache. I've also found that working on the Computer at a desk causes a lot of neck problems for me. So I use a laptop, on my lap while sitting in a comfortable easy chair with a tall back and foot stool. It works very well for me. I also have a TempurPedic bed and pillow. We are in the process of getting a TempurPedic adjustable split bed so I can read and watch TV in bed.

On the Neurontin issue: Dr. Armon prescribed Neurontin for me to help with breathing and pain problems. It seems to have helped quite a bit. I started very slowly, 100 mg for 4 days, then 100 mg 2x for 4 days, increasing the dose every 4 days until I reached the current dose of 300mg 4x a day. Dr. Armon said the dose was a very individual thing and it really needs to be slowly increased to the amount that is right for you. In the beginning I got sleepy after every dose, but that doesn't happen now. Neurontin might be of benefit in slowing the progression of PLS but it will take more investigation to determine any benefits it might have. It was thought to be a treatment for ALS but failed to show measurable survival benefit in the human trials, but it did prove to be of help with breathing and was very promising in the early trials. It could be that since PLS is slower it might have time to be of benefit.

On the diagnosis dilemma: Ask your neuro about ordering an H-MRS. It is a special MRS that can determine reduced NAA to creatine in the brain, consistent with ALS or PLS. The H-MRS is not available everywhere so you might need to search for one, but it was able to confirm my PLS diagnosis since MS was the other possible diagnosis. Dr. Armon at Loma is the one that diagnosed me after 5 neuros, including two at Mayo, decided I was just wacky. Of course, I am pretty wacky, but that is another story! I think it is VERY important to find a good diagnostician. Not all neuros are good at diagnosing difficult cases, especially when you have two or three other conditions complicating the picture. Also, you might want to contact NIH. They are actively recruiting patients for these two studies: Diagnostic Evaluation of Patients with Neuromuscular Diseases and: Nuclear Magnetic Spectroscopy Imaging to Evaluate Primary Lateral Sclerosis, Hereditary Spastic Paraplegia and Amyotrophic Lateral Sclerosis (one way to get the H-MRS done). Some of the PLSers on this list have been to NIH and can tell you more about it. You can go to the ALS-PLS website http://www.als-pls.org/research.htm for a link to these studies.

On the baclofen pump issue: I really feel the pump has been a tremendous benefit to me. Like Lavon, I doubt I'd be walking without it. I have had virtually no problems other than the spinal headache in the beginning. My physiatrist, Dr. Brandstater, insisted I have the blood patch to eliminate the headache and that worked instantly. Dr. Brandstater also put several limitations on me for quite a while after the surgery such as bending and raising my arms over my head. He said they have had no problems with the catheter dislodging when they started implementing the movement restrictions. It is important for the area to heal adequately before going back to full range of movement. Dr. Brandstater was also very cautious in increasing the dose. He started me at 50 ug, kept me on the oral dose of baclofen for a week, gradually decreasing the amount. Then he increased my pump dose by 10% every two weeks to a month. I am now at 316 ug day. I need another increase because I'm have a lot of spasticity.

On the California Connection: The Handlery Hotel is giving us a group rate of $109 per night Our meeting room is free, we get a continental breakfast included as well as refreshments and they will provide complementary transportation to and from the airport as well as transportation to any of the area attractions within a 5 mile radius. They have promised to put us all in the main building, close to our meeting room and the restaurant, saving all their handicap rooms for us. We have a block of 25 rooms (we need to fill at least 20 rooms to get the meeting room) and they have promised to find us overflow rooms at the same price at a nearby hotel if needed. I'll be setting up the reservation process with the Handlery staff next week. They seem to be very accommodating to our needs. The hotel is on Hotel Circle and as it's name indicates, there are a bunch of hotel/motels nearby. As mentioned, I'll be providing more information soon. So far I have Dr. Armon lined up to speak to us. I'm also working on one other speaker. I thought we would spend a good part of Saturday visiting and we'll have breakfast and lunch in the meeting room. I will probably line up a dinner cruise for Saturday evening or something on that line. The local ALSA has offered a handicap van for transportation if anyone needs it and they are going to have the "Walk to D'feet ALS" on Sunday, so I would like to participate with the "PLS Power Team" if I can get enough interest.

On the Memphis SPF gathering: I would love to go but don't think it would be possible for me to travel alone. However, I am getting a power chair that can be taken apart and put back together in 2 mins and the heaviest part is 32 lbs. So maybe I could come if that all works out? Right now it would be impossible as I can't even count on the walker to get places. One or the other foot gets stuck and the walker keeps going until I put on the brakes, but then I'm stuck until I can get someone to help me get my foot back in place. While we were in Sedona last week I actually had to have a friend carry me to the car because my feet just wouldn't work anymore. How embarrassing! We had gone to a dinner party and I'm sure that those that didn't know me must have thought I was drunk. And I didn't even have the pleasure of drinking anything that evening! Oh well, I guess it gives people something to talk about.

And last but not least, every time I think I've adjusted and accept my PLS, a new wrinkle comes in to play. I then go through the whole thing all over again of denial, anger, depression, then finally acceptance. I can't count on driving anymore because whenever I go anywhere my legs start the cramping (like a Charlie horse) so I can't drive myself home. I'm thinking of getting rid of my car because of that. Why pay insurance and upkeep on a car I really shouldn't be driving? And if I were to get in an accident and hurt someone, I'd really feel horrible. I don't think it is worth it to drive anymore. But then I get angry and sad thinking I have to give up my independence.

ThomsonSolana Beach, CaVisit www.als-pls.organd www.geocities.com/mdmfoo/pls.html