Gene from MS Society came this morning. Things went really well. So much of my problems with my mom lie with COMMUNICATION. We both assume a lot & DO NOT express fully what we need or want we just ASSUME the other person knows. We both felt good after Gene left & are once again taking positive steps forward. I am going to renroll in an anger management program which my mom will be a full partner in.

Have not been to 12 step program in months. Was contacted by a friend from the group saying a group I USE TO attend was having a holiday party today & she wanted me to come. I was hesitant but since I felt so much better after Gene left I decided to go. The party was nice & it was a good meeting. My wheelchair is finally repaired & I made arrangements to go after the party to pick up the wheelchair.

My van has had many problems since breaking down on the Wantagh Parkway a few weeks ago. After $800 in repairs the van has problems beyond the scope of any mechanic. Personally I think the van needs a good psychiatrist or better yet an EXOCIST. Lights DO NOT work when they should or come on when they shouldn't. Sometimes the radio works, sometimes it doesn't; the clock when it works does not show the right time, I will be driving an a "warning sound" (you know the annoying bong) will sound repeatedly but NOTHING is open & there is no way to shut it off & the best one sometimes when I go to remove the key from the ignition the vans "back up" alarm sounds the ONLY WAY to stop the alarm is to leave the key in the ignition. Good thing I live in a gated community because this OFTEN means leaving the key in the ignition overnight. Long story short 3 mechanics later I am no closer to resolving the problems. Well for several months the ABS light comes on. Again all mechanics say there is NO PROBLEM - don't know why it comes on. Usually the check engine light DOES NOT come on. The last time the CHECK ENGINE light came on the van broke down on the Wantagh Parkway.

This said I WAS NOT worried when the ABS light came on going to the meeting today or that it was still on when I went to leave the meeting. However, on the way to pick up the wheelchair the CHECK ENGINE light CAME ON. I started to panic & IMMEDIATELY changed direction & headed toward home. Mom wanted me to pick up a few groceries but I figured if I was in my neighborhood & broke down it was MUCH DIFFERENT than being where the wheelchair place was & breaking down.

I was about a block from my house (not yet at the grocery store) & the speed limit changes from 40 to 30. I went to put the brake on to slow down, I do the brake & gas with my right hand I started to press down on the brake & THE BRAKES LOCKED UP. I remember seeing a small car like a mini cooper to my right & knowing my huge van would CRUSH IT; so I jerked to the left (going straight at this point WAS NOT an option car WOULD NOT do that). Well there was a HUGE TRAFFIC SIGN I WAS HEADED RIGHT FOR IT & THE BRAKES WOULD NOT STOP THE VAN. I honestly thought that the sign was coming thru the windshield & took corrective action as best I could. I took out the llghts, part of the front & side of the van, jammed the drivers side door & side sliding door closed. IT IS A MESS!

I have a contracture in my left hand from the MS & use a wheel spinner that is essentially a "slot" that my 95% disabled left hand fits in allowing me to steer. When the van came to a stop BOTH my wrists really hurt; the left one from turning the van & the right one from trying to hit the brake. I COULD NOT get out of the van because the door was jammed shut.

A good samaritan who witnessed the accident came to my aide. He called the police but I REFUSED an ambulance. He kept asking me if I was ok because I was trembling from the shock & he said very pale. I asked him to stay with me until the police came & he did. The police kept insisting I go to the hospital & assured me Esperanza could go with me. Esperanza was not hurt because when in the van she rides in a doggy car seat in the back passenger seat & is strapped in with a 4 point harness. The police & tow truck driver got my door open. I have adaptive devices, a handle, a stool with a handle, a leg lifter to help me get in & out of the van. The tow truck driver said using these things he COULD get me in & out of his truck & take me home if that is what I wanted.THAT IS WHAT I WANTED.

Had some hydrocodone & took that but the pain in my left hand is getting worse. It is VERY SWOLLEN & ICE IS NOT BRINGING IT DOWN. My left pinky is bent inward from the contracture & I often straighten the fingers to exercise them but when I straightened my pinky this evening I THOUGHT I WOULD DIE!

Updating my meds, etc. (with one hand) going to print them out & if I feel this bad in morning going to have mom take me to ER. I am in so much pain.

Van was being towed to local tow place that repaired it last time but when I called wheelchair place to explain why I wasn't there they said DO NOT send van to local mechanic - send it to them. The LOCK UP in the brakes could be the brakes but it could be the hand controls in either case the hand controls could have been damaged in the accident. I was able to call the tow dispatcher & they changed where van was being sent.

Probably go to ER in morning won't know more about van until Monday.

There is a FUNNY SIDE to this story. The police & tow truck driver get the drivers door open then the rear sliding door on the drivers side so I can get my walker. I take my walker out & the police officer closes the door. My van is entitled "PEG'S GRAFETTI VAN" I have saying stickers all over the van. On the side of the door that was damaged were 2 stickers (well there are at least 20) but 2 in particular drew the policeman's attention; "I SUPPORT MEDICAL MARIJUANA & I VOTE" & "ARREST CRIMINALS NOT PATIENTS" with a huge marijuana leaf. The tow driver noted how my "design" got messed up in the accident, the policeman points to the 2 signs just mentioned & says "you don't have any of this MEDICINE on you or in the van do you?" I tried to keep a straight face & said "NO" which was in fact the truth I HAVE NOT smoked in almost 7 years but the day it becomes legal I will be first in line to get a medical marijuana card. When the tow truck driver was taking me home he was laughing about the policman & the stickers.

Need to get off the computer; I am use to typing with one hand but my right hand is also sore from the accident so I need to say good night. Wait for an update.

Oh, what a trip! I know you're hurting, but glad you didn't get badly injured. Maybe they can fix the van right this time (fingers crossed).
Glad everything else went so well today, though!

So sorry about the car accident and your hurt hand. I hope it's better by the morning but if not an ER visit would probably be in order at least for an x-ray. Hope there's nothing broken.

Gene sounds like a Godsend! I'm so glad he was able to help and get the communication ball rolling.

I am so happy that you and mom are communicating again.

Hugs and prayers

Sorry I have not been around; my hand is hurting like well...

There is NO FRACTURE but possible ligament and/or tendon damage. The pain is so bad. I have to keep it in a brace 24/7 to prevent damage but do take it off to shower/ wash etc. This morning after my shower it swelled so bad & the pain was off the scale. Add this to the 24/7 neuropathic overall body pain that I have been experiencing & I am ready to put my head thru a wall. I am not scheduled to go back to the orthopedist for 3 weeks but a friend suggested I go to a noted hand specialist instead. Going to make an appointment on Monday. In addition to the damage from the accident I have the contracture from the MS so a hand doctor would probably be the best person to treat it not an orthopedist since there is not a fracture.

The van is a mess & tied up in petty childish nonsense. The van was towed to the same shop that failed to properly fix the van a month ago after I paid them almost $800. I tried to get it transferred to the mobility place but the first placed REFUSED sayiing that they had the van they were repairing it. I sent them an email saying they DID NOT have permission to touch the van. The mobility place then decided someone should do the body work before they worked on the hand controls & inspected them. The insurance company has their own body repair places. However when they called the company that had my van they were told that my van WAS NOT THERE! How come it was there a few days before? They finally admitted they had it when I said that if they didn't have it I was reporting it stolen & the police had a record that the van was towed to them & undriveable. Then they would not releae it until I sent them a written release. I faxed them a release 3 times & they still claimed they never received it. I faxed it to the new body shop once & they received it. The new body shop went to pick up the van after being told that the release was all they needed but THEY STILL WOULDN'T RELEASE THE VAN. Now they wanted a copy of my license & registration. After several attempts to fax these & them saying they DID NOT get it my mom finally went there personally with that information. Almost 2 weeks after the accident the van was finally sent to a body shop that could repair it. Now everything is tied up because of so many people being on vacation because of the holiday. I am told that it will be at least 3 to 6 weeks more before I can drive so it is not that I can drive the van it is just the fact that it is caught up in all this mishagosh. If I had the van my mom could drive it & that is easier for me to get in & out of than her car (a very small Intrepid). Relying on mom for rides does not always work out well either as she volunteers EVERYWHERE - at 80 YEARS OLD she still puts the Energizer Bunny to shame!

The MS continues to rear its ugly head thru all of this. The worst in when I get spasms in my injured hand & it is pulling against the brace. Then there is the fatigue. I use to "lose" about 1 day a month this was a day where NOTHING WOULD KEEP ME AWAKE. I take Nuvigil & I could take the medication, go back to sleep & sleep around the clock. This now occurs once or twice a week. It is so bad that the other day I went out for a blood test in the morning, came home ate lunch, fell asleep then proceeded to sleep thru 5 phone calls (very loud ringer with voice caller ID). My mom needed to reach me & came home worried that I might be hurt when she was still worried when she had trouble waking me but once she knew I was just in what has become known as my "comatose sleeps" she was FURIOUS. Does anyone else experience this?

On a similar note, my bio dad died before I was born but his sister told me that he too was a heavy sleeper. He once slept thru a house fire. The firemen carried him out of the house on his mattress (no easy feat he weighed over 450 lbs). He woke up on the lawn on his mattress & questioned what all the comotion was about. I was never like this I was always a light sleeper now I sleep irratically; a few hours here & a few hours there throughout a 24 hour period. I usually wake myself because I have to go to the bathroom or when I try to turn over (it is very difficult for me to turn over without assistive devices & when I am asleep I am not thinking of looking for them) but now 1 or 2 days a week I get these comatose sleeps & just cannot function.

Well that is all I can type for now with one hand but I am going to try to be around more - I miss you guys.

Wow, Peg, I'm impressed you got that much typed with ONE hand!! I can barely get half that with two! Well, one hand is numb so it's just along for the ride so to speak.

Sounds like your Mom is really busy. Good for her! I hope I'm like that when I'm 80!

I know it's aggravating but try not to let the whole "van situation" get you all bent out of shape. That kind of bad stimuli will set off the MS sx quicker than anything. Use this time to get some much needed rest.

I'm sure my advice is not really helpful but I am glad you checked in and let us know you were okay. I know the everyday challenges seem overwhelming when we already have the MS to deal with....and now you have the injured hand. I do hope you feel better soon.

I am happy you are doing some better.

Have you heard of dragon naturally speaking? you put on a head set and it types for you! I love love love mine.

I only sleep very heavily if I am under anesthesia. other than that I will wake if you walk onto the pebbles on my driveway. I am very aware of my surroundings at all times. Maybe its a side effect of prison work for so many years. maybe its anxiety. I do manage to get ok sleep, but have to really work to stick to a scheudule.