[Evonne]

Good Morning...I can still say that because it isn't noon here yet!
I had a rough week last week and I am hoping that the coming week is better for me. I have been feeling very lost and discouraged. I think that there is a combination of things going on with me that are making me feel this way. I haven't been feeling very good physically...or emotionally. I have been off of medications since November. The stiffness that I feel in my body is miserable. I try to stay positive, but some days it really gets me down. Emotionally, I have been really down too. Probably related to PD, but exacerbated by my life's circumstances right now. I NEED to find a job, but I don't even really know where to begin. As I said last week, the Nursing Assistant job just wasn't for me. I thought that I would like to go back to teaching preschool, but after a tour of a local preschool, I became discouraged. I walked into a room with seven little one year olds and one teacher. The kids were aimlessly wandering the room, many of them with snotty little noses. The teacher was busily attending to a couple of little ones in their high chairs. One little girl ran up to me and just wanted to be held. I was happy to hold her for the moment, but I honestly couldn't picture myself alone in that room , responsible for seven little babies. How in the world would I meet all of their needs? I became overwhelmed and on the drive home I wound up in tears. I have noticed a real decrease in my ability to multi task. As a result, I find myself getting very anxious and easily overwhelmed. I am not sure what to do about it, but I am going to mention it at my next appointment. Hopefully, my doctor will be able to get me on some medication that will work for me and make me function better. I would like to start up my own home day care again. I always kept it small in the past and it was easy for me to manage....and I enjoyed it tremendously. The problem is that my husband and my kids are not on board with it. My youngest son has ADD, predominantly inattentive type. It was difficult for him to have other kids in the house as he tried to do his homework. I understand the difficulty and I always did my best to try and make sure that I had the other little ones involved in a quiet activity while he was doing his work. That way, I was still close by if he needed me. It has been six months since I closed my day care down. In that time my husband has grown accustomed to having our house back to ourselves. He likes it that way. I understand that, too. So, that is where we are right now.

Yesterday, I got a call from the school district nurse regarding my nine year old son. Apparently, he has been having some staring spells at school that have his speech therapist, teacher, and the nurse concerned. His teacher has noticed this all school year. Gee, she couldn't have mentioned it to me any earlier...like maybe during one of the MANY conversations that I have had with her so far this year! The speech therapist just picked up on these spells. They are concerned about the possibility of staring/absence seizures, aka petit mal seizures. I had been concerned about this in the past because of the fact that he had two spells as an infant after vacinnation and the fact that he passed out twice after hurting himself. One of those times he lost bladder control. When I brought it up to his old pediatrician, it was dismissed. She said that he probably passed out because he held his breath. You know, kids hurt themselves, take a deep breath in and then hold it until they let out a big cry. He would take in that big breath and then just lose consciousness. At the time, I accepted that reason because it made sense. I had mentioned staring spells to his new pediatrician and also to the specialist that we take him to for his learning disabilities. One of the examples I gave them was that he was sitting at a Cub Scout meeting and all of the kids were sitting down on the carpet. As a group they were asked to help come up with some rules of conduct for the meetings. You could see that my son was paying attention...then it was as if he just blanked out. He was sitting there, but it was as if his mind had shut off. They both attributed it to his ADD. Now, there may be a possibility that we are dealing with something else. Yesterday I was told that during speech, he will be saying something and then just stop right in the middle of the word and go blank. The speech teacher recognized this about three weeks ago. Yes, I was peeved that they didn't let me know about this any sooner. My son is on Vyvanse, an ADD med. I checked the prescribing information and this is what I found: Seizures-There is some clinical evidence that stimulants may lower the convulsive threshold in patients with prior history of seizures, in patients with prior EEG abnormalities in absence of seizures, and, very rarely, in patients without a history of seizures and no prior EEG evidence of seizures. In the presence of seizures, the drug should be discontinued.

He has an appointment with his pediatrician on Monday. I think that he will need to have an EEG. I took him off of his medication until we have those results. The specialist that we take him to for his learning disabilities has suggested to me on numerous occassions that my son would do better if he were home schooled. So, I also have that thought rolling around in my head. I will let you all know how it turns out. Please keep us in your thoughts and prayers.

I wish you all a wonderful week.

[stevem53]

Hi Evonne!..Im sorry to hear about the challenges you are facing..My prayers go out to you..The stress that comes out of crisis and pd is a bad mix..It really rocks me when I get hit with a good dose of it..I dont recall what meds you were on, but getting a good medication regimen going will help, and will no doubt assist you in your quest for employment..Its so much easier to function when the meds are working, and what work I am still able to do, certainly boosts my morale, and my physical abilities


Ive been stressed out myself lately, havent been sleeping good for quite a while, and very symptomatic..I just had a plate of spaghetti, and it seems to have put me down for the count..And when I get very symptomatic, due to stress, I get so physically uncomfortable that I feel like jumping out of my own skin..It comes, and goes..I shuffle along for a while, then I walk almost normally, and it has little to do with the timing of meds, and everything to do with how I feel emotionally


Its 50 degrees here today, and all the snow and ice is melting..Its supposed to be milder here all week, so Im going to get my boat back in the water soon, and hopefully start getting busy..I need the exercise, and the feeling of constructive accomplishment that it provides to get back on the beam here..Getting out just once a week makes a big difference

[chasmo]

Evone;

one of our 15 year olds had a bad reaction to his vaccinations also. He is a high functioning Asbergers kid. It took us a long time to get a proper diagnosis! So don't give up!

I am in considerable pain having had my left shoulder replaced last Thursday. I fell Friday night which did not help matters either! The surgeon is one of the best at this and he told me to expect condsiderable pain and bruising but really!!!

I hope that the pain gets better so I can get my physical therapy going.

Very seldom does anything "put me on my ****" but this has! I wish I'd have stayed the extra day in the hospital with all the IV painkillers and the steriods.
Oh well, live and learn!

how was your week?

CHarlie

[dbiker2]

I have been short of breath for about 6-9 months and am finally getting around to seeing a Dr. about it. Had lab work, an EKG and a chest x-ray last week. This week I have to get a chemicaly induced stress test for my heart. The lab tests came back with no significant abnormalities. The chest x-ray showed something I wasn't prepared for, the wire going to my left stimulator appears to be disconnected. I can't have it replaced until they find the cause of my shortness of breath. That's my week .....how is yours?

[chasmo]

Darrell;

Didn't you have dystonia before your DBS? You might be suffering from DYstonia of the diaphram. I'd make sure that is covered in the list of "possibilities" for your shortness of breath.

Charlie

[Evonne]

I just wanted to let you know that I got a job working in an infant center at a Preschool. I will be responsible for taking care of four babies. I am excited about it and I am hoping that I will be able to manage it all.

I took my son to the doctor. The doctor seems to think that the petit mal seizures may be a possibility and he scheduled an EEG for my son in early March. We are on a cancellation list and I am hoping that something comes up sooner.

Steve...Thanks for the prayers. Sorry to hear about your stress and how it impacts your life. I also notice that I am worse when I am stressed, cold, or nervous about something. Have you gotten that boat out yet???

Chasmo...Thanks for sharing about your son. It is challenging when these things happen with our kiddos. I need to advocate more for my son. This has all brought it to the forefront of my mind. Sorry to hear about your shoulder...and your fall. I hope you get to feeling better very soon!

DBiker...Glad to hear that your stress test turned out okay...sorry about the problem with your DBS lead. I sure hope that they can get to the root of your breathing difficulties so that you can get your DBS taken care of. It sounds like Chasmo might be onto something regarding possible dystonia of the diaphragm. It is at least worth mentioning to the doc.

Hang in there!

[stevem53]

Originally Posted by Evonne

I just wanted to let you know that I got a job working in an infant center at a Preschool. I will be responsible for taking care of four babies. I am excited about it and I am hoping that I will be able to manage it all.

I took my son to the doctor. The doctor seems to think that the petit mal seizures may be a possibility and he scheduled an EEG for my son in early March. We are on a cancellation list and I am hoping that something comes up sooner.

Steve...Thanks for the prayers. Sorry to hear about your stress and how it impacts your life. I also notice that I am worse when I am stressed, cold, or nervous about something. Have you gotten that boat out yet???

Chasmo...Thanks for sharing about your son. It is challenging when these things happen with our kiddos. I need to advocate more for my son. This has all brought it to the forefront of my mind. Sorry to hear about your shoulder...and your fall. I hope you get to feeling better very soon!

DBiker...Glad to hear that your stress test turned out okay...sorry about the problem with your DBS lead. I sure hope that they can get to the root of your breathing difficulties so that you can get your DBS taken care of. It sounds like Chasmo might be onto something regarding possible dystonia of the diaphragm. It is at least worth mentioning to the doc.

Hang in there!

Congrats on the job Evonne!!

The boat is still in my driveway..I looked in it this morning, and theres still too much ice in it, but its around 60 degrees here and sunny today, so it wont be long now

[Chicory]

Evonne- congratulations on the job!

I hope everyone has a better week next week.

After consultation with my doctor about my symptoms increasing throughout the day, I am waiting to get a higher dose of Stalevo from my mail order pharmacy. Then I hope I won't be up at 3 am with leg cramps. For now, getting up and sitting at the computer helps relieve the cramps and stiffness a little.

[dbiker2]

charlie-steve-evonne.....yes I did have some dystonia mostly in my lower legs and my feet, but it has been years ago. however I will bring it up with the dr. .......thanks

[caz5346]

Hi Charlie,
Hope you are doing better with your shoulder. It'll be 3 years the end of April that I had my shoulder replaced. It wasn't half as painful as the knee replacement I had 6 months later. Last week I went to Mayo to have hip replacement checked out due to increased pain. It's been 12 years since I had the hip replaced. Dr. saw from the XRay there is a wire broke. Only way he could fix it is if I was put in a body cast for 2 months after more surgery. I told him Been there Done that. No thanks. I really am the bionic grandma.
Caz