[stevem53]

I am posting this for Laura aka Harley..She has been having a very tough time walking, and basically performing the basic tasks to function in her daily life..Ive been staying with her the past 10 days, and I now know the reality of her situation..She has been through the wringer with the Drs in this area, and has gone through a mis-dx in 2001 where she was told she did not have pd, but an anxiety disorder..So they weaned her off all her meds only to find out the they were mistaken..Then they zapped the living hell out of her trying to program her DBS last week, that per a CT Scan they did back in June, claimed that there were no abnormalities in, however, they now know that something is wrong when they attempted to program her left side and got zero results from it..They then looked at the same CT Scan they did back in June and now claim that theres a DBS lead in the wrong location..Bottom line, we know theres something wrong with her DBS, and enough is enough..Its time to get to the bottom of this, and get something done, and get it done right..My flight home is scheduled for Thu the 6th, and theres no way I can go back home and leave her here alone..Shes got no one here to give her the care she needs right now, and she does have a problem with anxiety..We know what anxiety does to pd, and she has a number of stressful situations to deal with, other than her health, and every other day, something rears its ugly head, and she goes down for the count, hard..She has fought hard for years, and Ive seen times when she has wanted to give up, and to be quite honest, there are times when I cant find the words to encourage her to keep fighting, because I can see the pain, the despair, and the frustration in her eyes, and it is breaking my heart to watch it..I will take her back home with me if I have to, because there is absolutely no way I am going to leave her here alone in the condition she is in..She cant be here alone period..Somehow she needs to get into the Cleveland Clinic, where the best DBS Drs are..She has excellent health coverage..We would appreciate it if anyone knows how long the process of getting her in there takes, and exactly what is involved?..Where can you stay that is affordable in the area?..Does anyone know anyone who can pull some strings to get this thing rolling ASAP?..She has to get it right this time, because she cant go on living like this anymore, and especially when theres hope that someone can get that damned DBS fixed, and she can enjoy a better quality of life

Thank You in advance for your thoughts

[Jomar]

Just thinking here...- this just popped into my head as I was reading

Can you send a copy of your post to MJF foundation??
Maybe they can get something happening for her??
It's worth a try - right?
unless someone has a better suggestion

A couple of our RSD members wrote their senators for help with getting approval of denied meds, and they got good results. That might be an option too.

Hugs & Good thoughts for both of you

[GregD]

Hi Steve,
I'm so sorry this is happening. I do know if you call for an appointment there will be a 3 month waiting period at the Cleveland Clinic. However, this would be considered an emergency and they should get Laura right in. I don't have any contacts at CC but i do know the head of neurology at the Toledo School of Medicine. I will give him a call and see what he might be able to do.

GregD

[gaykir]

You may want to try to contact the local Medtronic rep too.....

[harley]

I have noticed something not right for awhile now, at least a year. due to the fact that my living situation was very stressful, it was easy to blame all the extreme symptomology on that. i ended up in the hosp in june where the anxiety became primary focus. a cat scan was given, but the results read "no acute intracranial abnormality. status post bilateral deep stimularot electrode with no evidence of acute complication." there were also several references to "not parkinson like" or "atypical to parkinson symptomoloty" etc. my gait was referred to as "lurching, not shuffling." and i had developed paratonia, which i am still unsure of the meaning. NONE of this was discussed with me. instead, i was discharged with the advice to leave stressful marriage and got an increase in clonazapan.

the physical problems didnt get better. the anxiety lessened with more clonazapan, so the problems were easier to deal with. my husband left the home so that stress is gone. but, the physical problems are still there, if not worse. with the assumption that these problems were all related to environment, i went on a trip. two things happened. i pondered the possibility that the dbs was screwing up and wondered what would happen if i turned it off. nothing happened. no change at all. i left it off for a good 1/2 hour.. no change in my symptoms. second thing that happened was that my symptoms still had not improved though completely away from my living situation. the offs sudden and intolerable. i began to take xanax along with the clonazapan to cope with them. i went to the conference in altanta and had a horrid off. laying on the floor, unable to move, the parametics were called. i went to hosp...again, stress was the diagnosis. yet, i was not home. i was having fun.

since returning home, i have called my neuro numerous times insisting something had to be done. i had no support or help at home. my balance completely shot, freezing, unable to even speak at all at times. my neuro told me it was time to look into living in an adult family home.

then.. steve came
poifect timing

his help has lessoned the anxiety and his knowledge of what i am dealing with by seeing it first hand has offered me the security i need in knowing that though alot has to do with stress, there is definatly something else going on. he went to my neuro appt with me. i decided possibly an increase in voltage would help. what a nightmare. the left side responded.. but nothing out of the right. nothing except a volt that shot through my LEFT eye and arm. then.. the programmer lost control of his little programming box. it would not obey his command to shut it off. the voltage kept increasing and i sat in an electric chair for at least 5 seconds. finally, it got shut off, and i broke down.

this got their attention. the neurosurgeon looked at the ct given in june, and came up with a different analasis of it than the one given upon my discharge. NOW one of the wires was not in the correct place. NOW they want an mri. NOW they want another ct. NOW they want to do surgery. NOW i want NOTHING MORE TO DO WITH THIS MEDICAL TEAM.

admitedly, i will acknowledge that stress and anxiety does play a huge roll here. i know that just by how much better i am doin with steve here. at the HOPE conference, there were times i walked, talked, and felt completely normal. BUT THERE IS STILL SOMETHING WRONG. my offs are sudden, and very hard.
Steve and I are putting together a plan. I want to go to Cleveland clinic.

Need advice.. should I have mri and ct done here? It is scheduled for the 10th. I am thinking this may get me into Cleveland quicker.

[RLSmi]

Laura and Steve,
I felt so helpless when I read your post last night! I hope things settle down at least so you can get some rest. I agree that a CT and MRI there is likely to get you in to the Cleaveland Clinic sooner. Also, the more communication between the docs there and at CC, the better, assuming that you can identify someone at Cleveland who is likely to be involved in Laura's care.
Keep us posted on how things develop.
Robert

[reverett123]

Laura and Steve-
I wish I had a bright idea, but all I can offer is a shot in the dark. A couple of weeks ago I wrote about what a difference a cheap potassium supplement made to me. "Lurching" would have been an admissible adjective. And finding myself helpless on the floor would not have been unthinkable. Since your life has been hell for so long, I doubt that your nutrition has been much better. So, just on the chance that it is a factor, you might try it. If you are like me, you'll know in a day. Good luck.

[lou_lou]

Originally Posted by harley

I have noticed something not right for awhile now, at least a year. due to the fact that my living situation was very stressful, it was easy to blame all the extreme symptomology on that. i ended up in the hosp in june where the anxiety became primary focus. a cat scan was given, but the results read "no acute intracranial abnormality. status post bilateral deep stimularot electrode with no evidence of acute complication." there were also several references to "not parkinson like" or "atypical to parkinson symptomoloty" etc. my gait was referred to as "lurching, not shuffling." and i had developed paratonia, which i am still unsure of the meaning. NONE of this was discussed with me. instead, i was discharged with the advice to leave stressful marriage and got an increase in clonazapan.

the physical problems didnt get better. the anxiety lessened with more clonazapan, so the problems were easier to deal with. my husband left the home so that stress is gone. but, the physical problems are still there, if not worse. with the assumption that these problems were all related to environment, i went on a trip. two things happened. i pondered the possibility that the dbs was screwing up and wondered what would happen if i turned it off. nothing happened. no change at all. i left it off for a good 1/2 hour.. no change in my symptoms. second thing that happened was that my symptoms still had not improved though completely away from my living situation. the offs sudden and intolerable. i began to take xanax along with the clonazapan to cope with them. i went to the conference in altanta and had a horrid off. laying on the floor, unable to move, the parametics were called. i went to hosp...again, stress was the diagnosis. yet, i was not home. i was having fun.

since returning home, i have called my neuro numerous times insisting something had to be done. i had no support or help at home. my balance completely shot, freezing, unable to even speak at all at times. my neuro told me it was time to look into living in an adult family home.

then.. steve came
poifect timing

his help has lessoned the anxiety and his knowledge of what i am dealing with by seeing it first hand has offered me the security i need in knowing that though alot has to do with stress, there is definatly something else going on. he went to my neuro appt with me. i decided possibly an increase in voltage would help. what a nightmare. the left side responded.. but nothing out of the right. nothing except a volt that shot through my LEFT eye and arm. then.. the programmer lost control of his little programming box. it would not obey his command to shut it off. the voltage kept increasing and i sat in an electric chair for at least 5 seconds. finally, it got shut off, and i broke down.

this got their attention. the neurosurgeon looked at the ct given in june, and came up with a different analasis of it than the one given upon my discharge. NOW one of the wires was not in the correct place. NOW they want an mri. NOW they want another ct. NOW they want to do surgery. NOW i want NOTHING MORE TO DO WITH THIS MEDICAL TEAM.

admitedly, i will acknowledge that stress and anxiety does play a huge roll here. i know that just by how much better i am doin with steve here. at the HOPE conference, there were times i walked, talked, and felt completely normal. BUT THERE IS STILL SOMETHING WRONG. my offs are sudden, and very hard.
Steve and I are putting together a plan. I want to go to Cleveland clinic.

Need advice.. should I have mri and ct done here? It is scheduled for the 10th. I am thinking this may get me into Cleveland quicker.

____________

dear harley,

I was up in the middle of the night 2:00 am ish, praying that God
would give you HIS PEACE, & many miracles, as I went through the hell
you have been going through, hate, and anger, are so horrid, some how
because our electrical system is off, we plug in to the energy around us...
and then add the drugs, it is a miracle I am still alive
you may wish to see if your liver is healthy -

small clipping
read this please
~~~~~~~~
Clonazepam side effects
Get emergency medical help if you have any of these signs of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat. Call your doctor at once if you have any of these serious side effects:
confusion, hallucinations, unusual thoughts or behavior;

hyperactivity, agitation, hostility;

unusual or involuntary eye movements;

weak or shallow breathing;

depressed mood, thoughts of suicide or hurting yourself;

chest tightness, fast or pounding heartbeats;

painful or difficult urination, urinating more or less than usual;

pale skin, easy bruising or bleeding; or

new or worsening seizures.

Less serious side effects may include:

drowsiness, dizziness, spinning sensation;

memory problems;

tired feeling, muscle weakness, lack of balance or coordination;

slurred speech;

drooling or dry mouth, sore gums;

runny or stuffy nose;

loss of appetite, nausea, diarrhea, constipation;

blurred vision;

headache;

nervousness, sleep problems (insomnia);

skin rash; or

weight changes.

this needs to be read
my dear dear harley
pray and ask God for help...GOD is our everpresnt help -psalm 46
be thankful for steven... I am so happy he's helping you!

http://www.drugs.com/MTM/clonazepam.html


Shalom

[MKane]

Laura,

Please read my post on the Weekly Check in. I was in exactly your position last summer. I too experienced a shock (one of many) when I was being programmed. Medtronic is of no use at all. My neighbor called them last winter when I had a shock that threw me on my kitchen floor. There response was that there is no way I could have been shocked. Total BS? I understand that the Cleveland Clinic is wonderful, but as far as I'm concerned my neurosurgeon at Hopkins walks on water. He seriously wants to fix us. I watched him sitting on the foot of the OR table shaking his head and figuring out how to fix my brain. He did it. Not only is he brilliant, he really, really cares. His name is Dr. Fred Lenz at Johns Hopkins in Baltimore. I would fly around the world to get to him.

Mary