Dr. Perlman is well renowned for her research/knowledge of ataxia. She's one of the speakers at the National Ataxia Foundation (NAF) Conference, being held in Detroit (Michigan) in March this year. I'm attending, as I've never been to a conference (it's held in a different State each year). I can't wait to hear Dr. Perlman speak! How fortunate to have her as your neurologist Lavender! ;o)
Hi Lavender,
Do you have Dr. Pearlman too?! She is fantastic! She doesn't work with my meds though, my family doctor does that and Dr. Pearlman will go over them when I see her every three months. She is the Clinical Professor of Neurology, Director of Ataxia Center and HD Center of Excellence. She has added me to her research and keeps watch over my sypmtoms. I actually saw her yesterday and she finally had all my Gene test back and found I have Spinobelellar Ataxia 35. Very rare, she could only find four families in China with it! These findings will go into a journal. She is Amazing! Anyone who is lucky enough to see her has the very best for Ataxia. She is completely devoted and very gentle and caring. I feel very blessed! She spent one and a half hours with me and my husband!!
ROSE: I hope you have the opportunity to talk for a long time with Dr. Pearlman at the Detroit Conference! Please let us know when you arrive home how it all went!
Robin :-)
Lavender said:
Thank you Robyn, I will check with Dr. Perlman, UCLA about my cocktail. I am taking the maximum amount of Celexa 40mg. And I think we need to find some additional anti depressant drugs. My best to your daughters health, she is in good hands with you I'm sure. Blessings and hugs.
Robin Yule said:Hi Lavender,
I feel your pain. I had deep depression when my symptoms began to disable me. My doctor had to change my anti-depression meds many times as we couldn't find a combo that worked. We found a good combo just two months ago. I'm on Prestiq and a small amout of Celxia. She made me promise the minute I fall into that dark hole, I call her and we'll add more of one or another and find the right med so I can get out of bed and be with my family. I still have depression creep up on me some days, but who wouldn't when you are disabled? I try to keep my mind busy with the web, books, computer games and occasionally simple crafts (until my hands hurt). But I really think the depression has been the hardest thing to deal with. It is the one thing I have to work with, work around, and make my mind work hard against.
You are on many different depression meds, but as my doctor said over the many, many months we changed mine to find the right one(s) for me, each med works differently on everyone, we have to keep changing meds and adding meds until we find the right cocktaill for my body. Hang in there. I am also the caretaker of my 13 year old who has T1D. She goes through periods of hating her port, iv line and pump. She cries, want's a life free and easy like her friends. She is not on anti depressants, and I hope she never has to be. She stenciled in capital letters on her wall, "This too shall pass," and I often step in her room just to read that to remind myself if my child can be strong with her chronic condition which takes so much time to care for, than I can too.
Make sure your doctor knows your anti-depressant cocktail isn't the right mixture, yet. Something will work for you - keep trying. My life got much better after my doc found the right mixture of meds for my depression.
Hugs,
Robin
Thanks Robin!!! I've only heard great things about Dr. Perlman. You are very fortunate to have her as your neurologist! Yes, I hope I get to meet her! And I will share anything of interest from the conference with this site for sure..., ;o)
Hi Lavender
Apologies I got an email alert for your question a while ago & am only getting around to answering it now, again many apologies ..
Like you I have been struggling with depression for quite a while now my GP had me on St Johns Wort which seemed to work for a while however I was on the maximum dose of three a day. The past 17 months however has been 1 stressful event after another, won't go into it suffice to say 1 of these events on there own was ok, 2 was just manageable but as they all started to add up the worse I got!!
The catalyst was early February I had a major attack that I still haven't recovered from, I was being a " Bitch" on 2 legs, getting very aggro, and it was reallly, really hard on my family also, constantly lashing out at them, have had insomnia now for the past 2 months, Mid February I went back to my GP & just sat & cried & said I need help??
I have been put on Zoloft & referred to a Psychologist luckily for me the team she sent me to had 2 Neuro Psychologist specialising in Neurological conditions, stress, anxiety & depression. I managed to get an appt; with 1 He diagnosed me with Major Depression & am hoping over the coming months he will help me to get back to an even keel ( well as even as is possible with Ataxia). He even read up on EA2 before my visit....
I know all this doesn't help you but I too have a " Dark Passenger", I am aware what I am doing is not " Right " nor is it
" Fair" on those around me however I have no control over it, hopefully with the help of Meds & the Psychologist I can regain some control again........
I am extremely frightened that the last attack was so big & (as I said I'm still not over it,) it has affected me so greatly that there will be no coming back from this one, the symptoms have been so much more severe this time, my balance if off all the time, keep dropping things, my speech is badly affected, can't concentrate & my eyesight has become so affected I need my reading glasses on all the time no matter what I am doing as everything is blurry, eating is more of a problem ( although it was before) but is now a constant worry....
stay positive as you can & know you are not alone in this hugs to you & I really hope you can get some help & understanding xx
Hello.
I wish there were words to take all of this away. Sadly there are not.
If you are open to new ideas then please listen.
This incredible journey we are on is wondrous, scary, enlightening, annoying, and difficult all at once. I have read some of your posts and I feel now I can respond. We are similar. I imagine we both have similar paths of unexplainable things happening to us that were written off as GAD, depression, blah blah blah. Though some of this MIGHT have been true, our suffering is real just the same. I went down the road of SSRI's and such 10 years ago when I had a twitch in my arm that did not stop for 3 MONTHS!...Go see a shrink. I was dx'd with hypomania then the same doctor a year later (who forgot who I was ) Dx'd ADHD. After a few months of Celexa (and after losing a great girlfriend cause I was a zombie) I stopped all drugs devised after 1990. I started feeling better and took more ownership for my self than relying on scrips. In my past I have had self medication issues with alcohol.
Time for me to step up and accept who I am.
I found that the environments that I put myself in weren't really conducive to my vibration, I was a proprietor of a So Cal Outback and found that the high stress of running a restaurant wasn't good for me. I left the business and left antidepressants. My environment was not good for who I am.
Who am I? This is when the rubber meets the road. When we take time (many years) to learn ourselves we sometimes learn we were living for others, other peoples approval and for societies approval more than anything. I became comfortable with who I am and my place in this planet. While I wanted to be a rich successful Orange County resident my true purpose is not that. It is learning to accept me for what I am.
I see your smile and know you are 100% made of pure love. Your trouble fitting in was never easy because of your natural loving nature. Anxiety is the norm people see this and now?
Reality. This is not GAD, not blah blah blah. This is real. And you are loved.
You are loved by your family (who have the hardest time showing it) and you are loved at work and everywhere...but our blinders do not see.
Lavender, like I said there are no words to fix stuff, only signposts. I hope to be one to point you. Where? I am not sure but certainly in a direction you can be comfortable being you no matter what you you are.
Our journeys are similar yet so different. I know you can win over depression and anxiety PHARMACEUTICAL FREE. (somewhat I use old fashion valium for anxiety)
Come on lets do this! Fire the pill poppin docs, let go of the people that no longer serve us (it's ok to not like someone. I love everybody just prefer not to hang out with them lol) and let's deal with the issue at hand. Our well being.
I have a new physical condition but I practice mindful awareness (meditating ) daily. I will use drugs at discretion but I am very careful. If someone has suspected your honesty about your condition it is ok do not be offended by it. Every visit to my neuro I asked him "AM I CRAZY?" he always said no, if I(we ) were they would say.
I think I get you Lav. Things are different now, yes this is real and yes you are loved. We are human we have gifts and sometimes not so much. It's great (and important) to make friends with the "not so much
Thanks for letting me ramble
Much Love
Michael
Brilliantly said… Thank you Peter for Witnessing what we all fail to Accept. I suppose our Ataxians Dark Passenger is much like a child’s temper tantrum. You have to embrace them and hold them close with love and understanding s that they don’t hurt themselves while in their desperate need to be acknowledged.
Peter Franks said:
Hello.
I wish there were words to take all of this away. Sadly there are not.
If you are open to new ideas then please listen.
This incredible journey we are on is wondrous, scary, enlightening, annoying, and difficult all at once. I have read some of your posts and I feel now I can respond. We are similar. I imagine we both have similar paths of unexplainable things happening to us that were written off as GAD, depression, blah blah blah. Though some of this MIGHT have been true, our suffering is real just the same. I went down the road of SSRI’s and such 10 years ago when I had a twitch in my arm that did not stop for 3 MONTHS!..Go see a shrink. I was dx’d with hypomania then the same doctor a year later (who forgot who I was ) Dx’d ADHD. After a few months of Celexa (and after losing a great girlfriend cause I was a zombie) I stopped all drugs devised after 1990. I started feeling better and took more ownership for my self than relying on scrips. In my past I have had self medication issues with alcohol.
Time for me to step up and accept who I am.
I found that the environments that I put myself in weren’t really conducive to my vibration, I was a proprietor of a So Cal Outback and found that the high stress of running a restaurant wasn’t good for me. I left the business and left antidepressants. My environment was not good for who I am.
Who am I? This is when the rubber meets the road. When we take time (many years) to learn ourselves we sometimes learn we were living for others, other peoples approval and for societies approval more than anything. I became comfortable with who I am and my place in this planet. While I wanted to be a rich successful Orange County resident my true purpose is not that. It is learning to accept me for what I am.
I see your smile and know you are 100% made of pure love. Your trouble fitting in was never easy because of your natural loving nature. Anxiety is the norm people see this and now?
Reality. This is not GAD, not blah blah blah. This is real. And you are loved.
You are loved by your family (who have the hardest time showing it) and you are loved at work and everywhere…but our blinders do not see.
Lavender, like I said there are no words to fix stuff, only signposts. I hope to be one to point you. Where? I am not sure but certainly in a direction you can be comfortable being you no matter what you you are.
Our journeys are similar yet so different. I know you can win over depression and anxiety PHARMACEUTICAL FREE. (somewhat I use old fashion valium for anxiety)
Come on lets do this! Fire the pill poppin docs, let go of the people that no longer serve us (it’s ok to not like someone. I love everybody just prefer not to hang out with them lol) and let’s deal with the issue at hand. Our well being.
I have a new physical condition but I practice mindful awareness (meditating ) daily. I will use drugs at discretion but I am very careful. If someone has suspected your honesty about your condition it is ok do not be offended by it. Every visit to my neuro I asked him “AM I CRAZY?” he always said no, if I(we ) were they would say.
I think I get you Lav. Things are different now, yes this is real and yes you are loved. We are human we have gifts and sometimes not so much. It’s great (and important) to make friends with the "not so much
Thanks for letting me ramble
Much Love
Michael
When I had depression and anxiety it was the black dog.It shadowed me on and off for 10 years.
I will have to think of a new one for the negative feeling of ataxia although Dark Passenger sounds good.
Was it from a novel?
Hi Marie,
No, “DARK PASSENGER” comes from a SHOWTIME series. 10 years you’ve lived with it rearing its head? That’s terrible. I’m so sorry.
TThanks Lavender.I have had depression on and off for 10 years and then Ataxia for 5 but not together thank goodnesss.]
The reason I did not recognise the reference was because I live in England.
Ann… That’s why! Thanks for sharing Marie.
Marie Turner said:
TThanks Lavender.I have had depression on and off for 10 years and then Ataxia for 5 but not together thank goodnesss.]
The reason I did not recognise the reference was because I live in England.
Amazing, I emailed Dr Perlman yesterday to see if my genetic tests came back and she said yes. She said the results are VERY INTERESTING but not conclusive so she is going to take my blood samples banked with UCLA and take it to the next level. Whole genome sequencing, where we look at the “junk DNA” between the genes, to see if there is an on-off switch that is turned off. I am so blessed to have ADR Perlman!
Good news Lavender! Dr. Pearlman won't give up until she gets an answer! She is not stopping until the cure is found! You
are lucky to have her. There is a youtube video with her, back when she graduated, and she won the award for so many things and was head of the MD graduating class. There are a few others, some don't have anything to do with her career, but do look for this one, you'll be amazed at her intelligence and persistance!
Lavender said:
Amazing, I emailed Dr Perlman yesterday to see if my genetic tests came back and she said yes. She said the results are VERY INTERESTING but not conclusive so she is going to take my blood samples banked with UCLA and take it to the next level. Whole genome sequencing, where we look at the "junk DNA" between the genes, to see if there is an on-off switch that is turned off. I am so blessed to have ADR Perlman!
Congrats Lavender! You are SO fortunate to have Dr. Perlman as your neurologist! I've only read and heard great things about her! I'm attending the National Ataxia Foundation (NAF) conference in a week and a half in Detroit, Michigan, and Dr. Perlman is one of the speakers. I'm excited to hear what she has to say! My neurologist, Dr Shakkottai, is speaking also, as well as others from the University of Michigan and other States.;o)