Anxiety over DBS


#1

Hi,

My brother is in his 40s and has been diagnosed for about two years now. I do not believe that he is coping with his diagnosis, and I really want him to go and talk to someone about it but this is proving difficult. 

Does anyone else have any experience with stress/anxiety making PD symptoms worse? He went to his specialist a few weeks ago and was told that he will need DBS surgery within a year. Apparently the doctor said he could die on the operating table and this has really upset him. Since this appointment, I believe his symptoms have gotten worse. He seems more fragile (lost weight), a bit more wobbly and his speech is a little affected. I am really worried about him. 

I know stress can make things worse - I believe he should be on an antidepressant as his anxiety/mood has been really affected in the last few years and he's been having panic attacks as well. He was on antidepressants but came off them due to unwanted effects. 

Has anyone had any luck with their loved one seeing a counsellor about Parkinson's/accepting diagnosis? Or has anyone had a loved one undergo DBS and have any advice? Any help would be really really appreciated, as I'm really worried about him at the moment. The slightest thing send him on a deep downward spiral at the moment. I'm even wondering if talking to a counsellor might make him worse in the short term, if he is facing up to all of these emotions. 

Any thoughts? 

Thanks

 


#2

Hi Iris11,

I read your post with great interest. I have been diagnosed for about a year and a half and about two months ago went into a deep depression over my diagnosis. I was lucky my work supported the option of contacting a counsellor.  i  wasn't sure what to expect but i knew i needed help. it has helped me enormously and it helped me overcome the feeling of deep depression.

i know its not for everyone but for me it was a help and when i read your post i just felt i had to respond to show that it can work and it can make a difference.

feel free to contact me direct if you want more info.

wishing you all the best.

pkman8


#3

Thanks so much for your reply pkman8. I'm glad that counselling worked for you. Was there anything that your counsellor said that helped specifically with accepting your diagnosis? 

Cheers,

Iris


#4

 

 

Hi, I have just read your post concerning your brother, I think the consultant could have handled the discussion with your brother much more sensitively as with any operation there is a risk and we know they have to point that out But!

My husband is 70 yrs now but was diagnosed in his late thirties, he has had many problems during this time and I won't pretend it is easy with the constant struggle of keeping up with the many changes PD brings never mind the side effects of the medication. However my husband has been able to enjoy quite a few hobbies since giving up work at the age of 46 yrs and has even won many local and a national competitions for his photography and hanging baskets. He has now had to go into a home as I can't manage him anymore at home, I hate having to do this and miss him dreadfully but I have no choice in the matter now and get really frustrated at the lack of understanding and care for people with  early onset PD so I urge your all to keep banging the drum for better care and support.

Your brother needs to speak to other people who are in the same position as they will help him to understand and cope with this difficult condition and there are many on here who can do just that, please get him to join the forum. He will see many people coping and also some struggling with their different problems, depression is well known in Parkinson's so he is not alone. If you can get him to do this and get some counselling he may be able to gradually come to terms with it and perhaps enjoy some of the things he used to.

My husband had a pallidotomy operation when he was 51 and then was on a  apomorphine pump for the next fifteen years, so you see there are different treatments that can help him cope and sometimes help the symptoms. Once he gets the help and starts to feel better keeping active both mentally and physically will help him see that he can enjoy life a bit more.

My best wishes to you both

Vivian


#5

HI Iris11,

 

there was no magic words that helped but i think just someone unrelated to you listening and knowing you can say exactly what you want allowed you to release emotions and thoughts you didn't know were there and you could therefor then reevaluate your thoughts .

 

i am no expert in counselling or pd for that matter compared to others on the forum and these are only my opinions.

like pd everyone is different and reacts differently to treatments and therapies.

all the best

pkman8


#6

i had dbs 2yrs ago best thing i ever had done !


#7

Fantastic news gus! Hopefully it will be the same for my brother. 


#8

no probs takes about a year to get right settings so dont panic.


#9

   Hello iris, have you investigated Duodopa, it has changed my life the system consists of a pump which is connected to a casset containing a Dopamein gel, this is pumped directly into my small intestine via a tube , please dont panic its not as horrific as it sounds and it real works wonders, if you wish to know more about Ddopa contact me by e mail or speak to your Neurologist and they will keep you right.

                                                        Kindest Regards                   Fed


#10

I agree with the lack of support for early onset PD.  My OH is the PWP and is 43, diagnosed 1 1/2yrs ago.  All of the groups near to us are aimed at the older generation, the people are all lovely but are not at the same stage of life us ourselves.

Also with having 3 young children, more advice/help for the kids would be great.

I have also found that getting help for the OH without PD is a struggle.

We are both looking into counselling at the moment.