NON TREMOR DOMINANT PD(PGID). FOR PWP WHO HAS BEEN IN THIS JOURNEY,HOW HAVE YOU BEEN COPING AS REGARDS FUNCTIONING INDEPENDENTLY?

[OREOLU]

Hi Friends, kindly share your experiences as regards,how long you've been treating your symptoms,changes in symptoms over the years,your interventions towards independent functions with activities of daily living. In as much as I sometimes feel alone in this journey,the inspiration I get on this thread usually rekindles me.

[pmmargo]

Thanks for the thread. It has been 6 years since diagnosis but I didn't swing my arms even at age 18. So I think I may have had Parkinsons most of my life (I'm 59). I will be interested in what people post...our Parkinsons type is faster moving and more deadly unfortunately. Best Wishes! Paul

[OREOLU in reply to pmmargo]

Hi pmmargo, You are right,faster moving according to literature,but then everyone is different as per how this disease affects people,also according to literature. If at 18years of age,you were unable to swing your arm,although not diagnosed,at that time. And you think your PD must have started at 18yrs old.Then you could say,your PD is slowly progressing.It is the same literature,that stated that young onset PD progress slower than non young onset,but I am not sure if any study has ever correlated young onset non-tremor dominant PD and tremor dominant PD. I expect more pwp of this phenotype to weigh in please.Thanks for your best wishes,I wish you the same.

[etterus]

I am a retired physical therapist that has been diagnosed 20 years ago at Mohamed Ali research center in Phoenix AZ. It was at a time when PIGD was not discussed much.

I was deteriorating slowly but it reached a point that I had to retire due to the inability to maintain my solo private practice. This unfortunately occurred at the same time as the economic collapse of 08. It meant that I had my retirement plan that was based in my practice building disappear.

I was going to see if I could qualify for DBS because of my foot dystonia when my son, a MD relocated to corvallis OR. He convinced me to try to be seen at OHSU where I was seen by DR Kim Burchiel neurosurgeon. I was so impressed with the quality of the work up that my wife and I decided to relocate to Oregon. I underwent the “ asleep “ procedure 5 years ago and I am convinced that I would be in a wheelchair by now with out it

[ElliotGreen in reply to etterus]

Could you say a bit more about this procedure? I've never heard about it and I don't know what it is. Thank you.

[etterus in reply to ElliotGreen]

If I am correct, which is always in doubt, the majority of the DBS procedures are done under local anesthesia meaning that the patient is sedated but not unconscious. This is possible due to the fact that the brain is not wired for pain perception and the ability to manage the drilling through the skull can be performed like drilling of teeth.

The purpose of this approach is to have the patient able to provide the surgeons with a confirmation of the correct placement of the electrodes.

The primary target for this approach is the subthalamic nucleus (STN).

The procedure that is not as common is that which is done under full anesthesia. The main differences are the target is predetermined via sophisticated scanning techniques that can be used during the surgery and the target site is the globus pallidus internus which is a larger target and more forgiving allowing the programming process greater latitude. It’s also a much faster surgery and less disruptive of brain tissue... probing for the ideal location.

[Hidden]

My husband was diagnosed 16 years ago at 57. No tremor. Was very athletic - surfed, ran, biked, played competition tennis. This might have kept him going - plus DBS 10 years ago and a very devoted wife. He has falls but still insists on walking without a walker or stick. Maybe his determination has kept him going. Always positive, never depressed, no self pity. He’s an inspiration and I adore him.

[OREOLU in reply to Hidden]

Hi Toapwq13, your husband is a real fighter,his story is very inspiring. If I understand your post,you said he had DBS 6 years post diagnosis. By the way,was he able to work and drive post diagnosis? How is he doing now? Thanks for your response.

[Hidden in reply to OREOLU]

I hope you won't be upset by the details of my husband's DBS. OREOLU. He had the op only 5 years after diagnosis. His initial result was very good physically but devastating psychologically . His whole personality changed from a warm, kind, loving reasonable man to a cold, rejecting, stranger who did the most awful things. It was only because I could remember how happy our marriage was, that I was able to get through the next terrible 18 months with him. His neuro didn't want to know and gave me absolutely no help. If I'd had some warning eg if the doctor had disclosed all the risks, I'd have been better prepared. (I might add that this specialist has had to face the medical board on a number of occasions for his disregard, lack of empathy poor note keeping, lying etc. Money seemed his main object as once he did the op, his follow up was abysmal)

During this horror period, my husband also had a big successful business that he totally neglected. Only with the help of loyal staff was I able to keep everything together. At the end of 18 months, my husband did return to the person he had been,but it took a long while for me to recover from the psychological damage I had experienced. I'm a strong woman but I ended up being diagnosed with PTSD. I tell you this only to prepare you, and more especially, those who love you, because if you are aware it can happy it has to be a help. To the other points, we sold the business within 2 years of his DBS - so he had continued to work for 7 years all up. He drove until about 3 years ago - but I knew a year before that that he was dangerous to himself and others on the road - eyesight gets affected by PD, but also judgment and spatial ability. It was surprisingly difficult to get a doctor to cancel his licence. Very stressful for me. And even when my husband finally accepted that he couldn't drive again, he wouldn't let me sell the car for another three years. Just sold it now! Yes, it's a good thing I love him deeply.

[Parkie- in reply to Hidden]

Toapwq,

Every time I read about your story, I feel for you. He is very lucky to have you.

Kind regards

[Hidden in reply to Parkie-]

Thanks Parkie. He was the best husband to me. Sorry if I am repeating myself in these threads but I’m never sure how they work. Just that we got no warning at all if possible side effects so I just want others to be forewarned as make sure they ask all the relevant questions. Also prepare their significant other. That said , everyone can have a different experience with PD. We will be leaving our $ to medical research in the hope others don’t have to face this awful disease that affects so much Cheers

[Parkie- in reply to Hidden]

Don't worry about repeating yourself! The more the info is out there, the better. Take care.

[OREOLU]

Hi Toapwq13, I do appreciate the fact that you gave a honest story as per your husband's experience post DBS surgery,and even with all the negatives,you still pulled through. You are both strong people,and thank God you are still supporting him as a caregiver. I have read a lot of about the negative side effects of DBS and so not upset. Having PD is enough to make me upset,but what I am not sure about is my significant other's ability to cope,if I have to chose the DBS option. Thank you again for laying it all out,and God bless you. Let's hope for a cure during our lifetime.

[Hidden in reply to OREOLU]

Thank you Oreolo. We are almost at the end of the journey now I feel Only love got us through it