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By loander On 2013.02.05 04:09
Hi everyone. My husband has been diagnosed with Parkinsons today :( - the GP is pretty certain and he is going to see a Neurologist soon. I have been reading your forum today and feel it can really benefit me. I guess I am really asking for advice - I have already realised that not taking over too soon is a big thing, and I can't afford to take over anyway as I work full time and my husband has not worked for 7 years as he was diagnosed with OCD and depression and has been unable to find a job. He is shaky sometimes and appears slow and nervous. He is VERY slow in everything he does. His gait has changed and his speech is hesitant and his hand writing has become so small it is almost illegible. He does cook every night ( I work night shift) and he vacuums the home and does his own washing and ironing, and he will be doing this still. How will I know if he is no longer safe to drive? I have noticed that his driving has worsened lately already. Any suggestions on how to go about this would be gratefully received. I took tonight off work as I was so upset and needed time to get my head around the huge changes that are in our future, I also wanted to be home in case he wants to talk about anything. I noticed that some people have commented that their partners are restless when sleeping, kicking etc. We began sleeping apart a few weeks ago as he has been having this problem for years and I got sick of the interrupted sleep. I am so shell shocked and confused at the moment. Any help would be great. Is there a typical rate of deterioration?

By blue2 On 2013.02.05 13:30
Blessings and virtual hugs to you at this difficult adjustment time. There is no "typical" rate at which PD advances as you will see from others' comments and responses. You just kinda gotta go with it a day at a time as well as learn as much as you can about the disease and its treatments.
As for help deciding about driving/not driving both of you might find helpful.

By LOHENGR1N On 2013.02.05 15:47
loander, Hi and welcome to the forum. I'm sorry many Doctors don't seem to give much information with a diagnosis. I noticed you said a GP diagnosed P.D. ? It is a pretty tough diagnosis, many other problems mimic or appear to be an untrained eye (read specialist) Neurologists will generally be abler to sort out which it is. You mentioned OCD and Depression, check any medication He may be taking for side-effects that could present as problems he's exhibiting. Nervousness, shakiness, clumsy or slow movements. Be sure to list any medications being taken and bring them with you to the Neurologists appointment when you go. Give them to the Doctor so He can rule out any side-effects that might cloud diagnosis.

As I said it is a hard one for a GP to make my Internist diagnosed me as Essential Tremor when the tremor didn't respond to the medication he sent me to a Neurologist who said it's not Essential Tremor you have a disease of Basal Ganglia origin you have Parkinson's Disease and then sent a note to my Internist explaining differences in tremor and other nuances leading to Parkinson's diagnosis. So it's always best to get a second or even third opinion. (Which I did by also going to the American Parkinson's Disease Association's information and referral center in Boston MA. Where the Head of Neurology saw me and confirmed the Parkinson's diagnosis.).

However it works out We here on the forum are here to help you however we can, don't be afraid to ask questions. Also it is only normal to have the feelings you're having right now. Again welcome.

And no there are no set in stone rates of progression or typical rates of deterioration.

Take care, best of luck and hang in there.

By McCall On 2013.02.05 17:07
Hello and sorry you have to be here, First thing is try to see a Movement Disorder Specialist, MDS who is a specilized Neurologist even if you have a regular local Neurologist that you see more often.
Next realize that you are both in shock right now, and there are stages of things you both will go through at your own pace. Disbelief, anger, denial, anger, bargaining, anger, and at some point acceptance, though anger still rears it's ugly head for the duration for most of us. Hopefully anger at the disease, but sometimes shows as anger toward person with PD or by them at Caregiver.
As stated there is no rate of progression, different for everyone, also the various symptoms are not the same either, some develope Cognitive problems and dementia some don't, some have ridgidity or pain or shaking, some don't, some have urinary or bowel problems some don't, most have some form of depression or anxiety at some point in the illness. Some have balance issues others don't etc. etc.
It is very important that your PD person gets on the right mix of Meds and takes them on time and not too close to meals etc. Getting the right mix can take time and that mix will also change over time.
NOTE: many symptoms talked about on here are medicine related, or some can be either medicine related or PD progression, sometimes hard to tell.
Once you have gotten over the initial shock be sure you read all you can find on the illness and the side effects of meds etc.
Visit forums like this one and others out there often, they are a big help.
Give yourselves time to adjust before you make any kind of major decisions.
again, sorry you have to be here, but welcome.

By jcoff012 On 2013.02.05 17:32
I completely agree with everyone here...give yourselves time to let the news sink in. PD (Parkinson's Disease) varies greatly from person to person. My Mother in law had it for 22+ years and never had a tremor, and until the last six months, was sharp and funny, although no one could hear her and she was very, very thin. My PWP (person with Parkinson's) is my husband and he was dx four years ago. He seems ok most of the time, but he drools, lost his sense of smell, has left side tremors, shuffles his feet and was officially measured at the doctor a week ago...he is now 5'9 1/2", down from 5' 11! He cannot straightened up to his regular height.

I agree:Make sure you get a second opinion, especially from a movements disorder neurosurgeon who specializes in PD...we have to drive almost an hour one way for my husband's neuro, but it is necessary. He has been dx by three doctors, and it was obvious, since his Mom had it for years.

The people here are you will read, not everyone agrees with what each one says, but we agree to disagree...
knowing that this is a "safe" place. No one here purposely tries to hurt another's feelings with disagreement. We just are all desperate to find a cure and some relief of the symptoms.

Might I suggest that you try to locate a local monthly meeting? We go and my husband is NOT a 'joiner'...we go for the information and the speakers, then we far, in three years, we haven't stayed for the breakout sessions...he isn't comfortable, yet, because he is the youngest at 65, and he is still highly functioning. BUT, he said on Saturday that he doesn't want to stay after YET...he would "when I feel it is time."

Be sure to ask questions...anyone here will tell you that I ask anything and everything...I want to know; I want to be prepared...and I know that our experience with his Mom can help others, too.

Again, name is Jane and I am sorry to meet you here, but know you are in a safe place...ask whatever you want/need and hopefully someone will have the answer. Hugs, Jane

By parkinit On 2013.02.06 22:06
Welcome here, Loander -

We all have our own PWP rate, so this is something you can't gauge by others.

I wish you the best in this journey and like others, I'm sorry we had to meet here.

By dkleinert On 2013.02.06 22:22
Welcome, Loander! You will find so much comfort and help here. We are glad you are with us!

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