Parkinson's Disease Support Group
Parkinson's disease is a movement disorder often characterized by muscle rigidity, tremor, a slowing of physical movement, and in extreme cases, a loss of physical movement. The primary symptoms of Parkinsons are due to excessive muscle contraction, normally caused by the insufficient formation and action of dopamine, which is produced in the dopaminergic neurons of the...
I just can't seem to be able to put into words exactly how I am feeling these days but feeling alone and unsupported is a good beginning. I was dx'd last January with PD after having issues with anxiety, depression, chronic fatigue, drooling, chewing, swallowing, slurring of speech and now a severe case of restless legs. My husband's family are always getting together to go out and eat and do invite us to attend, however, it's hard for me to leave my safety net and participate in these outings. I feel very uncomfortable physically and mentally most of the time and so my husband and I have to keep turning down offers because of me. I feel that his family has come to resent me now because I am keeping my husband from being socially active with them. He has only been to a few functions without me and the family was very upset that I did not attend with him. They feel that I can be just as uncomfortable being outside of my safety net as I can being inside my safety net. They feel that I should not uncomfortable eating or being around them. It's hard to explain that it goes beyond just eating in front of them but that I also find it hard being around large groups of people and am usually very tired at the end of the day and am not up to going out. Do I just try to ignore my own symptoms and attend the functions to keep peace in the family? Do I put my pain, anxiety and depression on the back burner? I don't want there to be any drama within the family but feel that I am causing a lot of it right now.
You are newly diagnosed and perhaps have not even come to grips with this illness. You are just putting the pieces together yourself. Don't be so hard on yourself. Maybe the family needs some education as anxiety, depression, fatigue are huge influences that affect people with PD. These feelings are real and i doubt you can ignore the symptoms.
Perhaps go and see your doctor for some suggestions on how to deal with the symptoms you are having. Are you taking anything for depression? Cognitive therapy? There is help out there you just have to actively seek them out.
I wish you well and hear your struggles! We are here to listen so lean on us any time!!
My husband went to a pathologist because of his cough and the MDS thought he should have a swallowing assessment .
He went through the test but as it turned out the cough was from lung cancer, but my point is that maybe your problem is really from swallowing and the therapist could help you and give you exercises for the speech.
I don't know if you have insurance, but here in Canada (sorry) our insurance covers such things.
There are x-ray they can also do. Ask you doctor if he can refer you.
When my husband eats his meals, he just concentrates on the food and doesn't talk much unless I say something to him.
His speech has decreased in the last year as he can't think of the word he wants to say, in other words goes blank when trying to express himself, so therefore he doesn't talk when out in a crowd.
When you go out for a meal or just at home, do you also find that you have to concentrate on your food and don't pay attention to your husband?
I also know about the fatigue and he tires easily too.
PD is not easy and I know as a caregiver what you are going through, but of course I don't really know how you feel.
My husband was diagnosed with lung cancer in November (it was causing the cough and phlem) and last week they took the right lower lobe. He did okay and is now recuperating at home. He was a smoker but quit 25 years ago. I think they caught it in time and the doctor thinks it was Stage 1, so by taking the whole lobe, he should not have to have chemo.
Take care and my suggestion is to still try and go out with your family because if you distant yourself too much, you will feel worse in the long run. You can't stay home all of the time..
I hope you family understands what you are going through and maybe you could talk to them about it so they do understand.
Some people don't realize what a PWP is going through and everyone is different.
Take care, If you tire easily than I would suggest you pace yourself.
If you are going out in the evening, try to have a nap before you go.
LYNN
One thing we have done is I only go out if I feel well enough. I don't want my husband to feel housebound so I encourage him to go without me, or with as I've come to think of my sister-in-law, my stand in "wife". As sick as I am I try to go out everyday, if just to sit at the park and enjoy the sunshine and fresh air. It's to easy to bury yourself in the house and not leave very often. You will feel better if you go out on your terms and when you feel comfortable.
Give yourself some time. You have a lot to take in. Be gentle with yourself. Sounds like you have a good husband! Good luck.
My dear, you have come to the right place. The people that visit this site will help you through the process of learning to deal with PD personally, helping your husband learn to deal with being the spouse of a PD patient and maybe even help with some suggestions with the family issues.
It wasn't too long ago that I found myself in the very same situation you described. I was at the end of my rope and was desperate when I stumbled on this group. They threw me a lifeline and with their support I worked my way through the process of dealing with this disease. You have done the most important thing by reaching out for help - we hear you and we will support you through this journey..
If you are depressed and anxious there is no shame in asking your doctor for an anti-depressant and perhaps some counseling to help you get adjusted. I have taken an anti-depressant twice for several months at a time to help me through some particularly difficult situations. You don't have to take it forever.
While you are in this adjustment period, may I suggest that you keep a daily journal of your medication schedule, how you feel before and after taking your medicine; how you feel before and after eating; and record anything that comes to mind that makes you anxious or upset. Record your symptoms daily and how the meds work to alleviate those symptoms and any questions to ask on your next doctor's visit. Having a record of this information for your physician to read will be very helpful in figuring out what meds will work best for you.
Hisknobs is right - when you are ready, find a local support group. It will help more than you know.
Most of all - take care of yourself. This is a big adjustment you are making. Be selfish and focus on yourself now. Your husband can run interference with his family for a while, but don't forget that he has to make an adjustment too. Support groups are for patients and their caregivers, too.....and now I am out of breath so I will close out this post.
Keep in touch.
Over the last 18 or so years I have struggled with all types of PD issues. The anxiety and stress can take b your ability to move and function for hours. I do notice that once my dopamne levels are adequate much of the pain, stress-- go away. About 70 minutes after taking meds. As the years went by it's gotten more difficult.
I beg to differ with one post. Yes you CAN stay inside all of the time. The author of the book / movie "Unbroken" has CFS which I was dx'd with log before PD. She is home for months at a time due to exhaustion. My home meets my needs. We had a lot of company over the years That is no longer possible. You have to learn to just declare what is and is NOT going to happen. It's foolish for ANYone to think they know how you feel.
Wish you anxiety free days.
Yet more evidence that friends and family are the best medicine: a new study finds that the most social seniors had a 70% reduction in the rate of cognitive decline, compared with their least social peers.
Its not surprising, then, that socializing would reduce dementia risk: our brains were designed for managing relationships. And with brains, as with muscles, the same advice applies use it or lose it.
The research was published in the Journal of the International Neuropsychological Society.
The Biochemistry of Anxiety
Anxiety may be a difficult disorder to live with, but it's also a fascinating one. Anxiety can be caused by life experiences, and it can be caused by the chemicals in your brain, and it can be caused by both, and no matter what causes it, it can be treated the same way.
Even within your own biochemistry, there are different neurotransmitters that can cause and be affected by anxiety.
Anxiety Without Medicine
Anxiety is an incredibly treatable disorder, provided you're ready and willing to make the necessary changes to your day to day life.
Dopamine - The role of dopamine in anxiety is only recently getting explored. But studies have shown that those with social anxiety seem to have problems with dopamine receptors. There is evidence that improving dopamine levels will reduce social anxiety, and possibly other anxiety disorders.(Siegel, George J., et al. Biochemical Aspects of Anxiety. (1999).
Petty F. GABA and mood disorders: a brief review and hypothesis.J Affect Disord. 1995 Aug 18;34(4):275-81.)
Brain Food
Brer T
Good Luck,
Paul
ie. never pull a person when they are freezing ; pain associated with dystonias; anxiety, depression and the list goes on.
I think listen to what they experience and try to see it through them. My family are very good when it comes to teaching them what I go through day to day.