For those who care for someone with Parkinson's disease
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Topic so confused helpless and alone Go to previous topic Go to next topic Go to higher level

By IneedHelp On 2017.01.03 22:11
My husband is 77 years old. He was diagnosed with Dementia 7 years ago.. Last year he had a stroke so I took him to Neurologist and he told me by just looking at him he had Parkinson's D.... slurred speech, frozen shoulder, ringing hangs and fingers, rapid jaw movement;s and tongue... slow gate shuffle feet,ect.. ..... But new symptom just started just before Christmas, He doesn't want to swallow his Silvia, and is have a hard time drinking liquids , I have been looking for a site to answer my questions but have not found any , I came across this Forum... I don't know what to expect or what is coming next.. I feel so helpless and so confused as to get answers, Maybe I am not asking the right questions, I am lost ... I have been dealing with this all on my own taking one day at a time as it comes. He My husband used to have hallucinations , and accuse me and others a bizarre things, This has not happend for sometime now , But I was told it would come again ! I feel as if I am rambling on .In My mind want to say so much and it's going in every which way to many thoughts ,... He would or dose stand up to much does not want to set down, will stand with his eyes closed in front of the wall for hours if I let Him.. He loved to watch Baseball , But won't watch it any more has no interest in any thing, when I take him out to Dr.'s I try to get him to look around at the scenery he has no interest , He doesn't talk any more, sometime if asked he might answer with yes or No . I have to shave him bathe him and dress him, What is coming next ? How much longer before he is bed ridden ? Please help me in any way you can with your experiences or and advice !

By LOHENGR1N On 2017.01.03 23:29
Hi and welcome to the forum. You've found a great group of caring people here who will do their best to help you. If you can have his doctor set up an appointment with a second Neurologist to get a second opinion just to confirm the P.D. diagnosis and to rule out some symptoms as being caused by damage from his stroke. Please feel free to ask as many questions as you have as We here will try to answer them. As others here check in to post or read new posts I'm sure they will have more to help you. Again welcome.

By VioletV On 2017.01.04 11:50
Hi there,
This is a great place to ask questions and get people's answers. We are not doctors or researchers, but are almost all caregivers for people with Parkinson's (PWPs). Al, (Lohengr1n) is a man who has had Parkinson's for many years. I am VioletV. My husband (PWP) is 82 and has had PD for 20 years.

Over the years people have posted questions (as you have done) which are answered by others of us.

Each question and the answers that go with the question makes up a "thread." So you have started a new thread with your question.

On each screen there are about 20 threads that you can click on to read the original question and the many answers.

You can see a set of numbers at the bottom of the page. Each number takes you to an older page of threads. You can just take your time and read through them. Just see which threads interest you. You don't have to read any of them, but can read all of them at any time.

Just remember. This is a PUBLIC forum. Anyone with web access can see what you write, although only members can start threads or answer them.

Jim founded this site to help caregivers. He is not paid, and those of us who can use the Donate link at the top to contribute to support this page.

Take a deep breath, and know that we are all in this together. We will help you think about what you can do and what you want to do. It is also a great place to come when you just need to vent or cry or just feel the feelings that go with being a caregiver.

We are glad to be here to help you.


By Mary556 On 2017.01.04 15:16
Peace be with you, dear. It is good that you have found your way here.

In the menu bar at the very top of the page, following Forum-Home-Help if you click where it says [Search], you can look for others who have asked a similar question and find more answers. Where it says "max post age" you could put 999 to search three years worth of pages, and where it says "limit posts" put 100. Use a keyword such as "choking" or "swallowing" or "saliva".

My loved one (my Mom) was never really bed-ridden until the last two weeks of her life, when she was in hospice. Every person is different and your husband has added complications because he had a stroke. It is difficult to predict what may come next. You are wise to take one day at a time. You are carrying a lot of weight on your shoulders. I hope you will find more local supports to help you deal with all these hurdles. There are many kind souls at this Forum who are very knowledgeable and supportive.

My PWP had difficulty swallowing too. She had an evaluation by a speech therapist who recommended the "dysphagia diet". I wonder if your husband's primary doctor could make a requisition for that testing?

Not talking, having no interest in activities he once enjoyed, staring into space... those could be signs of depression. Your husband's neurologist may have some suggestion as far as that. But anti-depressant medication is not a cure-all for everyne. Some patients get too anxious or overstimulated, unable to sleep. We found they caused more delusions and upsets for my mother so we did not continue. There are many challenges. You do the best you can.

Best wishes and prayers for your husband and yourself.


By jcoff012 On 2017.01.04 18:55
Hi, my name is Jane and my PWP (Person with Parkinson's) is my husband, Carl. He was dx almost 8 years ago, but had symptoms before...his Mom had PD over 22 years.

I know you are frightened; we ALL are. Some are very lucky to have family and friends near, but some are handling this alone. That is why we all stick together here. We all want to beat PD, but until we can, we come here to vent, ask questions, etc. You will make friends here. You will not understand some topics. But, that is why you are welcome here...none of us are nurses or doctors...all we can do is share what we know, what we experience...

Sometimes it sounds like we are aggrevated with our personal PWP, but it almost always comes from frustration or just simply because we are tired. No one wants our loved one to face their final days with PD in charge because it is relentless.

Just remember, so many times what we face daily is the disease, not the PWP...if PD weren't involved, perhaps our lives would be radically different and we would have our loved one back. But, PD is part of our lives now...coming here and asking questions is a wonderful way to learn to understand and to cope.

Remember, none of us wants this, but we all can, and will face this always, doing the best we can...many hugs. Jane

By Mary556 On 2017.01.05 14:24
there are different levels of the dysphagia diet. this is one place that has some helpful info:

By moonswife On 2017.01.06 01:46
IneedHelp, you have found the right group at an all important time in your life. We are all just toughing it out, and without the resources this group has to offer, time would still pass....but we would be in an information vacuum. We are blessed with sages like Al, who has shown us the PD side of the situation like no one else could. Well educated, well read spouses give every possible ounce of strength they can with their suggestion. Bear with us. We don't read every day. Just every day we have time to read. Our lives are impacted by hospitalizations, work loads, family issues, our own health. Just feel welcome.

By Daybyday On 2017.01.14 11:19
Dear Ineedhelp, I can identify, as many can, with so many of the things you said. It is a very lonely job taking care of our PWP and it's hard to stay up and positive about life. I too feel very alone as family is all pretty far away and none of them seem too interested in even hearing how DH (dear husband) has been progressing (or, more like, NOT progressing). So nice to have this forum to come to and share our feelings. I get very depressed sometimes, especially if DH has had a particularly bad day. It all just hits me and I can't help but get down. We attempted to make an adjustment in his medication last week and it didn't go well. All of his symptoms got worse so we quickly put the dosage back to where it was. Just hang in there, take it day by day and try to keep your chin up. It's all trite sounding advice but that's all I've got right now and that's what I am using to get myself through each day. We don't know what the future holds, and we fear what the future may hold but don't dwell on it and soldier onward. This is our calling in life, although not one we wanted, it is our calling right now. Welcome and I so hope things get better for you. I will pray for you both.

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