For those who care for someone with Parkinson's disease
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Topic Losing my mind Go to previous topic Go to next topic Go to higher level

By Klb58 On 2016.12.09 13:55
After reading a lot of the posts, I decided to sign up. I'm not a joiner and handle everything myself. I thought I was a strong person but this disease that hit my husband makes me cry on a regular basis and I feel like I'm losing my mind. I'm 58 and he is 63. He was diagnosed 4 years ago, but symptoms were there years before. Everything is happening so fast. Reading online you think a lot of the tough stuff will come 10-15 years from now, not for us. He has stuck feet, and falls a lot. He has trouble talking and being understood, he has memory/dementia starting. He still drives and works remotely part time. And this is the grey area that is so painful bc he is still there, but not completely.

By LOHENGR1N On 2016.12.09 15:37
Klb, Hi and welcome to the forum. You've found a great place with tons of knowledge to help. Yes We patients have had P.D. years before diagnosis. 60 to 80 percent of the dopamine producing cells in the substantia nigra have died before symptoms develop to a diagnosable stage. (The experts guesstimate probably 8 to 10 years) Many times the side effects of medication can be mistaken as dementia so I'd suggest talking those concerns with the Neurologist. Others here will weigh in to help too. Again welcome to the forum

By Klb58 On 2016.12.09 16:28
Thank you, I look forward to all the advice, suggestions and support from everyone.

By Trusting On 2016.12.10 01:27
Welcome. Feel free to scream, vent, ask question and more. We've all been at this for awhile now and all have our days. Does your husband have a walker to help him when he walks? If not you should speak to his doctor about getting one. His meds might need adjusting too. I think my biggest struggle in the beginning and even now is how to know what is part of Parkinsons and what is caused by something else. It is so hard to know the difference. We are here for you. Blessings to you and your family during this trying time.

By LC On 2016.12.10 08:56
I understand how you feel. Please know that there are others out there experiencing the same things you are. I found this forum to be one of the most helpful for me. Lots of knowledgeable, kind members. Keep reading and posting. We are all here for you.

By Klb58 On 2016.12.10 13:10
Yes exactly, I'm always questioning "is this PD?" Or dementia? Or something else? He does have a cane but he never puts it on the ground. It's always held up and then he loses his balance and falls. I find myself nagging him all the time to use his cane, stand up straight, and other things. I don't want to nag him but he says he appreciates it. But it just stresses me out. Does anyone else ever feel like just running away? Far, far away????LOL, but seriously??

By LOHENGR1N On 2016.12.10 16:03
Klb, When He stands or walks are his arms kind of drawn up bent at the elbows (kind of like a kangaroo's arms?) this is part of P.D. for some in fact it is a sign Neurologists look for is lack of arm swing as a sign for upping medication. Parkinson's will also make us slouch forward shoulders rounded head bowed so it can be hard to stand up straight (some neurologists don't like to add walkers to patients until absolutely needed because walkers tend to encourage slouching forward when used). I can understand urging him to correct his posture to help prevent falls however knowing it is the disease and not a habit developed or lack of concentration may help and ease your mind.

By flowers12 On 2016.12.10 20:04
Klb, yes I often get in the car to run to the store and think, what if I just didn't go back? I think all of us dealing with PD feels this way often. My hubby is now having more and more days where he can't understand what I say and can't answer a question even with a yes or no. I have just had to tell myself to walk away until he calls me back. He is having a harder time walking but he is refusing to use even a cane. We have a transport chair for emergencies but have only used it 3 times in 6 months. I walk with him everywhere holding on to his elbow so he doesn't fall. I feel like I'm in prison, can't go anywhere because he won't sit in the transport chair so we could go places. Life is not what either of us ever expected.

We just have to do the best we can and thankfully we can come here and rant and rave and get it all out. Hugs to you.

By bjt On 2016.12.14 10:14
Wow. I thought I was all alone until I started reading some of these posts. My husband has had PD for at least 10 years now and it is progressively getting worst. He is at the stage now that he barely cannot walk some days and depends on me for everything even when he can do it himself. He refuses to use wheel chair and walkers. I find myself being angry and impatient..This is not the life I signed up for. I raised our two children and was looking forward to the traveling and adventures after they got through with college. But all of that has changed and now I am stuck in this life I do not want to be in, and feeling guilty for those feelings. My job requires me to travel some and I have so much pressure to find individuals to take care of my husband and sometimes just cannot go. I feel like I have another child placing demands on me. There is a 16 year age difference between us and I am really having a hard time with this. I have no friends because we have been with the military for years and we have moved so many times. I feel myself moving into a state of depression, the sad part is that I am in the field of taking care of others.....probably not to good right now.. but I keep remembering that God does not place on you more than you can handle. thanks for letting me ventilate.

By carman96 On 2016.12.19 10:09
Klb58, does your husband go to physical, occupational or speech therapy? Those can help.
Does he see a Movement Disorder Specialist? It is essential to have a neurologist with special training.

By Daybyday On 2017.01.14 12:15
Hello Klb58, I feel so much for you. It is so very hard to feel you are all alone when you are trying to take care of your loved one. My husband was also diagnosed 4 yrs ago too (although he must've had it for at least 2 yrs before that) and he just turned 65, I am 59. So, we have a somewhat similar situation, although my DH seems ok so far mentally he is having a very hard time with his speech and his other big issue, the jaw and right arm tremor. Every situation on here is a little different but I am sure we ALL feel like sometimes we are in a "prison" in a way. Then we feel guilty about it. Like flowers12 said in her post, life is not turning out the way we expected it to. We have no choice in the matter and we feel cheated. A lot of us have these same feelings. Our neurologist told us that we should start to consider getting evaluated for the deep brain stimulation surgery so now we have to look into that. DH says he will only go ahead with it if he is assured it will help both the arm and the jaw tremors. I needed to vent too. I want to send you hugs & just know you are not alone.

By Trusting On 2017.01.24 01:54
I see where your husband is carrying a cane. When the neurologist saw my husband walk with a cane he told him to get rid of it b/c it was going to trip him. He's under doctors orders to use the walker but most of the time he won't (he forgets).

The driving is going to have to be your next big battle. The VA has an area that will re-evaluate for their driving and he didn't pass. His license got suspended (thank the Lord). Prayers and Hugs for you.

By LOHENGR1N On 2017.01.24 12:28
Doctors vary in their opinions, I've been using a cane for many, many years and my neurologist doesn't like walkers as they encourage slouching more. Yes it takes getting used to and tripping is more apt to happen at first. My gate is one that has me kicking a shopping cart while pushing it so a walker would be kicked. (As a side my friend tried a walker and fell right over it breaking a couple of ribs and bruising several others.) I also was sent to P.T. when getting a cane to make sure I used it properly. So doctors vary in what they chose always run it by them and discuss the pros and cons of what's available.

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