For those who care for someone with Parkinson's disease
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By Shedog On 2012.10.27 01:38
Wow I didn't even know that there was a support place for caregivers.

Hubby has been diagnosed with PD for the past 8 years now, and it is raplidly progressing. He has gone from an active and vibrant man down to one who justs sits and stares out the window day after day... What an awful life for him, he was a farmer. He has just recently over the past couple of weeks started to hallucinate. His tremors are so bad now that he has difficulty eating a meal. I have taken to spoon feeding him, when the tremors are really really bad, the dogs think he is Mr wonderful and hang around under the table at meal times, cause they know they can have whatever lands on the floor. Then today for the first time, his legs gave out from under him and he landed on his butt on the grass in the backyard. He has a walker and wheelchair for when we go out. Oh and perhaps I should mention that I am in New Zealand. Looking forward to getting some support and perhaps helping others where I can.

By lurkingforacure On 2012.10.27 12:20
Welcome to our family, although I am sorry that we are all here. You sound like you are coping as well as you can, keep up the love :)

New Zealand has had a lot of research about PD going on, I hope it might benefit you and your loved one soon.

By Trusting On 2012.10.27 16:53
Welcome. I still feel like a newcomer too, but this site has been very helpful to me already and I hope it does for you too. Sometimes I look at my husband and wonder what is ahead for us, but I just try to take one day at a time. Blessings to you.

By Shedog On 2012.10.27 17:34
Thank you so much for the welcome... Hubby is sitting here telling me all about the boats on the water outside the window (We don't live close enough to any body of water) and the firebrigade, fighting a fire in an area a few miles north of here (can't be seen from here). He has been hallucinating all morning and laughing cause he is... I don't know why he is so happy today, but I am certainly making the most of it... these days are very rare. I am so pleased for my own mental health that I found this place (purely by accident) and that I can write freely here among people who know what it is we are all going through.

By parkinit On 2012.10.27 22:18
Welcome, Shedog. You have a voice here and people who truly understand what you are going through.

By moonswife On 2012.10.29 10:49
Shedog,
You will find the answer to many of your questions here, some you don't even want to trouble the doctor with. We are glad you found the site, and encourage you to visit often. Do go and read some of the Commentary columns. Have you asked the doctor if the hallucination could be because of a buildup of a drug. He may have you taper for a period, and see if it helps.

By Mom45 On 2013.10.05 08:41
Dear Shedog, I am new to this site also and this is my first post. I tried to write to you last nite but somehow lost the page post --everything. From your post I noticed you wrote about the time my husband was diagnosed. I first noticed the fenestration walk in a grocery parking lot and got him to my neurologist but he found no indication of PD or brain disease. He was very angry at me for making him go to see him. Five months later loosing his balance an. d falling was a more often occurrence. Finally he was willing to see another neuro. His PCP recommended a local movement disorder clinic.and he was given Sinemet . ( He had seen his neurosurgeon but MRI showed no signs of low or high pressure hydrocephalus. He has a shunt placed in the cerebellar space since March of 1991.) That is another story
Your. Description of how your husband is at present is where mine seems to be. Refuses to exercise. Was dismissed from PT for not making enough effort. He has very little tremor; mostly balance and dizziness. Says he will not make it much longer and wants me to do everything when he is capable of walking ,bathing,dressing but only wants to sit In a chair. My H doesn' t hallucinate but his cognitive ability seems to be decreasing. I fix all 14 of his meds. Because approx. 1 year ago he would come to me at 12 mn and want to know what one of his pills was and didn't know he was on WARFARIN which he had been taking for 2 years. I guess what I am trying to ask you , is how do you do this day after day. After 2 years of this I am exhausted. His disease may have progressed more rapidly but from the beginning he decided it was terminal. The psychiatrist thinks he is doing fine on mirtazapine"no he' s not depressed." Husband doesn'drive due to 2 fainting spells-- on in Dr's office. Worked up for MSA in hospital for three days. This site has kept me partially sane but the lack of empathy or appreciation from H. Just drives me nuts. I am still trying do do all -- but get further behind with vacuuming and dusting and so forth. H.won' put a glass in dishwasher.You app. To have farm chores. How do you do it? I know I am luckier than most-children are grown, I was put on disability in 2009 due to PMR and had both hips replaced,so no job to juggle. Oh H is 75 and retired at 55. I am 66. I know I must sound crazy to bother you, . New to this but sounded similar. I hope the hallucinations have decreased. Thank you.

By jcoff012 On 2013.10.05 11:02
Welcome to both of you. I will post more later, as we are on our way to a Hula Festival, then to Lake Tahoe! My husband was dx four years ago, soon to be five, but has been 'luckier' than a lot of PWP, as he is still highly functional and is able to enjoy family, traveling, etc...His main problems are with tremors and pain in his back and legs, although he drools, has the blank stare, is ocd about everything, etc...I have been noticing that if he has a 'meaningful' thing to do daily, he remains focused and alert. We are daily caregivers to our four year old grandson, so he HAS to 'get up and play with me, Grandpa'. Although it causes him to take two or three naps each day, it really is keeping him active.

I wish you both happiness as we all fight PD. I wish everyone on this board didn't have to be here, but we are...and it is because we love our PWP. Hugs and love, Jane


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