For those who care for someone with Parkinson's disease
[Home] [Forum] [Help] [Search] [Register] [Login] [Donate]
You are not logged in

Topic New here and hoing for help Go to previous topic Go to next topic Go to higher level

By worriedwife On 2010.10.15 21:17
My husband has pd (56 years old) and was diagnosed about 2 years ago. He had suspected for years that he had PD (his father and grandfather had it) but had trouble getting it diagnosed. He has some tremors but his major problem seems to be intense pain. He has huge muscle spasms that wake him at night. He is losing the use of his hands and I don't know what to do to help him. He does not want to stop working because we are having a bad time financially with all the medical expenses. His meds cost a war pension. He works part time now and I dont see how he can do this much longer. I also think it is affecting his judgement but I cannot get him to see this. I worry about the judgement part after watching his dad spend so much money on the publishers clearing house sweepstakes that he and my mother in law lost their house over it. I just need to talk to someone who knows where I am coming from. I am so depressed but I dont want him to see that since he is depressed too. I tried to get him to go to a support group with me but he refuses. He won't apply for disability because that would mean that he really does have pd. I am at my wits end and have nowhere to turn. help

By LOHENGR1N On 2010.10.15 23:37
worriedwife, Hi and welcome to the forum. The huge muscle spasms you describe sound like they might be dystonia a slow twisting or contracting of the muscles. There is a Physical Therapist who posts on the forum perhaps He can give a few tips on trying to ease the muscle contractions a bit. If it is dystonia you won't be able to stop them outright but He may have some tips to lessen the pain. As for the support group ...well.....when He's ready He'll go, to try to get him there before He's ready can be counterproductive. It may depress him more seeing those with many more problems than He. It's really an individual choice. While support groups are great for some, for others they are not. You've found a great place to frequent often in this forum there are many wonderful people here to help you any way they can. I'm sure some of the Caregivers/Partners will have lot's of ideas for you and your husband. Again welcome, post often ask questions and we'll all try to get answers to you. Take care, best of luck and hang in there.

By karolinakitty On 2010.10.16 08:51
Worried wife ... welcome to our family...i know exactly where you are coming from....
My guy will be 54 this month, has only been diagnosed over 2 years, and he HAD to quit working due to the PD. I can tell you the only thing that got us through was our faith in a higher power, particularly the financial end of it.
We too hurt financially, i know how expensive the drugs are without insurance. I know how even going to the doc was a burden on us. I know how even trying to get his disability was a nightmare BUT it sounds like you have to do it. My guy didn't even have the diagnosis when we first applied for disability. They sent him to all kind of docs to get through this mess. Then we had the PD diagnosis and after a major letter writing campaign we did receive it. We live in SC and it is sooooo hard to get through their "speak". You have to word things in such a way that the simple minds who ok this process can understand it. The ones here in SC are not medical professionals of any kind they are lay people who don't know a thing about diseases or physical handicaps. THey follow a guideline and it is on the Social Security website.
The hardest part was actually getting him to apply for it. There is such a social bad name for people on disability, the frauds that somehow get away with being on it when they don't deserve it, was a label my guy didn't want. He is not nor ever was lazy and not being able to work almost put him into deep depression. He was a bad a$$ chef and worked at a unniversity that fed over over 1000 students a day, plus he had his own personal chef biz too. He has cognitive issues which started out as just being poor judgement and short term memory issues. That too hurt him inside. When he couldn't keep up with simple tasks, it really hammered home the problem.
The way i explained it to him was "It can't hurt to apply for benefits", and you have a better chance over 50, of getting it because you are closer to retirement. ALso during that particular time his over all symptoms progressed so fast, we were unsure of my working and i eventually had to quit.
The benefits came just in time financially and having the drugs paid for through medicare is a blessing. Right now we are in the gap, having to pay for them, but, since they are so expensive, my pharmacist helps us out by giving us the county 20%, and anything else he can do for us. He is local, and that makes a big difference. He still gets what he needs, and helps us get what he feels we deserve. The pharmacist has the ability to know when companies are offering discounts and pass those on to us.
If you have any questins in regards to this, let me know through my email, it's in my profile. I will be glad to help.
If you do decide to go for this, DON'T apply for the SSI. apply for full disability. There are so many financial limits to the SSI and you have to go in for re-evaluations more often .
oh yeah .. my guy won't go to suport groups either, but then we would have to travel over an hour to get to one. We use this forum as well as each other and i have made friends here who we keep in touch outside of this forum.

By flagk On 2010.10.18 20:46
My husband was also recently diagnosed and a script written for drug -- which he has not yet started taking. The drugs scare me the disease scares me --I thought he had arthiritis I thought he was depressedNow I think he probably has Parkinsons but I am not sure how far along he is -- It is so hard to figure -- He covers up rather well. We went to PT and I was not pleased with them. I had worked for a chiropractor and right now I'm paying out of pocket for him cause the insurance doesn't cover chiropatic care. The exercises the chiropactor is using are more demanding than what pt was doing but we have just started and it is too soon to tell if this will help. I know my guy and if he gets side affects from the meds he will stop taking them and that scares the heck out of me. Emotionally I'm a mess and have an apt with a counsler for me cause I can't lose it now. I want to cry and I try to hold back but last night I just started to cry and then got up and had a cig and a drink and went in the other room to sleep cause i just could not be there and not want to be held and loved and it wasn't going to happen.

I have ordered book and am hiding them from him. I don't know if he knows what he is in for and I don't want to tell him and I don't want to see him go through thes But It is what it is and I hate it

By Lynnie2 On 2010.10.24 17:47
Dear flagk,
I am confused, was your husband diagnosed with PD or are you just thinking that he has the disease? Did you actually go to a Motion Disorder Doctor or a neurologist or just a regular doctor. What symptoms does he have?
My husband was diagnosed by a MDS at age 59, 3 years ago. His heart doctor first told us that he thought my husband had PD and it was a real shock, but we wanted to get a specialist's opinion so we made a appointment.
When you go to a specialist he asks a series of questions and also checks out his body for walking, reflexes, possible tremors, memory, etc. There isn't any blood test to confirm this disease so it takes a specialist to known what to look for.
This disease progresses slowly, usually, and medications aren't always subscribed at first, but it depends on the stage he is in. My husband was in the early stages and didn't take the meds at first. They don't like to start them too soon but if they feel they need them, then they are started on a low dose of Sinement and as the disease progress, the meds are increased.
My husband sees the specialist every 6 months and his assistant (since it's a university hospital) goes over his progress.
My husband is now on 2 pills four times a day but he started out just taking 1/2 pill x 4. They don't like to prescribe too much at a time because they want to save them in reserve as the disease progresses.
Don't be afraid of this disease as there are worse things he could have. You can still live with PD for a long time, and everyone has different symptoms. My husband has some tremors and fatigue which is very challenging, and problems rolling over in bed, but some people don't have fatigue and might have something else.
You aren't alone and this forum is good. I also go to a localSupport Group but this forum is good because you have a broader range or people and they can tell you deal with things or give you informatin.
Exercise is a very good thing for PD's. My husband won't go to the exercise class though but hopefully you can get your husband to go to one as the chiropator can be costly.
He should not have side affects from the meds if he is taking Sinement or carbidopa/levodopia. You just have to watch eating protein with this medication though. They recommend you take it one hour before eating or one hour after eating as the protein interferes with action of the medication.
Hope this helps.

By LOHENGR1N On 2010.10.24 19:25
I'm sorry, there can be side effects from sinemet. If you look the medicine up online there is a list.

Some Neurologists/Movement disorder Doctors will give a dose of sinemet to help with the diagnosis of Parkinson's Disease. If the Patient responds to (tremor lessens, movement is smoother, cog wheeling lessens etc.) it then it's almost certain it's Parkinson's Disease. It is true most Doctors will hold off for as long as possible prescribing some medicines as these med's have a "window" of effectiveness(sinemet is one of these drugs) and the Doctors want to give the patient the best quality of live for as long as they can without the complications that can come with some of the medicines. Take care, best of luck and hang in there.

By flagk On 2010.11.01 19:01
Husband was diagnosed by neuroloigist. However i have some reservations about the diagnose. Twenty years ago my husband had a brain stem stoke-- and did not tell anyone for 3 days & knew he had had a stroke -- till he started walking into walls and still did not want to go to hospital. After that he had weakness on right side and extreme spasms that lifted his leg up and and his knee up in the right leg -- The docs kind of po pooed him till they saw them happening and they were impressive. Then they kind of stopped -- His rehab after the stroke consisted of 2 or 3 days of PT and then they sent him home-- kind of here squeeze this ball to strenthen your hand. He recovered well and went back to work and worked for many years afterwards. he has since left that job and taken another easier job. Over the year off and on we have gone to the doc for Restless Leg Syndromeand possible artiritus expecially hip pain -- But hubby is not good about going to doc. So now after 2 months of PT and it was the PT person who suggested Parkinsons -- The PT was not challenging-- The doc & the neuroligist said Parkinsons. At the time the neuroligist examined him he could not touch thhis finger tip with his thumb -- it went to the first joint and he was very slow opening and closing his hand.--- After five days of practice and NO meds he can do both fine. He is still having problems with his gait but after stretching exercises from the chroprator he went from 17 steps in a given length to 12 to 13 steps in the same length in 2 or 3 weeks. Granted when outside it is not so good but in a familiar inside area he can step out now where he could not 3 months ago. He is haveing much less trouble getting up from a laying down position and this week sat straight up forward at the chropactors office which I have not seen him do in a year. Chroprator is doing cross crawling with him in office and i am doing at home also -- We are thinking he was never propperly rehabed after stroke-- The latest is to start trying him to use a balance board to improve balance. Not saying there is not some Parkinson's going on but i would like to see where he is in two months of this exercise program before putting him on meds. Expecially since he is not good at taking meds as directed and staying on them -- He has stopped taking other meds such as those for artiritius (sic) cause they made him feel "funny". Sorry about log post but it is a long story. Since he can get dressed and go to work every day i am hesitant about meds. Oh he is over 70 and still working and does not want to stop work.

© · Published by jAess Media · Privacy Policy & Terms of Use
Sponsorship Assistance for this website and Forum has been provided by
by people like you