Wearing a spouse's hat & seeing my husband deteriate!!!

[Lauretta]

At this point, my husband has not been told by the neurologist that he has PD......He is not on any meds. He has a hand tremor......
I recently visited the neurologist myself to discuss my concerns and told him about all my observations..
shuffles....hunched-over while eating (face almost in his plate)....
does everything in slow motion....Tired & fatigued after minor chores....
back-aches daily....Poor-motivation...Anxious/Negative....Speaks-low......
He has had issues with dizziness for several years upon standing....
In 2006 he had a bout with depression....He is 66 years old.
He was scheduled to see the neurologist in September, although, I was told by the neurologist that he wanted to see my husband much sooner.....
At this time the neurologist did mention PD to me......He is scheduled to see him on June 9th.
My husband was upset with me and mentioned that he was not going to keep the June appointment....What do I do.???

[Diane]

Hi, lauretta. My heart goes out to you. I am sure you have doen everything you can think of, to convince him that life will be much better if he can get treatment of PD or whatever he has. (It sure sounds like PD to me.) My husband was diagnosed nine years ago. The Dr. said, bad news is you have PD (just by watching him walk); good news is, we can get you going again and you can continue to work to full retirement age. The meds worked immediately (though I know not everyone has this happen), and my husband had about 5 years of nearly-normal activity before the disease progressed to where the meds can't entirely compensate. During the five years, he had good movement (not perfect), and the only bothersome symptom was muscle weakness. Maybe if he knows the meds might give him back some of what he has already lost, he would consent to go to the Dr.
My husband initially had to take only 2 sinemet tablets a day and no one knew he had PD for about 5-6 years. He didn't want anyone to know.

Does he know anything about PD or the treatment? Maybe it would help to know that just taking a couple of pills per day can make such a difference?

Please let us know how you do on this. It imust be so hard to see your husband fading away, when he could be helped by the neurologist.

Diane

[Lauretta]

Dear Diane,
Thank you so very much for sharing and caring. I certainly will let you know how things work out.
How is your husband presently doing?
Sincerely, Lauretta

[lhurtado]

At this point, my husband has not been told by the neurologist that he has PD......He is not on any meds. He has a hand tremor......
I recently visited the neurologist myself to discuss my concerns and told him about all my observations..
shuffles....hunched-over while eating (face almost in his plate)....
does everything in slow motion....Tired & fatigued after minor chores....
back-aches daily....Poor-motivation...Anxious/Negative....Speaks-low......
He has had issues with dizziness for several years upon standing....
In 2006 he had a bout with depression....He is 66 years old.
He was scheduled to see the neurologist in September, although, I was told by the neurologist that he wanted to see my husband much sooner.....
At this time the neurologist did mention PD to me......He is scheduled to see him on June 9th.
My husband was upset with me and mentioned that he was not going to keep the June appointment....What do I do.???HI LAURETTE
IT SURE SOUNDS LIKE PD. U MUST CONVINCE HIM 2 GO 1 WAY OR OTHER. THREATEN HIM OR PLEAD W/ HIM. DEEP DOWN HE KNOWS & CAN'T ACCEPT IT! HE KNOWS HE WILL PROGRESS. HIS BOUT W/DEPRESSION WILL BECOME MUCH MORE SERIOUS & DANGEROUS! I KNOW , I'VE BEEN THERE & DONE THAT. HE'LL GET ALOT MORE ANXIETY & PANICS ATTACKS. DEPPRESSION IS PART OF PD. BUT THERE ARE DIFFERENT MEDS THE NUERO WILL TEST HIM & REFER HIM TO THERAPY, COUNSELING. IT IS HARD 2 ACCEPT. U LOOSE YOUR
INDEPENDENCE, & HE FEELS WORTHLESS. THERE IS NO CURE BUT IT CAN BE CONTROLLED & BUY GOOD QUALITY OF YEARS! THERE R DIFFERENT PD MEDS.
LINDA

[Lauretta]

Dear Linda,
I certainly appreciate your kind and informative reply.
I will make every attempt to make it happen...
You are so right....fear/anxiety is playing a big part, as well as denial. He does not like to talk it out....I'm hoping that
the doctor recommends counseling for him...
Again, thank you....Lauretta

[Diane]

Dear Diane,
Thank you so very much for sharing and caring. I certainly will let you know how things work out.
How is your husband presently doing?
Sincerely, Lauretta

Hi, Lauretta. I am glad to see you came back to the forum. My husband is one of the fortunate PD people for whom the disease moves slowly. He has gradually gotten slower and weaker with some mental deterioration; however, he is still working (teaching) and plans to work one more school year. He has to have a driver to take him to work, but he still drives a little in our small town. He should not be driving at all, but I can't convince him to give up the keys entirely. That is one of the hardest things for me about this disease: he doesn't always recognize that he is doing unreasonable things, and I don't know when I will need to take some kind of action to protect him from his own bad judgment. He loses everything: wallets, money, keys, mail, driver license, tools, papers he is working on or reading. I have had to learn to say (to him and myself): I am not going to look for that right now; I have to go to work (or whatever). It would drive me crazy, just looking for things all the time.

My husband is still able to walk fairly well, but in the night (when he hasn't taken his meds for several hours) he needs a small walker to get to the bathroom and back into the bed. He has a hard time getting into and out of the bed. He does occasionally freeze in a seating position and has to be helped to rise and get going. Your description of your husband (not on meds) sounds very much like my husband is now, when his meds are wearing off. I don't know how bad it would be if he were not on meds, but I know it would be very bad. We see the neurologist every three or four months, and the dr. commented that my husband never gives him a report of how he is doing; he always says "ok". It was only when I started going to every visit with him that the dr. was able to get the full picture of the advancement of the disease and modify his meds.

I have been participating in this forum for about a month, and it has really helped me to know that these symptoms are part of the disease. I wondered all the time whether there was something more wrong with my husband's health, like alzheimers.

The good news is, there are so many meds out there and they work so well, that your husband and you can really have a much better quality of life if the dx is confirmed and he can get the right mix of prescriptions.

This is probably much more detail than you wanted; but when I was in your position, I really wanted to know what the next few years would hold. I was more afraid of the future and some of the literature is unnerving, without any examples of what they mean by "mental deterioration" and such.

Good luck on getting him to go to the dr.

Diane

[heather]

Hi Lauretta
welcome
I'm Heather and looked after my Husband Jim [66 this November] who has a illness , that mimics PD for over 12 years
because it's a very rare illness, and he was only the 7 th he had ever seen with it, all he could offer was sinemet for the shakes
He informed us he had, had it for a few years before, so gave us 7 years, Jim went straight into deep depression,we saw many psychiatrist,who didn't no what to do as none of the medication was working, except for tegratol [spelling] which stopped the night shouting , so we both decided to get on with life, live it to the full, knock down each wall, that it built , and it's worked
this is my opinion remember,he has to go to see the neurologist to get a proper diagnoses, before you can both move on, once you no what is happening, then treatment whatever can start, he has to be depressed just wondering what is wrong with him, and as you said he may need some help to come to terms with it
take care Lauretta

[Lauretta]

Diane, Hello Again
I welcome your detailed information.......I'm a positive person,
although this situation is weighing and sad to experience.......

I find the mornings are good for him, but as the day progresses and if he does any chores he gets fatigued and achy....I try to encourage activity like vacuuming and such....He does give it a try, then needs to rest.

When he goes out with friends for an afternoon and we have planned dinner with friends, I'm observing that it is too much for him...too long of a day....he gets cranky and his tremor gets worse.....

I'm hoping that he keeps the June appointment...He has not said a word about it and has not cancelled it......That is a plus.....

Lauretta/Anne....my real name is Anne Marie Lauretta....The name Anne is already listed.

[Lauretta]

Hello Heather,
Thank you so much for the info...God Bless You and Yours...
Your strength and support is admirable......Enjoy a great day..
I'll be in touch soon....
Lauretta

[heather]

Hi Laurette

please keep in touch
I found the things that work for us, not forgetting everyone is different
, works for one and maybe not for someone else

Openness.

Honesty

staying positive

laughing, especially at myself, when doing something stupid

not bottling things up

and looking after me, as with out me, no one else to look after hubby .

[grldnklly]

Hi Lauretta,
I am carer for my father. He was diagnosed 7/8 years ago. He was just like your husband at the beginning. He refused to accept that he had pd and talked about not seeing a consultant or taking medication. I think this is brought about by fear - if you are in denial then you don't have to think about the future. Thank God my father has since moved on, he now openly acknowledges that he has pd. At the beginning he got mad whenever I insisted on talking about pd and especially when I told people he had it. I have worked long and hard to make him feel secure. To assure him that no matter what I will always be here for him and that whatever he has to face in the future, I will face it along with him. I have also pointed out to him that he might be the only one with pd, but he is not the only one effected by it. I have always been very open with him, never hide anything from him and tell him the truth at all times. He is going through a bad patch at the minute, his medication is no longer working and needs to be changed. He has to go into hospital to have his meds changed. At first he refused to go, but I have now got him to agree to do so and we are just waiting for a date. I simply reminded him that if the shoe was on the other foot and I was the one with pd, he would do all in his power to make sure I tried everything that was available.
I will keep you and your husband in my prayers.
God bless
Geraldine

[Lauretta]

Hi Geraldine,
Thank you so very much for caring and sharing..
My husband's appt is June 9th...If he keeps the appt, I'll let
you know the results....
Your prayers are certainly appreciated.

Sincerely,
Lauretta/Anne:)

[Pauline]

Hi Geraldine,
Thank you so very much for caring and sharing..
My husband's appt is June 9th...If he keeps the appt, I'll let
you know the results....
Your prayers are certainly appreciated.

Sincerely,
Lauretta/Anne:)

Hi Lauretta /Anne
It take us all awhile before we can admit it or except it some longer than others I know I had symptoms long before I would make the appointment in fact I tried to hide my symptoms from every one just give him time and space he will come around:):):)Pauline

[bruce]

Hi Geraldine,
Thank you so very much for caring and sharing..
My husband's appt is June 9th...If he keeps the appt, I'll let
you know the results....
Your prayers are certainly appreciated.

Sincerely,
Lauretta/Anne:)Hello Lauretta I know how your husband feels. He probably thinks that if he does not see the doctor then he can deny having pd. You need to put guilt trip on him. If you have children ,get them to guulit trip him too. I do not mean to sound heartless, but it is imperative for him to see the dr. He will find that there is help and everything is not gloom and doom. good luck, bruce

[Lauretta]

Dear Pauline,
Thank you for taking the time and sharing your thoughts...
I certainly appreciate it.
Sincerely, Lauretta/Anne:)

[Lauretta]

Dear Bruce,

Thank you for your honesty...(no offense taken). My husband does not like to discuss the issue of PD........
But, when he visits the doctor he does listen to him...
Maybe the doctor will give him a direct diagnosis without beating around the bush......then we can deal....
Hope you are doing ok...

Sincerely, Lauretta/Anne:)

[Diane]

Hi, Anne. I just wanted to mention that our family doctor did not get the diagnosis right: he thought it was a pinched nerve in the neck! He sent us to a neurologist, who spent only five minutes with my husband before making the diagnosis. He looked at strength of both arms and legs, then asked my husband to walk down the hallway and back. The way he held the right arm (close to the side, with no swinging movement) told the whole story, dr. said. Another dr was there, observing, and our dr said, "See the arm? Typical of PD." Then, he told my husband "there is only one way to know for sure that it is PD -- have you take sinemet for a few days, and the symptoms should go away." He was right!

Diane

[Lauretta]

Hi Diane,
Happy to hear from you....
I realize that "we" have to be our own health advocates...

Looking forward to the dr.'s visit...

Sincerely, Lauretta/Anne::confused:

[Drew Saunders]

Dear Bruce,

Thank you for your honesty...(no offense taken). My husband does not like to discuss the issue of PD........
But, when he visits the doctor he does listen to him...
Maybe the doctor will give him a direct diagnosis without beating around the bush......then we can deal....
Hope you are doing ok...

Sincerely, Lauretta/Anne:)

Lauretta, don't mess with the doctor. Insist on seeing a neurologist who will be able to put you both in the picture. It may be bad news but then again if it is confirmed then you can move forward and get on with your lives the best way you can. Not knowing is awful because you , as a human being, fear the worst. When you know what the problem is you can deal with it and make the most of your life together. Good luck. Have the best day you can every day. Depression is a by product of PD so you gotta fight it. It's kinda wierd this PD and because we are all different in the way it affects us it is sometimes difficult to grab the nettle but looking through this site will most definately help. I am 8 years down the line since being diagnosed and make the most of each day. Welcome to the Club. Embrace it - it truly helps,
Drew:):):)

[Lauretta]

Hello Drew,
Nice to hear from you.....Just to fill you in, my husband has
seen the neurologist twice so far.......February was his last visit.....(I did not go that time)......He scheduled him for six months to return.....(September)....
I did speak to the Neurologist (alone) in May.....He did mention PD to me....then he rescheduled my husband for
June 9th.
I am going with him on this visit, no matter what.....

Thank you Drew, Take care, Lauretta/Anne:confused:

[heather]

Hi Geraldine,
Thank you so very much for caring and sharing..
My husband's appt is June 9th...If he keeps the appt, I'll let
you know the results....
Your prayers are certainly appreciated.

Sincerely,
Lauretta/Anne:)

Good Luck
Lauretta
we will be willing for dad to keep his appointment on Monday
but i think with your determination , and being so honest and open with him he will go
take care and good luck

[susan wheatley]

hi lauretta, i have just read your post about your husband, i was diagnosed 5yrs ago and went into denial when i saw the neurologist who diagnosed me he wanted me to start on meds right away needless to say i didnt i thought i could manage and if i wasnt taking meds then i didnt really have pd does that make sense, but am now taking meds and things are not so bad i have now come to terms with the pd, you can still do most of the things you did before with a little bit of help give your husband time everyone has their own way of dealing with the news, he needs to have a posative attitude it does help, he is still the same person he was before please tell him to take all the help he can and things might not seem so bad good luck for the 9th hope he keeps his appointment god bless susan.

[Lauretta]

Hello Susan,
I certainly appreciate the information that you provided to me....Thank you....
Be well....Sincerely, Lauretta/Anne:confused:

[parkie]

Hi lauretta It may help you to use what happened to me to convince me to go for advice as to what was wrong with me.
I had hardly ever been ill throughout my working life,kept fit, had a good diet, non smoker,(a little goody, goody) I could not accept that something was seriously wrong with me although I had for several years been gradually getting worse showing pd syptoms. My wife knowing that I had a problem but would not take her advice to see a specialist, arranged for several of my friends (one of whose mother had pd and my wife was not present) to speak to me telling me that I was not the person I used to be, and they wanted me to be as I was.They sat down with me and explained that I had all the signs of pd. I was shocked and upset that they cared and I then went to a pd doctor. The rest is history as they say, and I was a lot like my old self when I got on the meds.

[Pauline]

Hi Laurette
I like Parkies advice maybe hearing it from a Close friend may help , And I was told by my Doctor that PD is very hard to diagnose at first that's why they quiet often get it wrong at first I was told at first it doesnt show up on the brain scan it doesnt show until later :):):):)Pauline

[Lauretta]

:)

Hello to all of You....
Lianne, Pauline, Susan, Geraldine, Drew, Bruce, Diane,
Heather, Linda.....

A quick note to inform all of you that my husband and I did keep the appointment on Monday with the neurologist....
The Dr. did say that he has mild Parkinsonism.....At this point,
he advises vitamins...drink a lot of liquids daily.....stay busy, get an interest. Meds were mentioned, but both the Dr. and my husband agreed not now.......
If my husband was in denial, he isn't now........The visit was a step in the right direction....His attitude is good.

Thank you all so very much for all the caring and sharing....

I certainly will be in touch...

Be Well and take care of YOU and Yours....

Sincerely, Lauretta/Anne

[Diane]

Lauretta, thank you so much for letting us know your news. I know your are relieved to know that meds are not necessary for now. It will be interesting to hear how the vitamins and exercise regimen works out. Please stay on our forum and let us know how it goes.
Diane

[susan wheatley]

hi lauretta, i am glad your husband feels better after seeing the neurologist hope the vitamins help avoid the meds as long as possible god bless susan.

[Pauline]

Hi Lauretta
Thank you for letting us know and I am happy that your husband is facing up to it now Attitude plays a big part in it exercise is very important I try to walk everyday my balance is getting bad so if I have to I use a cane or on really bad days I use a walker but I still walk every day , and swimming is very good my DR, recommended that keep up the fight don't give in good luck:):):)Pauline

[heather]

Hi Lauretta
Hope you and hubby are well
So glad he kept the appointment, and he has brought his head out of the sand[i mean that in a nice way]. Now you can start to live your lives, and think that magical thought positive, be happy and smile, but most of all, please keep in touch,if it's only to say "hello, we are having lot's of good days", we love to hear that our friends are doing well, and not only about the rough times.
Take care