Young-Onset PD - How Do You Afford This? - Parkinson's Disease Message Board

CAMH · 08-31-2001, 02:53 PM

I've known that the man I'm about to marry, who is only 28 yrs. old, is likely to develop full blown PD - he hasn't been officially diagnosed yet, but that seems to be fairly typical of these doctors I'm hearing about. Right now his coping strategy is to ignore it, and I don't want to upset him, but I have to take control here and take care of him. I have a few questions for anyone who can help or direct me somewhere (and you should know that I've already scoured the internet for as much info as possible and am on all the newsletters, esp. the ones for young-onset PD). 1) What can I do to protect his insurance coverage? He can't/won't want to work at his current place of employment forever. The only thing that may be a blessing to us is that he has always kept up his engineering union dues and I believe has prior medical coverage through them, but I have no idea how likely it is that he would be dropped. His work medical plan is what he usually uses. I'm afraid of asking questions of the wrong people or alerting the insurance co.s to something that they don't already know and then they drop him...
2) his current neurologist I believe did a bad thing and put him on L-dopa right away. All my research suggests that this may actually accelerate his condition, and that he should have started wid dopamine agonists. Has this doctor screwed us, and if so, is there any recourse for us? The fact that he's prescribed l-dopa for him alone may be a black mark against us as far as insurance records go...

I could really use some advice, as specific as possible, or at least someone to call... thanks so much. it is so tough to know that our lives together will eventually be radically affected by this disease and I have to bear this alone so as not to agitate him or trigger depression in him (he's not exactly known for his sparkly positive attitude toward life).

Googy · 08-31-2001, 03:40 PM

I know you must love this man very much.You will have a hard road ahead.Most of all can you deal with this PD?I know... 27yrs years with my husband with PD,our companion !!! Trust your Neuro at this time.Starting on Sinement at once doesn,t make a differnce as far as I'm concerned.This is the only med. that now works for my husband and the only one he takes.There is Social Security disablity.But when the time, comes when he can no longer work,this is what he will need to apply for.This time will come ! I truly wish you both the very best.

Googy

Syl Miller · 09-01-2001, 05:29 AM

You may want to check into Long Term Care Insurance. I have not found one insurance company that will take a person with Parkinson's. But, if he isn't diagonsed yet you may have a chance. With the cost of meds for survival this is one of my greatest concerns.

Caring · 09-02-2001, 01:29 AM

CAMH,
We are literally neighbors. Can you tell me more about your husband's condition? Maybe we can exchange email addresses. I am undiagnosed, at age 30, but have many of the symptoms of Parkinson's and take Sinemet generic for my condition. Without the medication, I shake so hard I can't even talk or walk.

Please let me know if you would like to exchange info through emails.

Take Care, and you are a Good woman for marrying the man you love, and not letting his condition scare you away. Sometimes, I feel like my husband has been cheated, having married a healthy woman, only to have me develop all these health problems which he will have to live with, instead of having some energetic, lively woman he doesn't have to worry about every minute of the day, and could go out and not worry about her getting sick to the point of nearly passing out, or having pains so bad she can't even walk.

Sorry I don't mean to depress everyone, but you should understand, your husband will probably feel that way sometimes too. Well if you would like to meet a neighbor, let me know. Until then, take care.

Sincerely,
Caring

Bruce · 09-02-2001, 07:43 AM

You miight have an advantage with your husband belonging to a union. I am not an expert on unions, but I live in a GM town and it would be a good idea to discuss with a union rep. if your husband could continue his insurance when he decides to retire. Their is only one alternative, if your husband loses his insurance, and that is medicare, which you will receive after qualifying for SS disability. Medicare, at this time, does not pay anything for prescription drugs, but that is going to change.

Worry and anxiety will only make the situation worse. I hope you both have a good "nest egg", because Parkinson drugs are very expensive. Because Parkinsons is a progressive disease more drugs and higher doses will be necessary in the future.

As for starting out on Sinemet, their are diifferences in opinion whether or not to start with Sinemet. I agree with Googy. I don't think it makes any difference . Sinemet is the "gold standard" and is the most effective drug in the early stages. You have probably read about Sinemet wearing off in about 10 years, but no two Parkinson patients progres at the same rate and the drugs prescribed are unique for each patient.

It is a very stressful thing to be forced to quit work and it is true that depressionis common in pd patients. It is to bad you and your husband can't freely discuss the problems, because depression only gets worse if it is kept bottled up inside. Your support and just showing your husband you will be there for him will be great help for him.

One of the worst things a caregiver can do, is to feel you have to do everything for him. It is important for his mental health that he can try things and even if it takes longer or he might fumble around, his ability to take care of himself can do wonders for depression.

I have been through most of the things I discussed and none of it is easy, but you would be amazed how well you both can cope with Parkinsons if you try to keep a positive attitude.

Bruce