In crisis! How do I cope alone? Husband is appropriately in denial over new devastating diagnosis.

People live for decades with Parkinson's. Look at Michael J Fox, he's had it for over 30 years. I'd be more worried about the REM sleep disorder. Is he on any kind of PAP/ASV treatment? I worked in sleep medicine for a number of years and RBD is not something to be taken lightly.

Since neither of you liked the neurologist, the first thing I would do is find one who specializes in this disorder and get a second opinion.

My husband was diagnosed last year with MCI, which he is blissfully in denial of. That hasn't kept me from gathering a support team. I've got my 2 best friends, our PCP and my kids informed and ready to help. Maybe more important, I've got a therapist to talk with and my friends understand why I may not be quite so available to help as I've been in the past.

(((((Hugs))))).

I can empathize with how you are feeling, and also understand your husband's reaction. My husband had symptoms for a number of years before getting a diagnosis, and we were probably more attuned than some to Parkinson's because two of his brothers had it. Parkinson's is notoriously difficult to diagnose, and early signs are easily overlooked or attributed to something else. On the positive side, for many people Parkinson's progresses very slowly and there are a lot more interventions now than there used to be. The "gold standard" medication is carbidopa/levodopa (sinemet), but here are others as well that have different modes of action. There's also DBS surgery (deep brain stimulation) where electrodes are implanted. If it wouldn't freak you out more, you should start reading up about Parkinson's but don't get ahead of yourself worrying about the worst possible outcomes. I would also strongly suggest trying to find another neurologist who specializes in movement disorders to do a more thorough evaluation of your husband. Our primary care Dr. had referred my husband to a general neurologist who did what we thought was an extremely thorough evaluation (took two hours) and she found basically nothing concerning. However, at that time it looked pretty obvious to me, other family members, and our primary care doctor that something was "off"-- his gait was uneven, voice was hoarse and soft, he was having increasing trouble getting out of a chair, etc. A year later he was finally able to get in to see a movement disorder specialist who had him diagnosed in minutes with just a few simple tests. Your husband may resist going to another neurologist at this point becasue he would just as soon not know if he has Parkinson's. It can take a long time to get in to a movement disorder specialist, but it might be good for your husband's doctor to at least get the process started.

Early diagnosis is important because interventions and lifestyle changes can be started earlier, even if medication is not yet indicated. I disagree with your husband's neurologist that "nothing can be done." Believe it or not, one of the most important things a person can do to slow progression and to maintain function is exercise, and your husband could start that even without a firm diagnosis. If you look up "exercise for Parkinson's" there are all kinds of good videos and instructions. Walking and bicycling are excellent. Even if it turns out to not be Parkinson's, we can all use exercise as we age to maintain balance, strength, and flexibility. A referral for physical therapy can also be helpful because a good PT can evaluate a lot and can give your husband specialized exercises he can do on his own. You can do it with him so it becomes a more enjoyable shared activity. Speech therapy and ongoing vocal practice to improve voice quality can also be done even without a Parkinson's diagnosis. My husband's Dr had referred him for speech therapy several times in the years preceding his formal Parkinson's diagnosis. Indeed, the speech therapist was one of the people who suggested to us that my husband might have Parkinson's, just based on his voice and also the therapist's observations of how he moved.

I do have a question. If a lot of your husband's family members have sleep disorder similar to what your husband has, have any of them progressed to Parkinson's? It sounds as though none of them have so far, but have they had neurological work-ups? In your husband's case, it sounds as though there is already more going on than just the sleep disturbance.

I know how devastating this must feel to you, but Parkinson's is not a death sentence by any means. Many people have many years of good functioning before symptoms become sever, and there is a lot that can be done to slow progression and maintain function.

Is there a Parkinson's Support Group in your area that meets in person? If so attend. If you can get your husband to go that would be a plus (ask is they allow the person with Parkinson's to attend)
The one thing you might want to do and this is a "just because" everyone should do this...Talk to an Attorney. It would be good if it were an Elder Care Attorney. Everyone should have all their paperwork in order. Will Trust if needed, POA and you both should have POLST in place (I am sure since you both have been in healthcare you know how important that can be)
And you need to think about how he will be able to navigate in your current house. Stairs? Large enough bathroom? Easy access? Is now a time to move to a community that offers Independent, AL and MC if any are ever needed?
I think another thing to do would be to find a Neurologist that you like, it is important to be able to communicate with your Healthcare team.
One of the things you need to do is talk to YOUR doctor. Make sure your doctor is aware of what is going on. YOUR stress will effect your health.
You can discuss your concerns with your kids. You can also tell them that there has been no definitive diagnosis.
Any life altering diagnosis is difficult to process and some will take longer to go through the phases from denial to acceptance. (denial, anger, bargaining, depression, acceptance. And I am sure there is some bouncing around in that process)
You need to get the support you need so you do not crumble before he does.

The sooner your husband gets help the better. I just read a little on REM behaviour and it looks like there is a medication for it. If u were not happy with the Neurologist, find another.

As a person with Parkinson's I totally agree with the response from newbiewife. Neurologists have specialties and you should definitely find one who is a Movement Disorder Specialist. The various Parkinson's organizations have lists of MDS neurologists and you should contact them for info on that and have them send you all their free material and contacts for support groups. REM Sleep Disorder can be an early symtom related to Parkinson's, as some in my own support group have reported. Parkinson's usually progresses relative slowly and it's not unusual to dismiss the possibility that a person has a disease they don't want to have. Keep moving ahead with increasing your knowledge of Parkinson's and make the written info available around the house. See if you can get him to at least start with a sleep study. Get ready for a long haul. Your role as a Caregiver is important and you will need support yourself. It is available so be sure to reach out.

I’m so sorry that you and your husband are going through this. It’s life changing for both of you.

My mother suffered with Parkinson’s disease.

Her Parkinson’s disease progressed slowly because she was diagnosed later in life. Her brother had Parkinson’s disease too. He lived to be 96 and mom lived to be 95.

People who are diagnosed younger have a more rapid progression of the disease.

Neurological disorders are devastating. There is no cure for Parkinson’s disease and I sincerely hope that medical research will keep plugging away to find better treatments and ultimately a cure.

Sometimes meds need to be adjusted for tremors. Mom was on Sinemet. She wasn’t a candidate for surgery that some patients opt for.

My mother didn’t sleep well at night. She started having nightmares as well. Her rigidity towards her later years made it even difficult for her to be comfortable. She did develop dementia towards the end.

I do agree with Newbiewife in regards to exercise for Parkinson’s patients.

My mom’s doctor ordered home health several times and she also went to a skilled nursing facility for rehab. It definitely helped her.

Balancing became an issue for my mother and she started to fall. The physical therapist will give specific exercises for strength and balance for Parkinson’s patients. The occupational therapist helped as well.

If there is a support group in your area, please go. All of us need support when going through these challenging situations.

Wishing you peace as you continue to care for your husband.

Parkinson's is not pleasant but it's not an immediate death sentence either! It changes over time and your husband will likely exhibit symptoms ongoing, but take a breath! Your "rock" is still there and in relatively good form. Now that you know he is at risk for Parkinson's, you can keep an eye on the symptoms and reach out for treatment accordingly. There's no need to make yourself ill. Gather yourself, possibly consult with a doctor for yourself and stop worrying about him crumbling before you set yourself to crumble. Don't catastrophize about what may or may not happen. I know, it's very difficult to do that, but what if he doesn't have Parkinson's and you've made yourself ill? Take care and you'll meet the challenges as they come, IF they come. You can do this without putting yourself and him in a dark space. Good luck and hugs to you. (FYI, my father was diagnosed with Parkinson's in his late 70s and lived to 90).

I'm sure thinking hubby has or will soon have PD is not a fun trip to be on. But, please calm down. What will be will be. Don't make yourself sick over this. Since he is happy being in denial with this, let that be. You don't need to talk about with him anymore at this time. Keep an eye on his symptoms and follow up as needed.

That's great that he's so active and that will definitely help slow down his eventual decline, regardless of whether or not he has PD.

You can get support here. Or talk to a good friend of YOURS.

So, enjoy the time you have together while hubby is still capable. As things progress, make sure you get help so you don't burn out. The first thing I did was add a housecleaner every other week. Then aides a few hours for a few days, etc. You can start thinking about how you will handle things, if and when things get worse.

Make sure your affairs are in order. POA, living will, will, etc.

Go on a trip together. Have fun. Breath.

Good Morning,

What are your thoughts about checking in with a Geriatric Neuro Psychologist every 6 months as opposed to a neurologist once a year or both? Doctors are like mechanics and a good hairdresser. You have to find the right match. One year to me sounds like too much time going by. I am not a medical personnel but I don't believe in grass growing under your feet.

With these diseases--any type of dementia you have to keep on top of it in any way you can--physical therapy, blood work, exercise, the right shoes, a structured routine.

I remember too, way back when, we "the family" first learned of mother's demise. Basically, this is the beginning of the end. The matriarch who held everything together, cooked, babysat, someone we went to when we were upset and needed a shoulder to cry on. Mom was our rock.

Upon Mom's first hospital discharge my eldest brother ran out the door and down the stairs, he couldn't handle it. I needed the support but he couldn't provide it.

In the early days when the news broke about Lewy Body, we were in the wilderness in the middle of a Pandemic.

In all honesty, I am being blatantly honest here, I thought I was going to throw up. I had such feelings of suffering but it did past. It takes time to accept a diagnosis before you can even think about how you are going to handle it and treat it from here on in. My siblings came around briefly at the beginning but it petered out--they can't handle it, not everyone can.

If you have a double whammy, your dad passed and then now your husband, you are probably in survival mode. The way I am now was not how I felt at the beginning of the journey.

You kind of have to ride it out, go to bed early, get up-- get dressed, put your make up on, make your bed, plug in the coffee pot, get our your Bible and ask God for the grace to handle what needs to be done. Don't forget to book hair and dental appointments, oil change on the car. The house and maintenance still has to run.

Read everything you can on the diagnosis, make a list of daily "things to do" and at a certain time, do nothing else. In other words you have to have an "end" to your day for self-preservation. Tell your friends and family, "don't call before 9AM and don't call after 9PM".

Go on the portal and keep up to date on all of hubby's test results. Put a list of meds on the refrigerator.

I run this, my dwelling, with military precision because of the responsibility of caring for a frail, elderly person. You have to put boundaries up and keep your house in order. You have to be the Commander of your ship--your household.

You have to be self-assured because now you are making decisions for the "both" of you. You may not have the backing of the family 100% but if you are in the trenches on a daily basis and your loved one trust you then be confidant.

I listen to others, read, pray, think about what has been said, thank them and send them on their way and make a sound decision.

But, it's hard when you don't feel well, you don't want to make decisions. This Parkinson's, Dementia, 1st cousin--Lewy Body, you learn along the way. Watch YouTube videos by Teepa Snow and occupational therapist who is right on the mark.

Many people have remarked when you are given the diagnosis of any type of Parkinson's etc. Dementia, they really don't tell you how to proceed from there. You walk out the door and pay your co-pay. See ya next year.

I would check a neighborhood reputable "medical model" of day respite programs. I didn't want to send my mother but I knew this beast of a disease wasn't going to go away and I need a place locally so if I have to have to go to the dentist, Mom is safe, fed and supervised. An RN is on duty.

Some offer transportation as you probably already know this from your background but I couldn't get a definite answer from my siblings, "what day are you coming this week", their response, "I don't know". I couldn't wing this and leave it to chance.

Likely I’d react like you whereas a friend kept telling his wife “everything will be okay” as a coping method to her kidney disease and then dialysis. I saw this as denial especially when their lifestyle had to adapt to dialysis, but they rolled with the punches and didn’t fall into a depression or let anxiety rule them. After many years of coping, she got a transplant and new lease on life.

Not that it’s the same with PD, but I have learned to appreciate optimism in the face of overwhelming difficulty. Perhaps DH will accept help if you switch from fear to we’ll get through this and it will be okay (even when nothing feels okay) — and you’ll be in a healthier place to help if you’re not stressing 24/7.

Sending hugs.

You should not worry too much at this point.
Of course, it is understandable you are concerned.
Parkinson disease if indeed it is that as it is so often misdiagnosed progresses slowly.
My husband was diagnosed in 2015, for over 6 years except for taking levodopa there was no changes in our lifestyle, and we basically did not think much of it. He was very active and continued exercises for 2 hours almost every day, we travelled the world and enjoyed life.
2 years ago he fractured his hip from falling and things changed, but he recovered sufficiently, walks sometimes with walker, sometimes without.
Still strong and after few set backs he is back to normal, almost. As long as he takes his meds on time all the time, he is still only on levodopa.
He has no dementia, can learn another language, speaks 3 different ones, avid reader, knows every political and other events. Learning, retaining independence is extremely important. As it is exercise, eating right, socializing.
As PD will progress, but dementia is unlikely, so he is still the same person. Active, engaged in everything, certain activities are not possible as he was avid skier, runner, etc. We still live relatively normal life, adjusted our house with grab bars, walk in shower etc.
As progression is slow and people with PD don’t die from it, but, they are not immune to other diseases. Maybe as recent studies show more prone to certain conditions.
Please accept it, there is never definite diagnosis for PD, in fact, it is the most misdiagnosed disease, so wait and be optimistic, living normal life is most important.
My husband accepts it and he hardly ever feels sorry for himself, he is in good mood, there is no self pity and he does not want me to feel sorry for him.

Here's what the Mayo Clinic has to say and offer: (copy and paste into a search window - https://www.mayoclinic.org/diseases-conditions/rem-sleep-behavior-disorder/symptoms-causes/syc-20352920)

It's time to get yourself to a Geriatric Psychiatrist can walk you through this nightmare and make suggestions on how to bring your husband in to a group meeting with you and/or the entire family.

You both should have plans for a time when you may not be able to care for yourselves. Make sure both of you have all of your paperwork in order, you need powers of attorney for medical (health care proxy) and financial matters. You both need living wills with your advance medical directives, and you both need wills. You'll probably need an attorney to assist with these documents if you don't already have them. Plan for the worst, and if you are lucky, it won't happen, but at least you'll have thought about what needs to be done. If your husband's health declines, you may be able to handle it by yourself for a time, but there may come a time when caring for him is too much for you to do alone. Have a plan for that time. You may need in-home caregivers to help, or you may need to move your husband to a senior facility where they have equipment and professional staff. All the best to you both. Get connected with a local social worker to discuss what programs are available for your husband (and you as a family caregiver) in your state.

Honorable, I wanted to give you an update on our recent visit with my DH's neuro, who I think is quite good. This was a one year check in.

DH opined that his cognitive skills are the same as ever. Doc asked me what I thought; I gave a few examples of his poor memory and his poor attention.

DH has not followed up with a sleep doc as recommended because he doesn't want to deal with a Cpap machine.

Doc said that cpap not the only solution. We danced around that a bit. I offered to get sleep testing too.

Husband stood firm. Doc did his formal "count backwards, what's the date, recall 3 words": results were about the same as last year.

Doc said, hmm, I don't want you to get dementia. Sleep problems often lead to dementia. DH pushed back.

Doc said, but maybe would you just TALK to sleep doc and listen to her/his suggestions, not cpap, since there is no way you're going to do that (this is a technique called "joining the resistance")

DH agreed to talk to sleep doc.

I suggested that re-test of neuropsych might be helpful as DH disagrees with results. With a different clinician.

Good neurologists are patient, take their time, size up the degree of resistance and work the territory that they land on.

We BOTH came out of that room feeling "heard".

HonorAble: Seek out a different neurologist. Some information can be garnered on REM sleep behavior disorder by searching the internet.

Since you both work in healthcare, remember the stages of grief from Dr. Kubler-Ross:
Stage 1 - Denial
Stage 2 - Anger
Stage 3 - Bargaining
Stage 4 - Depression
Stage 5 - Acceptance

I would suggest finding a neurologist that you both like that can also be proactive in treating this disorder. It might be helpful for your husband to use medications for PD to treat his symptoms. If those medications work, he will have more years of good functioning - regardless of his diagnosis. In the long run, it is not about "the diagnosis" but about finding ways to have a "good quality of life" together. You may benefit from some time with a licensed counsellor to process your feelings, develop a plan of action for the future, and finding methods that help you cope. You can do this!

P.S. I am an RN.

I am a physician assistant and have worked in Sleep Medicine for 15 years.
My first question is what is being done to manage your husband’s RBD? He should be evaluated by a Sleep Disorder specialist. Understanding what may precipitate RBD, learning what can manage the symptoms and most importantly maintaining safety in your bedroom is first and foremost. A person with RBD can hurt themselves as well as a bed partner. Untreated sleep apnea can in many instances exacerbate it as well as stress and sleep depravation. Medications both prescription and over the counter can help control the behaviors. can control the behaviors.

Secondly, I would absolutely. Find a new neurologist. We recommend all of our RBD patients have a baseline evaluation so if and when changes consistent with Parkinson’s disease develop treatment can be proposed.

Accepting a difficult diagnosis is challenging for both the family and especially for the patient. It may take time. Education and safety with good medical management is my best advice.