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By DaytoDay On 2022.06.06 09:24
How is everyone doing? So much happening in the world and itís hard to stave off the anxiety and negative feelings as hubby seems to get worse everyday. What do you do to cope with the stress?

Also, I need to start to look for someone to come in and help provide respite. What is the first step? Has to be someone I can trust.

By greyeyed123 On 2022.06.06 15:45
Mom seems to be doing better with her DBS. We had another adjustment on 6/1/22 based on a CT scan. She seems slightly more confused and slightly more obsessive since the adjustment, but that could just be me.
...
I'm really stressed out now as dad is having heart failure issues, along with kidney issues. They switched him from medformin to insulin Saturday in hopes that it would help his kidneys. I left the house this morning with both of them in bed and looking rather rough, but pretty good, I guess, considering all their health issues.
...
School is out on June 17th. I'm just hoping dad improves by then, or at least doesn't get worse. More doctor's appointments this week. If I can devote some full time caregiving to them this summer, that might make a big difference.

By junipersage On 2022.06.08 14:32
My husband finally retired in January. He is 63. It was a hard decision but he said he knew it was time when he was having a hard time figuring out how to do some computer procedure at work, and he found an instruction sheet for how to do it but couldn't really understand it, and then realized that he himself had written it a few years ago for a class he used to teach. So there has been a lot of upheaval with getting the paperwork done for getting him on disability, and figuring out new routines.

The good side is that he seems a little better since not working. It is eliminating the stress from his job, and he is getting a lot more sleep and naps, which I think is good for him and helps him think more clearly. The down side is that he is pretty apathetic and doesn't do much at home. I tried hard to interest him in different kinds of exercise but to no avail. And I can't get him to do anything on a schedule when I'm not there.

I'm currently applying for a new job that would be 30 hours a week instead of 40, so if that happens I would hopefully have more time to spend with him and help find things he can engage in.

He watches a lot of tv from first thing in the morning to late at night, and even if he is not really happy, he seems at least content.

Ever since he had the DBS he sleeps better at night, he doesn't wake up with stiffness and bad leg cramps like before. But he does have more REM sleep behavior and does a lot of talking in his sleep and thrashing around. When we get in bed at night we talk for awhile and then before I turn out the light I build a "pillow wall" between us so if he punches or flails in his sleep I won't get whacked. On Memorial Day we took a trip to the redwoods and stayed in a hotel and he thrashed around so much one night he fell out of bed. Fortunately he was fine and woke up afterwards and was coherent (not like the time before!)

We did a redwoods hike and he was able to walk about a mile and a half (really good for him!), even though the trail went through a creek where we had to walk in the water with some rough and rocky footing. He did fall once in the creek and got wet, but he was a good sport about it and we just chalked it up to an adventure.

For Father's Day we are going to the zoo with our two kids (age 23 and 25) and I have the wheelchair to bring if he needs it but if he keeps doing as well we may even try going without it. But probably I will bring it.

In April we flew to visit my dad and then I flew home and he spent another week with my dad, which was a nice break for me, plus good company for dad who is 81 and a bit lonely. My only worry was having my husband fly home alone but he did manage okay, even though he annoyed my dad by insisting on being driven to the airport four hours early because he was worried about moving too slowly or getting confused and having trouble finding his way. His only trouble was finding his luggage at the end of the flight, which he eventually did but not without some help from airport staff. It's hard to know what he is or isn't able to do sometimes and I don't want to undercut him, but also want him to be successful. It's very rare that we would travel separately like that so likely that situation will never happen again.

He had to have an endoscopy because he has had so much trouble with heartburn, which is probably Parkinson's related. Fortunately that all went smoothly and no trouble with the anesthesia, and the results were all clear. He is now on medication for the heartburn. His next appointment for DBS adjustment is in September. And I'm now trying to get him an appointment for dermatology because he has lots of moles and I know PWP are at twice the normal risk of melanoma. I want the dermatologist to survey them all.

That's all the update from here!

By PDNewbie On 2022.06.25 17:42
We are still in early stages after my HWP Feb diagnosis made this all official. He is still not on Sinemet or any other PD drugs. I suspect he has LBD as his symptoms fit. Weíll see.

In particular, He struggles with balance issues, particularly with sit-to-stand and stand-to-sit. He also had major depression and paranoid delusions with some hallucinations. These were an unanticipated shocker for us. He has most of the other classic PD symptoms, including shuffling, drooling, tremors, etc. he also had his first freeze a week ago.

I am already overwhelmed, but find this forum to be helpful.

I mostly relieve stress with exercise and dread the day I can no longer leave HWP for an hour or two. I need to find more stress relievers. During a high stress period in recent weeks I was in a car accident, lost a hearing aid and more. So, I am not necessarily handling stress well right now.

I am also looking for in-home care and I am concerned about trust too. It must be really hard to have outsiders in your home, but whatís the alternative?

First, I am going to try a free option available to seniors and not income- based for 112 hours of care per year. Our Local Center on Aging (ADRC) told me about the program. Since the year is half over, they would contract with an agency to provide free respite care for a half day per week until the end of the year.

Next, I will look into care I need to pay for. If that allows my HWP to stay in our home longer, it will be worth it. Hugs and good wishes to you all!

By NoMatterWhat On 2022.06.25 23:25
Checking in:
My husband is holding his own right now and we are using this time to make additional improvements to our home which will make it a bit less labor intensive to stay here as his things progress for both of us. I am still battling my own recent health issues which will make it more difficult than i had even anticipated to care for him and the property. He has been my champion, taking care of me while working so hard to maintain his own wellbeing. We are truly stronger together. We have both been Feeling very grateful for this time.
I think of you all often and am anxious to hear how things are going.
NoMaterWhat

By junipersage On 2022.06.27 14:45
PDNewbie, I'm curious why your husband hasn't started any medication yet. It wouldn't do anything for the LBD, if that's what it is, but it sounds like he has plenty of other symptoms that would justify trying it to see if it helps. Did your doctor have a reason that it would be better to wait?

By PDNewbie On 2022.06.29 03:06
JuniperSage, when the neuro diagnosed him in February, she said he was in very early stages and he didnít need PD meds. Since then, it appears to me that he has progressed very rapidly.
He is in the hospital now with a mild case of Covid. However, he was so weak that he couldnít get off the floor by himself after several falls. Also, he had trouble propelling himself forward to walk to the bathroom. He kept freezing. The PCP on call told me to take him to the ER. Since I have Covid too, I couldnít take him and had to call the paramedics.
The neuro saw him again briefly when the paranoid delusions started, but said she wouldnít put him on sinemet then because it would make them worse. Based on his earlier history, she felt the delusions were psychiatric in nature and probably not due to PD. However, as we left she said he may be developing LBD. We see her again in August and a new MDS in October.

By junipersage On 2022.06.29 15:31
I'm glad you have some upcoming appointments where you can keep pushing for answers. There are some other diseases very similar to Parkinson's that come with a much more rapid decline, including Multiple System Atrophy (MSA) and Progressive Supranuclear Palsy (PSP). Maybe one of those diagnosis is still on the table. Because you're right, that really does seem like a rapid decline.

Thinking of both of you as you recover from Covid. Not fair that you should have to be dealing with both things at once!

By VioletV On 2022.07.03 19:01
PDNewbie
that sounds so difficult. I find myself wondering if the neurologist who diagnosed your husband is a PD specialist (a Movement Disorders Specialist). Many caregivers report that community/general neurologists do not have up-to-date and complete understanding of the nuances of PD medications.

By NoMatterWhat On 2022.07.04 07:23
PDNewbie:
I have just lost my mother, who had Alzheimerís, and learned from her caregivers that people with dementia seem to suffer a rapid decline with Covid; moreso than those without a dementia diagnosis. This may account for some of the decline you are seeing. You are dealing with so much i wish you strength and the comfort of the friends here in this forum. We are here to share understanding and support.

JuniperSage:
I wanted to let you know that my husband, too, is on heartburn meds and has a lot of gut issues with his PD. He has had 2 skin cancers removed from his face as well as other questionable spots. From what I understand, this is yet another issue to be vigilant about. It sounds like this is on your radar and you are doing all the right things.

I just felt the need to confirm these things with you and offer my support. I hope everyone is able to enjoy a bit Summer, listen to the birds, look at the sparkling fireflies and sip some cold tea. Make a
Happy memory today.

NMW

By poollady On 2022.07.04 11:58
Dear NMW so sorry to hear about your mother, my sympathy to you.

Are any of you having trouble getting your PWPs to take their medicine? My hubby usually takes them along with vitamins every morning with OJ but every once in a while (like this morning) he says "pass". Well you can't pass, you have to take them EVERY day. Any suggestions on how to encourage him?

It's bad enough he won't do his exercises at home, only at the PT place. And he asked me this morning why is he seeing double.

By PDNewbie On 2022.07.08 05:03
JuniperSage, Thank you for sharing your warm thoughts. I think he has more than PD as he is declining so fast. I will look into the diseases you suggest.

VV, the original neurologist is not an MDS. My HWP likes her a lot, but I have mixed feelings about her. Twice, she sent prescriptions to our pharmacy where the total amounts didnít reconcile with the dosage timeframe. For example, she would write a prescription for something like 50 pills to be taken 3 times per day for 10 days. It didnít add up! The prescriptions were temporarily delayed to enable the pharmacist to obtain clarification. We have another appointment with her in August, but are seeing an MDS in October.

NMW, you have my very deepest sympathy for the loss of your mother. May she Rest In Peace. Thank you for your support. You have mine as well.

Poollady, There was a brief time earlier this year when my HWP was extremely depressed that he wanted to stop taking all his meds so he would die. He even discussed this with a priest. He wanted to know if stopping meds would be considered an act of suicide. The priest said he could choose not to take meds if he wanted and the Catholic Church would not consider it to be suicide. I told him he had to take them anyway and he did. I made sure to watch him take the meds too. I suspect the next time wonít be resolved so easily and I would also love to hear thoughts on how to get PWP to take their meds.


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