[Marla Klein]

Recently went through whether we should move from 2 story to one as my husbands illness has advanced. Like you we have a small room downstairs with a small guest bathroom, shower only. Decided to get a hospital bed he is still mobile but going up and down the stairs hard on him. We got a hospital bed from our insurance company as he needed surgery in Dec and would require being downstairs for awhile. He original thought he would nap downstairs during day as needed and come up at night. He isn’t able to do that even now, so for now he is still downstairs and enjoys the first level. He is now using a walker too and I doubt he will be going upstairs again. We too have discussed our options moving going to retirement or assisted community , or moving closer to one of our kids. Last few months seeing how fast things can change not knowing what is coming next our way having the downstairs room was a great option m, and truthfully it is working out better than we imagined. So for now we are staying put will revisit as a need arises and will figure it all out when and if we need to. I’m glad we didn’t move to a one story and I don’t know where we will be in months years to come so for now just grateful to have more time to figure it all out and can stay put. I will say I recently have begun downsizing getting rid of stuff putting our things in order as that has become my new priority so in the event something happens to him or me it will all be easier for the one left to manage or for our kids to sort out in the event one or both of us can’t. The purging has made me feel great going through a room at a time. It has empowered me on days I have a few minutes or hours to tackle a room or just a corner. My kids love that we are putting everything in Order while we have the right mind to do so and I think it is a gift to leave things as orderly as I can as we transition into this crazy life with Parkinsons. My husband is starting to have some cognitive issues and to still pick his brain while he still can help me is a blessing as I see the difference time is making. Good luck with whatever decision you decide in moving or not I admire that you are taking the fine to talk openly with your spouse about the present and future is huge . I

[Marla Klein]

Sorry  about typos but I’m sure u get the idea of what I had to say

[Marla Klein]

My husband and I never had any pets growing up once Herb was diagnosed with Parkinson’s and it began to get worse he kept saying he would like to have an animal I contacted a woman who helps place dogs that she can’t show with people with medical or emotional issues. We were not able to pick Oscar our Shitzu  but after meeting snd interviewing us and  knowing we were first time dog owners she decided to help us. She picked  the right dog for us Oscar kept him for 4.5 months after he was born and made sure right temperament for Herbs needs.  he has been a joy, living never barks or jumps trains easily and when Herb fell over a  year ago he stayed  by his side  till help arrived. Kind loving knows when he needs to be close sbd I was very hesitant but I must confess I have gone to live our 14 pound 2 plus year old Shitzu Oscar and feel lucky to have him as our kids f sad o far away. My husband loves him so and it has helped him to have Oscar by his side.

[Marla Klein]

My husband found weighted pens have helped in the beginning. Now he prefers dictation although he struggles with his speech and is in big speech therapy. At times voice activation can’t pick up his voice and he becomes frustrated as his typing is hard to do at times too. So on good days voice activation on his  iPad and he does most of his stuff in the morning as that seems to be his best time. On bad day he just passes

[Marla Klein]

My husband’s father had PD and was diagnosed at same age of my husband. Sadly he passed at 82 my husband is 78. He fears he will go like his dad.

[Marla Klein]

<p style=”text-align: left;”>My heart aches as I read all these posts. None of us picked the road we are traveling but we must find peace, some time for ourselves and do the best we can. I, like many of u, feel robbed of the man I knew before PD.  it has been a hell of a time adjusting to all the changes and roles one needs to do, to just survive . I mourn the loss of the man I knew and I too get angry feel robbed of all we had planned to do in retirement. But here we are just doing it one day at a time. Good days I celebrate,  hard days I pray will end and on those bad days I look forward to the next good day. The changes are hard to watch and sometimes I just want to run away as it makes me feel sad and lonely in this role I am in. I try to get out a few hours each aft when he sleeps just for my own sanity. I admire each of you, and feel badly that we were given this role of caregiver and feel worse for our PD loved ones .  I  pray we all find the strength to move through this horrible illness.  How  I long for the calm good days. For now I’ll  cherish the good  when they are in front of me. Good luck to all of us . I am  glad to have this forum to know I am not alone.</p>

[Marla Klein]

I am a wife to a parkinson patient. As of late his caregiver too. It has been a roller coaster as we learn to adjust to life with this illness. I suspect my husband has had it for at least 6 or 7 years . There were so many signs I didn’t get it until falling and tremor grew worse and short term memory kicked in too.  Doing well so far on the meds but have had problems with his voice  now. He is in speech therapy and boxing at his physical therapy place with few other parkinson men once or twice a week. He developed skin cancer recently and had melanoma on his skull Squamish cancer on his arm removed 4 weeks ago and now some basil popped up too. Recovered nicely this week back in his therapies so hopefully will be doing better as he had bad days with his parkinson after the surgery and during recovery.  Our life has changed a lot as he now prefers to stay close to home and he has good and bad days. We are at a motion disorder neurologist for  about 9 months now. She placed him on correct meds and since on proper meds the falling has stopped for now. Also he is Dressing better just zippers still hard for him. All in all we are managing our kids Live far so I’m doing best I can in taking care of him. I wish  everyone well on this journey.

[Marla Klein]

Would love to hear what has worked for people. Thanks

[Marla Klein]

My husband is doing boxing for parkinson patients at his pt place. He likes it and he started loud speech therapy helping his voice which was becoming very soft fading and hoarse. It has helped alot. Got a dog first one ever for us my hubby is in the mid 70’s im in my late 60’s. Although first time owners to Oscar  a Shitzu  who has been a life saver for him and me . He walks him twice a day . We had some changes done in house got rid of some  carpeting as hard to walk on for him we put handels in shower and built in a stool plus added hand held shower-head.   he is trying to exercise more uses a stationary pedal thing while watching tv. He also got guardian life alert that he wears and that makes my going out for short periods of time so much easier too. He used it once when he fell snd it is worth everything having that security when he is alone. One day at a time.

[Marla Klein]

You will get back to yourself it will take awhile. My husband had covid a month ago first three weeks very tired weak couldn’t do Pt or any exercises and symptoms acted up more. Happy to report week 4 back in therapies and where his symptoms acted out are now back to where they were pre covid. Meds working again, tremors better, agitation much better,and more engaging since feeling better. It will get better rest for now take care of yourself best advice drink lots abs this to will pass

[Marla Klein]

My husband had covid and his symptoms did increase and it took about three weeks from onset till he was back where he was before being sick. More mobility issues more tremors more general weakness and lots of sleep. This is the first week he is joyful again back into all his therapies too and back on track.

[Marla Klein]

To Roy’s wife

Oh I so get it I just joined the forum I believe my hubby has had parkinson for about 6 to 7 years maybe bit longer it started with essential tremors so they thought. As time went on meds didn’t help he grew more aggitated and about 2 years ago began to have more problems as I described in my post but because of COvid took us awhile to get to right neurologist. Thankfully I got his regular dr to get us in big physical therapy and that helped a bit . Also he wears the guardian necklace that detects falls and he can push anytime. That allows me to get out a bit wout fear of him falling which seems to be under control right now since he is on the parkinson meds. He also does loud speech therapy as his voice soft goes in and out as of late. No one prepares us for what it is like the emotional and the physical and the oh my what’s to come things. I feel beeline many days.  His dad had it at his age and he saw how he progressed so that scares him a lot as it does me. But there are new meds new ways of treating that when we  embrace it all it does help. He has a pedal stationary thing that he uses while on a chair watching tv as he can’t ride a bike or drive any longer. He gets upset when I answer for him but he is so slow at times hard not to but I’m learning patience is everything. Some days actually a lot of days I feel like I’m taking care of a toddler. The change from husband to this at times so hard  I don’t think I anyone can get this unless they walk in our shoes. I never understood his moms anger toward her husband when he got sick and couldn’t do things. My husband was a kinder soul before this smart as could be now forgetful joy in his eyes dimmer. He had beautiful handwriting and was a neat person now writing small shaky even with heavy pen. We fight over taking showers over changing his clothes and it got real bad I wasn’t sure what was going to happen. But then a friend suggested a calendar wipe board  and it has  helped to have so many less arguments. For awhile we were both sad maybe a bit depressed and now that we have a system going with good therapists and  drs we are a bit more relaxed and accepting of all of this I had retired after him and I was hopeful of visits to my kids maybe few trips we always put off now I’m lucky if I can get back east to my kids. I am going to try in early summer but if he doesn’t come I have made it clear I need to go to see my family and I will bring someone in to stay here while I’m gone a week. My nieces wedding in April he doesn’t think he can make it beyond service so we are now going to go and spend a night in hotel even though less than hr. from our home as he can go and if he needs to go back he’ll be able to where my daughter from New York and her hubby and 2 kids will now stay there too. I got a sitter g For the two boys and hw m it’s the gal B so if he goes back early she will be there if he needs anything. I’m calling it a mini retreat. Not my idea of a European vacation or river cruise but heck I will not miss imp things if I can figure it out. Trying to be Creative,  trying to pick priorities and trying to be true to me in all this too.  It’s exhausting I love that he goes to sleep at 8 I stay up to watch Tv usually the silliest  shows that  I can find and just veg <span dir=”ltr”>till 10 ish</span> then sleep and  start our next day . He gets tired easily so I get a break <span dir=”ltr”>around 1 to 3:30</span> daily as he naps and I try to go out with a girlfriend for quick coffee or walk to keep me sane for an hour or two. Life is so diff than I ever thought it would be but we are trying to navigate and be Crestive along the way where we can be too and stay on a tight budget as I worry about future his needs and how it will impact us . It’s a lot and st the same time I try not to burden my family or friends with all that is happening. My kids saw  it when they were here and saw his behavior change over a  few years. They said they wondered why I stayed but now knowing part of the behavior was his parkinson they tell me they are happy I stayed happy I am trying and they are here if I need anything. I just feel they have alot on their  plates with  covid small kids so I try to just take it one day at a time.

[Marla Klein]

I am Caring for my husband most days he does pretty well but he is no longer driving for past 7 months so I now spend a great deal of time managing his drs appointments ensuring he takes meds on time his meals and driving him to therapies boxing and speech. He stays home much more than he did a year ago and I try to be his social connection to outside world. Invite couples over take him to market which he loves to do and encourage him to have a name friend come over or go to there house a bit too. He can still dress on his own but sometimes needs help with zippers buttons shoes and I have put a calendar so day to day he knows what is needed where we are going and when I leave where I am going. He was asking the same things to many times in a day so this has been helpful.  Seems to help keep him less stressed if he knows plan and what is happening. I feel I have gone from being his wife to more being his caregiver. Not fun the change but in it for the long haul. Some days harder than others. He has had parkinson for sometime just wasn’t diagnosed till he began to fall shuffle more and have trouble dressing now that he is with the right neurologist motion dr things are better but he still likes  me close by. Hard part our kids Live far away and he doesn’t want to travel to east coast says to hard for him. We live in Calif. grateful fir the good weather abs we got a dog first time for both of us that brings him a lot of joy and he walks him in the front of the house twice a day  and lives having Oscar by his side. The dog emotional has been great for him abs I actually derive pleasure from our Shitzu too. I k ow as time goes in there will be more caregiving needed abs I will get help we need to maneuver through Parkinson. I just never thought I would be doing this at 67 but I find peace when I get out when he naps with a girlfriend for a walk chat or whatever. Blessed to have good friends

[Marla Klein]

Thanks for info.

[Marla Klein]

Where does one find these items button closure love to find. My husband having trouble buttoning his pants

[Marla Klein]

My husband who has Pd has had vision problems due to eye muscles not working like they use to bec of his Pd also voice cones and goes gets soft when talking g he does kid speech for that w speech therapist and it helps alot. Also rickvsteady boxing for balance walking issues and in boxing tvey use loud voice to use those muscles too. He hates internal shakes he calls it and memory loss and he has a very hard time typing on the g C imputed from hand tremors. Voice recognition helped but when his voice changes the program doesn’t work. One day at a time and he too has lost a lot of weight and sleeps so so much day and night and he hates confusion he feels and  short term memory loss other than that he is doing well lol

[Marla Klein]

He is not ready for that I have to pick my battles but I have tried to find sone resources a lot of caregivers are expensive and until i can’t do stuff for him I don’t want to spend a lot as I fear the day will come when he will need a lot of help as Will I need the help so I’m trying to wait. The volunteer groups have long lists of wait time too and since  he will not even do an assessment to see who would be a good fit I have backed off for time being. It took a month of arguing that I need to see our kids more and I hope he comes but he feels to much commotion mouse and just to hard to travel to east coast. He finally gave in and said I should try to go . I said it would only work if we have d as I sone stay here to make sure he is ok with friends checking in too. He agreed I think I have someone who works from home a perfect set up as right now he is dreading eating etc on his own so just needs someone here and meal prep and make sure he takes meds walks dog and gets to gis therapy. I’ll look into hiring someone to drive him days I’m gone. So I am planning it. I had him sign a contract that I could go and he agrees to help bec he is somewhat forgetful at times so I wanted that paper signed so he goes to say he didn’t agree lol my daughter thought of that. But as far as long term help I want to save spending till absolutely necessary.