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To our 'First-timers': WELCOME


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#1 MamaGull

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Posted 16 March 2007 - 12:20 PM

I always feel sad when it comes to welcoming someone to this forum, because it means that person has a loved one who has PD. You - collectively - have had your lives turned upside down, and we understand the cries of "WHY?" and "How will I deal with this?" and especially "What happened to the future???"

My husband, now 65, was diagnosed just after his 63rd birthday, and we realize now that he had been exhibiting symptoms for at least 2 yrs before that. I guess, in a way, we were lucky, because at the time of his diagnosis, my husband had just been offered a job transfer back to the Seattle area from Kansas. So we didn't have too much time to concentrate on the news; we were wrapped up in all the preparations for the move. We bought a few books about PD, found the various websites, but were not really able to absorb it all. He made the move to Washington while I stayed in Kansas to finish prepping the house to be put on the market. I found this forum in Feb. '06 and started firing questions left and right. After a bit I calmed down a little and was able to absorb all that I'd learned.

The men and women here are saints - no matter what they deal with at home, they are always ready to answer questions, offer advice/insight/experience, and most of all, to hug and support you. This group is mainly women, but there are also a number of men caring for their wives, and our guiding light is Jim K, who has Parkinson's. He shares his own experiences, gives us the opportunity to see through the window, as it were, and see how it feels inside, and his greatest gift is that he encourages us all. A rare and unique gentleman and our dear friend.

PD is a tough foe that doesn't fight fair; there is no timetable that helps you understand just where you are relative to the overall scheme of things. No two people with PD will deal with the same symptoms, much less in the same order, nor will their meds 'cocktail' be the same as the next person. This is why it is very frequently referred to as a 'designer disease'. One size does NOT fit all.

Ask any question that comes to mind - there is no such thing as a taboo subject. No matter what your problem, someone here has already dealt with the same thing, or something very very similar. We are our own community.

Before I close out, I thought it would be wise to share some of our shortcuts (you know, the secret handshake?!!?). We use some 'shorthand' - definitions follow. If I forget anything, I know that members of the forum will fill in the blanks...

PD - Parkinson's Disease

PWP - Person With Parkinson's (also known as "Parkie")

CG - Caregiver

DH - Dear Husband ... DW - Dear Wife

MIL/FIL/DIL/SIL - Mother/Father/Daughter/Son-in-Law etc...

MDS – Motion Disorder Specialist (a Neurologist who has done
additional work and specializes in illnesses of this sort).

DBS – Deep Brain Stimulation – a surgery in which electrodes are implanted in the brain to reduce the symptoms of PD. We have more than a few here whose PWP’s have had this procedure done, and can advise, share wisdom and experience. For additional information on this, check out the “Ask the Dr” or the "Ask the Surgeon" forums, as there are numerous threads on this subject.

Each of us here is in a different place on the PD roadway - many have PWP's that are still in early stage, others are in all of the various later stages, and a few have lost their PWP's but remain here to help. Member's backgrounds are very diverse, but there are more than a few who have medical backgrounds and are particularly helpful. We are spread all over the globe, with members in a number of countries beyond the North American shores. PD inevitably infiltrates our entire life, so in addition to specific PD issues, we share what is going on in our lives. In this forum you will find many others who know how hard it is to be a caregiver, and understand. You will quickly find that you are not alone, and that there are people out there that can not only relate, but help! Finally, we share some humor as well, for 'phunnies' are great medicine, and as often as not, the only thing we will find to laugh about in any given day.

Welcome to the warmest and most nurturing support group you could ever hope to find.

Hugs, Sharon

#2 Diane2

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Posted 17 March 2007 - 10:42 AM

Thank you for your grand welcome to this forum. My husband (64) was diagnosed in 2001 just after his retirement. At the time, it didn't seem to be anything we were too concerned about...A mild tremor and some minor speech changes. So, we began our PD travels. PD has taken its toll on both of us. We are not giving up though, and we are anxiously awaiting DBS surgery in a few weeks. We look forward to getting to know each of you and your experiences with PD.

#3 Gaye Cash

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Posted 24 March 2007 - 12:14 AM

Thank you Sharon for the welcome to this forum. My husband, age 54 has been recently diagnosed with early signs of Parkinsons. His right had shakes quite a bit, I see him slowing down in many ways. He has not seen his neurologist yet (May 31 first appointment) since being diagnosed from the results of an MRI done in December. We have recently found a movement discorder specialist in Toronto, where we live, and hope to be able to see him as well. I am trying to wrap my head around all of this and this forum is incredible. Reading all of the different stories is heartwarming and gives me hope that we will be able to control many of the symptoms, once he has started on meds. Thank you again, and I will definitely be keeping in touch. Gaye.

#4 scorpio42

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Posted 29 March 2007 - 11:55 AM

Thank you Sharon for the warm welcome to this great support group.

My 64 yr old DW was dx'd 2 1/2 years ago after approximately 5 years of trying to figure out why the left arm wouldn't swing naturally when she walked. After many consults with a variety of neurologists, therapists, etc we were referred to a "movement" specialist - and finally found out what we were dealing with - PD. Needless to say it was blow, but at least we finally knew what the cause was.

Meanwhile, walking became more difficult with generalized stiffness. Mirapex therapy improved that, but brought with it sleep problems including vivid nightmares, water retention and weight gain. After two years of that, we moved to Sinemet 6 months ago with excellent results so far - improved flexibility, and a dramatic improvement in general outlook. We are thankful for this reprieve.

We look forward to participating in this forum.

Buck

#5 IreneM

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Posted 21 April 2007 - 03:26 AM

Thank you for your welcome. My husband, 71, was diagnosed with Parkinsonism which obviously is not the same as PD but is the mother of all these maladies. He was dxd in November of 06 and then in Feb. of 07 with Lewy Body Dementia (LBD). He was prescribed in November with Mirapex for the rigidity, etc. but after increasing, I found him deteriorating rapidly and we are now going backwards and in 5 days he should be off it. I also belong to the LBD Forum and they have a bad meds list for LBD and Mirapex is on that list. Sooooo....more recently he was given Memac 5 mg which is like Aricept, this for the cognition. The last 4 or 5 days as we near the end of the Mirapex he has been feeling weak and rubbery legged and I just don't know what to do, especially as the neurologist is away until Thursday. Does anyone out there have experience with Parkinsonism and LBD? Thanks for your support. Irene M.

#6 scorpio42

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Posted 21 April 2007 - 01:54 PM

For IreneM - the difficulties your husband with Parkinsonism is experiencing with Mirapex is not unusual. After 1 year, my 65 year old wife was finding the weight gain (edema?) and nightmares effecting her negatively (and my sleep!). After discussing with her movement specialist (neurologist) her medication was changed to Sinemet (carbidopa/levadopa). That was 6 months ago and the results have been terrific - both in terms of sleep (less tossing and turning); and more flexibility and energy; and most importantly more expression in her personality. We are happy campers!

Please note that not everyone responds equally to all meds.

Buck

#7 IreneM

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Posted 21 April 2007 - 03:48 PM

Thank you Buck for replying. The Mirapex especially for the LBD is bad. I have made note of the Sinemet and its ingredients and will ask the neuro about it. I am in Italy so I have to be sure we have it here. It sounds like it has done wonders for your wife and I hope it lasts for as long as possible. Does your wife also have Lewy Body Dementia? A ray of hope. Irene M.

#8 catiam

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Posted 06 July 2007 - 07:52 AM

Hi-
Both the welcome & the messages made tears come. I guess we all try so hard to be strong for the 'now', we forget to look at the big picture. Reading other PD people stories and problems brings it back into focus. My husband was diagnosed about 6-7 years ago. He has no arm/hand tremors, but does have walking/balance difficuties and severe Othostatic Hypotension which causes him to pass out at night if he goes to the bathroom, or sometimes daytime if he sits for a long time. He takes Sinemet, Requip for the PD & Mitadrine and Fludrocort for the Orthostic Hypotension. What does anyone know about Sinemet Extenders and/or Sinemet Enhancers? His Sinemet on time is getting shorter, and he freezes. Falling is very scary, and we don't like trips to the local ER!!
Thanks for any help.
Cookie in NY

#9 auntiekim

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Posted 26 July 2007 - 05:38 PM

Thank you for the warm welcome! My mil (73) had her family practitioner today tell us that she officially has PD. She has had essential tremors for about 30 yrs but has become worse in the past two years or so. She went off her tremor/PD medicine a few days ago. I think it is Sinemet. The shaking is so bad that she is going back on it tonight. My sil wants to go for a second opinion and I think it is a good idea. Need to convince my mil. Maybe after her appointment mid-August. Alot of thoughts going through my head right now. Anyway, thank you again for the warm welcome.

#10 LindaRhea

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Posted 30 August 2007 - 07:31 PM

Thanks to all of you for keeping this discussion going! I just found you, and don't know if I feel better or worse. I will be (am) the caregiver for my husband who, I'm pretty sure, has PD. He refuses to see a doctor because he says PD is a death sentence and he won't take medication. He sees a chiropractor 5 times a week, but is still getting worse. Based on what I've read, he is a stage 3 PD.

I don't know how to gently convince him to see a doctor, or even explore PD treatments. Any suggestions or advice will be greatly appreciated!

Linda

#11 ihns

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Posted 01 September 2007 - 01:13 PM

Reading the entries, and especially your introduction, was a warm bear hug for me, thanks.

We're in the process of being diagnosed. My husband is 42 and with all the other health issues he's had in his life-- heart, lungs-- we really didn't see this one coming. It's a lot to wrap your head around.

Thanks for being here!

#12 Scout

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Posted 01 September 2007 - 06:56 PM

Hi Sharon, Thank you for the great welcome message. I was hoping that someone could help me convince my husband - who has not 'officially' been diagnosed with Parkinsons because he is too stubborn to go to the neurologist. His family doctor is 100% postive he has Parkinsons and has prescribed Mirapex 3 times a day. The Mirapex is making him very sleepy - he could fall asleep easily before but now its like he's asleep all the time that he isn't forcing himself to do something. He's also having difficulty staying asleep during the night.

His right arm has tremors, his chin has tremors, I've noticed his posture is becoming more round-shouldered and he is starting to occasionally shuffle when he walks.

My husband knows he has Parkinsons but won't take any steps to get more help than just visit his family physician. He is afraid of all the things that will happen when the diagnosis becomes 'official' - at least that's what I think the problem is. He won't discuss it and won't allow me to go to the doctor with him.

Does anyone else out there have the same situation? I know this is rather silly, but I'm very concerned and a little frightened - he's a very active person - active with power tools, active in hunting and handling dogs. He is a major outdoor person. I'm afraid he is going to hurt himself one of these days - sooner rather than later. I'm also afraid that is what he may be planning in the back of his mind - an accident may be his solution!

Thank you for allowing me to voice this to someone who isn't going to feel sorry for me and might have some useful information. Thank you for listening.

Colleen

#13 LindaRhea

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Posted 01 September 2007 - 08:39 PM

Hi, Colleen.

I just found this support group on Thursday, and I'm so glad to have others to talk to. My husband has had tremors for the past 5 years, and they are getting worse. He goes to see a chiropractor, but I don't see any improvement.

Now, like your husband, he has a very stooped posture, and in addition, he has all the PD symptoms - stiff neck, poor balance, hesitation when he walks, etc. He hates the idea of doctors and medication, so I can't get him to go. He has not been diagnosed, and his chiropractor says he does NOT have PD.

I'm worried sick, having a difficult time understanding why he won't get help, and I don't know what to do.

I hope others that have gone farther than we have will have some suggestons.

Thanks for sharing!

Linda

#14 krgvr

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Posted 28 December 2007 - 01:26 PM

Thank you so much for the warm welcome. My husband was diagnosed at 58, and he is now 73. He is scheduled for evaluation re DBS in January. I am very scared about this whole thing. He has had two episodes where he got dizzy, and then just stared straight ahead and did not respond for a few minutes. Apparently had an arrythmia and his blood pressure dropped suddenly. Has anybody had such an experience? I am wondering if this makes him ineligible for DBS? He also has some cognitive difficulties. I hate to put him through the evaluation, since he will have to go off his meds for a day, and I understand that is a horrible experience. Anything you can share about this will be very helpful.

#15 CoupStickBoogie

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Posted 02 January 2008 - 11:00 PM

Hello to you all.
I am new here and new to this all. My best friend has parkinsons, LBD and is diabetic. She has had these conditions for a few years. I now find myself in a totally new situation for which I feel unprepared for. It was suggested that I look for a suuport group such as this.
let me explain.
Micky is a really great friend, she is one of the most generous caring people I have ever met. Micky, I can honestly say saved my life. I just last month finished 1 year of weekly Interferon Chemotherapy. I was living by myself for a time and was suffering severe sideeffects. I was on the verge on stopping treatment. Micky would not allow this and moved me here with her and friends to see me through this. I am in complete remission with no signs of previous disease. I have a lot to thank her for.
We are both Native American and we live on the reservation here in North Carolina. We have become very close as friends, almost inseperable. Many here know Micky for her many good deeds and work with the elders.
Which leads me to this. Micky is getting gradually worse. The Tribal Elders have asked me if I would be her caretaker. There is no one else in this household that they feel can do this. I must say there are other reasons why they ask but they involve serious Traditional aspects which I cannot go into at this time. They are very concerned for her health and well being because Micky is very important to the people here. So I have asked to take on this important thing. I accepted it with no hesitation, I know I can count on help, but this all seems so overwhelming. To top it off her favorite aunt is in the nursing home here. besides Micky and her elderly mom I am about the only person she gets along with as how she suffers dementia. I have come to care for her aunt very much. The Elders council is in the process of giving me Mickys power of attorney and when the time comes I will have to her aunts POA also.
This makes me feel all so very sad as how these two are ones I care for so much.
I do not even know where to start. I cook (quite well) Micky's meals , for her diabetese. I have been supportive in helping her lose weight, almost 40 lbs. I'm making a weekly meal planner,also.And I flat out refuse to allow junk food in this house much to others being upset. Like I mentioned I can count on support, but not so much from those residing here. I am so overwhelmed by it all but damned well determined to see this through to the end. I have set up an appointment to talk to her doctor about what I am going to have to do and take it step by step.
I really need help from people like those here who have / are going through this as care givers.
What really gets me though is that Micky is so young to have Parkinsons and LBd. She just turned 36. The hardest thing I am going to have to face is gradually losing my friend . The Diabetes is robbing her of her eysight, Lbd is effecting her memory and she is having a more difficult time walking. the temors are getting worse. We just this past summer were out everyweekend setting up our native American arts booth at varios places throughout the south. I can only hope we can try next summer. We enjoyed it so much> We would take our Timberwolf around for various education programs and know I feel we may not be able to again. My friend is being takien from me piece by piece and I try hard not to let her see how sad this makes me.

Thank you all for reading this and for any help you can give me now and in the future.

#16 granniD

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Posted 03 January 2008 - 12:09 AM

Welcome and bless you and lots of luck or good meds or good drs or whatever it takes and what ever your personal beliefs are. It is an insidious disease which can make u stop rite in the middle of the street or anywhere else and can embarrass you and make u cry and depression holds your hand in a death grip at all times.
I am a relatively new parkie to this forum.
BUT these guys and gals handle this with a great humor and good will and they seem to know just exactly what to say and what to do to cheer u up!
They always have an answer. Maybe not what u want to hear but it might make you laugh or cry or angry. but you will react and thatis good.

so get on the bandwagon!!! Grannid (Darlene)
BUT these guys make you feel at home and they do it with their knowledge

#17 Rogerstar1

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Posted 03 January 2008 - 06:49 AM

.

#18 margo9958

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Posted 22 February 2008 - 07:32 AM

Hi to everyone.

I am new here and I am a caregiver to a woman who is 62 years old and has Parkinson's.I have been with her for a little less than a year. I care about her alot. She has the dyskinesia and a little trouble walking, but I think it is her moods that bother me. She is in the process of the doctors deciding if she is a candidate for DBS. She is going through normal anxiety about the surgery. But she is scared she will die during the surgery. I really do not know how to deal with her about this. I would welcome any suggestions. Also any suggestions about any help with dealing with PD as a caregiver.

Margo

#19 jojobean

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Posted 25 February 2008 - 08:28 AM

Hi Sharon and TFTWW
I am JoAnn Brown. A 70 year old gay divorcee as in gay meaning fun and flirtatious from the old guard meaning.
I am a Parkinsons victim of about 13 years. I am a Salt Laker from Utah and can say I Been there done that to nearly every thing that you folks have mentioned. And Miore. I am an oldtimer on the open forum, another arm of this same group and thanks to the wonderful generosity of the NPF have also formed a great bond with some real troupers out there who did for me what I hope to help do for you.
The other daY I was visiting with one of your kindred spirits here, who also is part of us, and she mentioned that quite a few of ours have wandered over here now and she thought they'd just love hearing from me and an update on things. Well don't know about that but decided to come an looksee and sure nuff saw several of our deserters, or should I say splitters cause they still straddle the fence.
Well since I also post a similar welcome message, over there, and am quite vocal and friendly, I have come to be very concerned about the newbies there and now here.
But I'm shocked at how many more newbies have posted in just one day here. That means to me that there is possibly a lot more fear going on with caretakers than with Parkies themselves, or maybe they are just more vocal. I wonder?
In listening to your concerns I am more appreciative of my daughter's fears and frustrations dealing with me. And also more aware of how awful this must be for my beloved gradchildren especially two whom I have raised. They are now 21 and 11, both boys and real neat kids. Oh goodness just where to start to be most helpful, as my life has been very complicated. I don't want this to be long but I see so many things that you may want to think about.
Let me try and address your concerns as listed.

Sharon you have done a wonderful job here and I can sure see you are loved and a great help. And you can warn that Jim K that I'll be checking him out, so look out. I am afraid I have a reputation for chasing all the men and Jack Frost claims I've propsitioned (marriage) to every man on the Forum at least three times each. I vehemently deny that. It surely has not been more than twice. Oh how I hate exagerations, and I still am after him he's such a hunk!) So don't believe everything you hear about me , I'm really innocent and just love to tease and have fun. I love all the wives too and let them know I'm no real threat to any of them. Besides that I'm too busy with my store, a Costume Shop of 35 years duration, with 7 employees year round and up to 39 temps at halloween.
I mean it's a little shop of Horrors year round but I now run it from home with managers on site. That and a theme park acre home and yard, and a Roll Royce golf car to chase down all the old men walking around my area. But enough about me.
for now.
Diane, and you others serving friends. God bless you all. Your friend is lucky to have you. My friends are a God send to me too. Don't be afraid. You may never lose them at all. So many good things are breaking loose for us now. A vacine may be the answer as posted on Kathryne dietian's forum and also another she mentions, a newer device for DBS but it doesn't say in what way it's differant.
Here's one for all of you to consider. It's called BPM on the internet and it's based in Michigan. It's inventer claims i's a theraputic recliner that rocks a person rythmically up and down at a set pace that helps circulation and has had real good response for dibertics and Parkinson's. I was set to drive out there next week to try it out for free as many as four days twice a day to see if it helps. The maker thinks that improving circulation especially through the brain barrier delivers meds and nutrition to the various cells in both brain and body, healing whatever is needed especailly bed sores in diabetus and more meds to our dying cells. which I don't believe are dying anyway as I had an experiance just last few weeks ago where in I fasted and prayed for a fellow (gal) parkie, as she seemed in dier need, and as usual I find the Lord pulls some good one's on me. The last time I did that was years ago pre parkiedom, and offered too let Him take anything I had and give it to my dearest friend to help her on an undiagnosed problem where she simply could not get off the couch evert day and was so confused she couldn't think straight. Well next day went to work and immediatly collapsed, had to lie on my cot in my office all day and was so confused I didn't know which end was up. The next day I was back to normal and the next day the friend I fasted for got in touch with me and another invited us to have lunch saying she'd had a small miracle and suddenly had her brain cleared and energy she hadn't felt for a year. It still brings tears to my eyes thinking of that meeting where she used just exacltly the words I'd used in my prayer for her. And we'd been estranged for that whole year so I never heard her condition from herself. Anyway we've been close ever since. I didn't tell her about my fast and prayer till years later. but she never reverted,so when I offered the same for this gal I fully expected to be clobbered again for a day or more again, but lo and behold just the opposiote occured. On rising the following morning I found myself moving like I haven't for many years. My legs felt so young and fluid I danced down the hall yelling after my family to come see me, I had a new set of legs and my whole body was healed. NO pains no stiffness nothing but pure free movement like a teenager. I ran outsde and yelled to the world "hey every one! Look at me I can move again I can run and jump and dance and kick clear up over the railing. Wow it was wonderful. I hurried up and got myself over to church to tell everyone there too, then had to sit for two or three hours until I could run and jump some more, but by then I could feel things were receding and when I ended my fast about early afternoon I was back to parkiedom. But joyful still because now I knew for sure my brain cells were not dead, just asleep waiting for something to terigger them back to life again. And I know that will happen one day for all of us. So don't give up. None of you.
We're going to win our bodies back before many more years you wait and see! I know it will happen!

Darlene, Irene, Gaye, Sinemet is the great medicine that has given most of us life again some for many years Jim Everidge for 30 years now without any loss of it's benefits. Take courage, don't be afraid, nor of DBS either, it's scary but it's not after you do it. I can still hear, or feel, the drill going thru my skull, A bit unnerving to say the least, but I believed in my God and I knew I'd be fine. And I was, though I didn't have as great a response as some have had. A little dissapointed but as time has gone by some 5 years now, I am a believer since I have them cut out on me when being around close to grinders and chainsaws which I carve logs with to make statues, I find out in a hurry that they are working behind the pd scene and without those implants I would be totally vegetative. You get a device to turn them on again with it. NOw you take that message to your husbands and friends and kick them in the rear, and you get yourselves down on your knees together with them and hold their hands and shed tears with them and take their fears on your shoulders till you get out the door then you hand them right back to our maker, whose just waiting for your calls, and you and they will feel a grand relief, replacing their fear with great courage! Now go to and do it all of you! Help is there. This stuff is not a death sentence. Find a souce for theraputic message in your city and get that circulatory system working properly, and you won't believe how much that can help. I won't be coming out to michigan after all as I discoverd a similar therapy table here in salt lake. It offers 5 free uses then $10. 00 a half hour session after that, or you can buy one for $3500, but it's sure seems to help. .

Now I will close for this session but I will return as I have much more to share with you. I wish you well and think you're swell, and hope to meet you in heaven or ---well whereever.
Luff and stuff
JoAnn alias Jojo or jojobean
jojobean (alias Jo, JoAnn,
or
The Good witch of the North,

#20 whatnext

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Posted 18 March 2008 - 05:44 PM

My husband, who is 57, was just diagnosed with Parkinsonian symptoms. His "wonderful" doctor didn't have time to spend with him, but scheduled an appointment for 6 weeks from now to evaluate him.

Is every doctor so callous????? This was the most monstrous doctor's visit we've ever experienced. He talked to me instead of my husband, as if he was incapable of responding, and was a total jerk!

I've suspected for about a year that he might have it, but wasn't going to acknowledge it until a doctor said it.

Any advice from caregivers out there for ways to help my beloved husband cope with this?




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