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TOPIC TITLE: Husband with Parkinsons Disease
Created On 3/19/06 12:42 PM
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The Divine Miss M
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3/19/06 12:42 PM
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HELP. iS THERE ANYONE ELSE OUT THERE WHO HAS A SPOUSE WITH PARKINSONS DISEASE?


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The Divine Miss M
 
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emes
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3/23/06 10:53 PM
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Dear Divine Miss,
My husband has had Parkinson for about 20 years, for his 50th birthday. Lately, his symptoms have become worse, and I have trouble coping.What is your situation? Looking forward to your reply. Elderly woman
 
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PDwife
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6/21/06 5:42 PM
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I am new to the Frum Support website, thus the belated reply.

My husband was diagnosed with Parkinson's about almost 10 years ago, but we are just beginning to grasp the scope and complexity of this disease and its treatments. I, too, hope that others will share their experiences.


 
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emes
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7/31/06 11:10 PM
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This is a reply to both divine miss and to pd wife.
I have 20 years experience in living with my husband's Parkinson disease. I will be very happy to answer questions and/or give advice and support. All the best, and be of good courage.
 
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happy mommy
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12/18/06 2:25 AM
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I was sort of depressed to find this the only thread on parkinson's disease. I came here hoping to find a whole support system. Why hasn't this thread gone anywhere? Are you all giving each other support privately or is no one talking? My father has parkinson's. He is only just turning sixty and was diagnosed over ten years ago. Emes, sounds like you've traveled down that road. Maybe I could get my mother in touch with you?
To all (3 of you) What are your husband's symptoms? What kind of meds is he on? How does the pd affect his position in the frum community?
Please, can we get something going here? There must be more frum people out there with pd!!!
 
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emes
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12/20/06 12:55 AM
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I am replying to happy mommy.
I would be very happy for your Mom to contact me. I could also let you know how my children are coping, and how the community is reacting. My husband has seen dr Cote at columbia Presbyterian in New York. His main medication is Sinemet plus Wellbutrin, aspirin, Centrum, fo;ic acid, vesicare and urotrexal. He takes his medictions 9 times a day. He also had a double pallidotomy in California 10 years ago. This cured his very bad dyskinisia but worsened his speech which is now very difficult to understand.
I am looking forward to your response and hope that this will result in mutual support.
Have a happy rest of Chanukah and a good Chodesh. Elderly woman
 
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dmom
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1/2/09 12:01 AM
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Hi! I am so happy to have found this site. My mother is 58 and diagnosed four years ago. She was having a lot of blood pressure problems because of the azilect. Her doctor took her off and the problems with the pressure got better but she is having very strong tremors and she is very uncomfortable. We are not a large family so the situation can get overwhelming. Any tips on nutrition or other things that can help would be appreciated.


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gr8 day!
 
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Earnest
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6/29/10 11:55 AM
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Hi. I just joined to find support because my husband has pd. He's 64, I'm 56 and we've been managing, (emotionally) on our own for the past 10 years. Recently I feel the need to connect with other wives whose husband's have parkinsons. I'm so anxious, but I gave up my chill pill-xanax-because I don't want to be dependent on a potentially addictive anti-anxiety med. He's taking mirapex, sinemet, azilect. He's braving the symptoms of dystonias-foot writhing and being 'frozen/stuck/ until the next dose of meds kicks in. He keeps up an active schedule, uses a cane in public and a walker in the house. .... It's taking quite a while for this thread/forum to become active (so simililar to the bradycardias-slowness-of pd itself. Hope it becomes more active. 'bye
 
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emes
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6/29/10 6:33 PM
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This is a reply to Earnest.
My first reaction is to be dismayed at the representation you have chosen, but i definitely can identify with it. I just turned 75(amve'sh) and have live with my husband's Parkinson for 24 years. At this stage, he is wheel chair-bound most of the time, but can walk sometime if someone is holding him.Two years ago, he has become incontinent and his cognition is beginning to deteriorate. Also his speech is very difficult to undrestand and he is unable to write.
How do I cope.
After our 3 children were married, we had been living for 30 years in our community, but it became clear that we had to move and live near one of our children. It was difficult, but would have been worse had we waited. I tried as long as possible to manage without help, but had to give in progressively. It also became clear that my husband could not be left alone. So we have 3 people who come at different times of the day.
I have been taking Wellbutrin for the past 7 years, but am reducing the dose.
I have been greatly helped by an association called Wellspouse whose motto is: when one is sick, two need help. They have a publication called Mainstay which has been a great source of chizuk. They actually have a frum support group in Flatbush.
If you are interested I have several ideas to make life easier.
This is all for to-day I am looking forward to hearing from you. An elderly woman
 
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Earnest
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7/1/10 2:41 PM
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Hi! Thanks so much for responding to my post. I really, really appreciate the info. you posted about frum support groups. This summer my husband wants to make a 'family meeting' with our (adult) kids. Basically, to ask them to call every month and ask specific questions about how he's coping. I thought I had struggles with my own issues-depression- before he developed Parkinsons. Hah ! (by the way, I'm also taking Wellbutrin.) ...gotta go now. Fondly, , Earnest
 
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emes
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7/1/10 11:33 PM
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Thanks for your reply.
Where do your children live and how old are they? Are they married?
I am surprised that you consider a monthly phone call sufficient, weekly is more like it. It is essential that they understand that they have a duty to get closely involved with the care of the both of you. There is no question that they must be involved in the caregiving, if not they will, chas veshalom, have to take complete care for the both of you, and this is not in their interest.
What are your most pressing problems? Please let me know. Where do you live?
Have a good Schabbos. All the best, with affection. Elderly woman
 
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BobbieB.
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7/12/10 7:17 PM
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Hi! I'm new to your group and am so happy to have found you all. I am 57 years old and my husband is 63. He has had Parkinson's for the past fifteen years. He worked for the first ten years of his Parkinson's but after that he no longer could. We realized he couldn't work any more when he couldn't get off the train because he was frozen and had to go all the way back to Manhattan. The hardest part of the Parkinson's for me is the loneliness. I have Boruch Hashem four children. Three are married and one leaving soon to Israel for the year. None of my children live near me. I work for ten months a year and am off in the summer. This coming year is supposed to be the year I "retire". Honestly, I am terrified of retiring and being a caregiver all day long. When I work, I have a caregiver all day. In the summer, he only comes for three hours a day, and I find it's not enough. Any ideas for caregiving and beating the loneliness?
 
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Earnest
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7/12/10 10:40 PM
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Dear Emes, sorry I've been away for the past 2 weeks. You're right, the kids will be asked (at this historic family meeting scheduled for the first week in August) to call every week, not once a month. Even tho he's the one who is 'sick' he functions much better than I do, according to the checklist in the book about caregiving called 'And Thou Shalt Honor: the caregiver's companion". He bought copies on amazon and mailed them to the out-of-town married kids. I'm in sorrow and fear, and often fight back tears. I am grateful for wellbutrin, but I miss my xanax something fierce. I was phased when you called yourself an elderly lady. Forgive me. This parkinsons has foisted old age on us before its time. It's stupid, but I've been upset, thinking that this stress should've hit me when I'm 70, not 56. Please forgive me for my candor. I wish I were more tactful. One kid who's not married lives in the neigborhood and helps us a lot (shopping, taking my husband to shul on shabbos) even tho he's learning to be an occupational therapist in downstate hospital. BH, my husband has better people skills than me, and the guys in his shul realized he needs help to go to shul when our son is away for shabbos-and he didn't even ask them. I used to go to music therapy and learned to use listening to music to manage my too intense emotions. I'm taking a group art therapy session weekly and feel emotionally overwhelmed. I just started using all my art supplies, so I hope being distracted by art work helps me. I'm gaining weight, and for the first time in my life I don't care about it at all. That can't be good. Our married daughter in Toronto is coming in person for the big summit. Our married son in Lakewood is coming in person for the summit. Our 2 single boys who live in the neigborhood (crown heights) are coming in person. The married son in Cincinatti and married son in California will attend with a conference call. Well, that answers most of your question. All the best, fondly, Earnest
 
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Earnest
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7/12/10 11:00 PM
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Dear Bobbie B. Hi! The book called, "And thou shalt honor: the caregiver's companion' by beth McLeod is all about caregiving. And, about families. Library's can do inter-libarary loans for you or you can buy it on amazon. The loneliness is compounded cause our husbands' are sick, but a lot of loneliness hits just because the kids grew up and moved away. My sadness feels more like I'm grieving my husbands future and my future with parkinsons, not exactly that I miss the kids. We try and finagle a visit to or from them when we get too lonely. My husband drives (I don't) and shares the driving with another driver. When I got/get too emotional in the past I went to a therapist, graduated to a psychiatrist,(taking wellbutrin as an anti-depressand. I just gave up my tranquilizer. I also used to go to accupuncture (when we could afford it. In the old days.) Actually, I learned to give accupuncture needles on myself for sedation and occasional aches and pains. This is the first month that social security disability money came through..actually deposited in the bank account. This is the first year my husband has been laid-off and it's tough. Actually he still works part time, and he still has all the responsiblity to pay the bills, etc. I want to learn a trade and enter the work force but I don't know if I realistically can do it. I don't want to go into debt in training/school and I don't have confidence in myself in lots of ways. 'bye, Earnest
 
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BobbieB.
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7/13/10 1:48 PM
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Dear Earnest,

Thanks for writing back so quickly. What state do you live in? How many years does your husband have his Parkinson's? I am also looking for someone to help my husband in shul because my son will be going to learn in Eretz Yisroel for a year. I'm willing to pay a young boy to help me out. The hardest part of my care giving is not having the freedom to come and go whenever I want. If I leave the house, it can only be for short periods and then I put my husbands life line button on him. I don't know why you're afraid to take any medication to make your life easier. It's not about addiction at this point. It's about being able to get through a day without losing your temper because of all that is required of us. I'm glad I found this group. It's easier to correspond with someone who knows what you're experiencing. Bobbie B.
 
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emes
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7/13/10 10:10 PM
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Originally posted by: Earnest
Dear Bobbie B. Hi! The book called, "And thou shalt honor: the caregiver's companion' by beth McLeod is all about caregiving. And, about families. Library's can do inter-libarary loans for you or you can buy it on amazon. The loneliness is compounded cause our husbands' are sick, but a lot of loneliness hits just because the kids grew up and moved away. My sadness feels more like I'm grieving my husbands future and my future with parkinsons, not exactly that I miss the kids. We try and finagle a visit to or from them when we get too lonely. My husband drives (I don't) and shares the driving with another driver. When I got/get too emotional in the past I went to a therapist, graduated to a psychiatrist,(taking wellbutrin as an anti-depressand. I just gave up my tranquilizer. I also used to go to accupuncture (when we could afford it. In the old days.) Actually, I learned to give accupuncture needles on myself for sedation and occasional aches and pains. This is the first month that social security disability money came through..actually deposited in the bank account. This is the first year my husband has been laid-off and it's tough. Actually he still works part time, and he still has all the responsiblity to pay the bills, etc. I want to learn a trade and enter the work force but I don't know if I realistically can do it. I don't want to go into debt in training/school and I don't have confidence in myself in lots of ways. 'bye, Earnest


 
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emes
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7/13/10 10:11 PM
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emes
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7/13/10 11:09 PM
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I am frustrated because i want to reply while having the text of the post in front of me. When I am replying and want to check the text, I lose my reply. Does anybody know how to get around this problem?
I have found an organization and its newsletter very helpful especially at a time when i had no one to talk to. The organization's name is Wellspouse Association, and its newsletter is called Mainstay. Telephone:800 838-0879. email: wellspouse.org. Support group: support@wellspouse.org. Their motto is: if on is sick two need help.
My advice to Earnest is to drop everything and learn how to drive , also to monitor your husband carefully because at some point it may be dangerous for him to drive.
Also there are a number of newslettes from Parkinson organizations which are very helpful :
National Parkinson Association: parkinson.org, and the American Parkinson Disease Association: apdaparkinson.org,
I agree with Bobbie that Wellbutrin is absolutely not addictive, I have taken it for years at 300mg (long acting), and have switched now to150mg with no problem, it evens out the flare ups of irritation and despair.
Also, it is very important for the children to realize and understand that their father's parkinson is THEIR problem and not yours, and that it is in their best interest to spare you as much as possible, otherwise they will end up, ???? , with two sick parents.
In my husband's Schule the men have organized themselves in shifts to take him to schule twice a day, usually it is the same person for each day of the week, and if they can't come they find their own replacement.
Enough for to-day. All the very best, be of good courage. Elderly lady
 
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BobbieB.
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7/18/10 4:36 PM
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Dear Earnest,

You really are fortunate that you have your sons to take your husband to shul! My husband only has one son and it all falls on his shoulders and being that he is the only single child left at home(he's eighteen) he is having a very difficult time dealing with my husband's illness. You say let the children help out! All my children live far from me so I'm really on my own. During the year, when I work I have a man take care of my husband from eight in the morning till 5 P.M. In the summer he can only give me a few hours, so it falls on my shoulders. My husband really can't be left alone any more because he falls and freezes. Sometimes, I go out for an hour and I'll put on his lifeline button. Today I wanted to visit my daughter and her family in New Jersey. I wanted to leave at 2 in the afternoon and now it's 4:30 and we still haven't left. I told my husband if he isn't ready by 5, I'm not going. My daughter is really sweet and said she'll come to me. However, I haven't seen her house in over a year and I really wanted to visit today.

Last week was my grandson's one year old birthday party. I hired the caregiver to come and left real early. He brought my husband later on.

I really need 24/7 care for him so that I can live. It's very hard not to be able to come and go and do what you used to do because you have a husband at home who can't be left alone. He has Parkinson's for fifteen years, and let me warn you that after 10 years it only gets worse.

By the way for the past five years I'm onLexapro. It helps me a lot. I also have Xanex at home,and I am very fortunate that I don't become addicted to it. I actually take it very rarely. I find going on this website more theraputic that the xanex. Fondly, Bobbie B.
 
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BobbieB.
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7/18/10 4:46 PM
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Dear Emes,
The first thing you need to do is learn to drive quickly! My husband (again he has parkinson's for 15 years) can no longer drive. He can freeze at any moment and it's just not safe for him to drive. As far as a trade. I myself started out being a co-teacher and now I have a full time job teaching. Just remember that there will be a time when you will no longer be able to leave your husband alone, and caregiving care is expensive, unless one has medicaide. However, for your nerves and sanity it is important to go out. If you are able to go out, and he can stay home alone take advantage of it now! Bobbie B.
 
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BobbieB.
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7/18/10 4:48 PM
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Dear Earnest,

I reread your letter and realized that it's the men in the shul that take him. How fortunate you are!Bobbie B.
 
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emes
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7/27/10 9:52 PM
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dear Bobbie
In your previous letter you seem to confuse me with Earnest, this is what happens when one does not have the post in front of one. I wish that there would be a way to print.
Thinking things over, I have come to the conclusion that there is so much to talk about, that perhaps, if the logistics allow, we should try to meet. It could be also anonymous.
I live in NJ, 20' from the GW bridge, I would have no problem driving to Brooklyn, for example. What is your reaction, Bobbie, Earnest, and others? Where do you all live?
All the best and stay well. Emes
 
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Earnest
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7/29/10 10:30 PM
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Sorry. I'm not ready for a meeting in real life. I'm skittish with people in general and I've just begun this internet support group. Next week my 27 yr. old will drive me (us) to Toronto, and we'll be uncle and bubby and brother/mother for 2 weeks. My daughter is such a blessing. Meanwhile, my husband will be flying to Los Angeles with our 21 year old to assist him. He'll get acquainted with a somewhat estranged 30 year old son, his wife, and 2 grandsons (4 and 1 year old) Brave of him, I haven't the nerve to re-connect with that branch of the family tree.
 
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emes
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8/23/10 10:35 PM
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How are you all? Anything new? Do you manage to go on vacation?
From my experience of 24 years, I can tell you that the most important thing is to get as much help as possible, and to leave the house as often as practical.I have gotten my help through word of mouth, and also by placing ads in an internet publication called Luach.com. I am sure that you have one for your region. If you go with an agency, the fees are horrendous, and you have no guarantee that you will like the person. If any of you is interested, I have a list of catalogues with products to make life easier, in particular there is a pendant to be used for INSIDE the house, so you don't have to go checking constantly to see if your husband needs anything.
Also, if any of you is on Medicare, you are entitled to have physical, speech, and occupational therapists come to the house. All the doctors agree that it is essential for the patient to be as active as possible.
That's it for to-day. I wish you all a kesiva ve chasima tova, that you husbands' condition should be stable, and that you should have the strength and the resilence to cope with it all.
All the best, Emes
 
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BobbieB.
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9/2/10 6:36 PM
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Dear Friends!

I have been on vacation, with my husband of course, most of the summer. This has actually been a great summer for me. What I did differently, and I would like to share this tip with you, is I hired a caregiver on vacation from 9 a.m. until 2 p.m. This gave me the freedom to shop and exercise and enjoy the people that were on vacation too. It was a difference from night and day from last summer when I didn't hire a caregiver. Last summer I thought I'd save the money. But let me tell you, you really don't take it with you and better to use it now to get all the help you need.

I am going back to work next week. I also asked my children to split up the yom tovim. I actually feel real bad about it, because I think it is great for the little cousins to see each other. However, I always have to think of my husband's needs first. He wanted to have a son in law for both Rosh Hashona and Yom Kippur so he won't be alone in shul. I really do feel terrible about not having both families for Rosh Hashona like originally planned. I know one daughter will be really disappointed and I haven't told her yet. What are your feelings about this?

Wishing my dear support group friends a good and healthy year and my Hashem help and give us the strength we need to go on.
 
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alteima
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3/19/12 1:49 AM
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I am new to this group. I lost my husband almost 3 years ago. He had P.D. since he was in his 30's. He was not diagnosed by a professional until he was in his 40's. The reason I am writing is to share his experience with the Deep Brain Stimulator (DBS). It is not the most pleasant procedure to go through, but it helps with movement/motion. My husband was able to control his movement better, but what made him happiest was that he stopped shaking. Please be advised that you still must take your meds. It did not cure him, but it did make things more manageable. Hatzlacha to all of you.
 
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emes
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3/19/12 1:07 PM
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Dear Alteima
I appreciate that you are sharing information that could be helpful to other people. I am sorry to hear about your husband, how old was he, and how are you coping?
My husband has had PD for the pas 25 years, he was 50 when diagnosed, but thank G-d, it was right away. At some point he underwent a procedure called pallidotomy which also helped tremendously with his dyskenisia, but made his speech even harder to understand.. At this stage he needs a lift in order to be transferred from bed to wheelchair etc, he is also suffering from dysphagia and we require 24/7 help. We are facing our first Pesach with the dysphagia problem, meaning that he can't eat dry matzos, and can't drink unthickened liquids, including wine and grape juice. I would appreciate hearing from people who are facing the same problems.
Everybody, have a kosher and easy Pesach..
 
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