From a caregiver

My wife was diagnosed with Parkinson's about 5 years ago although she certainly was suffering it's effects for at least two years before. Because she has no tremor people do not understand (or in some cases even try to understand) the limitations it imposes - no driving any more, walking ability without support limited to about 100 yards, constant danger from falls and inevitably memory problems. I am proud to be her caregiver but wish that the health awareness community would give the same level of attention to research needs as it does for cancer. My wife had cancer and has survived it but she is often depressed at the apparent lack of interest in supporting the efforts of The National Parkinson's Foundation and other organizations that finance help to find a cure for this slow and devastating illness.

28 Replies

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  • Thank You for being such a kind, understanding and loving caregiver! Your wife is a very lucky to have you by her side. Thank You for caring enough about all the rest of us to question why there is not enough research for Parkinson's happening! And Thank You for bringing up the apparent "lack of interest" in this "slow and devastating disease"! What can we do? What can we do! We must come up with something that stirs people to want to support our cause for a cure. This site has a lot of very intelligent people, lets hear some ideas people!!

    jupiterjane

  • hi Dave R

    i have been diagnosed with PSP a rare form of pARKINSONS & havebalance/ fallingprobs ; walking insideiadn out a problem -

    i llke your wife do not drive after a horrendous accdent when my car was a wrtie off and i escaped nay serious injury

    i have problems iwht my eyes closign a lot ; not blinkign and htus v dry so i cannot wea rmy contacat lenses any more

    i have co ordinaiton problems and cannot macrh or swim any more

    mhy speech is v garbled and my typing dyslexic so communciaion is difficult

    bUT i neeed 2 ry and focus on what i cna do not what i cannot

    i am sitll here 14 months since diagnosis and PSP AND PARKINSONSO ASSOCS R both trying to put funds into research to find causes and cures for these illnesses

    so hang on in there

    is your wife on any meds for teh Parkinsons?

    keep a smile on your face i fpossible

    and love

    ;-)jill

  • HI Jill, I do understand the frustration doing the things that are so familiar to you.

    Yes , my wife is on two Parkinson's meds - but I should mention that there has been some effort to be sure they worked together and taken at the right time. Our neurologist is great but like most specialists sometimes misses things that are probably obvious to him but not to us lesser mortals !

    She takes Stalevo 150 , one at around 8 am, one at midday and the third around 4pm.

    About 7 months ago Azilect 1mg was added and once we found that it had to be taken with the FIRST Stalevo and not the later ones , it has helped with appetite and sleeping as well as some improvement in her balance.

    You keep that smile there as well !

    David

  • Your typing may leave something to be desired, but your love, effort and thought most assuredly does not

  • ahould be a :-)

  • Hi DaveR

    Welcome to this awesome community, hopefully you will find us all as helpful as possible and very supportive to each other, please check out some of our blogs :-)

    Your wife is very lucky to have you as her caregiver....well done you!

    For decades money has been raised in support of a "cure" for cancer....imagine what could have been done if the same time, effort and funds had been put into a cure for Parkinsons ( I NEVER use the word Disease! )

    Anyway take care mate and dont forget if you have any questions or personal experiences to share......or you just want to share a funny story or anecdote then you have certainly come to the right place....we`re here for you both :-)

    Very best wishes

    Andy :-)

  • Thanks Andy - this is one of those times in life when we all need to help each other as much as we can. I shall follow your example and not use the D word

    David

  • I was diagnosed at the same time as a friends husband was suffering from cancer. Her reaction to my diagnosis was 'thank god it's nothing serious'. most people don't even know what Parkinson's is. I do understand this because in the early stages it is not life threatening and I think most will agree that we try to live life for each day and block out what the future holds - but I am still selfishly frightened for my future and agree we need much more media coverage. Well done DaveR xx

  • It is hardly possible not to worry about the future but as so many here say - one day at a time . The good ones are great and we try to forget the bad ones.

    More media attention can help and Michael J Fox does a job working that problem on behalf of all PD sufferers but there will never be too much !

    David

  • Hi David

    I forgot to mention I was diagnosed with Parkinsons in Oct 2011 at the age of 49

    Take care

    Andy

  • All blessings upon you, David.

    When you have PD you are stuck with it. When you are a spouse, an adult child or other loved one, you HAVE A CHOICE. I have read here about husbands who bail out, and children who reject their parkie parents.

    You chose to stay on, out of what combination of simple loyalty, marital responsibility and pure love I cannot say. Not just a care-giver, you are an advocate as well.

    So I salute you and remind you to take good care of yourself. You da man, you gotta stay strong for the long haul.

  • Caregivers are sometimes God's angels in disguise.!

  • AMEN!!!!

  • i agree - fred my 'angel ' he is so wonderful and puts me to shame ...

  • That is so true. I feel I am very blessed to have my husband taking care of me. We try, as much as possible, to live for today. I know what lies ahead but if I let myself go there often I'd be a basket case, not that I'm not one already! LOL! Some days are better than others but you get through them one day at a time.

  • How I envy your wife.............I am a widow, and live alone......I do NOT want to be a burden to my children.............

    I try not to think about "down the road" Now I stay as busy as possible, and smile and everyone thinks I am one happy person. In many ways I am.

    I was diagnosed in 1998 and most people don't even know I have PD. it is now starting to show..... slightly. Azilect has been my "wonder drug"

    David can we clone you:???? :-)

  • Seems many people finding that the meds don't always "like" each other and taking them at the right time makes a big difference in relation to sleep in particular. One trouble is that all the docs are specialists and maybe there is so much new knowledge out there that they have to be but that does not forgive quick decisions that can worsen the symptoms.. My wife had fallen badly before her diagnosis and had pain in her left leg and could not get around at all without her walker. When diagnosed the neurologist decided it was all part of the PD and suggested physical therapy to improve balance. The physical therapist found that there was something wrong with the ankle bone and indeed there was. An unnoticed bone spur had torn her Achilles tendon when she fell the first time. Now a sports doctor specializing in foot and ankle suggested surgery to relive the stress on the tendon. Meant she was bedridden for over 4 months but now rarely uses the walker. Turned out the foot guy knew more about PD than the neurologist did about legs and feet. Conclusion is that you have to try and see if there are other issues masking the effects of the basic PD treatment. I only just found this blog and it is good to find a place where there are real issues/symptoms discussed as it helps me help my wife knowing what is happening to all of you , so thank you for helping me do my job.

  • How wonderful and perhaps unusual to have a caregiver as devoted as you. You must find it very difficult but always seem so positive. This site is wonderful and there is always someome there to offer advice.

    I asked a question some time ago about why people did not uinderstand the seriousness of Parkinsons and got a good response. Many people seem to think it is only a tremor and therefore do not see the need to support the search for a cure. Of course, we all know that this is not the case, but how do educate the masses?

    More funds are needed for research and we have to believe that the CURE is just round the corner.

  • Parkinsons is such a complex illnes ( not a disease ,

    We have been married for 54 years , my husband was diagnoses Parkinsons )fficially. ) 7 years ago .

    I find it uncomfortable using the term carer , I am a wife , friend , lover , who 's husband happens to have Parkinsons . I will do everything in my power to stay at his side in the same way as I have always done . It would be the same the other way around .

    I don't quite know how he would cope , we are all born with different natures and abilities .

    In fact I often wonder how other families or friends cope because it is not easy .

    Without the internet I don't think I would have able to understand as much as I do .

    Mr Google is my best friend lol

  • I am Wayne and my wife is Margarita. I was given my diagnosis in March 2010 but was having all kinds of problems since August 2006. I knew that I was changing and things were not right but being in my early 40's at the time, I was not going to believe or let this happen to me. I was going to just go on and do my thing and work like normal, play like normal, live like normal. I was ok. Right!!! My body had other ideas about that. I was getting worse and as I fought it, it fought me harder till I had to stop working in Jan 2010. All the while Margie was fighting me to stop work, see all the doctors had told me to stop working but who the hell are they, right? I got to go to work and support my family you idiot!!! That was my thinking. Margie was like, I will still go on living if you are dead and so will the Post Office. She was right, still makes me mad. LOL!! And so, Margie took the reins in Jan 2010 and filed my disability paperwork herself and we got it in 6 weeks. She quit her job to be home with me with people telling her how crazy and stupid she was. How were we going to make it? Going from 2 incomes to just disability income? See, Margie was not just some secretary, she was head of fund disbursement for the United Way accountable for millions of dollars and a job she had longed for. Her reply, "God will provide, I have faith". And He has!!! See, she was not going to not be here with me, in good and bad. We are both now 47 and this road looks to be a long one. I hate to have her see me brush my teeth now because I look like some swaying monster in the morning. But she doesn't say anything. I use a walker to get around now at 47 and I hate it making me feel less than myself, she says nothing. She does so much around the house, and she doesn't say anything. She drives us everywhere cause I can't drive, she says nothing. But I say I Love You. For many today this would not be the anchor that would drown them. They would cut loose and save themselves. But my Margie is here, in the other room as I type listening to music and singing, I am blessed not for a caregiver but wife, lover and best friend. She gave it all up to be with me, that is a great sacrifice. One that I can only say, I love you my dearest. Forever!!

    Wayne

  • Wayne - It sounds to me that your Margie feels as I do that the vow " for better or for worse" that we take when we marry is a commitment to each other that we take not knowing what our futures hold or which of us will be the one dealing with the unexpected such as PD. And yes, we are lucky when our spouses are our lovers and best friends. My wife (JennyR) who is just joining this organization as I write to you, is the other half of me - inseparable - and she has over the years been my caregiver when things have gone wrong in my life or job. It is my turn now and I only wish it was with something easier for HER !

    "Forever" is engraved in the wedding rings we exchanged 25 years ago when we were "twined" by a a Hawaiian minister. I should take a lesson from your wife and think more often before making suggestions..........

    David

  • Hi WayneP and Margie, thank you for your posting. My husband and I are going to have our 59 th anniversary in May, we feel like you both do. My husband has required my care 24-7 for six years this coming June, I thank God every moment to provide me the health and strength for me to always be here for him, I would have it no other way, and continually thank God For all HE does for us., bless you both. Big hug to you and Margie from the. Both of us.

  • Waynep, I'm sure your wife is so proud of you and is more than happy to be by your side. I gave up work last July on my husbands insistence, I am so glad I did! I can see the sorrow in his face when he notices things changing, even though I have become a master at covering up - bless him. We met at 16, married at 19 and have been married for almost 32 years, this has been our biggest challenge - he is my rock x

  • i agree with your post about how little there is known about pd dave,even by neurologists of which i am on my fifth,i was diagnosed 9 years ago i was 43,and i refused to accept that i had pd at that age,after 3 seperate consultations i accepted they couldnt all be wrong,my main symptom is extreme tremor along with stiffness and lack of hand control, i had cancer 2 years after contracting pd at the moment i am clear of that but the difference between the knowledge of cancer as opposed to pd is enormous,i have read everything i come across on pd and can tell my neuro things he doesnt even know,its diabolical,i wish i could come across a neurologist with parkinsons then he/she would understand what i was talking about.

  • I am awed by all of your experiences. It has caused me to join this network. My brother, Bob, has had Parkinsons for a few years now. I have watched him deteriorate each time I visit. I don't know whether it is harder for him at this point, or for his wife. His Parkinsons is accompanied by dementia. It is such a struggle for her and so hard for her to watch. He gets up at 4 in the morning and paces the house while she sleeps(?) on the couch in the living room because it is less interupted than if she slept in the same bedroom. His med schedule is enough to blow anybody's mind. He has trouble swallowing and has to be fed pureed food in addition to a supplement feeding through a tube. I give her all the credit in the world for giving him the care that he needs and support her wholly with whatever she decides. My husband and I are taking our vacation nearby their home so that I can assist with his care and get her out of the house for a change. I look forward to being of help. God bless you all.

  • It is great when family understands and great that you will be nearby on your vacation - it will make a difference for your brother I'm sure.

    PD seems to go unnoticed by others in many famlies but I think people just don't know what to say so they stay away. It was that way with my wife's cancer some 20 years ago and often hurtful.

    There is a very interesting and thought provoking video based on Parkinson's issued in the US by PBS Home Video. It is titled My Father, My Brother & Me.

    You can certainly guess how it goes. Worth seeing it's cat. number is FRL62707 and was released in 2009. I bought it through the Public Television Site at

    shopPBS.org

    David

  • This is A super tape and very encouraging whether you've just been diagnosed or had the curse for a long time

    JennyR.

  • Good that we have now both found this site - so much to learn and share with all these great people facing the same daily problems.

    As with everything we do - we do it together.

    Your David

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