what is the time frame for needing a care giver from the time you were diagnosed?

My wife was diagnosed with Bulbar ALS in January 2012. It is a particularly aggressive form of ALS. I was diagnosed with Parkinson's a month ago. I know everybody is different but I am trying to get some idea of how long, from the time of diagnosis, until you needed a care giver to help you carry out your everyday tasks.

thanks

Nervous

14 Replies

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  • I dont think there'a an answer. When the PD gets advanced (10 years? 15? 20?) many parkies to opt for DBS and that helps most people a lot. For a while. You don't say how old you are. A lot of parkies seem to get laid low by something else entirely. Exercise, take care of your general health, and try to set up a living situation that will work long term. Money helps. My dad is 88 and has pd and other compalints; he lives in a de lux assisted living facility and is very well taken care of when he needs it, independant when he can be.

    I'm counting on my wife to help me…yours is a different story. Aggressive ALS! Jeeze. Sorry to hear that. I know my wife could come down with anything, then it's a whole 'nuther story. She actually has some mysterious health issues beginning to appear, so we'll see.

    Stay strong and if you flip out, get it back together, 'cause panic, depression and hopelessness won't help.

    Sincere best wishes, bro. VIsit us on the site, you'll never be alone

  • I'm " only" 62 so I'm not quite ready to give it up yet. I go to yoga class and try to work out 4-6 times a week.

  • I'm 59, retired on disability 2 years ago when I got my dx. I do my yoga and qi gong routines and walk briskly every day. A shoulder impingement made PT necessary, I started today.

    You don;t have to give up nuthin'. You just have to be real. No denial, no defeatism, just being real and appreciating the moments NOW.

  • hi i have psp a rare type of parkinsons.

    aft ermy diagnosis (2 years ago)i organised carers for a few hour s aweek and now have a carer 6 days 4 2/3 hours a day

    it depends on where u r in the world as to wha tis provided free adn what yhou have to pay for

    lol JIll

    :-)

  • My brother had bulbar ALS, diagnosed 1/2011; died 4/2012. My father also had ALS and I have PD. Re your wife, we found that the most helpful thing for my brother was to listen carefully to what he wanted and to do our best to make it happen. He didn't want Hospice, assisted living, etc. He wanted to deal with it on his own and to die on his own terms, which he did. His final wish was to donate his brain for research to the Feldman ALS lab at the University of Michigan. Even though he lived in Mobile, AL, the UM people worked with the UA people to make that happen. Something to consider.

    Re your PD. I'm 67 and was diagnosed at 62 with tremor dominant PD, the easiest kind as I understand it. By cycling according to the Pedaling for Parkinson's protocols (pedalingforparkinsons.org) I have been able to keep my medications at a minimum and actually do more activities than when I didn't have PD. (I climbed Mt. Kilimanjaro at 65, trekked to Anapurna base camp at 66, and cycled across Iowa 3 times among other things.) I find that taking one day at a time is better than getting mired in the big picture. We're all going to die. How we live is what counts.

    All the best.

  • Nan, I am 61 and also have tremor dominant PD. I was dx 3 yrs. ago but think I have had it since 2004 or 2005. I try to be active but I have had 2 hip replacements. I work as an Artist and do around 25 festivals a year, which are very physically demanding.

    I also work out and clean my house. I am curious what meds you are taking. I take 1 mg azilect, 5mg requip and 3 25/100 sinement a day.

    Thank you,

    Bmakla54

  • I started on requip xl 8 mg and was able to reduce it to 4 mg after going on the cycling program. I stopped taking Azilect when the studies were inconclusive about it slowing disease progression. I also take .5 mg of clonazapam for REM sleep behavior disorder. I cycle at 80-90 rpm for at least an hour 4-6 days per week. I see my neuro Jan 10 and expect I'll need to go to 6 mg of requip xl. Darn. Oh well, better to have it than not!

  • Thanks Nan,

    You have motivated me to start riding my stationary bike

  • I have needed a caregiver from time to time since I've had so many injuries since dx in 2002. Each time I think I'll need to move to assisted living, but then I fight my way back and I'm taking bus, cooking, etc. with help once or twice a week. You can't tell with PD

  • i was diagnosed 3 years ago taking drugs and still leading normal life

  • I was diagnosed 10 years ago, I was 60 in Nov., retired end September due to pds . But I am very busy committees/ expert patient tutor. Not having to be up & out at a set time is great. I am struggling a bit at the moment with freezing, But still do everything myself when body allows. Glass half full not half empty...mind over matter. Hard at times but don't give in.

  • I agree w nervous. an only 61 and I find regular exercise to be a huge benefit . yoga is particularly helpful physically and potentially

  • Who told you that you will need a caregiver? I, like Gool55y am also 61 and was diag 10yr ago. My dr said I may never get any worse than I was the day I was diag. I remember that every day. Be strong, active, and positive. You have a lot to think about other than negitive thoughts. Depression will cause it to worsen and make you think your are getting worse, when you are not, You're just down. We love you and know it's tough, but I see you as a strong, loving person. Prayers for you and you loving mrs tonight. HUGS!!

  • Thank you for those kind and encouraging words. By the way nobody told me I would need a caregiver, I just assumed i would.

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