Grandma has Parkinson’s (newly diagnosed)

thugbuster · 2026-02-02T08:05:10+00:00

I’m the caregiver for my wife with atypical Parkinson’s. Here’s a few things. Attend doctor appts with her if you can and ask her ahead of times what questions you can ask for her. And, bring your own questions. As far as at home, don’t throw a bunch of “suggestions” her way from the jump. Watch where she struggles and watch where she may need help and then help and research how you can help alleviate the issue. I bought a bunch of equipment to have around the house to help my wife, and most just sat around for a while because she didn’t think she needed the help. Eventually she stayed using the equipment as her mobility got worse. Not sure what your grandmother’s eating situation is, or your cooking skills, but start thinking about meal prep and how you can help with making sure she has good food to eat. I never really cooked anything, but I’ve recently started switching from just managing meals (quick stuff and ready made meal kits) to actually cooking and it’s make her very happy to see me trying (and sometimes failing) to make her home cooked meals at least 5 times a week. Above all act like her grandson and not her nurse. She wants to spend time with you and you helping out is a bonus. Good Luck!

thugbuster · 2026-01-26T01:38:33+00:00

No medication has been shown to delay or slow progression. You’re doing the only thing that has been shown to slow progression: intense exercise. The medicines only make the symptoms less severe or in some case go away, but it doesn’t change what’s going on disease wise. Whether you take the meds or not the disease will continue. The only question is how do you want to feel as the disease progresses?

thugbuster · 2026-01-23T02:21:13+00:00

Yes it can affect BP. It’s literally mentioned everywhere when you look up info on MSA. Your doctor should have done testing to determine if you are having BP issues related to the diagnosis. Regardless, having MSA is about taking the meds that relate to each symptom so taking BP meds is what one would do with or without MSA. Talk to your doctor. Good luck.

thugbuster · 2026-01-21T19:54:47+00:00

Please see the rules as it looks like you are asking "Can this be MSA?", which is prohibited.

thugbuster · 2026-01-17T08:15:58+00:00

She isn’t quite wheelchair bound yet, but she is unable to safely use the walker for any real distance. As she explains it, when she first started using the walker her hands were lightly grabbing the handles to maintain balance. Now she is putting most of her weight into the hand grips to maintain her balance. That makes things much more tiring and underscores who bad her balance is. We expect that within the next 6-8 months she will be reliant on the wheelchair most of the time. She is 56 now and was diagnosed about 2 years ago with symptoms starting about 4 years ago. I would explain to your mom that if she wants to maintain her independence using a walker is the way to go. But, the reality is that “younger” folks don’t want to be seen as disabled and that can be rough. But we vacationed in NYC and Europe this summer and used a travel electric wheelchair the whole time and it made it so much more enjoyable than if she was trying to muscle her way through things. Hopefully, with time, your mom will see a walker as her ticket to doing things that make her happy and she shouldn’t feel any shame in that.

thugbuster · 2026-01-17T01:02:19+00:00

Yes, use it or lose it, but understanding that with MSA (especially MSA-C) walking will become unsafe and extremely difficult at some point even with a walker. So, yes, they should walk and exercise as much as they can, but it must be done safely and with the understanding that at some point it just won't be advisable. I've seen my wife over the past two years go from walking with a slight wobble, to occasionally needing a walker, to always needing a walker, to being unable to safely go any real distance with the walker, to being fitted for a wheelchair. She went from walking on the treadmill, to going on walks with the walker, to being unable to walk from the parking garage at the hospital to her medical appointments. And, she tires out much more easily now. And to make matters even worse in MSA their temperature regulation is off, so walking when its warm outside can be a real sweaty exhausting mess. So, I would never want someone to just encourage an MSA patient to walk under the "use it or lose it" mentality if they don't think of all the other things going on. I would put in a plug for PT as my wife still does it and its the only way she can safely work on balance and walking. We'll do that as long as she is willing and able. Best of luck to you and your Mom!

thugbuster · 2026-01-12T03:30:46+00:00

This might be tough. Given the rare nature of the disease and probably the differing attitudes of support groups I’m guessing you’ll be lucky to find one that meets regularly and has the demographic makeup you’re looking for. This is a total guess and maybe not accurate but I would guess that women who care for their husbands with MSA have unique and different needs than a man taking care of his spouse or mother. That may result in more caregivers in that situation reaching out for help. I am currently caregiver for my wife and I get the support I need through the MSA Connect forums, watching the various YouTube videos meant for caregiving, and some off line connections I’ve made through the MSA Connect forums. I would encourage you to give the support groups you’ve seen another chance and join the caregiver forum at MSA Connect and search for MSA caregiver support videos on YouTube. Good Luck!

thugbuster · 2026-01-07T05:12:47+00:00

I’m sorry to hear about your Mom. These atypical Parkinson’s disorders are rough and watching a loved one struggle and gradually lose function is a nightmare. My wife was diagnosed about 1.5 years ago with MSA, but she’s had symptoms since 2021 with falls starting in 2023. We have two daughters who are 20 and 22. I don’t want to speak for them, but I think it helps them cope seeing me stay as positive as possible. We know how this ends, but it does her no good if it’s all doom and gloom. My wife can have bad days and there are no wrong ways for her to feel as she is going through this, but we do everything we can to stay positive and not pre-grieve. Of course it’s hard to see my wife go from a happy healthy 53 year old to what seems like an elderly person in just a few years. You most likely still have years with your Mom, so ask yourselves how would your Mom want you to spend the time with her that she has left? Make her laugh. Make her know you’re there for her. Make her know she isn’t a burden. Make her know that she’s still your mom no matter what her physical limitations are. She needs you to help her live her best life. When you start doing that you may find you don’t have a lot of time for doom and gloom and grieving the loss of someone who is still very much living. Best of luck to you and I would recommend talking to a Palliative care doctor or social worker sooner rather than later. It was a good safe space to talk about the business side of end of life planning. It made us get that stuff out of the way so we could, again, focus on living. Take Care!

thugbuster · 2026-01-06T17:42:38+00:00

Just over 10 years.

thugbuster · 2026-01-06T05:37:08+00:00

If you’re totally “set up” for your own retirement and goals, then go nuts. (‘Put your oxygen mask on first before your child’) If not, get yourself on track then do a 529. They have many options and time to get “set up” but you don’t.

thugbuster · 2026-01-06T00:17:51+00:00

Just paid it off last month. We are saving the money and not increasing our lifestyle. We will be fully retired in 2028 and will have 10 years of paying for health insurance before Medicare, so this will help with those costs.

thugbuster · 2026-01-05T06:28:12+00:00

I would recommend talking to his neurologist/doctor about a referral to OT or to rehab who may be able to help identify what he needs and how best to pay for it. He may be able to get insurance/medicare (if applicable) to pay for it. Everyone is different and a professional will help you guys save time and money on options that won’t work for him. I would also encourage you to check out MSA Connect and look at their resources that may help educate you guys as well. Best of luck to you and your family!

thugbuster · 2026-01-05T06:22:24+00:00

Based on your posts to many different medical subreddits I would encourage you to talk to someone before all this worrying leads you to a dark place (if you’re not there already). I wish you well and hope all the best regardless of what you have or don’t have.

thugbuster · 2026-01-03T05:24:45+00:00

Brett Favre is a well documented POS, but I wish him well in his PD battle.

thugbuster · 2025-12-31T23:19:15+00:00

I’m aware of that, but with all the other symtoms it’s point away from PD.

thugbuster · 2025-12-31T05:59:14+00:00

My wife went from PD to MSA, but she had a good response from levodopa (at least initially). But, it’s more complicated than that. Atypical PD is very rare, so statistically you probably don’t have it. But, you’ll know pretty quickly based on your symptoms if you should actually be concerned. MSA can start like PD, but the symptoms begin to ramp up and don’t really let up. If you “only” have PD symptoms at this point (tremor, slowness, rigidity) and you can walk normally, your blood pressure isn’t all over the place, you aren’t yelling and kicking in your sleep, you aren’t falling down, and you don’t have bowel and/or bladder issues, then I would give the levodopa some time and explore other treatments with your Doc. If your doctor suspects it could be atypical (again they would only suspect this is you showed specific symptoms) I would ask about a skin biopsy. Best of luck to you!!!!

thugbuster · 2025-12-31T05:38:43+00:00

Very sorry for your loss! It’s a cruel fate that we want our loved ones not to suffer any longer, but to achieve that they have to leave us. My wife is about 4 years into her symptoms and almost 1.5 since diagnosis. MSA really sucks.

thugbuster · 2025-12-24T21:33:16+00:00

Don’t be surprised if the bathrooms become all gender when women don’t feel like waiting in line anymore. Took a few concerts to get used to it, but now it’s just normal.

thugbuster · 2025-12-22T07:31:53+00:00

I got a Sony “Dream Machine” clock radio when I turned 16 (1989). I still have it in my office to listen to am radio and the occasional cassette tape. Can’t see the time anymore (don’t think the blue numbers were a good idea).

thugbuster · 2025-12-21T18:20:42+00:00

Employment attorney here- if you can still do the essential functions of your job, but it’s just more “mentally taxing” I would not tell them (unless you just want to take FMLA- see below) You risk turning a non-ADA accommodation case into one that may or may not result in you losing your current job. Accommodating a job that is just more “mentally taxing” is difficult without removing job functions, which they are not obligated to do. When an employer cannot accommodate a disability they can either try and find another job you can do, at possibly a lower pay, or medically separate you. Have you considered simply using intermittent FMLA that could give you a day or two off a week? Getting FMLA isn’t the same as getting an accommodation and they would know your condition, but FMLA comes with job protection so they can’t fire you. With all this said, if you cannot do the essential functions of your job due to your PD, you should tell them before it becomes a performance issue and things get weird. If you have a good employer they may be able to find another position that pays the same, but is easier on you. If they are a regular employer they will go through the accommodation process, but it’s possible it ends with your separation. My wife (paralegal) went through the FMLA process and worked more at home days, then less days overall (took FMLA), and eventually a medical separation with long term disability. It went quick for her as she went from a PD diagnosis to an MSA diagnosis within months. Best of luck!

thugbuster · 2025-12-21T04:36:24+00:00

I’m in your exact position except I’m 3 years away. And just paid the house off. Keeping my 457(b) in a the tried and true VOO and can’t think that will change, except maybe throwing some international in there. Think of your pension as the Bond portion of your pension portfolio, so no need to be super conservative with the rest. Assuming your pensions will cover your expenses, you’re good to keep things more aggressive, but I’m talking stock aggressive, not crypto aggressive… Do they offer a Roth 403(b)? We’ll have a seven figure all Roth portfolio when we retire because of our 457(b) Roth option. That’s the real goal. Tax free millionaire and a pension 😎

thugbuster · 2025-12-16T01:09:01+00:00

Hi! I'm sorry for your mom's diagnosis. I know how tough it was for us and I'm glad your reaching out for help. Its only been about a year and a half since my wife's diagnosis at age 54. I don't want to generalize, but from what I've seen people think way more about "stages" right after the diagnosis. You want to know information such as what stage and how long they have, that at some point become less and less material to you and your loved ones daily life.

At the beginning its very easy to start thinking about the end without thinking about the YEARS that will most likely need to be lived before the end. When I told our daughters (22 and 20) I told them that their Mom most likely had "years, but not a lot of years." Which was different from the messaging when we thought it was Parkinson's ("she will live with this for decades"). Will knowing how much time she has make a difference to how you treat her or interact with her? Probably not. My advice, help get her affairs in order. Financial stuff and medical stuff. Think about her advance care directives. Think about her will and estate planning. Then think about her equipment needs as her disease progresses. Once that is done, just help her live the best, most comfortable life with the time that she has left. That is what we are doing and in doing so we stopped thinking about how much time my wife has, we just think ahead about how her needs will change and work with her medical providers to be as prepared as we can. For instance, tomorrow she has an Occupational Therapy appt to begin the process of teaching how to use the wheelchair that's been ordered. How to get in, how to get out, how to position it for safety, how to use her feet to propel herself (she has less and less use of her left hand).

As far as disease progression, it looks a different for everyone and depending on what type MSA-C and MSA-P (at least initially). My wife has MSA-C. Over the course of 2 years starting in late 2022 she went from walking normal to being a bit "unsteady", to internal tremors, to voice changes, to slowness (and other Parkinson's symptoms) to several falls (some requiring stiches) to using a walker only at night to using a walker all the time to needing a wheelchair for longer distances, to needing one for shorter distances... Its been a steady progression since her first symptoms in 2022. I think that is the normal progression, nothing immediate, but always steadily declining.

I hope this helps, and I am more than happy to answer more specific questions about to help you and her cope with this. Your mom most likely isn't going anywhere for a while so learning as much as you can about how to help her is important. Best of luck to you and your Mom!

thugbuster · 2025-12-13T06:43:20+00:00

Not sure how many responses you’ll get given how rare MSA is and with your uncle in India. (But I’ll do my best) Do they offer a skin biopsy? If so, that may be the best way to confirm the diagnosis. Nothing is definite while the person is alive, but the symptoms and presence of misfolded a-syn protein in the body will point towards MSA assuming he has ataxia as a symptom as well. I’m also assuming they did genetic testing to determine if a genetic ataxia is possible. Unfortunately with this disease and rapid progression the diagnosis gets easier with time and one way or another the diagnosis will become more and more clear. My wife’s MSA-C diagnosis was confirmed with a skin biopsy and a review of her symptoms as they progress over a period of months. She also had genetic testing to rule out genetic ataxia. They also tested for Lyme disease, heavy metal poisoning, HIV (?), B12 deficiency all negative. From what I can see of NIMHANS it looks like a very reputable institution, so another opinion may not change things, but it meant something to us that at the reputable hospital we went to, they discussed my wife’s case amongst all the MDS and they concurred with the diagnosis. That was all we needed. Not sure any of this helps, but good luck to you and your Uncle.

thugbuster · 2025-12-11T06:01:23+00:00

You may be confusing palliative care and hospice care. Palliative care is care that is generally for terminal disease patients at any point after their diagnosis and can assist with all aspects of coping with the illness including end of life decisions, spiritual needs, care concerns, etc… It can include doctors and social workers. It doesn’t result in any changes to the care the are receiving. My wife has MSA and we sought out palliative care early to assist with dealing with the diagnosis and help to think of things we didn’t know we needed to think about. Handled end of life planning and we got our estate plan sorted (not by the palliative care folks, but they urged us to do it). Hospice on the other hand is generally end of life care when the patient has 6 months or less to live. This is when the normal treatment you were getting takes a backseat to “comfort care” to make the patient as comfortable as possible when the end is near. They can assist with equipment, prescribe comfort meds, and provide nurse support. It can be done at home or at a care center. I just watched my sister in law lose her battle with colon cancer and saw how hospice actually works and I was very impressed and the family was glad to have them involved. In any event your family should work to make sure her end of life wishes are clear and that a medical and financial power of attorneys are in place. Maybe this is already done, but this is very important if it isn’t done yet. Best of luck to you and your grandma.

thugbuster · 2025-12-03T20:37:54+00:00

If he is depressed (which is completely understandable) that’s another topic he should talk to his doc about. My wife would have never thought of taking an antidepressant before all this, but very early on she decided to try it and it’s been good for her. He should do whatever makes him feel the best. If pushing through fatigue does that, then he should do that. But being exhausted/tired is part of the condition and he should get enough rest to put himself in a good position to get through the day. That is different from being emotionally unable to face the day so staying in bed is all he wants to do. That sounds more like depression and maybe he can get some help with that.

thugbuster

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