So glad to hear of some of your husband's improvements, @pcolunio. Yes, I do understand how sharing information with others would help you not feel so alone. Have you checked into the Caregiver's discussion group here on Connect yet? Here is the link to those discussions, https://connect.mayoclinic.org/group/caregivers/.
While you may not find others dealing with the specific disorder that your husband has, most caregivers have similar concerns and I think you will find support there.
I am glad to read of your husband's progress, and hope with my heart that he has continued to have successes with things. After many, many...many tests and evals, my mother was diagnosed with this disease. I am happy to share our journey or answer any questions that I can. Blessings.
I am glad to read of your husband's progress, and hope with my heart that he has continued to have successes with things. After many, many...many tests and evals, my mother was diagnosed with this disease. I am happy to share our journey or answer any questions that I can. Blessings.
@hoard - welcome to Mayo Clinic Connect. You mentioned after many tests and evals your mother was diagnosed with Parkinson's plus multiple systems atrophy (MSA). Was it difficult to get a diagnosis for her?
I would like to join @lisalucier Lisa, in welcoming you to Connect. I'm just wondering if your mother was diagnosed with Parkinson's prior to being diagnosed with MSA? Often the two can be similar, especially at first.
Is your mom involved in any therapies (physical or occupational)?
Thank you! My mom was not actually diagnosed with the Parkinson's part, but the cerebellar ataxia bit. We went to U of Iowa hospitals for several baselines before coming to Mayo. They had several initial diagnoses including alcoholism (nope), stress disorders and low blood pressure, which explained the dizziness. They told us later that she was difficult to pin down because of how slowly the disease was progressing (much slower than the expected rate, apparently). There were many symptoms of Parkinson's present, but they ruled that out fairly early on. I noticed weaving and slurred speech, as early as 2009, but I know she was presenting with confusion, poor coordination, specifically handwriting, as much as a year to 18 months earlier than that. She passed away February 2018, a fierce spirit to be sure. Of course there is an ocean liner of things I have left out, but again, if our experience can be of any help, I am happy to share. I wish I had known about this platform for answers or direction.. or just support!
To answer the last bit, yes, she did physical and occupational therapies - recumbent biking, walking of course, dexterity balls for her hands and fingers... continued until the rigidity would no longer allow movement.
Thank you! My mom was not actually diagnosed with the Parkinson's part, but the cerebellar ataxia bit. We went to U of Iowa hospitals for several baselines before coming to Mayo. They had several initial diagnoses including alcoholism (nope), stress disorders and low blood pressure, which explained the dizziness. They told us later that she was difficult to pin down because of how slowly the disease was progressing (much slower than the expected rate, apparently). There were many symptoms of Parkinson's present, but they ruled that out fairly early on. I noticed weaving and slurred speech, as early as 2009, but I know she was presenting with confusion, poor coordination, specifically handwriting, as much as a year to 18 months earlier than that. She passed away February 2018, a fierce spirit to be sure. Of course there is an ocean liner of things I have left out, but again, if our experience can be of any help, I am happy to share. I wish I had known about this platform for answers or direction.. or just support!
To answer the last bit, yes, she did physical and occupational therapies - recumbent biking, walking of course, dexterity balls for her hands and fingers... continued until the rigidity would no longer allow movement.
She really was. She was a professional Girl Scout as a living, and lived it in a real way... also, her mother (another amazing woman, with a fascinating life) had an always sunny outlook...no matter what! Mother started on thickeners to varying degrees for about the last year before passing. Honey thickness at the end. We had expected much more difficultly earlier on, but it really took quite awhile to be truly disruptive.
I was initially diagnosed MSA; A few months later another doctor disagreed and changed the diagnosis to Parkensons (what a relief ). Since then when someone asks me what MSA is my response is “Parkinson's on steroids”.
(MSA is the acronym for ‘multiple system atrophy’)
I was initially diagnosed MSA; A few months later another doctor disagreed and changed the diagnosis to Parkensons (what a relief ). Since then when someone asks me what MSA is my response is “Parkinson's on steroids”.
(MSA is the acronym for ‘multiple system atrophy’)
Hello @gwgrover and welcome to Mayo Clinic Connect.
I'm pleased that you posted in the Parkinson's (PD) discussion group! I, too, am glad that your diagnosis is Parkinson's rather than MSA, I'm sure that is a relief.
I look forward to getting to know you better. If you are comfortable sharing more: How long ago were you diagnosed with PD? What were your initial symptoms of PD? Have you been involved in physical therapy (like the LSVT program)? Are your PD meds helpful?
Hello @gwgrover and welcome to Mayo Clinic Connect.
I'm pleased that you posted in the Parkinson's (PD) discussion group! I, too, am glad that your diagnosis is Parkinson's rather than MSA, I'm sure that is a relief.
I look forward to getting to know you better. If you are comfortable sharing more: How long ago were you diagnosed with PD? What were your initial symptoms of PD? Have you been involved in physical therapy (like the LSVT program)? Are your PD meds helpful?
Diagnosed July 2015. Initial symptoms prior to diagnosis were tremors in left (writing) hand. First disturbing symptoms were involuntary shaking of my legs. Physical therapy, not specifically for PD; don’t know what the LSVT program is. The first med was carbidopa/levodopa; it does a good job of controlling the involuntary leg movements. The memory med (memantine) appears to be helping.
With the legalization of hemp, I wanted to try CBD, but I appear to be allergic to it.
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So glad to hear of some of your husband's improvements, @pcolunio. Yes, I do understand how sharing information with others would help you not feel so alone. Have you checked into the Caregiver's discussion group here on Connect yet? Here is the link to those discussions, https://connect.mayoclinic.org/group/caregivers/.
While you may not find others dealing with the specific disorder that your husband has, most caregivers have similar concerns and I think you will find support there.
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Like -
Helpful -
Hug
1 ReactionI am glad to read of your husband's progress, and hope with my heart that he has continued to have successes with things. After many, many...many tests and evals, my mother was diagnosed with this disease. I am happy to share our journey or answer any questions that I can. Blessings.
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Helpful -
Hug
2 Reactions@hoard - welcome to Mayo Clinic Connect. You mentioned after many tests and evals your mother was diagnosed with Parkinson's plus multiple systems atrophy (MSA). Was it difficult to get a diagnosis for her?
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Helpful -
Hug
1 ReactionHello @hoard
I would like to join @lisalucier Lisa, in welcoming you to Connect. I'm just wondering if your mother was diagnosed with Parkinson's prior to being diagnosed with MSA? Often the two can be similar, especially at first.
Is your mom involved in any therapies (physical or occupational)?
-
Like -
Helpful -
Hug
1 ReactionThank you! My mom was not actually diagnosed with the Parkinson's part, but the cerebellar ataxia bit. We went to U of Iowa hospitals for several baselines before coming to Mayo. They had several initial diagnoses including alcoholism (nope), stress disorders and low blood pressure, which explained the dizziness. They told us later that she was difficult to pin down because of how slowly the disease was progressing (much slower than the expected rate, apparently). There were many symptoms of Parkinson's present, but they ruled that out fairly early on. I noticed weaving and slurred speech, as early as 2009, but I know she was presenting with confusion, poor coordination, specifically handwriting, as much as a year to 18 months earlier than that. She passed away February 2018, a fierce spirit to be sure. Of course there is an ocean liner of things I have left out, but again, if our experience can be of any help, I am happy to share. I wish I had known about this platform for answers or direction.. or just support!
To answer the last bit, yes, she did physical and occupational therapies - recumbent biking, walking of course, dexterity balls for her hands and fingers... continued until the rigidity would no longer allow movement.
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Like -
Helpful -
Hug
1 ReactionYour mom was a real fighter, @hoard, she set a great example, I'm sure. Did she have any swallowing difficulties that you recall?
She really was. She was a professional Girl Scout as a living, and lived it in a real way... also, her mother (another amazing woman, with a fascinating life) had an always sunny outlook...no matter what! Mother started on thickeners to varying degrees for about the last year before passing. Honey thickness at the end. We had expected much more difficultly earlier on, but it really took quite awhile to be truly disruptive.
-
Like -
Helpful -
Hug
1 ReactionI was initially diagnosed MSA; A few months later another doctor disagreed and changed the diagnosis to Parkensons (what a relief ). Since then when someone asks me what MSA is my response is “Parkinson's on steroids”.
(MSA is the acronym for ‘multiple system atrophy’)
-
Like -
Helpful -
Hug
1 ReactionHello @gwgrover and welcome to Mayo Clinic Connect.
I'm pleased that you posted in the Parkinson's (PD) discussion group! I, too, am glad that your diagnosis is Parkinson's rather than MSA, I'm sure that is a relief.
I look forward to getting to know you better. If you are comfortable sharing more: How long ago were you diagnosed with PD? What were your initial symptoms of PD? Have you been involved in physical therapy (like the LSVT program)? Are your PD meds helpful?
Diagnosed July 2015. Initial symptoms prior to diagnosis were tremors in left (writing) hand. First disturbing symptoms were involuntary shaking of my legs. Physical therapy, not specifically for PD; don’t know what the LSVT program is. The first med was carbidopa/levodopa; it does a good job of controlling the involuntary leg movements. The memory med (memantine) appears to be helping.
With the legalization of hemp, I wanted to try CBD, but I appear to be allergic to it.